I am so honored to have been entrusted with these stories. Every day I get to be lifted up and strengthened not only by these children, but by the parents. This next sweet boy is Roman...and his mom is AWESOME! The Spina Bifida Journey has taught me some interesting things...one of them being I can meet people online (never face to face) and if I need something, they have my back. The Spina Bifida Community is a strength and a huge force to be reckoned with. Erica has definitely been in my corner on more than one occasion ..and her feisty self amazes me! I am blessed to call her friend.
"Roman is 3 1/2. I found out two weeks before delivery that Roman would be born with SB. I had to change hospitals, change doctors and educate myself and our family the best that I could. My emotional state? It's not really anything that we learned in grade school or even feel in our angst-filled teen years. It was a combination of "this is the worst thing ever" mixed with, "why can't I stop crying?" mixed with, "How do I say that again?" mixed with, "Holy (expletive) why us?!" We felt unmeasurable fear, crippling depression, and total denial. And then an hour would pass and a whole new set of feelings were ushered in.
I'm a little ashamed to say that while I was pregnant I had imagined that I would spend my whole life feeling sorry for Roman and feeling sorry for us. I am very pleased to announce that I was wrong.
I don't feel sorry for Roman. I feel sorry for people who don't KNOW Roman. He inspires, he lights up the room, he is a vision of hope and pure happiness. He changes lives in a single smile. And I don't feel sorry for us. I feel sorry for the people that cross us! I'm an advocate and voice and educator to people who don't know about Roman, about Spina Bifida and about disabilities.
My children have given me an overflow of confidence and a desire to reach out and help people, teach people and comfort people. Staying educated and surrounding myself with my SB moms, I'm not as scared as I used to be. Spina Bifida sucks, but it's not a tragedy.
I had a hard time picking which video to use. I have a lot of videos of Roman using his walker and even more of him using his forearm crutches. But I chose this one for a very special reason. The wheelchair. Emotionally, it was one of my biggest hurdles. I thought that if we got one, we had lost and Spina Bifida had won. What a thought! No, Spina Bifida still hasn't won. We laugh in the face of Spina Bifida (and we run over our mommy's toes!) I chose this video because overcoming that trivial little fear was one of the best things I could have done for Roman. I chose this video because it shows happiness first, wheelchair second.
To future parents of kids with Spina Bifida I say this: I absolutely promise you; you can do this."