Heaven Sent

Having it All

2012-02-10T01:10:00.004-06:00

The first time she said it, it stung.

"Where am I going tomorrow, Mommy?"

I never thought my child would be wondering who she'd be spending the day with. It should be with me -- her Mommy -- shouldn't it? Shouldn't it?

When Jeff and I decided to start trying for a baby, we both agreed that me being at home was a priority. At the time, I was able to finagle an "at home" work arrangement that let me do my writing during nap time and at night, with a "big girl" trip into the office once a week. I admit, it was a good gig.

But then life threw us a few curve balls and work was no longer an "option" but a necessity. And as much as I feel blessed to be able to help provide for our family, there are days when I have to fight to not get angry. To not get jealous. To not get resentful.

I am just so flipping tired.

But then there are days when I love the fact that I can grab my cup of coffee, enter my "office," and stretch myself outside of these four walls. I get to research, talk to smart people, and create something that I am good at. And get paid for it. All the while, my girls are happy and being well cared for.

In a way, it's like having it all. I know this. But at night, I find myself wishing I could be like "everyone else" who gets to enjoy some downtime instead of psyching myself up for another long night of work. I want to go to bed before 12am. Just once.

On Mondays and Thursdays, when I hear Brooklyn laughing two rooms away, my heart wishes I was the one making her giggle. I want to trade in stressful deadlines for a round or two of Candy Land, where my only worry is to not pick up the dreaded gingerbread man when I am only two reds away from sweet candy bliss.

But I know all to well that Candy Land has its own set of stresses. I've had a taste of both sides of Mommyland, and neither one is easy. Being with them all day; leaving them with someone else. It's all hard. And exhausting.

And that's the part where I actually get encouraged. Not in a "misery loves company" kind of way, but I must say it is extremely healing to realize that you are not the only one struggling to find balance. There was a time in my life when I played the "I'm busier" game, and it's very lonely. The fact is that we are all busy and trying to figure out how to enjoy the life we have been given.

I admit that many days I have to work at finding the joy. It's a choice -- plain and simple. And although my head knows the "right" perspective, sometimes my heart is just not there. And, lately, my heart just so isn't there.

But I am working on it. I am trying to accept this season of my life and how it is shaping me. I could waste my days longing for "simpler" times when I didn't have to work so hard, or I could be thankful that Kendall can run into my "office" and give me one of her awesome hugs before rest time. Some days I have wasted, but many days I am thankful that I have a job that allows me to be near my children, even if I can't be with them every second.

Today, life forced me to trade deadlines for snuggles and sniffles, and let me tell you, I appreciated every one of those snuggles. And instead of a quick hug before rest time, I got to read about princesses and ballerinas under the covers.

Yes, I was exhausted at 8pm when I sat down to begin yet another late night, but as I settled in my chair, I couldn't help but appreciate my "day off." It wasn't easier, necessarily, but it was exactly what my heart needed in order to catch up with my head. Today, I felt like I had it all.

But the funny thing is, it will all still be there tomorrow.

Rock Star

2012-02-02T20:54:00.007-06:00

They said there was no way to know her abilities. What she will or won't be able to do.

Every case is different. Every child is different.

Wait and see. Wait and see.

Well, we have waited, and now we are seeing. Seeing miracles. Perhaps through a different lens than the rest of the world, but we are seeing miracles.

From the first day she kicked those legs, to the first day she sat up, to first day she scooted across that floor, to the first day she stood tall and proud.

And now we are here. Walking. A place that looks different than I ever would have imagined, but a place that is more beautiful than I ever could have dreamed.

Of course, there will be more milestones. More independence. More work. But I have no doubt she will amaze me every single time.

Just weeks ago, they said that she was "too young" to start using a walker.

"Mrs. Bonnema, these kids with Spina Bifida aren't typically ready until 24 months, sometimes 3 years old."

Well, my dear surgeon, perhaps you have forgotten what you told me 2 years ago. Words I have hung onto every day of her existence.

Every case is different. Every child is different.

She is different

and motivated

and stronger than you or I will ever be.

And perhaps, my dear surgeon, you haven't met my God. Because He? Well, He can do anything. Through you, through me, and most certainly through these kids with Spina Bifida.

They are rock stars. Every one of them. Not because of their challenges, but because of how they overcome those challenges.

Our rock star has decided to skip the part where you fit her for a more mobile form of bracing. We will get fitted for that next week, but until then, she has decided that she's not waiting for anyone to tell her what she is able to do. All she needed was some wheels, and thankfully God provided us with a therapist who ignored her age and her diagnosis -- and only saw her abilities.

Apparently "wait and see" isn't on Brooklyn's agenda.

Yeah, total rock star.

Linking up with Small Style...
T-shirt: Okie Dokie (gifted)
Leg warmers: hand-made (gifted)
skirt: Baby Gap, niece hand-me-down
hair bow: Adornmegirl
shoes: Pedoodles, Kendall hand-me-downs

Special

2012-01-26T10:26:00.001-06:00

Most days when I look at her, I forget. I don't think about Spina Bifida, her shunt, her cathing, or her legs. I just see her -- Brooklyn -- and the beautiful spirit that she is. The way she now gives tight-around-the-neck hugs, her silly games of peek-a-boo, her fake "cries" to get attention, how she raises her little finger for "one more" book, and the way she adores every single thing her big sisters do.

But then there are other days when the tears fall fast and quick -- and I'm not really sure why. Days like today when I remember what she's been through and how it just isn't fair. How another rock star friend of hers has to go in for another surgery, and it just isn't fair. They are only children.

They are only children.

But what's amazing about all of this is that it only takes one more look at her -- at that little impish grin -- and I forget all over again. I have written before about how I don't know if I could love her without hurting a little, and I think perhaps I was wrong. Yes, I hurt for her, but most of the time I just see all of the joy, the love, and the beauty she has brought into our lives. Part of that is because of her Spina Bifida and all that has taught us, but most of that is because of who she is...something that has nothing to do with her Spina Bifida at all.

Her determination is what is allowing her to succeed far beyond any of our expectations. Her gentle spirit is what has her therapists wrapped around her little finger. Her playful attitude is what captivates her sisters' attention when they could very easily ignore her.

When people talk about their diagnosis not defining them...I get it. Now I get it. This girl is so much more than the scars on her back, her head, and her feet. She is Brooklyn.

And that is what makes her special.

Making it Work...
dress and legwarmers -- Target, Kendall hand-me-downs
shirt -- Cherokee, niece hand-me-down
shoes -- Pedoodles, Kendall hand-me-downs
headband -- Adornemegirl

About Face

2012-01-11T23:30:00.004-06:00

Kendall and I had a date with my camera yesterday, and I had every intention of getting some ~~great~~ good shots of her in my favorite dress for Small Style. But as with all things Kendall, she ended up being a goofball, and I couldn't get a good full-length shot of her. But boy did I get some close-ups, and I am in love with every one of them.

Just to be clear, when I say I am in love with them, I am not talking about the photography. I am talking purely about the subject matter. I realize I am looking at these through a Mommy Lens, but seriously, this girl is just too darn cute. I could have posted about 20 pictures, but I did my best to edit it down to my very favorites. All of them give you a glimpse of the many things I love about my Middle. She is a ham, but she also has a very tender heart.

Here are some of the many faces of Kendall:

The Face we call trouble

The ever-famous "Sharpay Face"

The Face that melts Jeff's heart

The Face that makes me giggle

The face that melts my heart

The face that makes me wonder where my baby went

The face that speaks for itself

The face that I will always remember

Oh yeah, and the dress...

(Christmas splurge: ZAZA Couture via Zulily)

Go

2012-01-10T14:16:00.001-06:00

He misses me. I can feel it.
I miss Him too.

Why does this life always seem to distract me from the things that are dearest? Why is it such an effort

to stop

when it's really all I want to do.

But I keep going -- we all do -- because sometimes stopping just isn't an option and because sometimes

we are afraid to.

Does it prove something to everyone else, to me, if I keep going? What is on the other side of busy? Perhaps I am afraid to look.

What does He think? Is He trying to tell me to stop, or is He giving me the strength to keep going? I'm not sure.

It doesn't feel right -- eyes burning, stomach churning, patience fleeting -- yet the train must keep running.

As least for now.

What does He think?

Maybe I should take the time to stop and ask Him. I mean really ask Him.

I think I will.

~Linking up with Just Write...

Sanity

2012-01-08T22:19:00.003-06:00

This, my friends, has been my sanity lately. I love, love, love my morning coffee. Like a lot. I actually find myself looking forward to my cup of coffee as I am getting into bed for the night. (Is it just me?) Of course, that may be because it's not technically night any more when I slide under those covers, but I'm pretty sure having a cup at 1am or 2am would really not be a good idea.

I have to say that things have been a little hectic around here lately, and my head is all cloudy. (Too much coffee, perhaps?) But it is really bothering me that I haven't posted anything yet this year. I have a whole "2012 word" post written in my head, but more work is beckoning me tonight, so it will have to wait a few more days.

Until then, I'll leave you with a photo of few other things that keep me sane. Well, most of the time! ;)

Enjoy your Monday coffee, everyone!

The Photo That Should Have Been Our Christmas Card

2011-12-29T20:54:00.009-06:00

Well, I didn't send out Christmas cards this year -- those stamps add up -- but I did manage to get a photo of all three of them in their Christmas outfits. And I literally mean a photo, as in 1 take, on the way out the door to church. Not bad, 'eh?

Hope you all had a great Christmas!

Making It Work...
Emma: shirt - Children's Place, skirt and leggings: via Kohl's (gifted); scarf - Justice
Brooklyn: shirt, skirt, and sweater - Children's Place, Emma hand-me-down (see Emma in it here and Kendall in it here... too fun!); red shoes -- I wish you could see them! -- Pediped, Kendall hand-me-downs
Kendall: dress - Gymboree, Emma hand-me-down

Indulge

2011-12-28T22:38:00.003-06:00

In case you haven't noticed, this blog has an identity crisis. I think that if Simon Cowell were to critique this blog, he would call it "indulgent." And it is. The tense, the tone, the perspectives are all over the place, depending on how I am feeling that day. One day I'm using medical terms with a "Brooklyn Update," other days I'm showing off our latest fashion attempt, and yet other days I'm all deep thoughts, writing poems and stories that my heart needs to get out. Honestly, this all-over-the-placeness kinda drives me nuts, yet I think that's why I like it.

I think.

You see, I have a problem with blogs. You might find that interesting since I have one, but until Brooklyn, I never really dove in and tried to "make it" as a blogger. Not that I'm trying to "make it" now, but more on that in a minute.

First of all, I think there is a fine line between sharing your story and making it a circus. How much should people really know about your life...about your children's lives? And how much do I want them to know? I'm still not sure I know the answer to that question, which is why I am hesitant to share a lot about Jeff and my other two girls.

Blogging somehow makes you an authority -- or at least people perceive you as such. And I am SO not an authority on anything. Please don't think for a second that I have all the answers -- or that I think I have all the answers. I for sure do not, and, honestly, I need just as much help as any other Mommy struggling to find balance. Most nights I lay in bed wishing for a "do-over," holding myself back from running into their rooms to apologize and hug and not rush this time that I know I will miss all too soon.

And although I know this blog is very "Brooklyn heavy," there is a reason for that. I hope you don't think that this indicates that Emma and Kendall are any less important than Brooklyn. Of course, that just isn't true. I do my best to make them feel just as special in our everyday lives because they are. I'm sure I fail a lot in those attempts, but I know in my heart I am trying.

Honestly, I think I am more comfortable writing about Brooklyn because I feel I get a little "grace" in that journey. It's new and it's fresh and it's different than most people's journeys, so I feel like bad days are a little more forgivable than my bad days with Emma and Kendall. The failures with a 4 year old and 6 year old are just so much more obvious, and I'm not sure my heart is ready to admit that I am not as good at this Mommy thing as I thought I would be. It's hard, and it's a work in progress.

Basically, I use this blog to gain perspective. I vent, yes, but I try to do so in a way that is positive because that is how I deal with things. I refuse to become bitter. At the same time, I don't want to create a perception of our lives that isn't true. We are not perfect around here. Far from it, in fact. There is a fair share of yelling, melt-downs and regrets. Maybe too many, but I am working on it. Always working on it.

I struggle to find an identity on this blog because I really don't know what it is supposed to be. What God wants it to be. I have readers, yes, but I have no idea why. I think most of it is because of Brooklyn, and I'm okay with that...I think.

I mostly struggle with what I should be writing. There are many inspiring blogs out there already (Kelle Hampton just plain rocks), and although I have opinions on parenting issues like sleep and food, I know that every family has their own way of doing things and my way isn't necessarily better. It just works for us.

I have my faith, yes, but I hesitate to get too "preachy" because my Bible background isn't as strong as I think it should be. There is a responsibility (I feel) associated with throwing out Bible verses. I do it when I feel led, but I don't want to force it or contrive something that is for myself -- and not for Him. Yet I often feel like He wants me to do more with this, which is confusing.

And then, of course, there is my real writing job...but that's a story for another day.

So what is this blog? Is this my testimony? Is it just my way of dealing with this season of my life? Does it/could it/should it mean anything more than that?

I have absolutely no idea, and until I do, I guess I will just continue to indulge and wait until God gives me an answer.

Freeze

2011-12-20T14:56:00.011-06:00

I can feel the chill finding it's way through the cracks of the storm door, but it doesn't seem to bother her. As she leans in, trying to press her head against the cool glass, I hold on tight to her stander so she doesn't tip over.

She has the most beautiful profile. I have always hated mine. It's the nose that goofs it up for me. But her nose...it is absolutely perfect.

Open fisted she bangs, bangs, bangs on the glass, desperately trying to get her sisters' attention. Kendall sees her and quickly comes up to the door, eyes peeking out between hat and scarf.

Brooklyn is giggling as Kendall approaches, and she starts jerking back and forth in her stander in excitement. Kendall opens the door with a snow-covered mitten and gives her baby sister a snotty kiss on the head.

"Careful," I say as she closes the door. Tiny fingers in door jams is one of my biggest Mommy fears.

Emma is now looking for Kendall, and the two decide to play in the driveway as Jeff sweeps away evidence of the first snow. The girls are dancing and don't seem to mind that there is merely a light dust covering the ground.

I look back at Brooklyn. She is watching them closely, smiling and cooing and I swear wishing she could be out there with them. There is a pang in my heart, and I wonder if she knows. She can't possibly, right? Not yet.

Please, not yet.

I am not ready for that day. The day that threatens to take her innocence, her joy. I will do my best to not let that happen, but there will be sadness. This I know. Jeff and I have often said we'd just like to freeze time, to let her be this age forever.

I decide that there is no reason she can't feel the snow beckoning her from behind the glass. I lay her down, get her out of the stander, and let her sit and watch the girls while I try to find a snowsuit. I quickly search through bins, only to discover that it must be in one of the bins I lent to my sisters.

Defeated, I look around at the mess I've made and see the shoe bin. I've been meaning to pull it out since Brooklyn got her casts off and decide now is a good time to go through it.

I lug the blue bin over to Brooklyn and, together, we sift through the shoes and find ones that will fit over her AFO braces. Some work, some don't. When we are finished, she is left with a pretty good shoe supply, including a pair of red shoes Kendall only wore twice. I leave them on, even though they clash with her pink outfit.

I hear the garage door open and the scuffling of boots and unzipping of snow pants. The girls are asking for a snack and the hot chocolate I promised them. I ask Brooklyn if she wants a snack, and she eagerly signs "eat" with an anxious "tst, tst, tst."

We all head to the kitchen, and I cut up some apples and scatter Cheerios on Brooklyn's highchair. She gathers them and stuffs them in her mouth all at once. I give her "the look," and she just grins, knowing exactly what Mommy's gonna say.

"One at a time, Brooklyn..."

I pour freshly made hot chocolate into mugs and top them with stale marshmallows. I warned the girls that they were stale, but they decided that stale marshmallows were better than no marshmallows at all.

I couldn't agree more. I just hope that someday, she does too.

Push

2011-12-14T23:01:00.004-06:00

So leave it to me to get on a good blogging roll and then come to a screeching halt after leaving my heart on the ~~page~~ screen for all to see.

I kinda feel like that last post needs some explanation, yet my hope was that it wouldn't need one at all. I have to admit that I wonder what ya'll thought of it. Not that this is a shameless plug for comments, but I do care what you think. Probably more than I should.

But, honestly, that's one of the reasons I wrote the last post. Lately, I've been inspired to take chances. My whole life, I have played it safe. I have followed the rules and colored like WAAAY inside the lines. I still follow rules (just ask my hubby and my 6-year-old daughter), but I realize that I need to let my crayon travel outside those boundaries every once in a while. Like many other things, it is good for the soul.

So I have decided to push myself...in my work, my writing, and my faith. Taking chances not for the sake of taking chances, but to inspire myself to do more, to leave a mark. Even it means putting myself out there.

This blog is a "risk" for me. Yes, I am a writer by trade, but I am a journalist. I deal with research, facts, and figures. I write with my head. But this, this is my heart. And that is a scary thing.

But I am pushing myself. Writing about things that might make some people uncomfortable and playing with words in ways that would make my grammar teacher rip her hair out. Yes, we're talking commas here, but it's my crayon and my journey. I'm sure yours would look different, but that's the point.

Push.

Don't get me wrong. This isn't about putting a spotlight on me or even this blog. If I only have 3 readers, so be it. It's about feeling alive. It's about amazing my God. It's about inspiring my own children to feed their passions, to not settle for cozy and comfortable.

I feel called to be more. I feel we are all called to be more.

I literally watch this little girl push herself every single day... joyfully and with much determination. There are just so many things I take for granted. So many things that are EASY.

But the blessing, my friends, isn't in the easy. It's in the hard. The uncomfortable. The more.

Push.

Making it Work... (and linking up with Small Style)

Shirt: Target, Kendall hand-me-down
Skirt: Old Navy, Kendall hand-me-down
Tights: Baby Gap, niece hand-me-down

*P.S. Putting this brown skirt with a gray top was VERY outside of the lines for me. I know, I know... nothing says "carpe diem" like a brown skirt. Let's call it "mocha," shall we? ;)

In His Presence

2011-12-06T00:06:00.009-06:00

The first thing she felt was the grass tickling her feet. It was cool, yet inviting; each blade soft to the touch, but firm enough to find its way between each of her toes. The sensation, she realized, was new. She didn't want to open her eyes -- not yet. Something made her want to savor the feeling for just a little while longer.

She stretched out her left leg and felt the tickle crawl from her feet to her ankle, up her leg, until it stopped at her knees where her dress began. She then stretched her right leg, taking the time to lengthen it ever so slowly.

Savor.

The weight of her legs was now making imprints in the soft grass, grounding her, yet the feeling pulsing through her body made her want to fly.

She opened her eyes. The light before her was blinding -- blue and white with flecks of golds and silver. Even in its brilliance, it was mesmerizing, drawing her in and making her see more clearly.

And that's when she saw Him. He had been watching her the whole time. He too had been waiting for this moment. The smile on His face mimicked the feeling spreading throughout her whole body.

Pure joy.

Their eyes met, and He nodded. It was time.

She looked down at her new body and slowly bent her knees, using her hands to push her legs up, until finally she was standing. The movement was graceful, easy. As if this was how it was always meant to be.

She looked back at Him, eyes wide, and He held out his arms. Her first step was careful and slow, but as she felt the weight of her body on the lush ground beneath her, she began to walk faster and faster, until finally she was running. Running as fast as she could until she fell into His arms and thanked Him. Over and over and over.

Thank you.

As they pulled away, His hand touched her cheek and He searched her eyes for any questions. She had none.

He smiled again.

His arms invited her to leave if she wanted to. As she looked around, she saw that some were dancing, leaping, while others sang in unison. Their praise permeated the air, creating new breath. She inhaled.

She saw others walking through the fields, laughing and talking; children skipping and running; the flowers swaying to the rhythm of their joy. Her soul warmed.

Then she saw those gathered at His feet -- peaceful and still -- and she knew where she wanted to be, just for a little while longer.

She slowly bent her knees, lowering her body back onto the grass, and simply sat in His presence. As if this was how it was always meant to be.

(Copyright, Lisa Bonnema, 2011)

************

And I heard a loud voice from the throne saying, "Look! God’s dwelling place is now among the people, and he will dwell with them. They will be his people, and God himself will be with them and be their God. 'He will wipe every tear from their eyes. There will be no more death'or mourning or crying or pain, for the old order of things has passed away.”

