spina bifida

Imagine

March 13, 2012 by Lisa

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

February 14, 2012 by Lisa

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

February 3, 2012 by Lisa

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

January 26, 2012 by Lisa

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