Wednesday, October 03, 2012


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.

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