He who was seated on the throne said, "I am making everything new!" Then he said, "Write this down, for these words are trustworthy and true."

He said to me: "It is done. I am the Alpha and the Omega, the Beginning and the End. To the thirsty I will give water without cost from the spring of the water of life. Those who are victorious will inherit all this, and I will be their God and they will be my children."

Revelation 21:3-7 NIV

************

Spark

2011-12-02T16:02:00.009-06:00

Last week, when we were at clinic, I saw an adorable little girl in leg and hip braces, pushing a walker, and I couldn't help but smile. Her mom followed as she confidently led the way, knowing exactly where she wanted to go and almost taking a few toes out along the way. This girl had a destination!

First, it was full speed ahead to the table with the over-sized checkers board, where she took a seat with her mom. But she immediately switched gears when she spotted a waving baby. I watched as she got back into her walker and eagerly rolled over to the baby. She then flipped down her seat (that was part of the walker) and thought nothing of striking up a conversation with the baby and his family. And there she sat chatting for the next 15 minutes, beaming as much light as when she first walked in.

Clinic days are interesting. They reveal the crazy spectrum that is Spina Bifida, ranging from kids with no signs of physical challenges that are there for a quick urology check up, to incapacitated kids with feeding tubes and reclined wheelchairs. Most of the time, I leave thankful for Brooklyn's health and praying for the little ones with much bigger struggles.

When they called us in for Brooklyn's ortho appointment, I couldn't get the image of the little girl out of my mind. It was an image I have seen many times in my head, and I couldn't help but ask the question I knew better than to ask:

"I know you're only guessing, but based on what you see so far, what do you think Brooklyn will be able to do?"

Our orthopedic surgeon smiled and gently told me that it depends on the muscle strength we see in the coming months. But as I pressed her, she added that because Brooklyn is already able to sit up independently, she should be able to walk with assistance. We just aren't sure what that "assistance" will mean. There will definitely be braces of some kind and a walker involved at some point, either as a bridge to crutches or as her main mode of transportation. And, of course, there is always the possibility that she will need a wheelchair, even if it is just for long distances.

Her answers didn't surprise me. In fact, I pretty much knew what she was going to say, but something made me ask. I admit that for the last 6 months, I have basically predetermined what I think Brooklyn will do. It's not like I've completely lost hope -- trust me, I still pray BIG -- but I kind of felt like I just knew. A Mama's heart can feel that stuff.

Later that day, Brooklyn had physical therapy. Nothing special, just our typical weekly therapy. But during stretching, I watched our PT's face light up.

"I think I just felt something new twinge."

My heart stopped.

"I think I might have fired a hamstring."

Now I was choking back tears. You think I'd be used to this by now. Even now, as I write, the tears are falling.

It wasn't until that moment that I realized perhaps I had lost a little bit of hope. It's a difficult balance -- hoping and accepting. We had heard early on that maybe Brooklyn had some hamstrings, but further unofficial "tests" didn't confirm that, so I figured we were all quads. And although I want every muscle we can get, quads are all we need to walk. So I was good with that.

But to think there was still a chance for more? To think for a second that my image was wrong. Well, that was a m a z i n g.

Like anything in life, I'm not sure there is a "right" way to navigate through this journey, but I do think that a spark of hope every now and then is good for the soul, even if it turns out to be wrong.

This week, Brooklyn has started to experiment going on all fours, bending knees that never really existed when she was born. We are bumping her PT appointments up to twice a week, and I can't tell you how excited I am to see what she can do.

We also have a muscle test coming up in January -- her first one since the day she was born. I am both excited and scared to see what we find. I am fully aware the results may prove our PT wrong -- and my heart is ready for that (I think) -- but my hope, my prayers will still be that Brooklyn proves all of us wrong.

Happy weekend, everyone!

(Shhhhh!)

Imperfect

2011-11-28T23:56:00.008-06:00

I planned on going to bed early tonight, but here I sit, again, at the computer screen. I have had so many posts half-written in my head, but somehow they haven't made it onto the screen.

That seems to be happening a lot lately. I have the best of intentions, yet my follow-through hasn't been the best. I feel like I have been letting down so many people...friends, the girls, Jeff, God.

I used to think I was "anal," but with the humbling gift of children, I realized I am not at all anal -- or organized -- but I am a perfectionist. And perfectionism can paralyze you at times. You know Black Swan... that really dark, twisted movie that most people would never see again? I totally got it. Not sure I would ever see it again, but I think I was more disturbed by how much it spoke to me. Sometimes your own expectations can, well, kill you. The quest to be "perfect." It often stops me in my tracks, frozen and staring straight into the face of failure.

Real-life example: I go to Bible study on Monday nights. I am not saying this to get a notch in my belt. Actually, quite the opposite. I have been HORRIBLE about getting my lessons done. There are 5 per week and that's a lot for this season in my life. And although that might be understandable, the expectation still hovers over me...another thing that didn't get done.

It was tempting not to go tonight. I haven't done a lesson for weeks and wouldn't be able to participate. And I don't do "quiet" or "listen" well. But I went. It was our last study, and I didn't want to let myself down or disappoint my group. I made a commitment, and the least I could do was show up. Plus, I kinda wanted a Mommy night out before Jeff heads out of town for a few days.

And, of course, in all of his awesomeness, God totally spoke to me tonight. Like A LOT. He used my "listening" -- my failure to do the lessons -- to bless me. Can I tell you how much I love that about Him? How He loves me despite my many shortcomings and works to show me that my weaknesses are there to push me forward, to help me grow...not to hinder me.

To be clear, that guilt about the lessons was not Him...it was me. He, on the other hand, found a way to show me I am loved, even when I neglect to make time for the most important thing in my life. He blessed me simply because I showed up...empty-handed, yes, but with a willing heart. And truly, friends, that is all it takes.

On the way home, I ended up getting an opportunity to do something nice for two people I love very much, and it felt so good. Not just because I actually followed through on something I have been wanting to do for weeks now, but because God orchestrated a night to bless me, to encourage me. And I never even asked.

This may not be my most well-written post, nor will it have my usual "zinger" at the end, but I don't care. Today, I dedicate this post to Him. To thank Him for his love, His grace, and His patience with me as I try to figure out His will for my life. I trust that He will see my intention, and that will be enough. Tonight, I am humbled and honored to be His daughter, imperfections and all.

Standing on the Promises

2011-11-17T00:28:00.006-06:00

I kinda wish I could have posted her naked because really, I don't give a flying fig what she is wearing right now...

SHE IS STANDING!

It is wonderful and strange and humbling and absolutely amazing to see my baby standing on her own two legs. She just looks so tall, so much older, and oh so beautiful...my heart overflows.

She may need a little help for now, but it doesn't matter. I can see it now, right there in front of me. His plan. He's whispered, painted images on my heart since we found out about our rock star, but to see it happening -- with my own two eyes -- well, it is enough to send me to my knees. Or better yet, stand in awe...with my baby.

I no longer have to imagine. It is happening.

She may always need help, but that's okay. I don't care. At least not today. This isn't about what the world thinks is "normal." None of that matters. Not anymore.

It is about what He can do. What she can do. What they will do together.

It's about seeing the miracles...whether that means beating the odds, or simply taking advantage of the medical advances our generation is blessed enough to have available.

I don't care.

SHE IS STANDING.

Making it Work...
Onesie: Carter's (Target)
T-shirt: Cherokee, Emma hand-me-down
Pants: The Children's Place, niece hand-me-down

Real

2011-11-15T22:21:00.012-06:00

"Mommy, why are you putting on makeup?" she asks me, eyes wide.

I am finally getting to me. Everyone else clothed, fed, washed. I decide to put on some mascara in an effort to make an effort. Or maybe it's because the mom I will see when I drop off Kendall at her playdate is 10 years younger than me.

Through the mirror, I see that Brooklyn is still happily playing with the plastic top from my mousse and some other random blocks/toys I sprawled on the bathroom floor. Please don't hit your head on the tile. But I let her play because I know I should.

The question is still there, hanging...waiting for an answer. She asks me again, although I have not forgotten.

"Mom-meeeee, why are you putting on makeup?"

I wonder why parenting has to be so hard. Such a simple question, yet it has my head spinning. I want to be honest, yet carefully word the answer so that an impressionable young female heart isn't given the wrong message.

Why AM I putting on makeup? I guess it is a good question after all.

I muster up an answer that I am sure is all sorts of wrong, but it's all I got: "Because it makes Mommy feel good. I don't have to put it on. I just I want to."

It seems to appease her, and she disappears into my closet. I continue applying the mascara, now annoyed that they can't seem to design a brush that will actually separate my lashes without clumps.

Clunk. Clunk. Clunk.

"Look, Mommy!" she giggles. One of her famous shoe fashion shows. Today, she's chosen the camel booties that I bought 8 years ago -- pre-kids and when I worked full time and spent way too much money at Ann Taylor and Nordstrom. I'm still not sure if they will "pass" this season as booties, or if they will look like I am trying too hard and missed.

She shuffles past Brooklyn, who I now see has opened a tampon and is sucking on it. I take it away. Kendall disappears back into the closet.

Clunk. Clunk. Clunk.

Now, it's the purple boots my Mom bought me 5 years ago when I wanted something that made me feel like I wasn't a Mom. Not that I don't loving being a Mom. I just don't want to necessarily look like a Mom. Well, I guess I just want to look like a trendy Mom. Or maybe I just don't want to look old.

Emma now enters the bathroom and asks me for the millionth time if it's time for her play date. I instantly feel guilty that I forgot she was home. Then I feel guilty that I am dropping her off at a play date when she has the day off. And then I feel guilty that Kendall also has a play date on the same day. I didn't it really plan it that way. It just happened. I hosted the last two here, but I still feel bad. They are both beyond excited, which only makes me feel a little better.

The Mommy clock is ticking, and I'm starting to lose them. Brooklyn is trying to army crawl to me -- Please, please don't hit your head -- and Kendall is whining about snack. I reach for my cell phone, which is now my watch, and see that I've spent a whopping 15 minutes getting ready yet I've only managed makeup and clean teeth.

I look in the mirror, grimace at my hair, and throw it into a ponytail, deciding that I can get away with it because of the mascara.

But then I put on some over-sized earrings and grab my riding boots, just in case.

Ready for some skin!

2011-11-14T14:43:00.004-06:00

We like purple and all -- and hot pink was fun -- but we prefer to go "au natural" -- if you know what I mean. Casts off tomorrow!

Woo-hoo!!!

(Is it me, or could you just eat her?!)

Tug, Tug, Tug

2011-11-10T00:00:00.005-06:00

This one is growing up way too fast, and I am trying hard to figure out how to let go while still staying close.

This one cracks me up, but has a sensitive heart that I pray we are filling much more than we are hurting.

This one is giving me more strength these days than she will ever realize, and I am convinced now more than ever that she was meant for me -- and not the other way around.

My three loves, pulling my heart strings in all sorts of directions but somehow holding me together; tugging and mending, just enough so that the love overflows.

*****
(Linking up to Small Style at Mama Loves Papa)

Making it work...
Emma: cardigan and belt- Target; jeans- Gap

Kendall: coat- Target, Emma hand-me-down; cords- Kohls, Emma hand-me-down; shoes- Koala Kids, friend hand-me-down

Brooklyn: dress- Old Navy, Kendall hand-me-down; leggings- Gymboree, niece hand-me-down; hat- gifted, Kendall-hand-me down

Unwritten

2011-11-07T23:33:00.004-06:00

It's almost nap time, so we head over to the white rocking chair to read. I don't need the squeek, squeek as we rock to remind me that this is where I have read to two other wiggly babies. The memories of three sets of little fingers eagerly turning the pages, the smell of the tops of their heads...they are treasured and locked up tight in this Mama's heart.

I reach into the book bin and pull out one my favorites, Goodnight Moon. This is our second copy; the first one worn and torn, chewed and ripped -- just the way it should be.

I open up this newer copy, and I am taken back by what I see. The black letters are loud against the white inside cover:

To: My Baby

Love: Mommy

Merry Christmas!
12/25/09

I now remember that this is the copy I purchased right after we found out I was pregnant with Brooklyn. My first Christmas gift to her.

As I lightly stroke the inscription, I realize the words were written before we knew about Brooklyn's diagnosis. A small window of time that takes effort to recall...maybe because it hurts, maybe because I feel guilty going there. I'm not sure.

I search my heart to remember... the surprise of the news, the anticipation of telling the girls, my own naive expectations. It feels strange to go there, almost uncomfortable. I feel a loss, yet I feel no regret.

I marvel at the history behind the words -- the irony of their permanence. Words intended to never to be erased, never changed, never forgotten. Their boldness telling a story within a story. Their placement making more sense now than when I first wrote them. At the beginning...before the real story begins. A story I couldn't possibly have written, yet one He already knows. He has always known.

I feel the scrape of Brooklyn's hot pink casts on my knee, her impatience growing as she grabs at my hand, desperately wanting to turn the pages. I kiss the top of her head, sniff its fragrance, and begin to read the story.

"In the great green room..."

"For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29:11

(Linking up again to Just Write...)

Capture

2011-11-03T10:18:00.005-05:00

You know what I love about life? That once in a while it smacks you upside the head to remind you that you need to just CHILL.

Case in point: Halloween afternoon I was desperately trying to get a decent photo of all three girls together. Getting all three to look at the camera and smile at the same time was darn near impossible. Brooklyn was NOT happy, Emma kept trying to make her happy, and Kendall can't smile without looking like her eyes and teeth are in the process of exploding out of her head. Needless to say, I was annoyed and -- (a-hem) -- I let them know it. Not my finest Mommy moment.

Later, after combing through a bazillion shots on my camera, searching for a decent photo to post on Facebook, I remembered I took a few with my phone. And here is what I found...

THIS, my friends, is what I should have been trying to capture. Look at them...loving each other, interacting, having fun. THIS is what I want to look back and remember.

Lesson learned (again). Next time, Mommy plans to forget about the 432 so-called "friends" and join in on the fun that is happening RIGHT IN FRONT of her, with the three most awesome people in her life.

Have a great weekend, everyone. I hope you take the time to enjoy the awesome people in your life!

Linking up with Small Style at Mama Loves Papa (a.k.a. "Making it Work"):
Emma- Jasmine outfit: borrowed from my niece; wig: Target
Brooklyn- infant fairy costume gifted from Auntie Sha <3
Kendall- ballet recital hand-me-down from Emma; ballet shoes: Payless

Enough

2011-11-01T15:05:00.000-05:00

I sit here doing bills, and I wish

there was more.

Yet I know

there should be less.

I hate this part of life. I wish

it all could be swept under the rug and forgotten so we could just

enjoy.

But would I enjoy? Or would I too take that for granted?

There is so much I want for us,

for this world.

Yet there never seems to be enough.

But maybe,

maybe

there is.

Linking up to Just Write (and inspired by the ever-beautiful Stephanie.)

"Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?"

Matthew 6:26

Super

2011-10-27T23:12:00.009-05:00

Today, I had a "Mr. Mom" kind of day.

We all know the scene well, but let's make a few adjustments, shall we?

Let's replace the TV repairman with a dishwasher repairman; the exterminator with a physical therapist; a torn woobie with a shifted cast; a chili-eating infant with an exhausted 1-year-old totally deprived of a nap and a 4-year-old stranded at preschool in her Halloween costume (although I'm pretty sure she was more than content with some extra "Grandma time" and jelly beans...). And instead of an exploding washing machine, let's take an unexpected trip to Children's Memorial with said 1- and 4-year-olds.

Go ahead and throw in a few meltdowns and some good 'ole Chicago traffic for good measure.

By the way, it's 12pm.

And scratch the "Mr." part because he? Well, he's in Texas for the week.

So I guess my little math equation just leaves us with a "Mom" kind of day, which really makes more sense because -- haven't we ALL been here? Maybe your washing machine really did blow up (or ate your cell phone), or you found your infant eating a tube of toothpaste (we won't tell), or -- the absolute last straw -- you ran out of Pumpkin Spice creamer (because, then, you might as well be out of coffee).

But it's what we Moms (or Mr. Moms) do, right? We juggle and put out fires and pick up and drop off and get 15 snacks and wipe noses, butts, and tears all day long -- all the while we haven't eaten or gone to the bathroom or, heck, even showered for longer than we care to admit.

Yet it's these days -- the crazy, sitcom-worthy days -- that we can take a step back and say, "I did it." Super Mommy powers activated, extra limbs found, and somehow a decent meal still found it's way on the table. And as exhausting and somehow unsatisfying the world tries to convince us it all is, it's these days that I realize that I not only did it "all," but that I did it without freaking out and, more importantly, that it was totally worth it.

They are worth it.

Too often I beat myself up for what I didn't get done, what I should have done, or what I could have done better. But, today, I am waving my Super Mom flag because once in awhile, we need to do that for ourselves.

We need to do that so that we realize that this is rewarding. That these days are shaping us. That somewhere in the middle of the chaos, we are growing, getting stronger, and becoming someone He intended all along.

And even if it doesn't feel like it -- especially on days like these when no one else seems to notice -- we are worth it. We are making a difference. We are significant.

He certainly thought so, and so should you.

You are worth it.

"Charm is deceptive, and beauty is fleeting; but a woman who fears the LORD is to be praised. Honor her for all that her hands have done, and let her works bring her praise at the city gate."
Proverbs 31:30-31

(P.S. How were you "super" today? Go ahead and tell, it feels good!)

Pink Lemonade (or something like that...)

2011-10-21T14:57:00.007-05:00

So I know I'm a day late linking up with Small Style at Mama Loves Papa, but I promised hot pink casts, so here they are in all their neon glory!

Seriously, you would never know that she even had them on. Girl is making her way across the room and getting into all sorts of trouble. And we are loving every minute.

The other day Brooklyn was getting some blood work done and while we were in the waiting room, a kind woman asked about her casts. I briefly explained why Brooklyn had surgery, and she says to me with tears in her eyes, "Doesn't it just break your heart?"

I knew she was referring to seeing Brooklyn in her casts, and you know what? It doesn't. She is just so happy and is clearly handling it all just fine, so why would I waste my time being sad about it when I could spend that time enjoying my baby. Seeing her strength gives me strength. If anything, I am in awe of how awesome she is, which not only makes me proud, it gives me joy. Not the superficial "high on life" kind of joy, but real joy. Joy that brings peace, acceptance.

It is well, my friends. It is well.

Making it Work:

Dress- Old Navy (Kendall hand-me-down)

Jacket- Levi's (Emma hand-me-down)

Four

2011-10-19T01:36:00.003-05:00

Happy 4th birthday to my beautiful, lovable little Kendall.

I'm not sure if I love your giggle, your hugs, or your big heart more,

but I am so very thankful that I get to spend my days enjoying them all.

Making it Work, Splint Style

2011-10-13T20:22:00.004-05:00

It's Thursday, which means Small Style at Mama Loves Papa. As you can see, bulky beige splints don't quite make the best accessories, but we worked around them. I have some cute gray striped tights that would have been great with this outfit, but such is life. You take what you are given, and you work with it.

Because we had to be careful not to shift the splints, the last few weeks have been mostly onesies and dresses. But I have been waiting to use these sweater shorts since Brooklyn was 6 months old, and they were a great "pants" solution. The shorts are actually bloomers that went under a sweater dress a family member gave Brooklyn last Christmas. For some reason, they were way too big for her at the time, but I knew I would find a good use for them. We will for sure be wearing these a lot these next few months, whether with splints, casts, or tights.

By the way, our resident rock star is doing great these days. She got her full casts on Tuesday -- can you say hot pink?! -- and the whole thing never even phased her. I got a quick peek at her "new" feet, and although they were definitely a little...well, sore to say the least, they also looked amazing. Like real feet -- long and flat and ready for some serious standing. God is so good, people.

And now that we have hot pink casts, who needs tights anyway? Trust me, girl is working them. We'll be sure to show them off next week. Until then, have a great weekend!

Making it Work:

Shirt: Carter's (1st bday gift)

Shorts: No clue (and I'm way too lazy to track down the bin with the sweater dress)

Splints: Children's Memorial Hospital ;-)

Hello, Sunshine

2011-10-06T14:42:00.007-05:00

Well, we are back this week linking up to Small Style at Mama Loves Papa. Sorry we missed last week, but you know, we had some extra snuggling to do after the whirlwind of surgery. We did have a little excitement Friday and ended up back at the hospital with a high temp, but we were home before midnight and back in our own beds, which is always a blessing to this mama.

