Rare Disorders

December 1, 2009 by Rieshy

This week we've had some minor bumps in our Littles' health. Nothing serious, just more adjusting of medications, minor illnesses, and few extra hours at the pediatrician's office. We are very blessed with how great our little ones are doing and very blessed with how little medical intervention they require. However, the "bumps" put me back in ponder-mode about life with chronically ill children.

My pondering has culminated in a veritable news flash. Prepare yourself for great insight; chronic illness is... well... chronic.

Actually, I looked up Webster's definition of chronic:
  1. a: marked by long duration or frequent recurrence; not acute b: suffering from a chronic disease
  2. a: always present or encountered esp: constantly vexing, weakening, or troubling b: being such habitually.
It's a pretty thorough definition. I took comfort in it, as if Mr. Webster himself just gave me personal permission to feel vexed and weak and troubled. I guess the definition validated how I often feel.

Imagine how much you can start doubting yourself as a parent when you have a child who can go from fine to critical with almost no warning. A child who has such a rare disorder that your (excellent and very experienced) pediatrician has never dealt with it before. A condition so rare, that the residents in the E.R. get excited and come chat with you and look over your child even if they are not technically assigned to your child's case. Imagine you have two such children.

The hardest thing for me to cope with, chronically, is differentiating symptoms of the disorder from symptoms of normal toddlerhood. For example, is Jack just fussy or is he beginning a metabolic crash? Is Jack losing weight and bruising because he's been running around like a madman and wrestling with his 8 yo brother or because something is medically wrong? Is Sam demanding more milk to stall his bedtime or did he not consume enough carbs. during the day? Part of my mind can never really rest.

Let me change that last sentence: I have not yet learned how to let part of my mind stay alert to my two Little's condition while letting my mind also rest in God's providence. I will learn. I think it will be a bit like dealing with grief - one day I'll realize that I've turned a corner and left my immature restless-worry behind.

Until that day comes, though it is a bit out of context, I take comfort in 2 Corinthians 4:8-18 which begins: "We are hard pressed on every side, but not crushed; perplexed, but not in despair..."


Richele McFarlin said...

My neighbor has a grandchild with a disorder that sounds very similar. He cannot have any protein at all. I really cannot remember if it's FOD or not. She did say it was a metabolic disorder and he is on a special diet which is quite costly. Prayers to you and your sons. I love that verse...such a comfort!

Betsy said...

I joke with people that my children are the healthiest looking sick children they will ever meet. I hate chronic illness, yet I know that God did not make a mistake with our children.

For the past few years I have hoped that maybe this was all a big mistake and there really isn't anything wrong with my guys. Another recent medical development has once again knocked me back into reality.

Deana said...

It always takes me by surprise too when something happens and I'm reminded of Max's illness.

You are right though, hard pressed, but not crushed. He gave our kids to us for a reason...and we are the very best parents for them.

Rieshy said...

Richele, You might be referring to Lysinuric Protein Intolerance, it's also an autosomnal inherited disorder but I don't think it is considered a FOD. I don't really know much about it except I think you are right and it's incredibly expensive and difficult to feed a child with it.

Thanks for the prayers.

Rieshy said...

Betsy, I'm so sorry you've been knocked into reality again. I hope things are better for you and yours.

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