Chronic Illness and Children

Ugh.  After slowly clawing our way back to being caught up in school Bam!  Symptoms are back and worse than ever.

Now we’ve lost another week of school and are on some awful steroid again.  Great.  Medicine that causes anger and depression.

The balancing of family is real tough during these times.  I want to do things with everyone at the same time but that limits us to watching TV.  I want to do awesome things with everyone but I also don’t want to limit my other kid’s activities.

Saying Health First, education second sounds like a nice practical approach but how do you apply that?  Education is really important.  But what do you do when you miss so many days of school to sick days?



But you look healthy

A ‘complaint’ I find occassionaly from people with Chronic Illness is frustration when people say “But you look healthy”.

I think I understand that complaint, but as a parent with a child with a chronic illiness “looking healthy” messes with how I evaluate situations.  My daughter is happy and looks healthy during the day afternoon.  She does school work and goofs around as I would expect.

She won’t get up in the morning.  She probably won’t get up until close to noon.  Is it fatigue? She is on some powerful medicine that absolutely has fatigue side effects.  She went to bed at 8-8:30.  She is a teenager – teenagers frequently are difficult and stubborn.  She looks healthy, all outward appearance (save one) look good.

So as a parent I have to evaluate whether my kids are healthy enough to go to school.  Fever? – Nope. Runny nose? Nope. Puking? Nope.  Sounds like a school day.  All symptoms I can physically see.

You went to bed at 8?  Yep.  Ok you had plenty of sleep – go to school.  Oh you’re still tired.  How am I supposed to process that?

Again,  I think I can understand the basis for the complaint about “looking healthy” and it is way too easy for people to judge and evaluate other people’s situations.  But we evaluate situations based on how we ‘know’ the world is supposed to work.  How else are we to make decisions?  I’d rather you just not be sick 🙂 but we all have to deal with the world as we find it.