The temp is now gone, and our rock star is on the mend. She is already trying to figure out how to scoot around on those bandaged legs! Obviously these photos were taken pre-surgery, but trust me, we are finding ways to rock those casts. Stay tuned!

I have to admit that there is always this "down time" for me after we go through surgery or one of our Spina Bifida "reality checks." The adrenaline (and the prayers!) get me through it all at the time, but it's the "after shock" that tends to be hard on me emotionally. Life does indeed go on, but my heart needs a few days to get back into the swing of things.

Although part of me feels weak for not jumping back in full force with thanksgiving, the other part of me is starting to realize that a little "down time" is probably healthy. It gives me time to feel, to reflect. I mean, one minute I'm sending my baby off in a stranger's arms to be operated on for almost 5 hours, and the next day I'm getting Emma off the bus and searching for misplaced library books. It's all a bit much for any one person to process.

But as I seek Him to guide me through this journey, He -- as always -- is enlightening my perspective and easing the burden. The clouds are now parting, and and I am starting to see the rays of sunshine. And although I'd love to think that someday this might all become second nature to me, somehow I don't really think that will be the case. My trust in Him might grow as we get farther in this journey, but I have a feeling my human nature will always take me back to Him, asking for His help, His encouragement.

And, really, isn't that the point?

Making it Work...

Shirt: Carters (1st b-day gift)

Pants: Baby Gap (niece hand-me-down)

Shoes: Star Child from Urban Baby Runway (Emma hand-me-down)

Surgery Success!

2011-09-28T17:12:00.002-05:00

Well, we finally made it to surgery #4, and it was a success. Brooklyn is now recovering and should be heading home first thing tomomorrow morning. She is still pretty hoarse and drowsy from the anestesia, but Little Miss Nosey is too busy checking everything out and hasn't been interested in napping. She just finally decided to get some much-needed rest. I'm hoping she sleeps well tonight.

So far, she is being a good sport about her legs, and we are hoping that continues for the next 7 weeks. She will be in splints (half casts) for about 2 weeks and then full leg casts for another 5 weeks. After that, the casts come off, and we get to work on standing!

As always, thank you so much for your prayers these last few weeks. They are powerful, and they are being answered.

Much love to all of you!

On the Move: Take THAT Spina Bifida!

2011-09-25T01:26:00.003-05:00

Guess who decided to move just a few days before we put heavy casts on her legs!?!! And she did it when Mommy wasn't home, the little booger. I can barely watch this without crying my eyes out.

I wish I could describe the overwhelming sense of gratitude my heart feels, but words could never do it justice. I am so very, very proud of our rock star, and I am so very, very thankful for a God who answers my prayers.

I'll let the video say the rest.

"Be joyful in hope, patient in affliction, faithful in prayer."
Romans 12:12

Small Style: Making It Work

2011-09-22T21:39:00.003-05:00

Back in the day, I used to do a weekly blog post called Fashion Friday. It was fun way to make sure I was taking photos of Emma regularly. Then Kendall came along, and I had a hard time keeping it up. Really, I was just happy if we made it out of our pajamas every day.

By the time Brooklyn entered our world, I did master the whole getting dressed every day thing, but fashion wasn't much of a priority. I depended on bins of hand-me-downs and clothing gifts from friends and family. Needless to say, we are all about second-hand around here.

As much as I'd like to shop for my girls - I drool over Zulily and The Mini Social on a daily basis -- I just can't justify spending money if we already have bins full of perfectly fine threads. Emma is about the only one that gets anything truly new, and most of it is from her birthday and birthday money. Funds are tight and, really, how much do we need?

With all of that said, I do say that I've gotten sloppy. I've relied a little too much on predetermined "outfits" and just rewash the same old things over and over. A quick look at my Facebook pix will show you I've fallen into the same trend with my own wardrobe.

How did I get so boring? I love clothes. I know there are more important things in the world, but getting dressed should be fun and should make you feel good. I mean, I have THREE GIRLS!!! I should be having a blast. Just because I don't have a huge wardrobe budget doesn't mean we can't get a little creative.

Sooooo... I've been inspired to get out of my fashion pity-party and make the most of what we have.

Here's the plan: every Thursday I'm going to try and link up with Small Style at Mama Loves Papa. But I won't be bragging about labels here. My goal is to try to update some great oldies. I'm not saying that I will be offering you any inspiration. Really, I'm using this as a way to get me inspired...and an excuse to take more photos of my girls.

So here is the first installment. We'll title it, Bo-Ho Brooklyn.
Clothing stats at the bottom. Have a great weekend everyone!

Pants: Kee-Ka Organics, Kendall hand-me-down

Shirt: Sonoma, Ava (niece) hand-me-down

Hat: Old Navy, Ava (niece) hand-me-down

Amber teething necklace: gift from Aunt Jenni

Quick Update

2011-09-15T22:04:00.002-05:00

So, yeah, no surgery again this week due to Tuesday's fever and what appears to be an ear infection that never quite went away. That's three canceled surgery dates in one month. Annoying, yes, but really, I'm okay with it.

Granted, I was beyond frustrated Tuesday morning when I felt Brooklyn's hot head, but as the day went on, I realized it was absolutely ridiculous to be upset about not taking her in for surgery. I mean, who wants to take their kid in for surgery?

Last night, as I nursed and rocked Brooklyn to sleep, I thought about the fact that I could have been doing the very same thing in a hospital rocking chair. I could have been kissing my hubby goodbye as he headed home to our girls. Our girls could have had someone other than me tucking them in for the night and sending them off to school in the morning.

But instead, I was nursing a snuggly, sweet-smelling baby as my other two babies slept soundly next door, and my hubby waited on the couch with a cozy blanket. And I got to start my morning with all four of them piled into my bed. Really, there was no where else I wanted to be -- and for that, I was grateful.

Yes, I want to get this surgery done and over with. But it isn't an emergency (thank God!), and I don't want to send my baby off to the OR if I have even an inkling that she is not at her best. I will wait until the time is right, whether that takes another week or another month (although hopefully not another month... :)

As always, thank you for your prayers. We promise to keep you posted. Until then, there is a man and cozy blanket calling my name. Have a great weekend, everyone!

On a Star

2011-09-08T09:40:00.001-05:00

I can still feel the grit of the shingles scraping my toes, the salty tears trailing down my cheeks. The promise, the hope of the stars -- reflections of something bigger than me. Bigger than my one whispered request.

Let me find him, Lord.

Little did I know that just five years later, I would find him. He would ride up on a white horse with four wheels and steal my breath while gently asking for my heart. He would see my soul, my mind, and love every inch of my awkward frame, erasing all of the painful words of childhood.

He would boldly defend my honor and reintroduce me to my Father, making me feel safe, cherished, loved.

He would ask for my hand in our favorite place away from home, and we would eat frozen raviolis every Thursday on the hand-me-down table we positioned right in front of the TV. At times it would seem there were more fights than laughter, but always – always -- passion.

He would give me three beautiful girls, every one special and a wonderful surprise in their own way. The miracle of the first. The joy of the second. The blessing of the third.

Together, we would build our dream house, our home. A living memory box of two little girls giggling on the playroom floor, of two humbled adults crying on their knees in the office. Of a family of five grateful for sleeping under one roof.

One little request, softly spoken, yet heard. Answered. Bringing more to my life than I ever imagined, more love than one star could hold.

Happy Anniversary, sweetheart. I couldn’t dream up a better person to spend this life with. Our love isn’t perfect, but it is unconditional and it is forever.

I love you. I like you. And I hope you already know, I’m so glad I found you.

Surgery Canceled

2011-09-07T11:13:00.000-05:00

Well, unfortunately, Brooklyn's surgery was canceled today at the last minute. We have been fighting a massive diaper rash the last week and half, and it decided to flare up again this morning, prompting our surgeon to call off surgery (right before heading to the OR). Because we think the rash is bacterial, the chance of infection and complications was too much of a risk. We are hoping to reschedule for next week.

We are so sorry for the false alarm and still really appreciate all of the prayers. We are frustrated, of course, but we are trusting in God's timing. It is always perfect!

We will keep you posted on the new surgery date. Thank you all again!

Surgery #4

2011-09-07T00:54:00.002-05:00

Wow, am I feeling this post tonight. Trusting, trusting, trusting...

Prayer Request: Brooklyn's Surgery on Wednesday

2011-09-06T00:36:00.003-05:00

Once again, we humbly come to you and ask you to say a prayer for Miss Brooklyn, who will be having surgery on Wednesday. Thankfully, it is only foot surgery, but they are estimating it will take about 4 hours and, of course, she will have to be put under.

She will be having surgery on both feet, although they will most likely do more work on her left foot. The name of the procedure our surgeon will be performing is Posteromedial Lateral Release, which basically means she will be making Brooklyn's feet flat and straight. Unfortunately, the Achilles tendon surgery Brooklyn had last year to flatten her feet wasn't successful, and her clubbed feet that were corrected with the casts have started to turn in. This surgery is necessary to correct both of those things so that she will be able to properly stand and bear weight on her legs.

We also ask that you pray for Brooklyn's recovery process, as she will have pins in her feet, as well as splints and casts on her legs for 7 weeks. We aren't quite sure how this will go over with our little rock star, but we are hopeful that she will be her usual rock star self and "make it work"!

The good news is that once she is fully recovered, we will be measuring her for a stander, which is very exciting! Because she lacks feeling in her lower legs (below the knee), she doesn't quite understand that she can use them to stand. But once her feet have been corrected, we will be able to teach her body what to do by using this device. What a joy it will be to see her standing on her own two feet some day...we can hardly wait! I have a feeling she is going to love being off the ground and closer to her two big sisters!

For now, Miss Brooklyn more than enjoys sitting up and playing independently. And as of last month, she can even push herself up from the ground all by herself. We are so proud of her! She isn't attempting to crawl since her knees don't quite want to bend the full 90 degrees, but she is starting to get curious about moving around. We are working on her core strength to help her accomplish that, but it is more likely she will "scooch" or army crawl instead of a 4-point-crawl. As with all things Spina Bifida, we will just have to wait and see!

As we prepare for Wednesday, we ask you to pray for any (or all!) of the following:

1. God's protection during the surgery and as she comes out of the anesthesia
2. A successful and peaceful recovery process -- no complications
3. God's miraculous intervention to restore all nerve and muscle functions (We have to ask! :)
4. Peace for us during the surgery
5. Peace for Emma and Kendall as they spend time away from us and as they pray for their little sister

Thank you all for your continued love, support, and prayer. We cannot express how much every one of your prayers means to our family. Sending our daughter into her fourth surgery (eek!) is definitely not an easy task, but we feel God's love and power through all of you.

We will keep you all updated on how everything goes on Wednesday. Thank you so very much, and may God bless you all!

Photo credit: Erin Olson Photography

"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."
Philippians 4:7

Middle

2011-09-02T00:58:00.003-05:00

She makes me laugh, even when I shouldn't. She can rock a leotard and cowboy boots like no one else and has a charm that oozes out of every one of her dainty features.

Her imagination and determination will take her to places far beyond both of our dreams, and those dimples will make some poor boy wonder if he ever stood a chance. (He didn't.)

The drama -- oh the drama! -- is never lost on her. The more, the better. There isn't a corner of this house she hasn't used to prove her point, a floor board that hasn't felt her stomp.

Her heart is sensitive, but it is big. Her love is freely given, but she is more eager to receive (a trait Mommy will watch carefully in the years to come...).

Her snuggles in the way-too-early hours are treasured and come second only to her awesome tight-around-the-neck hugs that linger just long enough to make you melt.

Sleep ain't got nothing on her, and the excuses for her late-night ventures outside of her room usually leave us giggling and somehow promising to change Barbie into her pajamas--and tuck her in, of course.

Yes, she is victim of many middle-child parenting tendencies I promised I'd never let happen, but thankfully she is making her own mark on this world and needs little help from me.

Her voice will be heard. Her presence remembered.

I have no doubt.

Kendall, you are the child of my heart, my joy, my sunshine. Don't ever feel forgotten or insignificant. Your light shines bright, my love, and we are all so very blessed to feel its warmth.

Different

2011-08-26T09:53:00.001-05:00

I admit that lately I've been feeling like I've been lacking in the Mommy Mo-Jo department. I've been working a lot again and things have felt "off" around here. And when things feel "off" I tend to go off the deep end -- over-analyzing all that went wrong, is going wrong, and may go wrong in the future -- when really I probably just need a good night's sleep.

But last night was a good night. A night that told me everything is okay and maybe, just maybe, I can be good at this Mommy thing after all.

I have said before that my Emma is a complicated child. She is passionate and expressive in many ways, but when it comes to the deep-down feelings, she tends to tuck them away. But as with all of us, I know those emotions will find their way out one way or another, so I do my best to pay attention.

I could tell something had been bothering her all week and after a little probing about why she didn't want me to pack a rice milk box in her lunch, she revealed that she is embarrassed about her food allergies. Actually, she told me that she doesn't understand why God made her with allergies.

Now, we've already had the talk about Brooklyn and why God made her the way He did (I may or may not write about that some day), but this wasn't about Brooklyn. And, really, I loved that. As much as my mind wanted to go there, this was about Emma and only Emma. It was about her feelings about being different, which are just as important, just as real, and just as valid as the ones Brooklyn will have some day.

I know this seems obvious--and it is--but I have been worried lately that Brooklyn's special needs have been taking priority over the girls. So it was just really, really nice to focus on Emma's feelings. To know that I could still see them lurking beneath the surface and, more importantly, help her express them.

So last night, at her bedside, we had a nice discussion about how God makes us all different and unique, and how we should try our best to be proud of those differences. And if for some reason we don't like or understand some of the decisions He makes, we have to choose to trust Him and focus on our blessings. We can either choose to sit in the corner and be sad about our allergies -- which won't change a darn thing -- or we can choose to be happy and be thankful that we have lots of other foods we can enjoy.

She understood, cried, asked a few questions, and we ended it all with a few hugs. I honestly thought we had a Full House moment -- I swear there was music playing the background -- and then I asked her, "Do you feel better?"

Her response?

"Not really."

Okay then.

But somehow I think she did feel better. And if she didn't, I know she at least learned something. I know I did.

I can do this.

I may say the wrong things most of the time and at the wrong volume -- and God knows I will certainly do my share of messing up in the future -- but I am learning to see her heart. To ask the right questions. To listen.

I can do this.

Take THAT Spina Bifida!

2011-08-05T14:18:00.000-05:00

Make

2011-08-03T23:19:00.016-05:00

So I'm not really a crafty person, but I have to admit that I've had the itch to make something with my hands the last couple of years. I even asked for a sewing basket for Christmas a few years ago and was ecstatic when I also got a sewing machine. Okay, yes, it is still in its original box and collecting a whole lot of dust, but I WILL learn to use it someday. (It's on the life list, right next to learning to play the piano and touching a letter on Wheel of Fortune.)

Anyway, when I started planning Brooklyn's birthday party, I decided it was a good excuse to go a bit "Martha Stewart" and try my hand at some DIY party stuff. You know, do the whole "theme" thing and actually buy materials to make things like banners and cupcake toppers...things most sane people would buy from the store.

If there is one thing I have learned this last year it's that life is something to be celebrated. And although the party preparations totally stressed me out and only about half of the guest list ending up attending, I don't regret one of those crafts or little touches that I knew I wanted at this party. Something inside of me wanted to express -- with my own two hands -- just how beautiful life is to me these days.

How simple pleasures can mean everything.

How something as simple as tissue can turn into a beautiful flower. How colorful paper can dress up a cupcake. Or how fresh flowers in the middle of a table or a bag of gummy worms might make somebody's day a little brighter.

Yes, Brooklyn's 1-year mark gave us a lot to celebrate. "Big" things like successful surgeries and a functioning shunt, and "little" things like kicking legs and contagious giggles. But, what we have really learned is that EVERY day is a gift that should be celebrated. And perhaps more importantly, that joy is not found in what you are given, but what you make of it.

Ignore the fact that the pink flower on the left is hiding the letter "b" in "birthday." It's not a big deal...really. I mean, it doesn't bother me at all. Not at all.

(*Note: I did not make the pinwheels. Those were purchased from this crafty lady.)

A HUGE thanks to my Mom who helped me make a ridiculous number of tissue pom-poms. XOXO

The absolutely gorgeous dress made by my friend Katie that Miss Brooklyn tolerated for almost the entire party.

My three garden fairies...

Big sister making sure little sister inhales as much sugar as possible.

Not sure if she ever found the cake, but she sure did love the icing.

"Yeaaaaaahhhhh!" (One of her favorite words...second only to "Hi!")

And the big finish... showing off her latest trick -- pushing to sit!-- that managed to squeeze out a few tears from her adoring audience. (Video later this week.)

"I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well."
Psalm 139:14

A Year of Faith, Joy and Hope

2011-07-27T13:59:00.000-05:00

Happy Birthday, Brooklyn! We love you more than words could ever describe.

Seek

2011-06-03T10:49:00.001-05:00

They are as blue as the sky, but run deeper than the ocean. They look straight past your weaknesses and pull out hope and strength and faith and the I-can-do-this will you never knew you had lurking beneath the surface.

They pierce your soul and make you search, dig, and discover that what makes you "special" is hidden inside your heart and has nothing to do with the way you look, what you have, or what you can't do.

They are strong and determined and gentle and breathtaking. They inspire my heart, keep my mind focused, and encourage my spirit.

In one glance, I am reminded of the artistry of this life, of His creation. The beauty He carefully placed in all of us.

You just have to be willing to look for it.

"So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

2 Corinthians 4:18

Seeing the Promise

2011-05-26T10:00:00.003-05:00

Remember this post? Well, the other day Emma spotted this in the sky, and I'm not sure if I was more captivated by its beauty or the fact that He allowed her to see it before any of the 100 other people at the park. She spread the word, and we all stood in awe.

Yes, this photo is real, and, yes, I actually took it. But, honestly, I just clicked. The beauty...well, that's God's doing people.

Enjoy.

(Linking up to You Capture: Pretty today.)

First

2011-05-24T00:26:00.004-05:00

Today, as we played outside, she disappeared inside for a while. Just when I was about to worry, she reappeared with three cups of water in hand and the proudest smile on her face. "I got us all water," she said, glowing.

The other day, at 4pm, she asked to take a shower all by herself. At 4pm. It was important to her. I could tell. So I helped her get her stuff together, gave her a quick tutorial on how to wash her hair, and closed the door.

On Friday, she graduated from Kindergarten. My baby graduated from Kindergarten. I bought her a cross necklace as a small gift, and I was so afraid she wasn't going to like it. It was just so simple. No sparkles, no frills, no pink.

She told me she loved it. And I know she meant it.

I don't write about her much because I'm not sure it's my place anymore. She's been growing (up) so much lately. She feels so deeply and yet lives so freely...she's complicated and words just won't do her justice. She is truly the big sister, and I am convinced she is a big reason why God decided we were special enough to be blessed with Brooklyn.

I am so very proud of my baby. My first. Her Faith inspires me, her passion challenges me, and her smile reminds me of why this Mommy thing is the best thing I ever did.

I love you, Emma Kay. I see you reaching, stretching, finding your wings. And as much as my heart is aching, it is also beaming with pride and waiting to embrace you whenever you need catching.

Climbing

2011-05-14T14:23:00.001-05:00

So I realize that I haven’t been very good about updating all of you on how Brooklyn is doing physically. It hasn’t been on purpose. Most of the time, I’m just too tired to type it all out, and sometimes…well, I just don’t want to. Or, rather, I’m not ready to. But after seeing all the wonderful comments about the photos I posted a few weeks ago with Brooklyn sucking on her toes, I feel I at least owe you a quick explanation of how our little Rockstar is doing.

She has been a busy girl the last few months. She has physical therapy once a week for her gross motor skills and occupational therapy once a week for her gross and fine motor skills. She is delayed a tad on both, but that is to be expected since she is still building up her core strength. Her casts and her head size put her at a disadvantage from the start, and because she is missing leg mass (muscles), her center of gravity is off. Needless to say, she is working hard to catch up.

She can roll over from belly to back, but when it comes time for back to belly, she struggles. She tries so hard to do it, but her legs get stuck and she needs a little help getting them out of the way.

