Sunday, June 13, 2010

About a woman I named Betty White.

 Recently, Roman and I were waiting for the valet guy to bring the van back and a sweet, white haired woman with baggy pantyhose struck up a conversation with me. With a cutie like Roman by my side, she couldn't help it. She started with, "How old?" The answer to that governed her next question, "Is he walking yet?"
I had a choice, I could say, "No Betty White, he has spina bifida. Are you writing a book? Why don't you get into your Buick and go feed your cats?"
But, I've recently turned into an adult, and I've recently learned that other people have feelings too. I've also made a deal with myself to not let my sensitivity answer for me.  
 I could have said, "not yet" but I knew what line of questioning and advice would come next so I lied. I said, "He's this close!"
In that instant I learned that every child in saggy socks life had learned to walk between  the ages of 9 and 10 months. I smiled and said, "Wow! That is so early, good for them!" I felt like I could hate her, I felt like I SHOULD hate her. I mean, who does she think she is bragging to me about her grandchildren that can walk just fine?

I had a 2 hour drive home, I fully expected to just seethe and hate her with my all. So, I started thinking, 'Why do I have to make this stupid drive and talk to these horrible people? and that morphed into, "What have I done so wrong in my life that my child is forced to endure constant pain...and I have to sign the papers saying it's OKAY!" Okay! Cut him open! Okay! put foreign objects in his skull! Okay! Okay! Okay!
I spent an hour pitying myself, hating myself, hating the world. I just thought about how unlucky I was. How our lives could not possibly get any worse. How Isabelle has had to sacrifice so much for a condition she doesn't even have. It was low. I was low.

Finally, I forced myself to snap out of it. I mean, I just wanted to spend the car ride home listening to Lady Gaga and rejoicing that I was no longer sitting next to that crotchety old lady. Look what she did to me!!

...I wish I could thank her.

When I came back to earth I felt so stupid. Stupid and totally ashamed.
We live in a world that has the resources and equipment to keep people alive, well and relatively "normal" We are so lucky. 30 short years ago, Roman might not have the chance he does today.

Isabelle would need to be gentle with Roman even if he was born just like her. Except now, she's learning tolerance, acceptance and compassion at such an early age. I wish I could have been so lucky.

  How many tattered wooden crosses have I seen on that trip? They just sit on the side of the road as a passing reminder that it could ALWAYS be worse. There is a whole world of heartache out there, and Roman can smile at me, kiss me, hug me. He's here. My family is here.

I know I've wrote about sad stuff and I know that in the last 14 months I've had my fair share of breakdowns. I know that I can be hysterically sensitive about the things people say about disabilities, or my son. 
I also know that I have no room in my life to sit around and feel sorry for Roman, my family or myself. This is the last entry I am wasting on the subject of pity. 


  1. Erica, I never read any of your posts as a big pity party. I read them as a concerned loving parent looking for answers to how did this happen, how could it have happened and where do we go from here. You have searched for all these answers and have been making some very good choices on how to handle them. It may feel like a pity party to you, buy I just believe you were looking for the right answers and the best for you son. Love for the P4. Aunt Lori

  2. Erica- I think that every mother of a special needs child has had that same conversation with herself. "Please God, tell me what horrible thing I did that the universe is taking out on my baby. I swear I'll make it right!" But that's not how it works. You've done a wonderful job staying strong and up-beat. A long long time ago, pre-Roman, I was telling you the "story of Jacob" and you said, "I couldn't do it. And - said, "Oh yes you could." You were very very wrong. You're one of the best. Roman could not ask for a more loving or supportive mother.

    PS. The Betty Whites used to piss me off. Rather than lecturing them about scoliosis and adjusted age, eventually I just smiled and said, "Not yet!"

  3. Laughed my ass off at this one (well the beginning). I just ran into and aquantaince that knows about Max's sb and updated her on his performance ('just getting sitting...'). Well I ran into her just two weeks later and she asks me in a loud voice in front of people, 'is he walking yet?'. It was the first time I gave a snippy reply to a question about Max (NO, HE ISN'T.) And I had to deal with the incessant chatter in my head, (the guilt, the rage), about how ungraciously I handled the situation. I think you did just fine. :)

  4. Well maybe its just because I've been in a similar "state" recently but I definitely don't think its pity that you are feeling. Nothing wrong with wanting more for your son, more for your family!! You are a GREAT mama and I think we all need to hear that more often because no matter what, we always feel like we should be doing more and that more is never enough. Even with the "do I have it in me to educate this person about spina bifida today?" Some days its a big fat NO and thats plenty OKAY!!!! Tomorrow is another day! :) Holli