I watched the Physical Therapist shake her head as she was watched Alexandra hobble down the corridor. Alex did so with fervor, smiling as she turned bluer the more she walked.
My heart sank with that head shake.
"Why hasn't anyone referred her to PT?" The therapist asks.
I honestly didn't know what to say. "Well I did - when she was 2 and couldn't walk, but once she got into school we stopped PT."
"She can't run, she can't even walk right."
"I know that's why I'm here. She's not getting PT at school anymore, and I know she's become very physically disabled."
My heart. To see her smile and laugh yet have to grit her teeth to do what any average child would do with ease.
I let it go. I let it go because I had no time. Between work, school, dealing with her school, dealing with Aria, traveling to Boston, oh and the constant vigilance that she requires - I let it go. It's my fault.
I can't afford to be a stay at home Mom. My Husband doesn't make enough money. So I went to work and school so that I could help support this family.
And she paid the price.
"Do you see how she never actually puts her left foot completely on the ground? She doesn't stand properly either. She puts all her weight on one side. Which doesn't help the scoilosis."
"I have seen that. I didn't know. I do organs, I have no experience in bones. The bones don't keep you alive. I only had so much time to focus on things."
It's my fault. I shouldn't have let it go. Yet there is only 24 hours in a day and I needed to sleep sometime because I was no good to her dead.
Aria has paid the price too.
I feel powerless and unable to do anything. Unable to get anywhere.
Unable to change our station in life.
Unable to manage her care.
I'm sorry Alexandra. I tried darling. I went to the ends of this country trying to find someone to save you. I've bankrupted your Daddy and I twice doing this. I don't know what else to do.
Aria - I'm sorry. I'm sorry Momma had to leave you behind time and time again. I'm sorry I've asked you to help me move her feeding pump or get me her GTube supplies. I shouldn't have asked you for that. I shouldn't have asked you to be her caregiver also.
Kevin - I'm sorry. I'm sorry I got burnt out, tired and angry. I'm sorry I didn't trust you. I'm sorry.
It's my fault. I fell short. I hate falling short. It's my worst fear besides losing her. It looks like I'll have to come to terms with both my greatest fears coming true....