She is definitely kicking and can bend her legs at the knee, although both take some effort. It’s pretty clear that she doesn’t have any feeling in her feet or toes, but that doesn’t keep us from tickling, rubbing, and praying over them every chance we get. We’re not sure if she has any feeling between her ankles and her knees, but she definitely has feeling in her quads, as evidenced by her giggle every time they get tickled during a diaper change. According to our physical therapist, quads are all that she needs to walk.

She is THISclose to sitting all by herself, and I am so proud of how far she has come in just a few months. She no longer cries through her therapy sessions and is happily interacting with toys and her therapists. She still, however, hates tummy time, but she is starting to tolerate that more and more.

We have done some weight-bearing leg exercises, but because she lacks feeling in her feet, she doesn’t quite understand that she can support her body with her legs. So we are going to have to teach her legs what to do—and that will take time.

She will also need to have surgery in the next two months since her first foot surgery didn’t take, so she will be back in casts right around her first birthday. A bummer for sure, but the good news is that once she is out of the casts, she goes right into a stander, which gives us a huge incentive to get her feet where they need to be.

I have to admit, watching her work isn’t always easy. I know what my other girls were doing at this age – Kendall was practically walking – and I am trying hard not to go there. There is just so much that I took for granted. And then, of course, I see other babies her age crawling around and standing, and we aren’t anywhere near that.

I’m not going to sugar-coat it…all of that hurts. Up until now, the differences have been minimal. Brooklyn has been just like any other happy, kicking baby. But now…now the things we feared the most are starting to surface and, well, that can take its toll on a mama’s heart. Honestly, it has been taking a bit of a toll on all of our hearts.

But as I am learning, this is all part of the process of acceptance. I am learning it is okay to hurt and not be Miss Positive all the time because if I am really going to work through this in a healthy way, I’m going to have to admit that I do get sad. I do get frustrated. And I do get disappointed.

In many ways, I feel like we are climbing a mountain. Sometimes we are full speed ahead with our eyes on the prize, while other times we are exhausted, trying to find our way around a bump, or just need a break. All of that is part of the journey.

At this week’s physical therapy session, our therapist did something new. She propped Brooklyn’s arms up against a chair as she held her legs straight, and it looked like she was standing on her own. And in that moment, I got to experience a new part of the journey—the mountaintop.

I can’t tell you what an awesome feeling it was to get a glimpse into Brooklyn’s future. My heart felt like it was literally going to burst. I was so proud I could barely contain myself—and she wasn’t even really standing by herself.

Not yet, that is.

This journey is rough and I know it will be long, but I now know that it will be those mountaintop moments that will make every rough patch, every bump, every stumble more than worth it. As a man I respected very much used to say, “Onward and Upward!”

Blessed, Blessed, Blessed

2011-05-08T12:10:00.003-05:00

Happy Mother's Day everyone!!!!

To Not Forget

2011-05-02T23:28:00.002-05:00

Confession time...

My girls do not have baby books. Well, Emma has one, but I think I spent one day filling it out when she was like 1 month old, and Kendall's is totally empty and downstairs in the basement near the wrapping paper. (I think.)

And, well, poor Brooklyn didn't stand a chance.

That was truly why I started this blog way back in 2005. I didn't start it to become some celebrity blogger or get all sorts of free stuff (which is a good thing cuz none of those things even came close to happening); I started it because it was an online stat keeper, memory logger, and photo holder. But then I had Kendall and I realized that as much as I loved writing about my girls for fun, I couldn't do it if it meant sacrificing the time I had with them.

Now I could get all noble and say that I purposely decided that experiencing life with my kids was more important than blogging about it, but really, the decision was more along the lines of I'm-totally-overwhelmed-with-this-mommy-thing-and-I-can't-take-on-one-more-task-without-losing-my-mind.

But I'm starting to forget stuff. I can feel the little nuggets of cuteness, the stories -- their stories -- slipping away, and it scares me. Somewhere in the midst of "getting through the day," they went from my babies to little ladies that are starting school, losing teeth, and spouting the word, "whatever." And it's not so much the milestones I'm afraid of missing, it's what is sandwiched between the milestones. Those little moments that define them much more than any milestone ever will. Those moments that I know I will miss. Heck, I already miss them.

So, here is a list of random things I don't want to forget. Things I remembered today and hope I will always remember, but just in case I don't, I'll have this nice little list as a reference. Maybe I'll do this regularly - since these are clearly very short lists of the majorly cute things my girls do (a-hem!) - but I'm not making any promises. I like to keep you guys on your toes after all. (Translation: I never can seem to follow any sort of blogging schedule.)

So without further a-do, a random list of Forget-These-Not:

Emma

The way she used to say "applepines" instead of "pineapples" (still not sure how she found out the correct word...)
The way she narrates when she plays with any sort of figurines or Barbies ("Wait, Ken, wait," she said, as she ran down the stairs.)
That she read me an entire Fancy Nancy book at the age of 5 (and continues to blow me away every day)
That she prayed for Brooklyn literally every day until she was born
She lost her first tooth on April 25, 2011...when she should have been sleeping but instead was informing me that she and her sister were in fact not sleeping but were playing and she thought I should know
The way she wraps her blankie around her head like a babushka every night before bed.

Kendall

That she says "berry" instead of "very" (Our berry own Strawberry Shortcake.)
She calls leprechauns "leppermens" (and will never be corrected by me...)
Her opposing desires for all things action-packed and beautiful (i.e., she wants to either be a pirate or a ballerina for Halloween; would like her birthday theme to be cars; and wants Barbies and a pink or purple Power Ranger -- the one with the dragon -- for Christmas)
How she needs to give me "a hug, a kiss, and a mah" before bed (which is followed by a few dozen "Let me tell you somefings")
That she reminds us to do the prayer bucket every day and loves to pray for other people (especially "the people in Japan")
The way she brought down the house at her Christmas program this year (The girl has moves!)

Brooklyn

The wide goofy grin she gives me as soon as she's done nursing
The way she grips my "Mom" necklace like it's her lifeline
The giggly cry that tells me I must hold her N-O-W!!
The way she lights up when she sees her Daddy or her sisters
Her pink blanket that is now her trademark at Children's Memorial (Just ask any nurse...)
That it only takes that very blankie, a few snuggles, and the chorus of "Here I Am to Worship" to get those eyes ready for dreamland

Today

2011-04-22T14:59:00.003-05:00

We take nothing for granted around here.

Nothing.

Every smile. Every giggle. Every roll. Every kick. Every kick.

Every kick.

They are victories, every one of them. What may seem small and insignificant is evidence of a big, big God that can move mountains...and our little girl's legs.

Today, He died for my little girl. For all of my little girls.

For all of us.

He died so that one day we can have more blessings than we can fathom.

So that one day she will not only be able to feel her toes, but dance on them and praise the One who gave His life because He loved her that much.

I will make sure she knows that Truth and all that He promises her in Heaven.

His sacrifice, more than we can ever imagine. His gift, greater than we could ever deserve.

Don't take it for granted.

Foto Friday: Silly Reminder

2011-04-01T14:34:00.001-05:00

I love this picture so much I had to share it. It is just so my girls. Anyone who knows them, knows that they love to be goofy. Like ALL. THE. TIME.

At 6am... during prayer... at bedtime...

I admit, most of the time it drives me nuts.

And that is exactly why I love this photo so much.

It reminds me how much joy their goofiness can bring me...if I let it. So often I get so stressed out about what they/we could/should be doing that I forget to take a step back and enjoy the best part of my kids...

Their youth.

They are goofy, silly, at times absolutely cra-zy, but you know what?

They are fun.

All too often do I find myself squashing the silly aound here, and for what? Life is just too short.

I now have this photo as my screen saver as a reminder to make room for the silly in this house.

For laughing as I drink my morning coffee. For allowing my girls to share their joy when talking to God. And for ending the night with a giggle or two (even if, a-hem, Daddy has been out of town for 4 days...)

So a very happy weekend to all of you. May it be filled with lots of silly!

A Picture of Faith

2011-03-25T07:40:00.003-05:00

She has prayed for her. This I know. This I feel.

Brooklyn must have known it too. Their connection was real. I saw it. They felt it.

So much Faith in that creased face, in those innocent eyes.

A beautiful union of wisdom, hope.

Devotion holding tight to complete Trust. Trust grounded by dedicated Devotion.

Five generations coming full circle to illustrate all He has done. All He can do.

All I hope to be.

Embrace

2011-03-11T00:47:00.009-06:00

So the other day Jeff and Emma were having "a thing." Ya know, "a thing" that involved yelling, stomping, and a whole lot of crying. Emma was clearly in the wrong, and Jeff was keeping his cool...for the most part. He ended up leaving the room, totally frustrated.

As I listened to Emma continue to cry in her room and watched Jeff glare at me with that "I didn't sign up for this" look, I simply said, "She probably just needs a hug."

At first, he looked at me as if I was crazy. She was out of control...kicking, screaming, sobbing over wanting him to read "just one more book." But after he had time to digest what I said, he got up, walked into her room, and I heard the crying stop.

A few minutes later, he walked out and said, "You were right. She's asleep."

Now, this isn't to say I always have the right answers, and I certainly don't make a habit of hugging away the problems around here, but sometimes when things are spinning out of control and you don't know what else to do, a hug goes a long way. For everybody.

And it got me thinking. Really, isn't that a better way to approach life? Sometimes it is unfair and all we want to do is kick and scream and sob. Heck, sometimes we need to do all that. But most of the time, what we really need to do is embrace it. Grab the life that has been given to us and just live in it, dance in it, and make the most of it.

And you know what? That is definitely the kind of life I want for me. For my marriage. For my girls.

If you haven't noticed, things have been a little heavy around here lately. Too heavy. Somewhere in the midst of shunts and the everyday chaos that is motherhood, my focus got skewed. My perspective clouded.

So I have been making some changes. Real changes that are making life more manageable, more enjoyable. So far, I like the differences I am seeing, and better yet, I love what I am feeling.

Sure, some spring weather would make things even better, but I know that is just around the corner. For now, I'm just going to snuggle in my robe, enjoy the warmth of my coffee, light a yummy candle, and wait for the flowers to bloom.

That Night

2011-03-04T14:19:00.011-06:00

One year ago today was that night. I actually had to look up the date, but I knew it was coming. I could smell it in the air; I could feel it.

I've been wanting to write about it for a while now, but never really had the chance. When the opportunity arose to audition for this show, I decided it was time to get it on paper.

Unfortunately, my piece wasn't chosen for the show, but I know I was meant to write it...if only for me.

So although I am in a pretty good place right now – today – I still wanted to post this piece on the very day it happened. Perhaps to prove to myself just how far I've come in a year, or perhaps to further the healing. I'm not quite sure.

Whatever the reason, I need to post it...if only for me.

Inside Out

It was the night my heart broke. Shattered in fact. Sure it had been broken before, but this was different. The pieces were smaller, the breaks much too complex for complete and total restoration.

A new heart would have to take shape, would have to beat in spite of the cracks. Cracks that would never quite heal, but yet, were never meant to heal. This new heart, this broken vessel, would find a way to beat harder, stronger, better. After all, a mother feels from the inside out—from the day her baby starts to form inside of her until the day her baby has babies and the emotion only grows deeper. For a mother, there is a sixth sense that is all about feeling, but has absolutely nothing to do with touch.

I remember what I wore – my favorite peasant maternity top that made me feel beautiful and Bohemian and all sorts of glow-y. What I made for dinner – a warm pot of chicken cacciatore that would never quite taste as good as I hoped it would upon our return home. The slightest hint of spring in the winter air that persuaded me to leave my leather gloves in the car.

And the bounce of my four-year-old’s almost-curly waves as she skipped up the sidewalk into the entrance of the ultrasound facility.

“Do you think it’s a girl, Mom? What do you think, Daddy?”

She was so excited, our soon-to-be “double big sister.” I pretended to be. This was our third child, our surprise. I was only playing along with the find-out-the-sex game to appease my husband and our two daughters. I honestly didn’t care. I just wanted assurance that everything was okay. There was no reason to believe it wasn’t, but there were nervous whispers; whispers my head kept pushing aside, convincing my heart that it was just third-child paranoia.

But nonetheless, my heart was jumpy that day, perhaps anxious for the reformation it was about to endure. As the first image revealed a squirmy little baby, the tears started to fall and my emotions started to take over.

A feeling close to relief spread throughout my body, but the tears remained steady. “Must be the hormones,” I nervously joked to the technician.

She was chatty, the technician…until she wasn’t. I tried not to notice. Emma was getting wiggly and starting to lose interest. I could see the beating heart on the screen overhead; this was real, everything was okay…

until it wasn’t.

“Turn this way. No, this way. Wiggle your belly like this. Again. Again. Again. Okay, I’ll be right back.”

The doctor then came in, a middle-aged woman whose face told me she too was a mother.

She moved the scanner over my swollen belly and looked me straight in the eye, mustering up something deep within. “There is a problem with this baby,” she said gently.

I saw her hand touch my leg, but all I felt was a gut-wrenching pain from somewhere deep inside my soul. A familiar, but stronger pain that had nothing to do with me but had to do with the helpless life I carried. An inside, out pain that only another mother could possibly understand.

Through the darkness, I watched as my husband processed the information, his face growing white than red, twisting and awkwardly contorting into an emotion somewhere between utter confusion and total understanding. Another pain grew within me.

I saw Emma’s innocent eyes watching, watching, and I noticed her jittery feet began to dance faster. Another pain emerged.

My heart was already broken at this point; my soul aching as it desperately tried handle all of the emotions, all of the pain. None of which was my own.

Not yet.

Spina Bifida. Open Defect. Nerve Damage. Paralysis. Fluid in the Brain. Cognitive Challenges. 1 in 1,000.

The words were swimming round and round the room, on the outside, trying their hardest to penetrate, but it was too soon for that. The pain had taken over the inside. My baby. MY baby. How could this be happening to MY baby?

That night, within the safety of my bed, the pain found its way to the outside. The tears and cries lasted all night long, until the inside strength provided by my Savior rose with the sun, taking over my outside and enabling me to begin a new journey, one that was planned long ago.

In the days and months to come, those swimming words would penetrate. On the outside, a belly was growing and preparations were being made. But the real changes were happening on the inside. A beautiful life was forming for the first time, but another was forming for the second.

With every surge of pain, a mother was learning how to love deeper, live fuller, and appreciate each and every blessing. Like a magnet, the crumbled heart pieces found the space where the love pulsed deep and, slowly, built a new home. This new creation was now beating for new reasons, reasons that not only held the broken pieces together, but formed them into a shape far more beautiful than the original.

The pain also found its proper place inside; a place my heart and soul agreed upon; a place I am allowed to visit when I need to be more than a mother caring for a child with special needs, but when I need to be human.

While the reason for my pain is different, I know I am no different than any other mother who feels for her child. The mother who forces her feverish infant into a lukewarm bath at 3am. The mother who watches her toddler get rejected for the first time at the playground. The son that doesn’t make the team. The daughter whose heart has been broken. Their pain runs through our veins, takes over our organs, and provides grief stronger than we ever wanted to feel. Pain that breaks our hearts, turns us inside out, and never leaves us the same.

But it is the pain of motherhood that makes us better mothers, and even more so, better people. A confusing love-pain mix that gives our lives purpose far beyond motherhood and slowly uncovers our true self. A self that is in fact not broken, but reformed, reshaped, renewed, and wonderfully made—from the inside, out.

In Case You Were Wondering...

2011-02-28T00:19:00.000-06:00

Somebody is doing just great and is back to her happy self. As her Grandma says, "The sparkle is back!"

I'll post an update after Tuesday's MRI and fill ya'll in on the details of what's been going on with our little rock star. I know I've been a little vague, but it has been a bit of a roller coaster ride.

But we're not too worried these days. Right now, we are just appreciating and totally enjoying all the smiles and giggles.

Don't you just want to snuggle her??!!!

Trusting through the Grey

2011-02-21T09:31:00.003-06:00

Well, the honeymoon is over. We are right smack dab in the thick of what is Spina Bifida. And, honestly, it is harder than I ever imagined.

I like to call it the land of "grey." Nothing is black and white in Spina Bifida world. There are no solid answers. There are no promises. But, of course, that means we have Hope.

I know this. I've known this since the day we found out about Brooklyn's condition. Her middle name is Hope, after all. But that was before I could see her little face. That was before I fell totally and completely in love with her. And that was before she was in front of me, crying, crying, crying and I had no answers, just possibilities...

a shunt malfunction?
the wrong pressure setting?
urological issues?
teething?
reflux?
gas?
growth spurt?

I could go on and on and on. And I have. My head is spinning, my heart is aching, and I am physically exhausted. I feel weak. I hate that. I hate that there are no answers. I hate that the only way we may have an answer is waiting. And I really hate that I am using the word "hate." It is such an ugly word, but right now, it is accurate.

Tomorrow, we might get answers; we might not. I am hoping and praying with all that I am that we get some answers. I can't nurse one more minute. I need sleep. But WAY more than any of that, I want my happy baby back.

These are my feelings. As ugly as they are, they are accurate. I want to be strong. I want to be "inspiring." But the pressure needs to be released...my heart needs to feel.

But this waiting, this "grey" I speak of, I know He will use them. THIS is the character building. THIS is what will strengthen me. THIS is what will give me the Hope, the endurance to do this every minute of Brooklyn's life.

THIS is what faith truly is. It is having the discipline to TRUST when it is the last thing you want to do.

So I cried out to Him. I told Him I trusted Him until I believed the words myself. Over and over and over.

I trust Him.

Do you?

"I waited patiently for the LORD to help me, and he turned to me and heard my cry. He lifted me out of the pit of despair, out of the mud and the mire. He set my feet on solid ground and steadied me as I walked along. He has given me a new song to sing, a hymn of praise to our God. Many will see what he has done and be amazed. They will put their trust in the LORD."
Psalms 40:1-3 (NLT)

This is also posted over at The Journey.

Brooklyn Update: MRI on Monday

2011-02-06T01:29:00.001-06:00

Hi everyone!

Just a quick prayer request for Brooklyn. She will be having her full brain/spine MRI this coming Monday and has to be put under again.

Not to worry...this is just a baseline test to evaluate her anatomy and to see how her ventricles are responding to the shunt. It's an outpatient procedure -- so we should be in and out in 5 hours -- but I still ask that you pray that she comes out of the anesthesia okay and that the MRI doesn't reveal anything negative. The test is supposed to be around 11am.

As always, thank you, thank you, thank you for your prayers. Our family is so blessed to be covered by your words!

I'll keep you posted on how our little rockstar does on Monday. Until then, here's a picture of her contagious smile. Clearly, your prayers are working!

Managing our Mess

2011-02-04T01:24:00.007-06:00

I've been angry...at God.

There I said it.

But not to worry: He knows it; we've talked about it; and we're working on it.

Well, I'm working on it. Thankfully, He keeps loving me anyway.

Now, let me clarify. I've said many times that I have never been mad at God for giving our family a child with Spina Bifida. That is still 100% true. I am not angry about the Spina Bifida.

I've been angry about, well, everything else.

Let me explain. Everyone always talks about accepting your "new normal" when you have a child with special needs. And I got that. Or at least I thought I did.

I have totally accepted the fact that our "new normal" includes things that most mothers and families don't have to deal with -- constant doctor appointments, physical therapy, medication, catheters, surgeries, etc., etc. These things help Brooklyn, so I can deal with all that. (Most of the time.)

What I didn't realize is that our "new normal" ALSO includes the things most mothers and families DO have to deal with -- money issues, job stresses, lack of sleep, allergies, illness, etc., etc.

I guess I somehow thought we'd get a "pass" on some of the everyday stuff now that we had this new challenge in our lives. Like suddenly a money tree was going to fall out of the sky to pay for all the medical expenses. Or HGTV was going to show up at my doorstep and decorate my new(ish) house for free. Or that Jeff and I would become the world's best parents and know exactly how to handle a very sassy 3-year-old or a kindergartener that still has not outgrown full-out meltdowns.

Not so much.

I didn't realize all of this at first. It wasn't until some soul searching and some tearful discussions with the Man upstairs that I realized why I was in such a funk. Honestly, I guess I thought I deserved an easier life because of our challenges.

But of course, that is not true. I don't deserve an "Easy Button" any more than anybody else does. That isn't the way life works.

Life is messy.

