United Brachial Plexus Network, Inc.

Haunting Conversation

My 7-year-old daughter (ROBPI) is precocious, thoughtful and very articulate (I’m biased of course!) but I wasn’t prepared for this conversation:

I was watching an old documentary on the history channel about the Korean War when some old Veteran started to talk about his experience with frostbite. (He’d lost a hand). The camera panned down to his nickel-plated, pincer type claw prosthetic and my daughters eyes lit up. She asked me what he had on his hand and I explained that he had lost his hand and had a mechanical device attached to his arm he could use instead of a hand. She told me that she wanted one of those and I told her that they would have to take her hand off to get one. She looked a little worried and examined her useless hand. Then she looked up and asked, “Can they give me a pill so that I can sleep while they cut my hand off and I won’t feel it?”

I think that she is already becoming aware of how different she looks from other kids but I was surprised that she was more concerned about being able to use her right hand and arm than about how a shiny hook would look. I thought she had adapted well to doing things one handed but maybe I was wrong. She does know that her hand can’t be fixed and will never function.

Are there others who have considered amputation? I will explore this with her further although I don’t think I can make a decision for her and feel that she is too young to make this decision on her own.

Joshua

I'm stunned. Those thoughts have never occured to me, and for a 7 year olds to be having them...it just breaks my heart. What a loving relationship you two have for her to be able to open up like that and that she can really articulate her feelings (again, stunned she can do that at her age!!)

Lisa

Joshua - You made me realize that no matter what we do as parents to support our kids - we STILL don't know intimately what it's like to HAVE THE BPI and what it's like for our kids to go through all that they go through. Your daughter's comments grabbed me and made me stop in place and open my eyes. I'm so glad you shared this with us.
-francine

I wish that I could say that my daughter and I are always able to have such candid discussions about how she feels about her injury but the conversation I posted earlier was a rare one. Usually she doesn’t know how she feels about things or doesn’t want to talk about them.

I have just started taking her to a therapist with the original intent to explore some of the reasons why she bites her fingers. That has become secondary to my wanting her to have someone skilled to talk to about her feelings.

No matter how hard I try to shield my daughter from my own frustration or exasperation at dealing with the medical and legal issues that I must deal with on her behalf or the exhaustion produced by driving an extra 80 to 100 miles a week for appointments for her, some of this can’t be hidden from her. No matter how many times I tell her that these things aren’t her fault or how many times she reassures me that she knows it, I believe that there is a good possibility that she will assume some feelings of guilt about her injury or, at least some of the repercussions that we face daily. She knows that I love her and would do anything for her but that may not be enough to protect her from self-doubt.

Hiring a confidant and advocate (Therapist) for her to talk with has, after three visits, definitely made her more confident in expressing her feelings and I’m very glad that I found someone whom she trusts on the first try. She is a happier child who sings more and dances more than she did last month. (Me Too!)

I wish that I could honestly tell her that with some hard work and therapy and surgery and scientific advances in nerve regeneration and bionics she will be able to use her arm or that it will get even a little better. I’m not shying away from these things but if they don’t work I want to be sure that she knows deep down inside that the failure is not hers in anyway.

Thank you all very much for your comments. As you all know, I am very much alone without you!
Joshua

Wow, this has tugged on my heartstrings as well. Glad to hear therapy is going well so far - I think it is very important for both of you. I've never considered amputation, but it's good that you have an open mind. I know there are some things they can do with limb reconstruction in kids who were born with limb deficits, the surgeries might be quite different from the wounded soldier you saw on television. But still, what a tough thing to even think about. It reminds me of my root canal when I wanted to get my teeth pulled and just get dentures - lol! Good luck with your little one - she sounds very special.

- Tina

I felt the same way when I was a kid...it passes.

Joshua,
your daughter is amazing! All of our kids are. Thank you for sharing this with us. I can't imagine how I would have responded to my seven year old daughter with this. However, my seven year old daughter is trying to master guilt trips at the moment instead of focusing on her arm/hand (also ROBPI).
Does your daughter have any pain associated with her injury...the tingling or burning?
Emma (my daughter) does occasionally. It will come out of nowhere or when she is sick/feverish.
I know I have no idea how that feels, but it's very hard for her.
One thing we know for sure, all of our children are going to continue to amaze us in one way or another!

Peggy

Peggy,

Although she has no sensation from her elbow down she has complained about pain in her arm a couple of times. Once from EMS, once when she had a fever/flu and once when she had an infection in her elbow . We have never figured what or where this pain is from but it has been rare and not debilitating. She has never complained of burning or tingling.

So far she has never laid a guilt trip on us about her arm ... just about her older sister getting a bigger allowence, having more sleep-overs with friends and other normal stuff.

Joshua