Friday, April 8, 2011


Imagine this: Your 7 year old child (with a mitochondrial disease) gets up in the morning, and she feels like poo. Her legs are hurting and she starts the day having meltdowns about little nothings (there's not enough milk in her cereal). As her parent you know she has to go to school, you know she can't throw hissy fits and think that is ok to do, and she has to learn how to move on in spite of the way she feels.

But as someone who feels the same way she does often, you hurt for her, want to tell her to just stay home and lay in bed all day, or do something to help her realize that throwing the fits will only make her feel worse because she uses so much energy throwing a fit.

What do you do? I love my Kimber, and it hurts to know she feels the same way I do, but she has to learn that she can't just throw a fit and stay home when she isn't feeling up to par. The school certainly isn't going to excuse 30 days missed because her legs hurt.

This morning we fought to get ready for school, take medicine and then we sat in the parking lot of the school for 20 minutes while she threw a fit. Then when she composed herself, I took her into the school.

I am still learning how to handle these kinds of situations. How to teach her to live with this and still function. It's so hard sometimes.


  1. I agree it is hard. My eldest is very nearly 21 and it is still a take it day by day situation. I hope the school have a plan in place to assist her through her days. It makes a trememdous difference if the child feels they have options/strategies in place to accomodate their needs.

    I have never worked out whether its better to know what it is like or not in terms of helping them to cope. At the end of the day perhaps it makes no difference as we act as mother's do - kind, firm, compassionate, ........ ? At least thats what I try and do but some days when I am struggling its a tough call. I imagine you feel like that too.

    At least the blogosphere means we can write it down.

  2. Thanks so much! Her school doesn't really have a plan except to call me, which they did, because there is nothing for the doctor's to tell them to do exactly not knowing what is going on by full name... But since I have gotten it down to her eating very well, if she gets her school snack, she is usually ok during school and the melt down is saved for when she gets home.. She just happened to wake up feeling terrible that morning, and was cranky form the get go...

  3. Oh, and they won't do anything specific without a doctor's order... stupid school rules. When I was young, if you needed extra school help, it was just there, but we were in a small town in North Carolina, and it just isn't like that here in the city.

  4. If you have a look at it has some very helpful tips. Tom - 8 years only attend 4 half days of school. If he attends longer days his speech becomes poor and his energy levels plummet. Moderation seems to be the key.
    Hope this is helpful.