Brooklyn is not a perfect baby. She cries a lot and most likely won't let you hold her. She doesn't sleep that great at night, has zero interest in cereal, and often pees through her outfit 10 seconds after she is fully dressed. She has reflux issues (like her sisters), and I have to avoid certain foods so she can better tolerate my breastmilk.

Granted, she is a rock star in many ways (and has the most adorable smile), but she is still a baby. A gooey, cranky, diaper-dirtying baby. But, really, why wouldn't she be? That's the way she should be. She is human, and she is wonderfully and uniquely made.

Even Jesus' life was messy. Look at his birth. Yes, we all know there was no room at the inn, but we still glamorize the whole event. Nativity scenes depict a warm cozy stable full of hay and adorable animals surrounding a peacefully sleeping baby. But the truth is, Joseph and Mary were probably in a cold, dark cave -- a common place to keep sheep and other animals in those days. A cave full of manure and animals that haven't been bathed and were probably not very understanding of the whole birthing process. Not exactly the ideal birthing scenario. Yet out of that messy situation, God brought the greatest gift of all.

So I am learning to appreciate our mess -- all of it -- and I felt it only fair to share that with you. I could hide behind this blog and pretend that life at our house is perfect and happy and full of adorable baby smiles all the time, but that's not true. It is often chaotic and sticky and most definitely messy.

But I refuse to turn this house into a pit of pity. Perspective is everything, and as long as I am talking to Him, reading His word, and accepting His grace, I am convinced this mess is going to turn out to be the life He planned for us.

Until then, I will do my best to enjoy the ride and dive straight into the goo if I have to. He will clean it up.

"Create in me a clean heart, O God. Renew a loyal spirit within me."
Psalm 51:10

"And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast."
1 Peter 5:10

We can't decide...

2011-02-02T08:31:00.000-06:00

What do we love most?

That smile...

Or those eyes...

Then there's that adorable little nose.

Oh, and her giggle. Hopefully I can share that with you all soon.

Yep, we are totally in love with this little love bug. Every inch of her!

Soul Searching

2011-01-24T12:15:00.002-06:00

I am strong.

I can do this.

I am weak.

I can feel this.

I am hopeful.

I believe.

I am forgiven.

I question.

I am blessed

Because of this.

I hurt

Because of this.

I understand

Most of the time.

I am confused

A lot of the time.

When I am less,

He is more.

When I am more,

He is glorified.

When He is glorified,

It is worth it.

Sharing the Journey

2011-01-23T09:59:00.006-06:00

I really do have so much to say -- my heart and mind are heavy lately -- there's just not a lot of time these days. But I did manage to write a quick blog over
here about our family's support system.

Our Brooklyn will never walk alone, and that's a good thing.

Disappointment

2011-01-09T17:25:00.000-06:00

Blogging over here today about disappointment, but I have a lot more to say. Stay tuned for another post later this week.

Wisdom

2010-12-16T12:22:00.002-06:00

When we brought Brooklyn home the other day, the first thing Emma did was kiss the stitches on her head. She didn't grimace like I did; she wasn't scared. She just gave her sister a little love because, well, that's what big sisters do... especially when they haven't seen their little sister in a few days.

When Kendall saw the shunt for the first time, she said, "That's so cool" and giggled. She gave her "Brookie" a quick hug and skipped off to play.

I know they don't totally get it, but in many ways, they get it so much more than I do.

They teach me so much, these little ones.

Love. Acceptance. Peace.

This isn't easy, but it doesn't have to be complicated.

I am learning that life isn't always about totally "getting it" because let's face it, sometimes "it" just doesn't make sense at all. And many times, "it" just isn't fair.

"It" is about finding the love, the joy, the giggle.

And then trusting that in time, the understanding will come.

“For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD. “As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts."
Isaiah 55:8-9

Home Safe and Sound

2010-12-12T10:19:00.005-06:00

Right before the first snowflake fell last night, we pulled in our driveway, rockstar in tow.

We are home. Thank you, God!

At first I was a little nervous about going home so quickly, but the neurosurgeons convinced me that because Brooklyn was doing so great that it was actually better for her to recover in her home environment -- it's more comfortable and it's healthier. So just 24 hours after her surgery, we were on our way home. We even got home in time to tuck the girls in bed. What a blessing.

Brooklyn is doing really well and doesn't seem to mind the shunt. Jeff and I are still getting used to seeing it. We expected it to be smaller and unnoticeable, but it is actually quite large and sticks out of the back of her head. As she gets hair, you won't be able to see it, but for now, it does take us back a little. You can also feel the tube as it travels down her body to her stomach, which is a little strange. It all still makes my knees a bit weak.

BUT it is helping her. Her head size has already come down, and the veins in her head aren't nearly as large and dark as they were. Her soft spot is truly soft and she seems to be the same old Brooklyn. I tell you that nothing brought more joy to our hearts than seeing her smile yesterday morning...her way of telling us that all is truly well.

There is a bit more to worry about now that she has a shunt, but assuming things continue on the path they are on now, Brooklyn should have a BETTER quality of life moving forward.

I do have a lot more to share, but I really want to enjoy my family today, so that will all have to wait a little while. I just wanted to let you all know that we are home and say THANK YOU so very, very, very (very!) much for all of your prayers. You have no idea what a comfort it was sending our daughter off to surgery knowing we had an ARMY of warriors praying for her. Your many prayers not only covered and protected Brooklyn, they covered and filled Jeff and I as well.

We are humbled, blessed, and forever grateful to all of you. May He bless you as you have all blessed us!

Brooklyn Update: Surgery on Friday

2010-12-08T08:10:00.005-06:00

So after 4 months of waiting it out, the time has come for Brooklyn to get a shunt. We were hoping she wouldn't need one, but her head size is continuing to grow and has reached a point where we need to intervene.

Basically, brain and spinal fluid is slowly collecting in her head, which is causing it to grow at an increasing rate. The good news is that she has never exhibited any negative symptoms due to the slow build-up, but if we don't stop it at some point, there could be complications for her down the road. It is also a good thing that we waited as long as we did because her body is now older and stronger, which decreases the chance for infection.

So the decision was made late yesterday to have the surgery this coming Friday. A shunt will be placed in the top of Brooklyn's head that will drain all the way into her stomach. Jeff and I feel confident that this the right thing to do, and trust that God will protect Brooklyn throughout this major surgery. What a peace to know that He is in control!

So far, it looks like the surgery will be at 3pm on Friday. We ask that you pray for complete success during and after the surgery and that there is no infection or adverse reactions to the shunt. Sometimes, the brain can go into "shock" after the surgery, which could cause seizures, so please pray that this does not happen. We also ask that you pray for Emma and Kendall, as Jeff and I will be at the hospital for about 2 days.

We also found out yesterday that Brooklyn's foot surgery wasn't completely successful, so she will have to have another larger surgery right before her 1st birthday, which means more casting. This was a little discouraging, but our orthopedic surgeon said the serial casting we've already done was completely successful in correcting her knees and her hips. Her feet also look sooo much better, so this is (hopefully) the final step in making them ready for walking! :)

Please know that even though the end result is not what we prayed for, Jeff and I feel God's hands in this, and we know He is still guiding our journey. In fact, God slowly prepared my heart for this news in the last few days, and Jeff is actually feeling relief. Please pray that His peace continues to fill our hearts. We never thought we'd be taking our baby in for brain surgery, but we also feel so grateful to live in a day and age where they have so many ways to heal and help our Brooklyn.

Also be encouraged that our little rock star is thriving and doing all of her baby jobs very well! She is growing like a weed and is smiling all the time. Jeff has even gotten her to giggle a few times! Her personality is really starting shine through, and we are loving every minute of it! :) Through Brooklyn, God has shown us what a precious miracle children truly are, and we feel so blessed to have a renewed perspective on life.

As always, thank you for your prayers!!! We will keep you posted on Friday's surgery.

Foto Friday: Jammies in 3D

2010-12-03T00:17:00.001-06:00

I think it's funny how much people say the girls look alike. Honestly, I only see the differences. BUT I do see a lot of Emma in Brooklyn...much more than I ever saw in Kendall.

Anyway, I thought I'd let you all be the judges. Here are all three of my little ladies in my all-time favorite jammies. Granted, Emma is only 6 weeks old, so it's not quite a fair comparison, but you get the point.

Have a great weekend everyone! Hope you get to hang out in your favorite jammies!

Brooklyn, 3.5 months old

Kendall, 3 months old

Emma, 1.5 months old

A Thanksgiving Testimony

2010-11-25T13:12:00.001-06:00

(*This is the testimony I shared at our church service today.)

Good morning, everyone. Happy Thanksgiving!

Today, I feel God called me to tell you about something very important in my life that has filled my heart with more Thanksgiving than I knew possible.

Socks.

Yep, today I am thankful for socks. Actually, white socks with hot pink ruffles, green polka dots, and the embroidered letter “B.”

A year ago, I may have thought these socks were cute, but I never would have imagined the overwhelming sense of gratitude I would feel when I finally got to put them on my 3-month- old baby.

Such a small thing, socks. But as I have learned these past 8 months, God often reveals himself in the small things just as much as He reveals Himself in the big things—if you are paying attention, that is.

You see, 8 months ago my husband and I experienced what I guess most would say is a “big thing.” During a routine ultrasound, we learned that our third child, Brooklyn, had Spina Bifida. For those of you that don’t know, it’s a neuro-tube defect that affects the central nervous system. Basically, when our baby was forming, her spinal cord failed to close properly, leaving an open defect in her back that exposed her spinal cord and caused an irregular flow of brain and spinal fluid.

The news, of course, was a huge surprise. We had two very healthy, active little girls at home already. We barely knew what Spina Bifida even was, but we quickly learned more than we ever wanted to know: Our baby may never go to the bathroom on her own. A build-up of fluid in her brain could cause cognitive challenges. She may never walk.

Big, big things we never thought would happen to us. But they did, and I can honestly stand here and tell you that I have never been mad at God about that.

From the beginning, I have felt this overwhelming peace that this is part of God’s plan—or, better yet, that He was going to use it for His glory.

Even that first night, when I lay in bed, sobbing for hours and hours, I felt God was right there with me—crying. It was the worst night of my life, yet knowing that God was in control, that He knew this was going to happen, made me cling to Him and His promises like never before. My heart was broken, yes, but when the morning came, God picked me up and, as I like to say—our journey began.

What I experienced the next 5 months of my pregnancy was nothing short of awesome. Prayer after prayer answered. Brooklyn’s legs, which at one point, were not moving, started to kick in my womb. We found physicians and specialists that were among the best in their fields. I had nurses PRAYING with me at doctor’s appointments. Hundreds of family members, friends, and strangers were sending notes of encouragement exactly when we needed them. Prayers of healing were being sent up, and my faith grew like never before. God was guiding me through every day—the good and the bad. He provided my heart with constant encouragement and gave me wonderful images of Hope that will forever be imprinted in my heart. He gave me strength to share our story, but more importantly, used my weakest moments to help me understand.

It was His plan.

And then she was born. Brooklyn Hope Bonnema. I had been so anxious to meet her, to hold her in my arms. But, of course, I couldn’t at first. In fact, I wouldn’t hold her in my arms for 6 whole days. The longest days of my life.

But in those 6 days – and every day since then—I have learned to be thankful for the little things.

Like the first time I got to feed her a bottle. Yes, she was hooked up to several machines, and was lying on a portable sleeping table, but she didn’t need an IV and she was swallowing on her own. I was thankful.

Or the first time a nurse allowed me to hold her. Yes, she was carefully positioned on a foam bed that separated her from my lap, but I was able to kiss her and feel the weight of her body on mine. I was thankful.

Or the first time I got to burp her. Yes, she had to be propped up sideways because her left leg was deformed and her back was still healing from her surgery, but I could kiss her warm head and take in her sweet smell. I was thankful.

The first time we brought her home. 18 days after she was born. We were all under one roof. Finally. I was thankful.

The first time I got to wash the upper part of her left leg after her casts corrected its position. I was thankful.

The first time I saw her beautiful smile. A smile that told me the fluid in her brain was not causing major damage. I was thankful.

The first time I held her after she came out of her second surgery, remembering I was 20 miles away during her first surgery. I was thankful.

And the first time I got to put those ruffle socks on her little feet, which were reformed and finally free of plaster casts. I was thankful.

On January 5, Brooklyn will go in for an MRI to evaluate whether or not her anatomy is conducive to a brain surgery we are now considering for her. I can tell you now, that on that day, I will be thankful.

I will be thankful for the medical professionals that will be taking care of my baby. I will be thankful for the family that will ensure my other two children are enjoying their day like any other day. I will be thankful for a God who knows the outcome of that test and every other minute of my Brooklyn’s life here on earth.

Yes, I will be thankful.

Not because I am that faithful -- but because God is that faithful.

No, I have no idea what the future holds for my Brooklyn, but I will forever be thankful that some day, the God who carried her throughout her life and mine, will lovingly embrace her as she runs into His arms.

“Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.”

1 Thessalonians 5:18

Wish Away

2010-11-12T23:16:00.004-06:00

I get lost in her face. A lot.

The warm, soft cheeks. The sweet smell. The closed eyelashes that personify peace...perfect peace.

You mamas know what I am talking about. Those stolen moments when they fall asleep and fit just so on your chest. The warmth of their body against yours and the overwhelming realization that this piece of Heaven is yours. All yours.

Tonight, as the glow of the TV screen danced in the background, I breathed her in. I tried to breathe in the peace of her slumber, but instead I was left with a confusing mix of love and sadness.

I can't possibly express to you just how much I love my Brooklyn, but I can tell you that I love her so much, it truly hurts.

And if I am being honest, sometimes I wonder if I will ever love her without hurting a little. Not because I wish something else for me, but because the more I get to know her, her personality, the more I wish something else for her.

I thought this whole acceptance thing would be easier once she got here, but in many ways, it is harder.

As most of you know, Brooklyn got her casts off this week. I was so excited -- we all were. We decorated her casts the night before -- the girls had a ball! -- and we celebrated with brownies and ice cream and a bath when they were officially off.

Now we have bare legs and toes, and for that I am truly grateful. But she also has to wear AFO braces that hide those piggy toes during the day and a full body cast that we have to squeeze her into every time she sleeps.

And, well, that stinks.

I want to be selfish and just have her legs and toes all the time. I want her to feel me tickling her feet. I want her to be able to do one of her most important baby jobs comfortably and not in a plastic mold that leaves her totally immobile on her backside.

I want SO MUCH for her. So much, that it hurts. A lot. And this is only the beginning of our journey.

As I reflected on my emotions tonight, I realized that maybe all that hurt is a sign that I'm looking at this wrong. That I NEED to get lost in her face and not get distracted with wishing away the plastic.

After all, the plastic is of this world. But her face, her legs, her toes -- those are of God.

I need to rejoice in His creation.

The hurt is of this world -- and it is temporary. But my unconditional love for her is of God -- and it is eternal.

I need to rejoice in His promise.

Yes, I wish a lot for my baby. But I can't wish away God's plans. Nor should I. He has big plans for my sweet Brooklyn, and I want to be a part of that.

I will love, and I will hurt. But I will strive to do a little less wishing and a lot more rejoicing, for some day my child will have more than I could ever wish for her. Forever.

Rejoice in the Lord always. I will say it again: Rejoice!
Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.

Philippians 4:4-7

Foto Friday: Rah, Rah, Rah!!

2010-11-05T16:33:00.001-05:00

First of all, let me just clarify that the whole cheerleader costume idea was Emma's and has nothing to do with my -- ahem -- past.

However, I must admit that I totally jumped on costume idea #107 as soon as I heard it...no princess?!!!! Whoo-hoo! Cheerleader costume ordering began 5 minutes later..before costume idea #108 surfaced.

Besides, the Bears could use all the extra cheerleaders they can get! ;)

So here they are: My three little cheerleaders. Orange and navy never looked so good if you ask me! :)

**P.S. We are soooo in trouble with this one...

Please Pray Today

2010-10-20T08:46:00.005-05:00

*Reposted from the wonderful Colleen

October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are beautiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.

So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.

We will begin at noon EST. Pray for as long as you feel led. Pray individually or with another person or group. On your knees, at your desk, while driving your car … the logistics do not matter.

Here are a few things you can pray about specifically:
1. There is one woman in particular who is on our hearts. God knows who she is. She is expecting a child with Spina Bifida, and she is afraid and considering termination. Today (Wednesday) is her appointment with a pediatric neurosurgeon to find out the severity of her baby’s case and to learn more about the diagnosis. Please pray that she will go to this appointment with an open heart and mind, that the doctor will give her a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give this woman a peace beyond understanding and a clear indication that she should keep her baby or give it up for adoption. There are many mothers willing to adopt this baby.

2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately.

3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.

4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.

5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.

Feel free to add other suggestions for what we should pray. And please pass this on to friends, family, church prayer groups, prayer warriors, pastors, and strangers.

“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.”
Matthew 18:19-20 (NIV)

2010-10-15T08:22:00.006-05:00

Three

Reasons

S M I L E!

Home Again

2010-10-13T13:51:00.006-05:00

...and resting peacefully. Thank you, God!

Surgery went well today, but I can't quite say I enjoyed one minute of it. Waking my baby out of a deep cozy sleep at 4:30am, withholding food when she was hungry, and watching a stranger walk off with her...not a fan.

BUT she was her usual rock-star self and only let us know every once in a while that she was not pleased with the situation. The surgery was nice and fast, and she didn't get sick from the anesthesia. She was pretty out of it when I first saw her, but after a little snooze and some nursing, she was back to normal...just a bit sleepier. And I really can't complain about that since it just means extra cuddles for Mommy today. :)

So another success for our little Brooklyn! Thank you, thank you, thank you for your prayers. We are very blessed to have them.

Surgery #2

2010-10-12T21:20:00.001-05:00

Hi everyone! Just a quick update to let you all know that Brooklyn is having her second surgery tomorrow morning (Wednesday) for her clubbed feet.

As I have mentioned, she has been in casts for the last 6 weeks, and we are now nearing the end of the process. During tomorrow's surgery, they will cut her Achilles tendon to stretch it out and bring her feet up a little. She will then go back into casts for 3 weeks straight (up until now they've been changed every week), then she will be fitted for her braces. Once her braces are ready, the casts come off for good! That means we get to rub those piggy toes again and watch those miracle legs kick. We can't wait!!!

Tomorrow's surgery should be a minor outpatient procedure, but it does require anesthesia, so we ask for your prayers that all goes well. Also, the casting process only has about a 50% total success rate in children with Spina Bifida, so we ask that you pray that we are in the positive 50% (otherwise, there are more surgeries in our future).

We are a little anxious about our baby having her second surgery in just 2 months, but we are thankful that this one is minor and will hopefully get those feet ready for some future walking!

We will keep you posted tomorrow, and as always, thank you for your prayers!

Foto Friday: Wonderfully Made

2010-10-08T09:28:00.006-05:00

She hates laying on her back and usually screams when you change her diaper.

She loves sleeping on her side and gives me a nice 7-hour stretch at night.

She eats like a champ, but spits up. A LOT.

She is fussy for a good hour after she eats, but as long as you keep her upright, she chills out.

She loves noise and sleeps right through the chaos of two very busy sisters.

She smiles and coos, but usually only when looking at ceiling fans and right before she spits up.

She wakes up VERY hungry and has the most adorable complaining cry. (I admit, I often wait to feed her for a few seconds just so I can hear it. ;)

She loves her sisters and tolerates all of their rough lovin' very well.

She actually enjoys tummy time and has been known to take a little snooze while on her stomach (gasp!)...

She likes it when you rub her head, hold her hands, and sing softly in her ear.

She has the softest, warmest cheeks that are beyond kissable.

She is Brooklyn. And we love her just the way God made her.

I praise you because I am fearfully and wonderfully made;
your works are wonderful, I know that full well.
Psalm 139:14 (NIV)

Good

2010-09-29T20:06:00.004-05:00

Today we ate dinner outside. The calendar says Fall, but it sure felt like summer, so we treated it like summer. We even had watermelon for dessert.

It felt good. Celebrating summer for all of its warmth, fun and sunshine. A final goodbye if you will. The leaves are falling and starting to change, but we needed a family send-off...all five of us.

It felt good. To remember. To move on.

Brooklyn got a new binkie today...a big-girl Nuk and not the NIC-U soothies she's been using for the last 2 months. She liked her new binkie just fine and didn't really seem to notice a difference. But I did.

