a normal but healthier life where do u draw the fine line?

[Guest guest]

I know a lot of you other mito families have the same issues with where to draw a line on how to let your sick child have a normal life and not affect their health or the other family members.

Every time we seem to do anything remotely exhurting/stressful/later hours for him it seems to cause him to get sick. We have reduced stressful situations as much as possible, but its very hard to explain to our 5 year old. Our family is slowly starting to understand but it is hard to explain to them why we can't eat at 7 pm at a restaurant . I hate having to tell him no u can't do that no u can't do this, The fact that he is younger hten lexi is only going to hold water for so long. Lexi was so bummed when she found out he had pneumonia because we were supposed to go to a water park. If i let her and bill go, zach woulda cried and its so hard to see him feel left out but if i let him go he gets run down and sick. The dr.s say hes suseptible to getting hit so much more which is true. I jsut wish there was some way that we could do things w/ out it having detrimental effects.

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[Guest guest]

Hi ,

We too have this issue as Im sure you will find

many families do. We have three children (two with

medical issues) and we always try to make the best of

it for our oldest and healthy son. We have two modes..

which he has learned through the years. First and

foremost is crisis mode where everything shuts down

and we take care of whoever is sick. Be that in the

hospital or at home and everything gets cancelled. I

am sure that as your older child grows up he will

udnerstand better. Our daughter was born with many

issues so this has been the case since our oldest was

not even two. He has adjusted very well to this with

knowing that once we are " back to normal " we will make

up things that we had to cancel. We have special days

with Daddy for each child on their own... they pick a

restraunt and for the longest time it was taco bell.

No kidding!

Anyway, water parks and things like that are too

much for our kids to handle most of the time. If we do

go our two youngest are in their wheelchairs even

though our middle child can walk. She can not endure

the distance nor the heat. We have tried them a few

times but always end up with everyone exhausted. If

you do plan an outting like that explain that it might

not be THAT weekend... you will try .. if not then the

next and show a calander from whatever park to the

child that shows they will still be open. We ve had to

do that many a time for our son.. as he didnt believe

us with out proof.

When in the hospital though we do try to make life

as normal aspossible for them. Go to local places and

take breaks from the hospitals with the healthy child.

Even the little things they do like and will talk

about for years to come. It amazes us how we have had

to simplify our lives for our kids but we appreciate

life so much more and can all enjoy it if we do not

over schedule things.

We added a sport this year to our oldest childs

life but explained to him and the coach that he would

not... could not be at every game or practice for that

matter. Theyunderstood that the health of our other

children had to come first and were willing to work

with us and our son knew ahead of time that he would

not be at every game but we would do our best.

It is hard to juggle especially as they are

getting older. This year our daughter with mito... has

joined the same soccer league as our son. She asked

last year and we did allow it but only because they do

not practice when young and only play a half hour

tops. So this will be more of a challenge but to say

no to her when she is willing to try just doesnt make

sense. She might only be a goalie for one quarter or

something but she will be with her friends. Life is

always a guessing game on what the right decision

should be. We do our best as parents to juggle all

this and to make the best out of what we are handed.

Good luck and know that the best thing you can do

is to keep your other child informed of why you have

to cancel things and that nothing is set in stone.

Hope this helps out some. We know we lead very very

different lives than most. Good luck!

Kimberley

--- sarah zalexia27@...> wrote:

>

>

> I know a lot of you other mito families have the

> same issues with where to draw a line on how to let

> your sick child have a normal life and not affect

> their health or the other family members.

>

>

> Every time we seem to do anything remotely

> exhurting/stressful/later hours for him it seems to

> cause him to get sick. We have reduced stressful

> situations as much as possible, but its very hard to

> explain to our 5 year old. Our family is slowly

> starting to understand but it is hard to explain to

> them why we can't eat at 7 pm at a restaurant . I

> hate having to tell him no u can't do that no u

> can't do this, The fact that he is younger hten lexi

> is only going to hold water for so long. Lexi was so

> bummed when she found out he had pneumonia because

> we were supposed to go to a water park. If i let her

> and bill go, zach woulda cried and its so hard to

> see him feel left out but if i let him go he gets

> run down and sick. The dr.s say hes suseptible to

> getting hit so much more which is true. I jsut wish

> there was some way that we could do things w/ out it

> having detrimental effects.

>

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Sara,

I have three kids and exp the same issues you do. Abigail luckily is 3.5 years younger than my oldest and almost 2 years younger than our middle child. Like you I fall back on the age difference at times. It is really hard to watch a child who wants to run with the big kids have to be held back. However, we try really hard to make the best of it. Our older girls need to maintain a regular life style. So...my husband and I take turns spending quality time with Abby while the other keeps the big girls involved in their own activities. For example Abby and I might rent some videos and set the living room up like a theater while Marc takes the big girls swimming. Abby does feel left behind sometimes, but it can't be helped, and we always make up for it with a family adventure later. Do the best you can. It isn't easy to keep everything even between kids when they are all healthy. This is my mom's wisdom...there were five of us...much less one is ill. Hang in there, and don't

forget to smile. The best lesson learned thus far has been that I rule the mood of the day. If I am upset...so are the kids. Just try to smile, and find the bright side. Abby and I plan to be great video gamers when she is a little older!

Good luck, I hope I helped a Little.

Myst

sarah wrote:

I know a lot of you other mito families have the same issues with where to draw a line on how to let your sick child have a normal life and not affect their health or the other family members.

Every time we seem to do anything remotely exhurting/stressful/later hours for him it seems to cause him to get sick. We have reduced stressful situations as much as possible, but its very hard to explain to our 5 year old. Our family is slowly starting to understand but it is hard to explain to them why we can't eat at 7 pm at a restaurant . I hate having to tell him no u can't do that no u can't do this, The fact that he is younger hten lexi is only going to hold water for so long. Lexi was so bummed when she found out he had pneumonia because we were supposed to go to a water park. If i let her and bill go, zach woulda cried and its so hard to see him feel left out but if i let him go he gets run down and sick. The dr.s say hes suseptible to getting hit so much more which is true. I jsut wish there was some way that we could do things w/ out it having detrimental effects.

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