Archives for October 2012

Four

October 19, 2012 by Lisa

There was no way Miss Kendall would let me get away with not making her a birthday slideshow of year number 4, so here it is. It makes me cry.

Happy 5th Birthday, Kendall. You are a wonderful mix of sugar and spice, with some slugs and snails thrown in for good measure. I love you!

P.S. This is her favorite song. Just ask her 3-year-old preschool teacher and friends, who got their very own performance last year. 😉

When Brooklyn was born, she had clubfeet, a common complication associated with Spina Bifida. Her legs, knees, and feet were not in the proper position, which made it difficult to change her diaper and to hold her comfortably, but it never seemed to bother her at all.

At the time, we lovingly called her “Twisty, Twisty,” but I’ll admit, this was probably one of the most confusing parts of our journey. We, of course, loved her no matter what her legs or feet looked like, but I didn’t know the “right way” to handle it all. If I hid her feet, I felt like I was acting ashamed, but if I let them show, I felt like I was flaunting them and asking for attention. Plus, there was so much more to my baby than her twisty legs. I wanted people to see past them — but, honestly, I wasn’t quite convinced they could.

Extensive casting, molds, braces, therapy, and a few surgeries have helped correct the position of her feet and legs, but this continues to be — and most likely always will be — a challenge for our rock star. However, what we have done so far has gotten her lower body ready for our ultimate goals — standing and walking.

Based on muscle tests and Brooklyn’s abilities, we don’t think she has any feeling below her knees, and she is showing no signs of gluteal muscles. This means she is unable to stand independently, which has made walking more difficult than we had hoped. It also means she can’t feel me tickling her tiny feet, and she has no idea when she gets a scrape on her leg.

None of this, however, has stopped Brooklyn from getting where she needs to go. Sister is making it work. She gets into cabinets, unrolls toilet paper, and (as some of you may remember) loves doing gymnastics. Her current favorite activity is pulling herself on and off her therapy bench. (Little does she know what great exercise this is for her!)

I swear, Miss Brooklyn sees no obstacles. She just sees opportunity — a trait that will no doubt take her anywhere she wants to go.

Life

October 4, 2012 by Lisa

Here is our Brooklyn, not even 24 hours old yet, recovering from her first major surgery.

Brooklyn has myelomeningocele, the most severe (and common) form of Spina Bifida. Basically, while she was forming in my womb, her spinal cord did not close properly, causing nerves to be exposed and an irregular flow of cerebrospinal spinal fluid. That means part of her spinal cord was literally sticking out of her back, causing nerve damage and permanent paralysis.

When Brooklyn was born, she had to be wrapped in plastic and could not be held. She also had to be immediately transported to a children’s hospital to have surgery to close the opening in her back. I was able to see her for five minutes — just enough time to hold her little hand — before the nurses rolled her away to the ambulance. I wouldn’t see her again for two very long days.

Myelomeningocele may affect as many as 1 out of every 800 infants. The levels of nerve damage and complications vary by individual and can take time to identify, which makes waiting a very big part of Spina Bifida.

The causes of MM and other forms of Spina Bifida are unknown, but they have found that prenatal vitamins with folic acid can decrease the chances of occurrence. The tricky part is that it happens very early in pregnancy, typically before a mother even knows she is pregnant.

If you want to read more about Spina Bifida, you can go here. I also wrote this blog post shortly after we found out about Brooklyn’s diagnosis. I promise you there is much more to the story than a bunch of facts and statistics, but I wanted to start here, with the basics.

Because of the compassion of a nurse, I was able to hold Brooklyn the day we were reunited. Yes, there was a foam layer between us, but in that moment, I realized just how very precious life is. Every life.

I realized how thankful I was just to have her. Nothing — I mean nothing — else mattered.

Aware

October 4, 2012 by Lisa

So October is Spina Bifida Awareness Month. It is also Down Syndrome Awareness Month and Breast Cancer Awareness Month. And as much as you might think that all of those causes sharing one month might water down the effect of having an awareness month, I actually think it’s kinda perfect.

Sometimes I hesitate to talk too much about Spina Bifida because I don’t want anyone to think that I believe we are the only family in the world dealing with challenges. In fact, one of the surprising benefits of our journey has been how much compassion it has brought to my heart. I will never forget sitting in the neuro intensive care unit when Brooklyn was only a week old and hearing the cries of other children. Yes, I would have given anything to have my baby unhooked from those monitors and in my arms at home, but I also would have given anything to ease the fears of the 10-year-old girl next to us or to take away the pain of the 4-year-old boy three curtains down.

It wasn’t until I sat in that hospital with Brooklyn that I realized just how many children—how many families—spent time in that very same building. The amount of surgeries that were being performed. The amount of nurses doing life-changing work. The amount of fear and hurt and trust and hope that flowed through the air I was breathing. It blew my mind and heart to pieces.

And I took that with me when I left that building. I feel things more deeply now. Basically, once my world was rocked, I realized just how many other worlds are being rocked every day.

So, on a month when I am supposed to be spreading awareness about Spina Bifida, I am honored to be doing so along side other advocates that are also spreading awareness about causes that are just as important.

No doubt, this month is a special one. We celebrate the courage of every cancer fighter, the beauty and joy of those with an extra chromosome, and the power of focusing on abilities, not disabilities. Maybe there is even another cause I am missing, and if so, that is even better.

To me, that is the whole point of spreading awareness. It’s not about making one cause shine more brilliantly than another. It’s about being aware that we are all dealing with challenges in our lives. It’s about acknowledging differences but understanding that at the same time, we are all struggling in some way. That paying attention and caring can go a long way in making this life more joyful for everyone.

Why should you care about Spina Bifida? It’s a good question, and it is one that I have asked myself the last two years. Why should I spread awareness about something that doesn’t directly affect other people? Do they even care? Maybe not, but of course, that is precisely why I need to tell you about it. And I hope to do that in different ways throughout the month.

Here’s what I know: Now that my eyes have been opened, I care about a lot more than just Spina Bifida. I care about autism and Down syndrome and CHARGE Syndrome and cancer. The fact is, the more I am aware, the more I care. And the more I care, the more I am willing to do something about it—whether that means sending a friend a note of encouragement, making a meal, or praying in the quietness of my heart. Maybe some day I will do more than that, following the footsteps of my friends Tricia, Erin, Alyson, or Katie or my cousin Kevin—people who are actively raising money, raising awareness, and showing compassion in ways that are truly making a difference.

But for now, I will use my little space on the Internet to tell you about our Brooklyn and how she is proof that nothing—not even Spina Bifida—will take away the person God intended her to be. She, like every other individual out there, has something to offer this world. Her challenges are different than yours, but as she has already shown us, her goal is the same as yours. And that is to rise above those challenges.

Awareness isn’t about knowledge or pity. It’s about acceptance and compassion.

So take the time to look around you. Be aware. Listen, care, and even better, go do something about it.