It felt good to throw away the old binkies. It felt REALLY good.

...embracing change while remembering the seasons that got us to where we are now. And being thankful for today. For right now.

It feels good.

**Photo by the lovely Brookelyn***

Answered Prayer #2

2010-09-26T00:16:00.004-05:00

I am writing this post for all of you, but I am also writing it for me. I need it. I have been struggling lately, and I too need to be reminded of these answered prayers, even when I am living with them every day.

I am grateful, but I want to be honest. This is hard.

If I haven't mentioned it yet, Brooklyn is wearing casts on both of her legs. They cover her entire legs -- from the waist down -- and they are true casts...like the ones you or I would wear. Heavy, heavy casts that add about a pound to my little baby. They clink together when I pick her up, and they scratch my belly when I try to burp her. There are no cute toes to tickle, and baths involve plastic Jewel bags and a wash cloth.

I miss her legs, her soft legs. I miss rubbing her piggy toes, praying that she could feel my touch. I miss the excitement of watching her legs kick and bend...grateful for every single movement. They weren't perfect legs, but they were warm and they were hers.

I thought that getting her started on the casting would be exciting. That we were getting her body ready for all the walking she'll be doing some day. But every week, when I watch a man take a saw to my baby's legs and then reapply heaps of plaster like some sort of art project, it all just feels so unnatural. A baby shouldn't have to go through this. A Mama shouldn't have to look at little swollen and bruised feet and the occasional open sore. She shouldn't have to feel both grateful and sad that her baby is not feeling any pain. It is hard, and it is unfair.

But you know what? It is working. Every time those casts come off, I see swelling, but I also see her little legs starting to take shape. Little creases are appearing on the backsides of her legs, and knees are forming before my very eyes. And better yet, THEY ARE BENDING!!! About a month ago, when we started the casting process, Brooklyn's left knee could not bend at all. In fact, it was hyper-extended, so we started at less than 0% "flexion." Now? Well, we can bend that knee a whopping 70%, and we are only half way done. How awesome is that?!

The weight of the casts have also put her hips in place, and her feet are slowly starting to move into position. Both feet were severely clubbed, but she developed pressure sores after the first few castings, so we have to take it slow. But we are seeing progress. There is a 50% chance that this casting process will not "stick" and that Brooklyn will still require surgery for her clubbed fee, but with the way our prayers are working, I'm hopeful we will see total success.

So how is all of this an answered prayer? Well, for those of you who have been following our journey since the beginning, you know that our first few ultrasounds showed no movement in the legs. It wasn't until our fourth ultrasound -- and lots of prayer! -- that a technician verified some movement. And then when Brooklyn was born, she was kicking away and even bending her right knee all by herself.

We know that she has hip flexors and quadriceps muscles, but it has been questionable whether or not she has "glutes" and it was pretty well agreed that she didn't have hamstring muscles.

BUT...

Last week when they were getting ready to put on the new casts, the orthopedic surgeon and I were discussing our next steps and she agreed that Brooklyn probably didn't have hamstring muscles. I hated hearing it, but I wasn't shocked. However, when they began applying the new cast, Brooklyn started to kick and fuss and I saw a smile come across our surgeon's face. "I don't want to get you excited, but I actually think I may be feeling a little hamstring here," she said.

What?! Wooooooo-whooooo! Of course, we have no idea if there is any strength in that muscle, but right now, I don't even care. Hope is what my heart has been surviving on this whole time, so I am taking that bit of news and rejoicing for all that it could mean for my baby. She is not going through this for nothing. As our ortho surgeon has told us, "She will be a walker."

And thanks to your prayers, I truly think she will be. While we were once told our child may be paralyzed from the waist down, we have now seen kicking legs, bending knees, and now maybe even working hamstring muscles. I mean, seriously, who knows what the future holds for our little peanut. NOTHING is impossible with our God.

I hold tight to these hopeful bits of news, but I am human and I admit that I still ask God for more. I don't want to get angry, so I ask for understanding. He often answers by revealing parallels that keep me humble and assure me we are not alone.

While odds are most of you are not waking up at 5am to get to the orthopedic surgeon, you are being "casted" as well. We are all are going through some sort of hardship, and if you allow Him to, God can use those hardships to mold you into the person He intended all along. There may be swelling and bruising along the way, but in the end, when the cast is removed, lives can be changed and God can be glorified. You just have to allow Him to do His work.

Do I hate those casts? Yes I do. Do I hate that there has to be sores and swelling and bruises to get to the end result? Yes I do. Will I miss them? Not at all. But these casts are giving our baby a fighting chance of beating all the odds. A chance to walk in faith, dance with praise, and stand in awe of a God who can heal us all.

Yet, O LORD, you are our Father. We are the clay, you are the potter; we are all the work of your hand.
Isaiah 64:8 NIV

His Ways Are Not Ours

2010-09-12T12:43:00.006-05:00

Blogging about detours today at The Journey...

Answered Prayer #1

2010-09-08T00:03:00.001-05:00

So I decided to write this little "series" on answered prayers for several reasons. First, I want to finally update all of you on Brooklyn's condition without it getting too overwhelming and complicated (for you and for me). Second, I want you to see that God can and does heal (and is very creative in doing so). And finally, I want you to know that YOUR PRAYERS ARE WORKING!

The first major answer to prayer is that Brooklyn still does not have or need a shunt (a tube that drains any spinal fluid that builds up in the brain). This is a HUGE plus. As I've stated in the past, shunts can definitely save lives if they are needed, but they can also cause death if there is a malfunction that goes undetected. In fact, the mortality rate of children with Spina Bifida is 25% -- which is pretty high -- and the majority of those deaths have been attributed to undetected shunt malfunctions/infections.

In the past, children born with excess fluid in their brains were instantly shunted. However, as I've explained in previous posts, our neurosurgeon and her team believe that if given a little time, some children's bodies can find a way to deal with the excess fluid...and that is EXACTLY what Brooklyn is doing.

The reason this may be surprising is that Brooklyn's ventricles were quite large in my womb already (in the "severe" category), meaning that there was already quite a bit of fluid build-up in her brain. However, in my womb, she was also leaking some fluid out of the hole in her back (where her defect was). That means that post-surgery -- when they closed up that hole -- odds were that her ventricles and the fluid build-up in her brain were only going to increase since there was no leakage point to help "deal" with the fluid. All of those factors considered, the chances of Brooklyn needing a shunt were very, very high.

But God is so good. Get this: Brooklyn's ventricles have not changed AT ALL since her surgery. They have literally not budged in size. This is not typical. The neurosurgeon expected at least some increase, but instead, Brooklyn's ultrasounds have been "stone-cold stable." The look of subtle surprise on our neurosurgeon's face told me all I needed to know: Our prayers were being answered.

Now, there is a chance that Brooklyn may still need a shunt down the road. But every day she goes without one is a very good thing. The older and stronger she gets, the chances a malfunction or infection decreases. Some kids end up with hundreds (yes, hundreds) of shunt revisions because of infections and malfunctions, and we certainly don't want that. So every day Brooklyn goes without a shunt is a blessing.

Although we know what the future could hold, we remain hopeful. Our peanut's head is pretty large (95th percentile), but as long as it stays within the growth curve and she doesn't start to exhibit any symptoms that there is pressure in her brain, we are in the clear. The goal is to get through the first year of Brooklyn's life without a shunt. If we can do that, then odds are she will never need one. Wouldn't that be awesome?!

Our neurosurgeon has told us that if we don't shunt Brooklyn, she will most likely have a larger head (called macrocephaly), but that is not the end of the world. She's gaining weight like a champ, so she's "growing into it" quickly. :) And, quite honestly, we think she is cute as a button just as she is!

So there you have it. Your prayers are being answered!

And although you have all certainly done your part here, I can't help but ask for more prayer. I mean, they are working people!

So...we humbly ask that you continue to pray that Brooklyn won't need a shunt and that the fluid that is in her brain now does not cause any major cognitive challenges for her.

I can tell you with all of my heart that I will never ever again underestimate the power of prayer, and I hope Brooklyn's story encourages you to never underestimate our God. He hears and, yes, He answers.

And I will do whatever you ask in my name, so that the Son may bring glory to the Father. You may ask me for anything in my name, and I will do it.
John 14: 13-14

Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.
James 5:16

Home Again

2010-09-01T00:59:00.003-05:00

As most of you know, we are home!! As in, all 5 of us are now under one roof. I apologize for not posting the last several weeks, but, honestly, we have been busy being a family. :)

I also admit that these last several weeks have left me with a lot of raw emotion I am still working through. When I decided to start writing about Brooklyn and our journey, I made a promise to myself and to God that I would only write when I felt lead to do so. I didn't want this to be contrived or sugar-coated. I didn't want to put on a show or write what I thought people wanted to hear. I wanted to be honest and share what God wanted me to share when He wanted me to share it. (Got all that?!)

So I haven't written. But that is about to change. God revealed a lot to me today, and I am encouraged to share again.

Because it has been a few weeks, there is a lot to tell, so I think I'm going to do a little "mini series" on how God has answered our prayers. Brooklyn is truly a testament to His power.

So stay tuned the next few days for updates on our little rock star and all that God has done because of YOUR prayers.

So good to be home again!

An Update…Finally!

2010-08-05T20:49:00.003-05:00

I am so sorry it has been so long since we have posted an update. It has been a little crazy as we adjust to our “new reality” of jumping between hospital and home. I wish I could say that it has been easier than I thought it would be, but in all honesty, it’s been harder. I think I’ll need to vent about that at some point, but for now, I’ll just give you the scoop on our little Brooklyn.

Overall, she is doing great! She has been out of the NICU since last weekend and has been hanging out on the neurology floor. Since her vitals were so good, they actually wanted to move her out of the NICU even sooner, but there were no beds available on the neuro floor. Now that we are finally here, we love it! The nurses on this floor are absolutely amazing. They all make a big fuss over our pretty little Brooklyn and take great care of her (and us too!). I am convinced now more than ever that nurses have a special place waiting for them in heaven. They make such a difference.

The best news is that so far, Brooklyn doesn’t need a shunt (a tube to drain the fluid from her brain). This means that although she was born with fluid in her brain and larger than normal ventricles, her head has remained relatively stable since her surgery. To check this, they are measuring her head daily and then sending her for ultrasounds a few times a week. Although it looks good so far, our neurosurgeon isn’t quite convinced that we are in the clear, so we are waiting it out until we get some hard evidence one way or the other. And, unfortunately, even if we do go home without a shunt, that doesn’t mean she might not need one down the road. With Spina Bifida, you literally need to take it day by day. We can celebrate meeting our milestones, but sometimes there are setbacks down the road. It’s a waiting game. But as my wise Grandma has said: When we get good news, we will praise God, and when we get not-so-good news, we will say, “He is in control.”

Brooklyn is eating extremely well and gaining weight. She is nursing when I am in the hospital with her and drinking bottles of breast milk when I can’t be there. Pumping has become a full-time job, but I am determined that Brooklyn will get the same benefits as her sisters did, even if she can’t get it directly from me all the time. So far, we are finding a way to make it happen, which makes this Mama very happy. She will have a swallow study with a speech therapist tomorrow, but that is more of a precautionary measure. Brooklyn has shown absolutely no problems sucking or swallowing. She latched on right away and barely spits up – even without being able to get burped!

Her urological tests have come back okay, but she does need to have a catheter four times day. She can go to the bathroom on her own, but some of her tests have shown that she’s not getting rid of it all, so we need to help her out so that she doesn’t get backed up. She doesn’t seem to mind it though and usually sleeps through the whole ordeal. That is, at least for now… ;)

Physical therapy and orthopedics keep trying to sneak in to see Brooklyn, but our neurosurgeon keeps pushing them off so we can focus on her back and her head. Jeff is anxious to get going on her therapy and casting, but until Brooklyn’s back is totally healed and they decide if/when she needs a shunt, we’ll just have to be patient.

Right now, they are categorizing Brooklyn at as an “L3” or “Lumbar 3,” which means she has some leg movement and above-average quadriceps and hip-flexor strength. She might be an “L4” (which is even better), but we aren’t sure if she has hamstring strength. Because her quads are much more developed than other babies her age, it’s hard to tell if the hamstrings are functioning or not. The same thing with her glutes, although our therapist thinks it looks like Brooklyn has a booty. ;) Only therapy and time will tell exactly what Brooklyn is capable of and what her muscles can do. Again…we have to wait and wait some more.

Our sweetheart’s legs and feet are little “twisty, twisty” as we like to say, but our therapist seems to think most of that will be corrected by casting (as opposed to surgery). We’ll have to wait until our neurosurgeon says “go” before we get specifics on this aspect of her care. Until then, we are just rubbing those piggy toes and praying over those legs every chance we get.

I wish I knew when they expect our peanut to come home, but we have no idea. One nurse speculated early next week, but we will wait to see. I admit, I’m guarding my heart on that one…unless I hear it from the neurosurgeon directly and she has discharge papers in hand, I am not going there. I just can’t take the possible heartbreak.

We are, however, working toward that goal. Jeff and I are taking a mandatory infant CPR class tonight, and I have been learning a lot from the nurses to prepare me for when we get home. I’ve learned how to feel for her soft spots (to make sure they are not bulging or filling up with fluid), how to measure her head (to check her ventricle size), how to change her diaper (her legs and surgery site make this an art form!), and how to catheterize her (yep, I did it...twice!).

Before she goes home, Jeff and I will have to stay overnight and care for her without the nurses’ help, and Brooklyn will have to pass a “car seat challenge.” This means she’ll have to be able to handle sitting in her car seat for the time it takes to drive to and from the hospital.

So that’s about it for now. We will be sure to update you if there are any new or big developments, but right now we are just waiting it out. Please continue to pray that Brooklyn’s head won’t swell and that her legs will have as much movement as possible. We also ask you to pray for our family as we try to adjust to lots of time apart. The girls are hanging in there, but it hasn’t been easy on them. Jeff and I are also emotionally and physically exhausted. Please pray for our strength!

Thank you all for your support these last 9 days. Jeff and I feel so blessed that our baby girl has such a loving community surrounding her. Much love to you all!

Surgery Update

2010-07-29T07:18:00.001-05:00

Hi there everyone!

Just a real quick update to let you know that Brooklyn's surgery was a total success, and she is doing great! The neurosurgeon said she lost very little blood and that the surgery went about as smoothly as it could go. Praise God!

She slept peacefully last night, and today they will finally get to feed her some of my milk. Because she was having surgery, they were only able to give her sugar water and IVs. Now comes the good stuff!!! I'm not sure when I'll be able to nurse her myself, but I am pumping as much as I can in the meantime. Of course, the most important thing is that she is getting my milk, but I do pray that I get to nurse her soon. My heart is aching for that bond so very much.

My OB is supposed to come in first thing this morning to authroize discharge, and I CAN'T WAIT!!! I am so excited to get to Children's and see my little trooper. God (and your prayers!) got me through yesterday's separation, but I am MORE than ready to move on from that and get to lovin' on my girl!

I do have to say it's been really cool to see Jeff form such a strong bond with Brooklyn. I can hear it in his voice...he is totally and completely in love and is just soaking in all this Daddy time. He told me yesterday how she likes to be soothed, and I could just feel the pride oozing through the phone. Boy do I love that man...

Our next milestone is seeing how Brooklyn's body responds to the surgery. There was a small tear in the membrane surroudning her defect, which means fluid had been leaking out when she was in my womb. Now that we've closed that tear, as well as the open defect itself, there is nowhere for the fluid to escape. It will build up as her body tries to find a way to absorb it, and depending on how that goes, a shunt may or may not be needed.

However, because Brooklyn's ventricles were already measuring big (which means she already had fluid build-up in her head before the surgery), a shunt is looking like a very real possibility. This is not shocking news, but we are still hopeful God will find a way to absorb the fluid. Pray, pray, pray!

Jeff did meet with an orthopedic surgeron for a little while yesterday, and we got some AWESOME news that I just have to share. When Brooklyn was born, one of her legs was completely straight with no bend at the knee. This wasn't a total surprise since several of our ultrasound photos showed this; however, inititally they thought that this meant her bones were actually fused together, which would mean she would never have bending in her one leg. Of course, this was hard to hear and challenged the possibility of her walking successfully in the future.

BUT...after the orthopedic surgeon evaluated her yesterday, he was able to reposition her legs and massage the area and HER KNEE BENT! Testing also showed that she has "good muscle tone" and strong blood flow in BOTH of her legs. Can I get an AMEN?!!!! :) Needless to say, we are all elated and beyond thankful. God is so awesome!

She will still need xrays of her legs to give us more information, but right now, the focus is on her back and her head. Any casting or orthopedic surgery will most likley happen after she is home with us. They think she'll be able to come home in 2-3 weeks -- which is way too long for this mama -- but is what we had expected all along. Just pray that she heals quickly so that we don't have to add to that timeframe!

So that's it for now. So much for my "quick" update. ;) I'll post some more photos soon, but if you can excuse me...I AM GOING TO SEE MY GIRL!!!!

She is here!

2010-07-28T15:29:00.001-05:00

Miss Brooklyn is finally here! She was born via C-section yesterday at 4:49pm. She is a little peanut at 6 lbs 1 oz, and oh my goodness is she cute! I may be a little biased, but she has the sweetest little face. Oh how I wished I could have kissed it yesterday, but Jeff promises me he gave her plenty of “cuppy” kisses last night.

Although her diagnosis (at least for now) appears to be the same as we were told early on, God is still performing lots of little miracles for our baby. First of all, she is extremely stable. She is breathing on her own and her oxygen levels have been 100%, which is awesome (88% or higher is considered “good”). She was able to be transported very quickly to Children’s and is charming everyone she meets! They are even performing surgery less than 24 hours after her birth, which means that even at such a small weight, they think she is more than strong enough to handle it. Such a tough little cookie!

Her hydrocephalus (fluid in her brain) has not caused her head to swell at all, and she does have movement in her legs. Her feet are still clubbed and her legs are not positioned correctly, but we are waiting to see what the orthopedic specialists and the x-rays show. But somehow she is managing to move her legs, so we are still very hopeful!

So far today, they have performed three tests—a renal exam, an ultrasound of her head, and an echocardiogram. They all came back fine, and they are common tests they run before she heads into surgery. Her blood tests show her electrolytes are good, and Jeff says she is very active. Her eyes are wide open, and she is sucking and grabbing onto anything you put near her face. And this may be surprising to all of you…she is very vocal. I know, shocking, right?! ;)

Right now, the main focus is keeping her open defect moist and protected until they can close it up later today. They have been positioning her on her side and stomach, and Jeff says she seems comfortable. Her surgery is scheduled for around 4pm or 5pm today, but as we all know, things don’t always happen on time in a hospital environment. We are just pleased that the surgery is happening today. Because she was born so late in the day, there was a chance of switching the surgery to Thursday or Friday, which would have meant we would have had a different neurosurgeon. But, praise God, we are still able to have it today, and our original neurosurgeon is definitely performing the surgery.

The other miracle has been my recovery. I am feeling extremely good and the c-section went very smoothly. I will spare you the details, but let’s just say my body is healing well and the nurses and OB are willing to possibly let me out today! That’s a mere 24 hours after surgery, which is amazing. Jeff and I have –ahem – differing opinions about what is best for me, but I am ready to get out of here as soon as they say go. BUT I know I need to be conscious of my healing so that I don’t end up back in the hospital. We’ll see how I feel after the 24 hours has officially passed and go from there. I just miss her so much!

Well, I think that’s about if for now. We appreciate your prayers for today’s surgery, and we’ll be sure to let you all know how it goes. Sorry there was a delay in getting you this update, but now that my computer is all set up, I should be able to update much more often.

From the bottom of our hearts, thank you all for literally showering our daughter with prayers yesterday. We felt them, and the peace Jeff and I have is unbelievable. These last 2 days, I have felt nothing but comfort and acceptance and encouragement. The negative hasn’t found its way into my heart yet, which I know is because of all the love and support I received from so many of you.

God has truly provided me with more strength than I thought possible, and He is doing the same for our little Brooklyn. She is proving to be as spunky as we had hoped. :) To God be the Glory…great things hath done!

This Day

2010-07-27T07:00:00.001-05:00

I lay here in the early hours, waiting for the little pitter patter of feet. I am scared. He knows, but I tell Him anyway.

