Imagine

I hesitate to write this, and I'm not entirely sure why. It is real. It is honest. Things I promised this blog would be. But I'm still nervous. Maybe because Brooklyn might read this some day, and I don't want her to ever think I don't love her exactly the way she is. Maybe because I wonder what you'll think of me. Or maybe because I don't want others to feel weird -- or guilty -- around me because their children don't have physical challenges.

But, today, I am pushing all of that aside, and I am going to "just write" it for me. It needs to come out, and I need to make sense of it. So here goes...

For the first time the other day, I imagined what it would be like if Brooklyn didn't have Spina Bifida. I mean really imagined. Lately, I have been watching, noticing other little ones, and I started to wonder, what if...

I tried to envision her running along side her sisters, her cousins. Climbing onto furniture. Cruising along the edge of a coffee table. Getting up onto the fireplace.

I wondered what she'd be like. Would she be a monkey like Kendall -- climbing onto everything -- or a busy bee like Emma -- running around in circles (literally) until she fell down laughing.

What would it look like to see her pigtails bounce as she skipped? Would her personality be different? Her smile bigger? Her giggles louder?

Would she walk on her tip-toes? Would she spin and spin until she collapsed to the ground in exhaustion? Would she chase her sisters around the house, or would she prefer to be chased?

As the tears clouded my already cloudy vision, I tried my hardest to see it. And for a second, it was there. All of it.

I've never done that before. I did write this piece, but that was different. That was imagining her years from now (in Heaven) and it was from her perspective, not mine. I never actually tried to see my Brooklyn -- the one I see every day -- as anyone but who she is at this moment.

And now I know why.

It hurts. A LOT.

But more than anything, it is confusing. It makes me feel guilty, and it does not make me happy.

I have written in the past that I have felt a loss, but no regret, and I think that is very accurate. From the beginning, my heart accepted God's plan for Brooklyn's life. Even if I didn't always want it or agree with it, I accepted it and I trusted Him. And I am grateful for that because otherwise I would constantly feel what I felt the other day, and let me tell you, that is NOT a good feeling.

I'm not sure if there is a lesson here or not, but I have to remind myself that not everything has to make sense all of the time. Sometimes things just are what they are, and you feel what you feel. And that's okay.

But going through that -- feeling that -- confirmed that it is a total waste of time and emotional energy to picture what could be when the real Brooklyn is wonderful and beautiful and in front of me RIGHT NOW.

And it wasn't until I went "there" that I realized just how much I accepted Brooklyn for who she is. Up until this point, I never even thought about picturing her any other way. For some reason, my images have always involved crutches and braces, even as I felt her squirm in my womb.

So, now, as I write this, I am deciding that I am not going to feel guilty about going "there" because as I'm sure you would all would tell me, it was a natural, human thing to do. And second, and definitely more importantly, because it showed me that focusing on the here and now is so much more fulfilling than focusing on what could or should be. There are some things in life that you can change, but there are other things in life that require you to simply change your perspective.

I guess that is a lesson after all -- one I can apply to many other things in my life that have nothing to do with Spina Bifida.

And that really is one of the greatest blessings of this journey. How it is teaching me to live. To not imagine a life I want, but to dig down deep and create the life I want with the many blessings I have been given. To accept, to trust, to appreciate, and simply love. At the end of the day, that is really what this life is all about. We just junk it up with a lot of other things that really don't matter.

When I think about living life to the fullest, I often imagine myself running through a field of wild grasses on a sunny day without a care in the world. And I got to thinking...is it the feeling of running through the field that makes you feel alive, or is it the breeze running through your hair?

I didn't realize it until now, but for me, it is the breeze. I can't see it, but I can feel it. Whether my eyes are wide open or whether they are closed, I can just feel it. We can all feel it.

That, my friends, is my blessed assurance. I pray it is yours as well.

Little Better

As she buried her head in my chest, I felt her shakes and I knew they were real. The tears were falling from a child, but the cries were from a grown-up place that I often wish my 6 year old didn't have to visit.

I knew she had been struggling lately, that something was up. But it wasn't until a walker stood between her and a much-anticipated tea party that I saw her heart.

"Why does she have to use that, Moooom. Just take her out so we can get started."

I knew right then and there that all of this "rock star" walker business was getting to her. My heart ached at the thought, and my tongue was tempted to quickly "fix" her hurt. But this wasn't the time. The table was set, the Princess music was already on full blast, and Kendall was anxiously waiting to do her welcome dance. So we all sat at the table, poured "tea" into mini tin cups and shared Rice Chex and raisins as if everything was okay.

It wasn't until a few days later that I saw my chance. Jeff had sent Emma to her room for disrespecting him, and I quickly suggested that I do the "sit down" with her this time. After we talked about her behavior, I only had to mention Brooklyn's walker before she broke down.

"Why does she have to have a walker? Why can't she just walk like you and me."

We had one of these kinds of conversations soon after Brooklyn started physical therapy, but that was before there were standers and walkers and lots of people acting like these were all good things. To an innocent heart and a praying big sister, these weren't good things at all.

So we talked. We talked about Faith, we talked about miracles, and we talked about Heaven. We talked about sister love and playgrounds and God's plan and dancing. We hugged and we cried, and when it was all said and done, she answered one of my greatest prayers in just seven simple words.

"Mom, you always make me feel better."

Today, instead of playing Barbies with Kendall, she sat on the floor and played with Brooklyn until her bus came. When I told her it was time to get her coat on, she kissed Brooklyn on the head and promised her they would play some more as soon as she got home from school.

As Emma closed the door behind her, Brooklyn called out for her -- "Me-maw!" -- and started to inchworm crawl her way over to the door. Emma caught it all out of the corner of her eye and ran back, sneaking in one more kiss on her baby sister's head before skipping up the driveway and heading off to 1st grade.

~Linking up with Just Write.~

Rock Star

 

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

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

Freeze

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.

In His Presence

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

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!)

Standing on the Promises

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

Ready for some skin!

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?!)

Unwritten

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...)

Pink Lemonade (or something like that...)

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)

Making it Work, Splint Style

 

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

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!

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!

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

Quick Update

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!

Surgery Canceled

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

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

Prayer Request: Brooklyn's Surgery on Wednesday

 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

Take THAT Spina Bifida!