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Re: A few thoughts

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Myst,

I try not to see this comparison, too. My oldest does not have mito

but he is very uncoordinated. We went to their school's " field day "

he was the last in every race, in every event but he kept getting up

there and kept trying. It made me very sad that he was the last in

everything. The next year's field day I asked him if he wanted to

skip school and spend the day out with me going anywhere (the zoo, the

museum, the ice cream shop). He said no he didn't want to miss field

day. It did not bother him that he was the last. He was fine with

participating and being better at other things. So I went and watched

him be last again. The other kids were all yelling " go Mikey! " ,

" Hurray! " , " Good job " ! I did not let him see me cry but it still

makes me cry 6 years later.

What I saw is not what he saw.

You are not alone.

Twana

I am afraid to see her next to other 3 year

> olds. I am afraid of seeing that she is different.

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Don't feel bad about yourself. As mothers we naturally want to see our children suceed. It is hard to watch them be "slower" than others there age. We now set our own goals for Grace, not what the textbook says she should be doing. I will not let myself compare her to others her age, I know easier said then done. Also sometimes our children can "teach" others there age. I don't know of many other children her age who can talk in sign, so they learn from her. She often speaks and signs at the same time (her pronunciation is really bad, so we use both) so all they need to do is watch her. As far as gymnastics go, great idea. I may consider looking into that for Grace, she loves to dance. Also remember that there are many, many "healthy" children that are completely uncoordinated. (I have one!)

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Myst,

We are all different, Sometimes it is harder for us parents to

except than for the kids. Some kids really don't even notice. If you

just move on like she is just like everyone else and encourage her

to do her best she will do well. You need to get over your fear of

being different.It is hard to have a child who is not like the rest.

Who gets stared at, who parents ask questions about. But then you

tell them the milions of medical problems she has and then say isn't

she amazing??? And she is, right? Good luck and have fun. I hope it

is great for you. My Molly is not far behind so let us know how it

goes please.

Dawn

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That is so neat that she wants to be in a gym class and that you will

let her. My daughter, Leah is 6 years old. Every year we go up to

Washington Island for the summer. There is a dance festival up there

that people from ages of 2 years up to married retired woman dance in

costumes. This year Leah really noticed the dancers and kept pointing

to herself of wanting to be up on stage with everyone. This is the

first time my husband really got emotional over this regarding our

daughter. The neat thing is the dance instructor said she would LOVE to

have Leah dance next year; kidkart and all. It may take a family

effort, but a lot of people encouraged us to practice during the winter

with her brothers and to see her on stage next year doing I See You.

I love the fact the instructor welcomed Abigal with saying sweats would

be fine. And if any kids ask why she can't do something ; that is the

opportunity for educating them on her disabiility. We always want our

kids to succeed in what they do. But it isn't failure in that they

can't do it as well. I look at it as succeeding because they are trying

not to be perfect and accept what they can do and they will get more

excited doing the simplist routine. Cheer her on and if she can only do

part of the class; that is ok. You aren't forcing her to do this. And

that is what I think is so positive. Keep us updated on how she does

and if you can send a picture of her in her little pink sweats doing a

routine; great. Keep on rolling and jumping and smiling.

Nerenhausen

mom to Leah

mr_lucy wrote:

>Hi Everyone! :)

>

>I know it has been a while. We have been bouncing from Hopkins to

>Childrens to town. Not to mention our regular visits to the

>PCP.

>

>SO far we are all hanging in there. Right now Abigail has a rash on

>her cheeks (light pink) and it is spreading to the rest of her

>body. :( Not sure what we are in for.

>

>Her PCP noted a big decline in her muscle mass since last year at

>her well baby visit. I was saddened by this as I am ever hoping that

>we will make our way back to where we were before this roller

>coaster began.

>

>We have been encouraged to put Abigail into a gymnastics class.

>Though today she could hardly make it through JC Penny's. :( Still

>when we went to see the gym she didn't want to leave. I want her to

>have this, I can tell my husband does to. Please don't think badly

>of me when I say this...I am afraid to see her next to other 3 year

>olds. I am afraid of seeing that she is different. See, I can

>imagine that she isn't that far behind when I measure her against

>her older sisters. After all they are older, or against the younger

>children on our street...they are all still learning to walk and

>talk.

>

>None the less Monday we will be going to Little Gym, I will be

>swallowing hard while she will be jumping in with both feet and not

>looking back as she always does. Thank God she is brave as I can

>only muster enough to put on a front, and then crumble after the

>children are in bed each night.

>

>When we went to the Little Gym this morning, Abigail said she needed

>a body suit for her gym class. The lady instructor insisted that

>sweats would be fine. Abigail was so excited she instantly told the

>lady that she had pink sweats at home, and that they even had

>bunnies on them. lol When we came home she pulled them out, and

>declared that she was ready for her class. :)

>

>I only pray that this is everything she wants it to be. Sometimes, I

>see the pain when she can't keep up with other kids. I just really

>want this to be special. :)

>

>Thx for listening.

>

>Myst

>

>

>

>

>

>

>

>

>Please contact mito-owner with any problems or questions.

>

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