I close my eyes.

I see Him. His hands. He stretches them out to me and hands me my baby.

"Here, she is, child. It is now your turn to take care of her. She is special. You may not understand the decisions I have made, but I trust you. Her strength will be her spirit. Guide it, nurture it...for it will bless many."

I nod my head. I look in her eyes, and I know He has created beauty beyond my comprehension. Heavenly beauty that I get to share with the world. I am proud, and I am happy.

This day, she is mine. But, more importantly, she is still His. Together, we will show the world that His plan is always perfect. Always good.

Always beautiful.

2010-07-26T23:02:00.001-05:00

Dearest Brooklyn,

Tomorrow we get to finally meet you, and we couldn't be more excited. There is so much to tell you, but for now, we just want you to know how much we love you. So very, very much.

Love,
Mommy, Daddy, Emma, and Kendall

Photo by the lovely Brookelyn

Sharing the Journey

2010-07-25T13:45:00.002-05:00

As you all know by now, we feel that Brooklyn has given us a testimony to share, and we want to share it. As a result, I am now contributing to a wonderful blog called The Journey for families raising children with Spina Bifida. I am so very honored to be a part of this wonderful resource. Check it out if you get a chance!

Almost There

2010-07-23T16:21:00.001-05:00

Okay, real quick update...

So far, it's looking like Miss Brooklyn is going to hold on until this Tuesday. Earlier this week, I was having some contractions, but nothing really since Tuesday night. I think those were more of a result of our fun-filled (but hot!) day at the zoo on Monday.

I also had my last loooong day of doctor's appointments on Tuesday (non-stress test, ultrasound, and OB visit). I didn't realize how much I wanted those to be over until I was sitting in the ultrasound room. Jeff was with me, and we got the latest numbers on Brooklyn ventricles (brain fluid estimations), and I lost it. The numbers were much higher than I expected -- 33 mm and 27 mm -- and before I knew it, the tears were streaming and I could not get them to stop. It was at the moment that I knew I wanted this to be over.

It's not that I wanted the pregnancy to be over; I was just done with all the stinking appointments. Done with the long days, the drama, the worry, the head games I had to play with myself every time...building myself up for what I might see, trying to stay strong for what I did see, then trying to convince myself that what I actually saw meant nothing. Totally and emotionally exhausting. Let's just say I would rather not see an ultrasound machine for a very, very long time.

The good news is that my OB wasn't concerned with the ventricle size at all and said it's all proportionate to her growth. (So, yes, I totally overreacted.) And speaking of growth, our "little peanut" is now up to the 56th percentile in weight!!! That was such awesome news -- we really want her to be as strong as possible if she does in fact require surgery.

She is still breech, but this girl is trying her hardest to move. Not sure she'll make it there, but I'm still praying that she will. The c-section is all set up, but in all honestly, my heart's desire is to deliver her naturally. Of course, I have no control, so whatever is meant to be will be.

I truly, truly believe that. I am at total peace right now with whatever happens. Now, I admit that last week was a totally different story. I wasn't ready. But after having some contractions and then the emotional release of Tuesday's appointment, my heart faced it all head on, and I honestly feel ready for anything. If she comes this weekend, great! We get to meet her sooner. If she waits until Tuesday, fine. Then all of our "plans" are in place, and we know what to expect (kinda).

The last few days have been wonderful as I get everything "in order" and do some last-minute fun things with the girls. I've even been able to have some really good talks with Emma.

Overall, I am totally motivated and feeling really good -- both physically and emotionally. Our plans are in place in terms of babysitters and emotional support for Brooklyn's birth and the days following, and I am so very excited to meet our little angel.

We'll keep you all posted, and as always, thank you so much for your prayers. She's almost here!

Power - Part 2

2010-07-16T07:51:00.005-05:00

So this is the post where I lose some of you. The post when I talk about the "S" word and things that are not exactly popular or "comfortable" beliefs. The post that will surely have you calling me a "holy roller." (If you haven't already categorized me as such). But, of course, that is exactly why I need to write it.

Before I begin, let me tell you that I am completely aware of the potential "realities" of Brooklyn's condition:

I am aware that she may be born with much more than just Spina Bifida.

I am aware that she may need 2 major surgeries within the first few weeks of her life and could have up to 30+ surgeries by the time she is 20 years old.

I am aware that she may have a shunt in her brain that can save her life, but can also take her life away if it becomes infected because I simply mistake it for the flu.

I am aware that she may never be able to go to the bathroom on her own.

And, yes, I am aware that she may not be able to wear any of the baby/toddler shoes that sit here waiting for her.

(Very) early puberty, seizures, vision difficulties, potential cognitive challenges...the list goes on and on and on.

These potential "realities"...trust me, I know of them. On "bad days," I have allowed myself to test each one out to see if I could in fact handle them. But for now, they are filed tightly away until I actually have to deal with them. They have been noted, but they are sitting on a little shelf some might label "denial." And I am okay with that. One. day. at. a. time.

************

With that said, on to "power" experience #2...

Right after my prayer shower, I was on a high. That night, Jeff and I had an absolutely wonderful time of sharing that our marriage and our hearts truly needed. The next day, I told my OB nurse all about the shower, and she was moved to tears. She prayed for Brooklyn right there in the middle of my non-stress test. I was strong, fulfilled, and encouraged.

But then Monday afternoon hit, and I started to get dragged down. Hard. As the days and hours passed, the doubts, the insecurities, the everyday challenges started to take over. I was tired, angry, impatient. I got sick. The girls were at their worst. By Thursday, I literally had the worst Mommy day of my life. I screamed and said things to my girls I never would have imagined I would say. At one point, my little 4-year-old Emma looked at me and said, "Mom, you are letting the Devil work through you."

And, you know what, she was right.

I truly believe that Satan was attacking me. No, I don't think I was "possessed" or that some demon was taking over my body, but I do believe that the power of what happened at that prayer shower ticked him off. Something was happening, and he didn't like it. I might as well have had a big target sitting on my belly.

So he attacked and attacked and attacked. And it wasn't just because of the prayer shower. It was because on Thursday night, we had another prayer "meeting" scheduled with the healing prayer team at our church. Satan literally did everything he could to keep us away from that meeting. My body so wanted to stay home; my heart didn't want to deal with one more emotion. The excuses were easy...I was literally sick (I need my rest), I was too tired (I AM pregnant after all), I had no babysitter lined up (I'd hate to ask one more person to watch our kids), the girls needed their Mommy to put them to bed (I leave them enough)...

But when the excuses kept coming and Jeff actually suggested we stay home, I knew we needed to go. My Mom even voiced my thoughts out loud, saying that I knew who was trying to keep us away (Satan). So we went, and God totally won that battle.

At the "meeting," this team didn't focus on praying for our peace or even for God's will (although we know that is the ultimate deciding factor). They prayed for healing. Complete and total healing. Healing of Brooklyn's back, her nervous system, her legs, her clubbed feet, the fluid around her brain. As one man prayed, we BOLDLY asked God to heal our baby because yes, it is bold to ask God to do something so completely selfish. But it is our job to ask. We leave the answering up to Him.

Do I believe that God can heal our baby? Yes I absolutely do. He did it in the Bible, and I know He can do it now. Within a nanosecond, He could take this all away.

The question then becomes, will He? Or rather, do Jeff and I have enough faith to actually believe that HE WILL. In the Bible, He healed people simply because they believed He could. But did they also ever doubt that He would?

To be completely honest, I don't know the answer to those questions. I want to believe 100% that God WILL heal our baby. But I am human. As much as I want to throw those "potential realities" so very far, far away, I am afraid to. It's not that I don't think He has the power to do it, I'm just afraid that is not His plan.

The night of our first ultrasound was one of the worst nights of my life. I literally laid in bed and cried ALL NIGHT LONG. I sobbed and grieved for hours and hours and hours. Every once in a while, I'd wake Jeff up to hold me when the pain became too much to bear, but for most of the night, it was just God and me. I truly believe God cried right along with me that night, allowed me to just feel. But then in the morning, He started to pick me up. And the journey began.

Believing 100% that He will take all of this away might mean re-living that night all over again, if in fact His plan is to not heal her. And that is so very, very scary. So far, I have not been angry with God (more on that later...), and I don't want to be.

But that is what faith is. It is believing so much that you put His power before your own weaknesses, even if it might hurt a little. That even if His plan wasn't what we asked for, that He would protect our hearts and get us through it. Again.

So that has been mine and Jeff's prayer... to erase all the doubt. To wholeheartedly trust in His power. To trust that He WILL heal our baby. To do more than hope. To BELIEVE.

As Brooklyn's birthday gets closer, I admit that it is getting harder to do as we attempt to prepare. But we are trying our hardest and fighting against Satan and all of the doubts he pours in. Ignoring the hurtful dreams, the financial stresses, the marriage struggles, the hormones, the exhaustion of raising two toddlers, and all of the challenges that want so badly to take over this home. To ignore the dozens of hurtful ultrasound images that flash through my head and just focus on that adorable, beautiful little face. To see His face in hers. To believe in His image.

We will accept His plan, but for now, please pray with us. Pray that He will heal our baby. That she be restored 100%. We have to ask for her sake. And because we know He has the power to do it.

"...Pour out your heart like water in the presence of the Lord.
Lift up your hands to him for the lives of your children..."
Lamentations 2:19

Quick Update: The Countdown

2010-07-14T22:18:00.002-05:00

Just wanted to give ya'll a quick update on our peanut as we inch closer and closer to her birthday!

My last two doctor appointments went well. The one I had 2 weeks ago turned into an ultrasound because my belly was measuring small (about 2 weeks behind), but the ultrasound showed Miss Brooklyn is growing -- she was up to 5 lbs, 9 oz -- which is still within the 25th percentile. I had a feeling that she was going through a growth spurt after that appointment, and sure enough, this week my belly was only measuring a 1/2 week behind, so she is getting stronger and stronger every day!

She is still breech, so we are scheduled for a C-section on July 27. However, both my girls were early (Emma was 10 days, Kendall about 5 days), so we'll see what happens. Miss Brooklyn certainly likes to keep life interesting, so I'm not planning on anything going the way I think it will. ;)

My OB did talk to us about doing a "version," which is where they manually try to turn the baby in utero so that she is in position for a natural birth. But, there are risks associated with that, and Jeff and I both feel it isn't worth it at this point. They say I am a "good candidate" because my other two deliveries went so well (nice and fast!), but I feel really confident that Brooklyn will be in the position she is supposed to be in when the time comes. Whether that means she does a flip on her own or wants to stay put, I am game. We have gotten this far, and I certainly don't want to induce an emergency C-section if we don't have to. We want to give Brooklyn the safest delivery possible.

(But... if you could say a prayer or two that she does flip, I'd appreciate it. I'd really like to recover from delivery as fast as possible so I can be with Brooklyn and the girls as fast as possible. I have accepted that this might not happen, but I am still hoping!)

So that's the scoop. My last doctor's appointment and ultrasound are on Tuesday, and then we wait until the 27th. Holy cow, that's less than 2 weeks away. Can you believe it? Let the countdown begin!

Basking

2010-07-12T22:51:00.006-05:00

This summer is flying by, but we are trying our hardest to savor every minute. Trying to balance the "to do" lists and errands with the fun and memorable. Trying to let go of the schedule a little and enjoy the sunshine for as long as it lasts.

Lately, I am finding joy in the every day, especially as I look at these two little girls grow more and more in love with each other. They are truly best friends, and their relationship is something they created on their own. Somehow, their relationship makes me more complete, and it makes every hard day worth it.

The three of us -- "the girls" as Jeff calls us -- we are a package deal. And I love that. They drive me crazy, yes, but they also amaze me and inspire me and love me for all that I am (and all I am not).

When I look at them -- at us -- I am happy. Often frustrated, always exhausted, and sometimes overwhelmed...but happy. And to think we get to add another girl to our "package" makes me happier. I know it makes them happier too.

(*P.S.: "Power - Part 2" later this week...)

Power

2010-07-09T15:55:00.005-05:00

Let me be honest for a minute. If you would have asked me a year ago about the "power of prayer," you would have gotten some luke-warm response from me. Yes, I KNOW it's important. I know God tells us to do it. And of course I have done it many, many, many times for those I love and those I barely know because, well, that's what you do when something bad happens. You pray for someone. (Or you at least offer to pray.)

For me, prayer had always been one of those "I need to do more" things, and like most people, it was often a clear reflection my relationship with God. It definitely needed some help. I meant to pray more -- to actually follow through on my promises to people -- but sometimes I just plain forgot, got too busy...or fell asleep.

And even when I did pray, did I truly believe my prayers were making a difference? I mean God is God, and He is going to do what He is going to do. Was I just getting another jewel in my crown because I remembered to do it, or was I actually having some sort of impact on the lives I was praying for? I honestly don't know what I thought. In fact, I never really thought that much about it all.

Now, however, I will boldly tell you that there is absolute power in prayer. I know it because I have felt it pulse through my heart. I have felt it zap away tears and energize a broken spirit. I have seen it literally move legs and ignite hope like never before. Trust me, there is power in prayer.

Ever since we found out about Brooklyn's condition, I have been amazed at the amount of prayer and support we've received. I'll never forget an email Jeff got from a woman we didn't even know after I sent out our first prayer request email. Not only did this complete stranger offer us love and encouragement (and prayer), a simple scroll down showed that she had received our email after 3 forwards. Jeff and I were in total awe.

The cards, the letters, the emails, the blog and FB comments...each one has meant more than you know. And when you say you are praying for our baby, I believe you and I am truly and eternally grateful. Prayer is literally all we can offer our baby right now, so we have no problem asking for it. Pride has no place in your life when your child's health is concerned. We will do whatever it takes for her.

*****

Soooooo...this is all leading up to two absolutely amazing prayer experiences I had in the last 2 weeks. Today I'll tell you about the first one.

Two Sundays ago, my sister-in-law and mother-in-law threw me a prayer shower. The invite list only included close family and a few church friends. I honestly had no idea what a "prayer shower" was and although I was so very thankful for the gesture, I was a little nervous about being the center of attention. I mean it's one thing when people are coming to rub your belly and say congrats, but it's completely different when people are coming to rub your belly with tears in their eyes and have no idea what to say. But it wasn't like that at all. It was A M A Z I N G.

After a beautiful lunch, my sister-in-law asked everyone to sit in a circle of chairs. She had everyone bring words of encouragement (bible verses, sayings, prayers, etc.) they prepared on a card that she put in a keepsake book. She invited people to read their card, to pray out loud if they felt led, or to just share their heart. There was no pressure and we didn't go around the circle. People just prayed and shared if they felt comfortable, and I have never been so touched in my entire life. There were tears, yes, but not because we were sad. It was just emotional and touching and
P O W E R F U L.

There is no doubt that God was in that room with us, and I felt absolutely blessed that I got to be the Mommy of such a little angel. A precious life that had managed to bring all of these people together to talk to God before she was even born. Bring all of us closer to Him...and to each other. One little life, so many prayers. SO MUCH POWER.

After we were finished, I stood in the center of the room, and everyone laid hands on my belly or just stood around me. My sister-in-law asked everyone to pray one very specific silent prayer in their hearts for Brooklyn, for me, or for our family. It didn't take long before those prayers were no longer silent and we were once again praising and asking and trusting. My heart was lifted, my love tank "filled," and my doubts and fears eased. Total and complete peace washed over me. Again and again and again.

Did I deserve all of this? No. But I will take it. All of it. For my baby and for His glory.

This was no ordinary shower. There was no registry, no pictures, no Baby Bingo, no pink safety pins to steal from your neighbor. There was no huge guest list (although we had enough dessert to feed hundreds!) and no obligatory "I have to go." I truly believe that those who were meant to be there were there, and God used them in a very powerful way. Everyone should have one of these. Seriously.

There were a few small thoughtful gifts, but most were opened after I got home. Nothing about this shower was superficial or worldly. This was about all about God.

I will forever treasure this experience, the keepsake book that will surely get me through the toughest of days, and every word that was spoken for my daughter, my family, and for me. And for those words that were unspoken, I will trust those to God. I know He will use them in an amazing way.

There is power in prayer. Not only because of how absolutely empowered I was after this experience, but because what happened in the days following. And it wasn't what you think.

Not that I'm trying to keep you hanging, but I realize that this post is getting long enough, and I have even more to say about experience #2. I will tell you that Brooklyn's condition appears to be the same, but I will also tell you that there a lot more hope around here lately. Keep praying.

Uplifted, A Haiku

2010-07-01T22:05:00.004-05:00

What an amazing week. There is a spiritual war going on around here, and after tonight, God is totally winning. So much to share -- about Brooklyn, about prayer -- but I don't quite have the time or energy tonight, but I will. I have to. I promise.

For now, I leave you with a haiku I wrote earlier this week thanks to the encouragement of my blogging friend Stephanie. It sums up what I experienced -- not once, but TWICE! -- in the last 5 days. Absolutely amazing.

Hands on my belly
Silence. (Tears) Warmth. Peace. Power!
Strength for tomorrow

Foto Friday: Twirl

2010-06-25T01:36:00.005-05:00

I am by no means a photographer and my camera probably deserves the ridicule of anyone who knows anything about capturing a good shot, but lately I have been intrigued by photography and have made it a goal to try and capture moments when I feel happiness oozing from my little ladies. I even ditched JC Penney and set up an on-location photo session with a real photographer last weekend for our family photos -- and boy do I have some AMAZING shots to share. But first I have to narrow down my 70 favorites to about 10...so you'll see them in about a year. ;)

Until then, here are a few I snapped during one of the many daily dance parties that happen around here. Dresses and skirts are the clothing of choice for my girls (besides Kendall's bathing suit, but that's a whole other story...). However, there is one very important criteria...they must T.W.I.R.L.

If they don't, well, they might just as well be pants.

So while the shots from this past weekend may have some fabulous shots of pink twirling dresses and an adoring Daddy, these will have to do for now. Happy Friday everyone!

And, of course, there is always time for a quick pose or two...

Brooklyn Update: On the Move

2010-06-22T23:15:00.004-05:00

Today's non-stress test and ultrasound were mostly low-key with no dramatics.

(That is, if you don't count my hormonal breakdown in the middle of the OB office when I realized I got my appointment time wrong and they wanted me to reschedule. Needless to say, my tears and a whole lot of begging still got me in before noon. We even made a new 3.75-hour appointment time record!)

So besides that, Miss Brooklyn cooperated, and we passed our non-stress test. Our ultrasound, however, showed that she is indeed a busy bee and is back to a breech position. Yes, she managed to do a complete 180 in the last 3 weeks, so we may be back to that C-section after all. Only time will tell if our wiggle worm will go back "into position" or if she's ready to stay put.

The good news is that she is clearly moving around just fine in there. Plus, my mind has now been "prepped" for either type of delivery, so it's in God's hands. He knows which is the safest delivery route for her, and I am happy to do either. At this point, I just want her to be born so I can hold her! (Although a prayer or two for her to wiggle back would be nice... :)

Her ventricles were measuring a little larger (which helps determine the amount of excess fluid in her brain), but the increases were small and were in line with normal growth. Both ventricles are at about 21 mm. So while we have surpassed the dreaded 20-mm mark -- which some say is cause for concern -- we are trusting that God will protect Brooklyn's brain. However, please keep praying for the fluid to decrease. How awesome would it be to see that miracle happen?!

She is still a little peanut (about a week behind "schedule") but is up to 4 lbs and 7 oz. She is facing away from my belly, which means her spine is literally pressed up against my belly button for the whole world to bump into. I swear this child wants to give me more gray hair. But then again, she fits right in with her big sisters. We make them spunky around here!

My next OB appointment is next week, but I have no idea when I will have another ultrasound. I did manage to get a quick profile shot out of the technician this time, but I didn't want to push it since I was already on borrowed time.

(In case you can't make it out, the photo shows her looking up -- you can see her nose, lips, chin and little bit of her chest. That may be her arm over her head...not sure.)

So that's the latest. Keep praying, please! Only 5 more weeks to go!

To The Man in Our Lives

2010-06-20T07:25:00.003-05:00

Happy Father's Day to a man who would literally do anything for his girls, whether that means putting on some Mickey ears, making holiday crafts, whipping up pancakes every Saturday morning, or reading Fancy Nancy fifteen times in the course of a week.

A man who is more than a father, but a Daddy that will kiss the owies and get right in there and be a part of their little lives.

