Friday, July 28, 2006

Little T has severe nerve damage, roar!

Sorry I haven't posted for a few days. My heart broke again. I went to Little T's Hand apt on Wednesday and the report said in black and white. "These electrodiagnostic studies provide evidence of severe loss of sensory and motor axons in multiple nerves in the left arm."

This doesn't actually change anything. I mean the boy's arm barely moves. And in fact since the report the boy now slightly twists his arm inward. But somehow I let myself believe what the EMG doctor told me. Why this stupid doctor (not his hand doctor BTW who's really wonderful) told me this. I dunno. I believed him, because I'm his mother and I believe in my boy. But believing he had moderate damage for a week and then hearing he had severe loss was crushing to me. I feel horribly betrayed and sad.

On the day Little T was born, they told me they would have to cut off his left arm to save his life and I honestly thought if they did so, he would die. Now I would have just refused the operation. That day I accepted him as he was, a one-armed Popeye. His arm no longer resembles Popeye's, but he's still a fighter. I think his arm will do more than what it can do now, which is mostly hanging by his side, but I'm not sure what that means. Whether that just means he pushes it around or not and makes it grasp and ungrasp things with his right hand. I'll leave that up to him and what develops.

For Little T, life is fun and a big happy game, but Little T is not a laid-back kid. He's always pushing himself. He's aggressive. He roars. When he falls down, he literally gets back up and tries again. So that means that as his mother, I can't give up on his arm whatever the numbers say, because he wouldn't. He's just too young to understand what his arm can do.

But I can't live in fantasy moderate nerve damage land either. It's a very hard thing. The past couple days I've cried several times. I think not just about his arm. But because this also feels safe to cry about. I wrote in my book that I rarely cried when he was seriously ill, because crying meant facing his death and that I couldn't bear. I think that's really what I'm still grieving.

Grieving not being able to fix things. I never dreamed I'd have the perfect baby, but I think I did dream I could be the perfect mother and not make mistakes, especially not mistakes with scary names and consequences like brachioplexus. We still don't know if that's what he has. We may never know. I will always know he should have been born via c-section.

And being Little T's mom, well being mom to any child, means that you have to leave your heart wide open to all possibilities, to dream and strive for your child's potential, while looking at him here now and loving and working with what he can do today. Little T has so many unknowns, more than most, so I'm resigned to more heartbreak. I read these books about special needs kids that don't match me. I never feel sad about him. And when I go to the hospital, I always see kids that look so much worse than he is and feel so grateful for his vitality, his zest for life, how incredibly charming he is. I always feel joyful to have him around when he's happy which is most of the time. And like any mother when he's cross sometimes I wish I could run away. Rather I'm well aware of the challenges of being disabled in an ableist world. I want him to be happy with who he is. I want to make sure I've done everything I can to help him accept himself, to live up to his full potential and to make his path easier. There's still a lot of soft biogtry of low expectation for disabled people. It's changing, but I still encounter it from time to time.

But today I woke up still feeling sad but lighter. I don't think about the past much except when the present reminds me of it. I used to blame myself for that. Why do I think about these depressing things when I want to forget them? But a couple weeks ago C asked me "What is your brain trying to tell you?" Oh! Light bulb moment! My subconscious is trying to tell me a life lesson from my past.

My past also tells me we got the most crucial bits of that bits of that day right. I saved his life. I refused pitocin which would have killed him. He didn't get surgery which would have killed him. He's still here by some miracle. I felt so all alone that day. I stared at the ceiling. I had never felt so raw and broken in my life. I wasn't sure if I wanted to live. Then a light - a nurse whose baby had died came to talk to me. She was still alive and actually working. And I realised that even if the unthinkable happened, I might actually be okay and I started to get back up.

Today I feel less alone. I have C now. We have figured out how to support each other in the ways we need. I also know other parents who had kids with life threatening issues with whom I've talked with honestly. I have close friends without kids who will listen, though of course none of them really understand. I have some kind parents with kids who will help babysit Special K when my nanny isn't available and I need help. But I still find myself crying with Special K and Little T in horrible pain not sure what to do. I didn't call any friends the past couple days. I didn't know what to say. I dunno if there's anything to say.

C says that "a support system doesn't make this stuff any easier, it just makes it so you don't fall off the deep end." I guess that's true. I didn't fall off the deep end. And I did just figure out like 90 seconds ago that maybe I should let my friends know beforehand when we're doing these upsetting tests and appointments, so they can call me and ask what's up. I tend to just avoid thinking about them until at the last minute, because I know they'll be bad news. But it'd prolly be better for my mental health. Our next upsetting appointment will be our meeting with the brachioplexus doctor on the afternoon of 8/7.

Anyway I'm still sad, but I also wanted you to know I've started to roar again. I leave you with

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