Friday, May 23, 2008

Lesson Learned

It has taken me a while to figure out Madeleine's 'leggie dreams'. She often wakes up in the middle of the night and many times she is talking in her sleep. She will say something very benign like, 'mamop' (translated- lollipop) or 'Daddy funny, no no Daddy'. But often times she is crying about her leg. She will say it is broken, and ask to fix it, or she will cry, "leggie back on", which is basically asking me to put her prosthesis back on.

Most people who I have relayed these stories to sleuth out what is going on inside her toddler head quite easily but I'll admit, it has taken me longer. At first I thought she was insecure about having her leggie off or having it far away but now I know that she identifies her prosthesis as her leg. duh.

*The other night she had a terrible time getting to sleep. She didn't want to take her leg off and kept crying for me to put it back on. I tried to explain to her that kids cannot sleep with their leggies on, that Logan (the only other child she knows with a leggie) takes his off before bed too. I told her she could sleep with it in her crib but she kept trying to put it on herself and then would get frustrated and angry because she couldn't do it. It is quite complicated to put on. Finally I gave up and put her leg on the dresser and said no. It really broke my heart though because I think in Madeleine's mind no one else takes off their leg or foot so why does she?

A few days ago she lifted up her prosthetic foot and pointed to the toes and said, "Madeleine's toes".

My friend whose son also underwent an amputation got some great advice from a counselor who said to talk to the baby about what would happen to his foot. She has always explained to her son that the doctor would remove his foot so that it could function better. She told him this when he was a few weeks old and then when he was old enough to understand it. He has always had the privilege of knowing what happened.

When I have asked adopted children when they found out they were adopted most of them cannot remember. They say they always knew they were adopted.

Maybe because I didn't know which course of treatment we would do that I didn't talk to Madeleine about it. I'm not sure if I ever really explained what would happen to her little foot. Now Madeleine doesn't know that she use to have a foot. She knows that Dr. Mosca fixed her leggie so that she can wear her leggie. She knows that Greg does adjustments on it so that it works well.

Do I need to tell her what happened? Will she understand that when she is looking at pictures of herself as a baby and she has two feet that this is what she use to be? When do we talk about it? How do we bring it up?


Lizzie said...

Hi Niki
I think the best thing to do and this is what we have done with Paddy, is to be completely honest. We haven't fudged things at all with Paddy (except her little foot going to heaven with the fairies)we have shown her pictures, met people, but most of all we have just talked to her and tried to explain what is going on. The great thing for you is you guys are through the surgery and are getting on with things, the hard thing now is trying to explain. Ain't it hard enough just being a Mum without all this extra stuff to contend with!!!
Niki I truly believe that our girls will grow up with the most amazing personalities, and they (hopefully) will end up stronger people because of all of this. Everyone I have met who has got a prosthesis had personality plus.
I was also talking to our babysitter last week who is still at school and she told me there is a girl at her school who has a prosthetic, Ros said she is amazing, she is popular, sporty and NOTHING stops her from doing anything. Made me feel much better about things.
Sorry this is a long post, but there is so much more I could say, but I don't want to go on too much. I think once Madeleine can verbalise herself better, I think things will settle down.

Love Lizzie

AnnaK said...

Hi Niki, I don't know if this is related or not, but I have noticed that some tots this age seem to have confusion about their body parts - in particular, whether they are removable. Lila, for instance, has been asking me to take off her toes, hand, eye, etc., and will ask me to take off my own toes, eyes, hands, etc. I have found myself trying to explain to her that my eye doesn't come off. I wonder if this is typical for almost-two year olds, and if so, it must be all the more odd for Madeleine to know that one of her legs comes off, but the other doesn't. I guess the only thing to do is to keep explaining it to her and eventually it will come to make sense.

BethGo said...

Oh this post makes my heart hurt.

It is really so difficult to explain this stuff to our children.

I am on a yahoo support group called Sammy's Friends. I know that some parents have talked about building a little house for their child's prosthetic to sleep in at night.
It seems a bit over the top to me but I guess it works for some kids.

I don't know. Riley is doing the opposite in that he wears his helper hand as little as possible. I even suspect he has begun to try to hide it from us.

I hope Madeleine is able to find some middle ground for this. It is all so very hard at times.