A man who I completely trust with the precious hearts of our girls.

I love you, sweetie, for the man that you are to our children and to me. We are so very blessed to have you as the only man in our lives!

Drama Queen

2010-06-17T23:36:00.005-05:00

Did you know that an OB appointment can last 7 hours? No really. You didn't? Well, it can.

Did you know you could turn that harmless appointment into a fun-filled trip to labor and delivery, complete with a call to your hubby to get his butt downtown a.s.a.p.? You know, just for kicks...

And did you know you can then top it all off by driving home in 2 hours of Chicago traffic during rush hour when there is a complete downpour?

Oh, yes, yes, you can.

That, my friends, was my Tuesday.

And, yes, I would REALLY like some WINE with that whine. Please, please have a glass for me. Or two. ;)

Now, first of all, let me say that everything is totally fine and that the drama here is totally intended. (But, of course, we all know there is at least a smiggin' of truth in sarcasm.)

Anywho...

Needless to say, Tuesday's appointment wasn't as "uneventful" as we had hoped. Well, in the end it was (a blessing, I know!), but not without some drama.

I really, really hate drama. I try to avoid it at all costs, but I'm afraid I'm turning into a drama queen. Seriously. I've never even broken a bone, but now? Well, I feel like it's always something.

And it's not like a "poor, poor me" kinda thing -- honestly. It's more like a "this is getting embarrassing because I need you to now watch my kids for 7 hours because I can't seem to sit on a fetal monitor without something fluke-ish happening" kinda thing. I mean really?

So here's what happened: I went for a typical OB appointment (no ultrasound), which started with a stress (NST) test. I got downtown in record time, so I was feeling really good that we were going to break our current 5-hour minimum: NST, pee, weight, belly measure, and see ya next week!

Notsomuch.

I was hooked up to the NST machine, chatting away with my nurse while Miss Brooklyn was happily displaying her latest moves via line graph, when BEEP, BEEEEP, BEEEEEEP!!!!

Nurse runs out; another runs in. Doctor comes in. "Turn on your right side. Turn on your left."

Chaos, chaos, chaos.

"Turn back over and let's get that heartbeat again."

No more BEEEEEEPS! Just beep, beep.

Calm.

Me: "What just happened?"

New female OB I had just met who looked like she was straight out of Grey's Anatomy: "Your baby's a bit of a trouble maker. Her heart rate dropped significantly for a while there, but she looks fine now. We just want to monitor you over at labor and delivery for a few hours. We'll do your OB exam over there."

Me: "Uh, okay."

So I call Jeff and waddle across the street to triage, call my absolutely angelic sister-in-law babysitter, get hooked up again, and snooze until my now-stressed hubby arrives. Oh joy.

Brooklyn is fine, but yes, she is a trouble maker. It appears that she decided to grab hold of the umbilical cord and give it a good squeeze, which made her heart rate plummet just enough to freak us all out.

But all is well now.

She is moving plenty, and I feel fine. And this grabbing thing? Well, it doesn't surprise me. I swear this girl has a hold on my bladder and squeezes it any time she feels the need for a good laugh...and lately, that is quite often. :)

I too can laugh about it all now, but I'll admit it wore on me a little Tuesday night after I finally got the girls to bed and I was waiting for Jeff to get home from his second trip into work...ya know, at 9pm.

But we all need a good cry now and then, right? And thank goodness I decided to give in and buy that heavenly bag of chocolate the night before when I went grocery shopping. Now THAT was a God-send for sure.

So there's some more drama for ya'll. I have an ultrasound next week, so we'll see what happens. At least I get to see Miss Queenie herself and those grabby hands! Seriously, could I write a better script?

Sting

2010-06-13T00:02:00.008-05:00

I sit on my bed, belly up, with a needle in my hand.

I am finally listening to my OB and attempting to take my second daily shot of blood thinner that somehow has taken me 10 weeks to accomplish. There is just not enough time in the day.

This needle, this shot, has nothing to do with Brooklyn. It is to protect me. Yet as I get ready to give the shot, she moves and I am distracted. She shifts, and the right side of my belly sticks up and contorts and is uneven. How that still amazes me.

I carefully put my hand on what I am sure is her backside. The tears start to fall, and I pray hard for healing. I pray for power in my hand. I hold her the only way I know how to right now, and I talk to her out loud and in unspoken words that go straight from my soul to my belly. She kicks, and my heart jumps. I am now smiling through the tears, and I know it is time to give the shot.

As the needle goes in my belly, it stings. Some shots hurt more than others, but today it’s not that bad. A breath of relief sneaks out. It’s the little blessings sometimes.

Yes, there are bruises on my belly. Bruises that were never there before this pregnancy. They are bruises I can hide and never show. But that wouldn’t be fair.

Because I am not alone. We are all hurting, somehow, some way. I am no different than anyone else going through this life. Life stings, and at times it may feel like too much pain to endure. But we do. We get through it.

The bruises fade, and we move on. But we never forget the sting.

And that’s where I know I am different….but in a good way. I could get angry. I could hold on to the pain, bury it deep within my body. I could focus on the hurt, the black and the blue, and give in to my human nature to sit in the sadness and dwell.

But that is where He comes in.

He doesn’t take away the sting, but He will heal the bruises and, most of all, He will fill the brokenness that goes so far beyond my skin. He will replace those bruises with all the colors of the rainbow, making the black and the blue beautiful and in perfect harmony with the bigger picture He is painting.

If you don’t know who He is, I am talking about God. And He makes all the difference in the world.

You see, I will get to hold the baby in my belly, look at her face, and I KNOW that I will be in awe of the beauty He has created. Not only because the Bible says it ( Romans 8:28 ), but because I feel it…even now. And that feeling is so much stronger than the sting.

I am still healing, yes, and it still hurts. But the assurance, the promise that lays before me is what I bury deep within my body. And even though there is another shot in my near future, there is also a life to live, a man to love, little girls to take care of, and much happiness to be had.

I will not be wounded. I will be better.

For me,
for her,
for them,
for Him.

Foto Friday: F is for Fun

2010-06-11T14:33:00.015-05:00

So, I realize this blog has gotten a little heavy lately. I write when I feel led, and today I feel led to lighten up a little and share some of our family fun.

Truth be told, I was born a scheduler and rule-follower -- especially when it comes to our girls -- which means that sometimes I have to be reminded to chill out and just live. They are only little once, and the best part about being a Mommy is that you get the chance to be little all over again.

One thing that I have definitely learned over these few months is that life is truly what you make it. You can either jump in and laugh, or sit and miss out on all the fun. So I have vowed to change things around this house -- making it more playful and more joyful and full of l.i.f.e.

That started with a promise to make this summer as fun as possible...balancing planned trips with last-minute adventures and all-out silliness (and getting some work done in between). Although my hormones are trying REALLY hard to work against us, I think we've gotten off to a great start!

(Cue lots and lots of photos... Enjoy!)

Impromptu trips to random parks we drive past

Home-made popsicles on the deck

Touch a Truck day!

Home-made pizza WITH lots of gooey (dairy-free) cheese

Making sure we are dressed appropriately for every occasion ;)

Lots of fun with glitter (which Jeff just loves...)

Tickle fights with Daddy at bedtime

And last but not least...getting creative when Mommy is in bed sick all day (and Daddy is on the clock ;)

Faith Like a Child

2010-06-08T14:36:00.007-05:00

When actions speak louder than words...

Whispers

2010-06-05T16:13:00.007-05:00

It’s absolutely amazing how God has revealed himself to us these last few months. Sometimes it’s in quiet whispers as I look out the window or soak in the smell of a giggling ponytail bouncing on my lap. Other times, I swear He has been right there in the room, very loudly telling us, “I am here.”

Even in the weeks leading up to our first ultrasound, I feel God was whispering in an effort to prepare my heart, even though I had no idea what was to come. I vividly remember sitting on the couch with Jeff a few days before the ultrasound, telling him that sometimes I had a small feeling we might have a child with special needs simply because I thought Emma would be so awesome with him or her. Jeff quickly dismissed the idea—and so did I—assuming it was nothing more than “third-child paranoia" and nerves.

As I’ve mentioned before, we also decided to find out the sex of our baby this time—Jeff’s idea—and I admit I was pretending to be more excited about it than I was. It honestly didn’t matter to me. I also have never been a huge fan of saying, “As long as it’s healthy” simply because what if the baby wasn’t healthy? What if she had 9 fingers instead of 10? Did it matter? Would you not love the baby the same? I can honestly say that those words never sat right with me…especially now.

On the day of our ultrasound, Jeff and I were on the phone (he was meeting me there), and I asked him if he was excited. He said he was, and I teased him about the baby being difficult so that we wouldn’t be able to find out the sex. But then in all seriousness, I said, “We do need to remember what this ultrasound is really about. It’s not about girl or boy—although that is bonus information—it is about our baby and his or her health.” He agreed, and we hung up as I arrived at the ultrasound facility.

Now don’t get me wrong, the information we received in that ultrasound room took both of us completely by surprise. I plan to write about that experience in the future, but I can tell you I will never forget Jeff’s reaction. Watching a heart breaking before your very eyes is an image you can’t escape. The red cheeks, the confused eyes, the nervous hands…it’s like it happened yesterday. I will never forget that night -- ever -- even though I was in total shock. Even today, the reality of it all surprises me and catches me off guard as we go about our daily routine. Sometimes I think that is a sign of pure acceptance, while other times I wonder if it’s God giving my heart a break.

So it’s not like I had this “I already knew” moment, but as I look back, I can hear the whispers. The small preparations He made. The way He opened my heart to His possibilities, His plan—a plan that was so far removed from mine.

And while I have lots of “yelling” moments to tell you about as well (stay tuned!), I have learned to listen closely for His whispers.

Sometimes they provide what I feel might be very real information, but most of the time, they just provide a whole lot of comfort when I need it the most. Sometimes they come from a little girl who stops mid-eating to quietly pray for her sister’s “sick legs,” and other times they come from another little girl who stops mid-play to announce in her proudest (and loudest!) voice that she is going to be a big sister.

No matter the volume of His voice, I am trying to listen hard these days…and that usually means ignoring the world a little bit.

In my hallway, a framed image reads:
“Make time for the quiet moments as God whispers and the world is loud.”

I am still learning to listen, to drown out the other voices, and I am far from perfect. Before this experience, I admit that I would pick and choose when I followed God’s lead. I'm sure He has tried to tell me a lot these last few years, but life is busy, and well, it’s easy to get caught up in the meaningless jibber-jabber that is all around us. I can only imagine what I've missed, the murmurs of Truth I've ignored.

But now, it is different. Everything is different. I am different.

I am listening.

"Call to me and I will answer you and tell you great and unsearchable things you do not know."
Jeremiah 33:3 NIV

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29:11 NIV

“You guide me with your counsel, and afterward you will take me into glory.”
Psalm 73:24 NIV

Quick Update...All is Well

2010-06-01T21:27:00.004-05:00

Good news at our ultrasound today! Brooklyn's ventricles are about the same size as last time, which means the fluid in her brain is stable and not rapidly increasing. Praise God!

Of course, we would like all that fluid to simply disappear, but one step at a time. For now, we are rejoicing in what was actually a pretty uneventful appointment. Jeff was able to meet me there this time, so I feel kinda bad that we were in and out of the ultrasound pretty quickly. No sneak peeks at her cute little nose or even those kicking feet. But we both realize we can't expect every single appointment to be some momentous occasion, and honestly, it was kinda nice that it wasn't. Hearing a simple "all is well" is more than okay with us these days.

Miss Brooklyn is weighing in at a petite 3 lbs, 1 oz, which puts her at about the 23 percentile and definitely within normal growth rates. (A very good thing!) However, because she is a little bit on the smaller side, our OB is being cautious and would like to make sure she is getting enough oxygen, which means he wants me to start having weekly (yes, WEEKLY) NST tests...ugh!...on top of seeing me for regular appointments every 2 weeks...ugh!....and an ultrasound every 3 weeks...grumble, grumble, grumble...

Now, I don't mean to be whiny preggo, but I would be lying if I didn't admit that this makes me a tad frustrated. These appointments literally take half a day. Today, for example, was 5 hours from the time I left my house until the time I picked up my little ladies. Five hours! Last time was 6 hours. That's a long time for my wonderful babysitters (love you, sisters!) and kinda exhausting for this mama. BUT, it is part of the deal, Brooklyn is totally worth it, and, well, we gotsta get used to it. So suck it up I will.

Our OB is willing to let me do some of the NST tests at Palos, so I don't have to go out there EVERY time, which I suppose is a little better. Right?!?!???? Yes, yes it is (...as I inhale five more peanut butter M&Ms...)

Anywho... she is still in position for a normal delivery (which they are really encouraging us to do), and she is really moving a lot -- hands and feet! Jeff gets to feel her move all of the time, and both girls love talking to my belly and making her kick. (I swear she knows their voices!) I know how much joy it brings to my heart every time I feel her move, and it is so awesome that they get to enjoy that now too. We get to rejoice as a family, and it only makes us that much more excited to meet her.

So, my friends, that is the scoop. As always, thank you for your prayers. You are all taking a part in our baby's life and our family's journey, and we are eternally grateful for the work your prayers have done. Next ultrasound in 3 weeks...let's hope it's just as uneventful! :)

Foto Friday: 29 weeks...

2010-05-21T14:04:00.002-05:00

...and I can no longer see my toes! :)

Update on Brooklyn

2010-05-18T14:58:00.005-05:00

We had another ultrasound yesterday. As if getting another peak at our peanut wasn't enough, we also got lots of new information.

First, the good news! Miss Brooklyn is kicking around in there!!! Yes, her legs are moving! This is the first time we have been able to see that. Up until now, they were not detecting any leg movement. We still don’t know if this indicates specific movement from the knee down, but it is encouraging. God is so good!

Also, she is no longer breech and has moved herself into "position," which is making a normal delivery (not a C-section) a very real possibility. We are waiting to see if our neurologist agrees with our OB that this is a safe option for Brooklyn’s condition, but our OB seems very confident that this will be more than fine based on the defect’s lower location and its size. Yesterday’s ultrasound showed that defect is measuring “small,” which is another yahoo!

Either way, Brooklyn’s birthday is scheduled for July 27. BUT if she's anything like her sisters, she may decide to show up a little sooner, which would be fine with us. We can't wait to meet her!

She is also growing just fine and all of her organs look great, so we are more than overjoyed!

Unfortunately, we did get a bit of discouraging news. The fluid in Brooklyn’s brain has increased and has been upgraded from “mild” to “severe.” This increases the chance of her needing a shunt once she is born, could make breathing a little difficult at first, and also increases the chances of cognitive challenges later on in life. We remain hopeful that the fluid will level off at this point, but our next ultrasound in 2 weeks will give us a better idea if this is progressive or not.

Our OB is hopeful that the fluid will not increase, and so far, it is not causing her head to swell, which is very good. Still, we are concerned and asking for prayers on this very specific item.

And, by the way, your prayers are working more than you know! All of our anxiety about our appointments and switching doctors has clearly been bathed in prayer, and God is showing His presence in very real ways.

As you already know, we are very confident in our neurologist, but I haven't had a chance to share that my OB nurse actually prayed for me at my first appointment (yes, PRAYED!), and yesterday’s ultrasound was performed by a gentle woman who had lost her own child to a more severe form of Spina Bifida. (More on those stories later...) We KNOW that these were not mere coincidences.

"For where two or three come together in my name, there am I with them."
Matthew 18:20 NIV

Jeff and I are so thankful for all of the prayers and support we have gotten up until this point, and we feel very confident that your prayers -- and God's awesome power -- will help the fluid in her brain subside. We continue to trust and hope in His plan!

"Our Father in heaven,
hallowed be your name,
your kingdom come,
your will be done
on earth as it is in heaven."
Matthew 6:9-10 NIV

Up

2010-05-14T09:19:00.010-05:00

She tells me she wishes she could fly.

I totally know what she means.

The weight of this world is so heavy sometimes. Too heavy.

But lately, I find myself floating. Floating somewhere between Heavenly hope and worldly reality.

This in-between, this waiting. It's confusing. Some days, I really don't know what I feel.

As I float, I work hard to keep my eyes focused on the prize, even when the gravity of it all tries so hard to keep me down.

I look at my girls; I try to live in the blessings. I try to ignore the rain and concentrate on the sparkle of the glitter that is providing so much joy. Sparkle that is making our day brighter, even if it is a little bit messy.

It's a choice, happiness. To have an Upward perspective. To hope. And I thank God every day that I have that choice because without it, my feet would never leave the ground. Even if that means I have to float a little before I fly.

(Emma's preschool Teddy Bear Picnic balloon release)

but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
Isaiah 40:31 (NIV)

Dandelions & Tulips

2010-05-06T23:47:00.004-05:00

Saturdays are my favorite day of the week, especially in the spring and the summer, when the weather gets warm. Jeff is (usually) home and takes the girls outside to work with him so I can have a little "me" time, which usually involves toilet scrubbing and laundry. But nonetheless, I get a little break.

However, it isn't long before I hear a tap at the door or several urgent doorbell ringings. As I open the door, I am greeted by two little girls with hands full of dandelions and faces full of smiles. "Here, Mommy, for you."

I love that. And I don't think it will ever get old. Ever.

A few weeks ago, we had a Saturday that followed that exact series of events. As I relished the moment, I filled a plastic cup with water, gently placed my gifts inside, set it on the kitchen counter, and happily went back to cleaning the bathroom.

A quick water break led me back to the kitchen, where I noticed that the plastic dandelion cup was actually sitting next to a glass vase full of purple tulips Emma and I bought a few days before in honor of Brooklyn. We both agreed she would like them, so we "splurged."

As I saw the contrast of those two vases, my human nature took over and I started to go there...

Brooklyn will probably never be able to run around the yard on a Saturday morning with her sisters.
She will have to watch them from afar.
And she will never bring me bouquets of dandelions...at least not without a lot of physical effort.

When these types of moments come, I have learned to literally look Up. And just like every time I choose to that, God revealed something amazing to me. This time, He drew my eyes back to the tulips. The beautiful, beautiful tulips.

How in the world did I miss their beauty?

And then He fixed my eyes on both flowers:

The dandelions...bright like the sun, full of life, carefree, and a bit wild.

The tulips...purple like Royalty, peaceful, carefully constructed, and a bit more fragile.

Both created by God. Both beautiful in their own way. Both perfect in His image.

My mind was then drawn to a short essay someone sent my Mom days after we found out about Brooklyn:

WELCOME TO HOLLAND
by Emily Perl Kingsley
c1987

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Interestingly enough, going to Italy has always been a dream of mine, and Jeff and I were fortunate enough to literally go there a few years ago. It lived up to every expectation I had, and we absolutely loved it there.

But I know we will love "Holland" as well, and I'm pretty sure it will surpass all of our expectations.

After all, I hear they have lots and lots of tulips there.

A Piece of Me

2010-05-04T06:20:00.005-05:00

I had my first dream last night. Well, my first dream that wasn’t really a dream at all, but more like a glimpse into the future.

I was in the hospital awaiting surgery. My Dad was there and so was my friend Katie. There was a mother and a daughter in the waiting room as well, both of who seemed to have symptoms of Spina Bifida. The daughter was joking with the mom that she didn’t have any real problems, but the mom was arguing that she did. They were smiling and laughing together. And next in line for the surgery.

I was trying to be brave, and I couldn’t see my Dad for a second. And then I caved in and hugged my friend Katie. I was crying. I told her I was scared. I had never been operated on before. She said, “I know,” and cried with me.

Then it was time to sign my name in at the surgery check-in. But instead of my name, I was supposed to write my relation to those in the waiting room. I wrote, “daughter, Mommy, friend.”

Only neither Emma nor Kendall was there.

And that’s when I realized I wasn’t the one really going into surgery. It was Brooklyn. But I couldn’t see her, which actually makes sense. She isn’t here yet.

I was woken up from my dream to the sound of Kendall crying, and I as walked to her room, I realized just how real my dream was.

Every time Brooklyn goes into surgery, it will feel like I am the one going in. A piece of me getting wheeled into that room. I can’t phantom that feeling yet, but I know I will have to feel it many, many times in the years ahead. I am scared.

But I do know I will have my family there and my friends. They will hug me and cry with me. They will be—and have been—there to support me every step of the way.

And my daughter will have to remind me every time that she is the one going into surgery.

But I will argue that is not the case at all.