Today

With every birthday, I watch them grow, stacking up their days into taller piles of milestones and memories, mistakes and miracles.

 

With every candle added, I see their light shine brighter and only hope that I can find ways to feed the flame that makes them special, that makes them feel special.

Among the sprinkles and tissue paper, I see their joy, their innocence, their genuine gratefulness for this life. For every day.

And I learn. 

The blessing of these blessings, growing with each and every year. 

I close my eyes and wish that in the midst of the crazy and the confusing, I remember to treasure it -- all of it -- now. 

Today.

 

Before another candle is added.

No Words

I love to talk. To ask questions. To find good answers. To read and write it out until it makes sense.

I like to lose myself in the words because it is then that I often find myself.

But some days, I want -- no need -- to be quiet. Some days, I just want to watch them.

No words. Just love.



And I usually find myself there too.



Making it Work...
Shirt and vest: Baby Gap, niece hand-me-downs
Skirt: Old Navy, niece hand-me-down

Pockets

Today, sandwiched in between therapies, preschool pick-up, and a few conference calls was a small pocket of time. A time that could have been used to tackle the mountains (yes, mountains) of laundry sitting on my bedroom floor or the extremely neglected toilets and floors, but instead I grabbed an adorable two-braided girl by the hand and we skipped outside.

No phone, no nagging minutes, no plan. Just me and my middle enjoying some rare time alone in what ended up being the most gorgeous day we've had this year.

She rode her bike. I took pictures. We had a picnic with veggie straws and giggles, and we played baseball until Brooklyn woke up and joined the party.





The sun was bright enough for sunglasses, and fur-trimmed coats were shed and replaced with polka dot and plaid hoodies.

We had stroller races until Emma got off the bus -- the only indication that our time was almost up. Therapy #2 at 4:15.

As Emma headed down the driveway and handed me her coat, she pulled out a bottle of pink Hello Kitty nail polish from her sweater pocket -- the nail polish she asked me (about 103 times) to "pleeeeeease put on" this morning.  But between outfit wars, half-made lunches, and eggs on the stove, there was no time for nail polish.

"Why did you bring that to school with you?" I asked her.

"Because I wanted to," she said with a huge grin on her face. "I carried it with me all day."

With that, she put it back in her pocket and suggested we play hide and seek until Miss Julie arrived. I smiled, soaking up her wisdom, and agreed to be the seeker.

~Linking up to Just Write

Small Style

Loving...

Her eyelashes


Shoes on her feet


Not quite loving...

The, um, strong personality that has surfaced over the last two weeks. (Still hoping it's the teeth.)



Thankfully, "ilk!!!" seems to make a lot of things bearable for Little Miss, including an annoying Mama desperately trying to get a full-length shot of her outfit.


Happy Friday everyone!






Making it Work
Blazer: Gap, Emma hand-me-down
Shirt: Tea Collection, Kendall hand-me-down
Jeans: Old Navy, friend hand-me-down
Shoes: Pediped, Emma hand-me-down
Bow: Adornemegirl

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

The Photo That Should Have Been Our Christmas Card

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

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.

Push

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

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?!)