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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


( 25 notes — Leave a note )
Jul. 28th, 2006 07:23 pm (UTC)
What a great picture!

I know there's not much to say at times like this, but I am glad to hear you're hanging in there. You certainly provide a lot of inspiration and hope for those times I think my life is rough.
Jul. 28th, 2006 10:55 pm (UTC)
Thanks Cubes! We all have different journeys. I'm wishing you lots of luck these weeks of waiting. I know that's rough too.
Jul. 28th, 2006 07:36 pm (UTC)
I have nothing particularly insightful to say to any of this, but I did want to let you know that I respect the hell out of you for sharing this with us and for doing what's right by your little one. *snugs*

And the picture? That's totally adorable. :)
Jul. 28th, 2006 10:56 pm (UTC)
Thanks! *snugs* to you too!
Jul. 28th, 2006 11:04 pm (UTC)
You're very welcome!
Jul. 28th, 2006 08:20 pm (UTC)
That's quite a roar!
Jul. 28th, 2006 10:57 pm (UTC)
You should hear it! :)
Jul. 28th, 2006 08:35 pm (UTC)
*hug* Hang in there. You are doing what needs to be done.

They are not suggesting now that the arm be removed, are they? Even if it's non-functional I can't imagine any reason that would hurt the rest of him...
Jul. 28th, 2006 11:08 pm (UTC)
Nah, that was just the very first day. Apart from anything the tumor is into the chest wall. Every time we visit the Hand surgeon after that, he hastens to say he won't operate. Little T can move his fingers and shrug his shoulder, so non-functional isn't quite the right word. I used to say that, but I realised that was grossly unfair and looking at it from my ableist POV. He can support weight on his left arm and his left hand can hold things if you put things in his left hand. He doesn't do the latter at the present time, but right now his palm has little feeling and he's too young to understand the utility of it. I think "barely moves" is the word I think that fits.
Jul. 28th, 2006 09:08 pm (UTC)
A beautiful and fun picture.

I don't understand why removing his arm would have killed him, but I'm glad you made the decisions you did, because that's what makes Little T who he is. And looking up "brachioplexus" on google, I see that two forms are reversible, so there may be hope. (Unless you already know what type he has.)

Sending you some healing energy for your sadness...

Jul. 28th, 2006 10:18 pm (UTC)
re removing the arm: I don't actually know, but I'm guessing it's because of the vascular tumor, and something to do with blood loss &/or clotting.
Jul. 28th, 2006 11:25 pm (UTC)
That's right. They wanted to operate, because the interns felt the tumor was consuming so much blood that he would die unless they operated. It was a scene from a bad ER movie where they called me on the phone and said "We have to operate or he'll die." They were going to try to save the arm, but really they were looking at amputation. What they didn't realise was the tumor was deeply embedded in his chest wall. And he had already lost so much blood from the trauma of getting stuck while being born that cutting into him would have resulted in that much additional bleeding and trauma. I believed the operation would have killed him at the time, but I didn't trust myself as much I do now. Fortunately the Hand doctor called it off at the last minute and saved his life. One of several miracles that occured that day that let him live.
Jul. 28th, 2006 10:21 pm (UTC)
What a great picture. He's getting so big.

I'm so sorry the news came down this way, but I think of all the cases where doctor's have said Never, and people do, anyway. I think Little T is likely to be one of those people. And even if he's not, he's got the spirit to figure out ways to make that arm work for him.

Jul. 28th, 2006 11:26 pm (UTC)
I hope so! I know Little T will do whatever he wants to. Hugs to you too
Jul. 28th, 2006 11:23 pm (UTC)
Love that picture, It's perfect example of his spirit. :)

Thoughts and prayers are with you, always.
Jul. 28th, 2006 11:27 pm (UTC)
I think so too. :)
Jul. 28th, 2006 11:47 pm (UTC)
Whatever you do, don't give up on him or his arm - you never know what he might be able to learn to compensate for. You're not living in lala denial land for continuing to have hope. Advances in medicine and physical therapy and just plain strange weird phenonmenon happen all the time. Did you read about that guy recently who woke up after about 19 years in a coma? He regrew nerves, somehow, iirc.

My father-in-law (and /his/ father too) has optic nerve degeneration in both eyes, he's been nearly blind for more than half his life. He's 60 now but he still follows all the news hopefully whenever there's a big breakthrough in nerve regeneration and such. K inherited it, but thankfully only in one eye. It's too early to tell yet whether C will inherit it or not. I hope not, but we won't know until he hits early adulthood.
Jul. 29th, 2006 12:01 am (UTC)
Oop, used the wrong term. Optic nerve atrophy, not degeneration. Different things, I guess.
Jul. 30th, 2006 06:46 pm (UTC)
Yeah, I'm definitely not giving up on his arm, but it's a hard balance between dealing with the reality of what he has right now with keeping hope for the future. I'm sorry about your father in law and K. Thanks for sharing that! I hope C doesn't get it and that nerve regeneration or some other medical breakthrough comes along for your father in law and K.
Jul. 29th, 2006 12:18 am (UTC)
I'm sorry thida.
Jul. 29th, 2006 07:45 am (UTC)
What a cutie :) You have a very sweet and happy little boy :)
Jul. 30th, 2006 06:46 pm (UTC)
So do you! Love those videos. :)
Jul. 30th, 2006 03:31 am (UTC)
Even roaring you are articulate, thoughtful and inspirational. And C is right, but I would say that a support group is there to help you get out of the deep end if you do fall in.

Your family is so brave and so lucky to have you and each other.

Will keep you all in my prayers.
Jul. 30th, 2006 07:36 pm (UTC)
Thanks! You inspired me too! Hugs back!
Jun. 4th, 2008 06:55 pm (UTC)

I am contacting you because I am working with the authors of a book about blogs, and I'd like to request permission to use the photograph you have posted in this book. Please contact me at matt@wefeelfine.org, and I'd be happy to give you more information about the project. Please paste a link to your blog in the subject field. Your assistance is greatly appreciated.


( 25 notes — Leave a note )

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