In the underground world of mothers of children with SB I am still considered "a newb" Even though Roman is a couple months shy of ONE already,I still have a lot of learning to do and a lot of emotions to deal with, or file away.
One of the questions that HAUNTS me is, "why Roman?", "why spina bifida?", "why us?" why...why..why...and then, like clockwork comes the "what" "What did I do?" "what didn't I do?" "what could I have done?"
Some nights I do really well and I don't think about it all. I'm thankful for these nights because I feel like, not only do I enjoy Roman more, but my whole family. In fact, sometimes I even forget that Roman has spina bifida.
But then,I'll watch my daughter and my nephew romp around on the floor and my head clouds with the "why's" and the "what's". "Will he ever be able to play with them?" "How will he keep up?" "Will they be indifferent to him?"
I think in the last 10 months I have grown and adjusted just as much as any SB mother can be expected to at this stage of the game. Don't applaud me yet, I have my weaknesses, oh BOY do I have my weaknesses! You see, when it's just Roman and the family at home we don't have to talk about what he can't do. It's just our everyday routine doing the things that he can. It's not until he's put side-by-side with a child who does NOT have Sb that his condition shines through.
I feel like a bad friend for saying that. I feel like a bad person for saying that. It's not that I am jealous that these babies were born healthy. It's not that I wish they had this too. No, it's not jealousy or anger or ill feelings of any sort. On the contrary, I LOVE IT when babies stand and crawl and giggle and coo and do all of the things they should. For me, it's a pain, like a burning emptiness that punches me in the stomach, a reminder of what my son can't yet do. And let's be realistic, *might* not be able to do.
Okay, Okay, Okay, OKAYYY One negative, sad thought a day and then it's time to put my pants back on.
Hi, I'm Erica!
Luckily, once those horrible, sad thoughts have passed I can start looking at the BIG picture...
Isabelle and her cousin Carter ADORE Roman. They kiss him, hug him and basically drag him to wherever they are EVERY time they play. If they are willing to include him in their play at 2 and 3 years old, who is to say they won't include him when they are 12 and 13?
Sure, watching a kid crawl or stand up might jerk at my heartstrings, but it does NOTHING to Roman. Doesn't hurt him at all. In fact, I like to think that Roman watches these kids and is processing what they are doing. "Okay Rome, first that knee goes forward and then...Ohh wow..Then the OTHER knee goes forward..I'll have to try that sometime." Yep, he's a real "hand's on" learner.
I guess for me, this is all just part of the process. The emotional ups and downs, the wondering, the dreaming....maybe some crying.
But, I've accepted long ago that I can't just sit around and say "oh woe is us" I give myself a few sad thoughts and then I pick my chin up and go about my day. For doing that, for being that cool, I'm going to award myself with a second bowl of banana pudding.