September 24, 2010 by Rieshy

Normal is such a touchy word for parents.  All parents.  But especially for parents of children with "issues." 

The dystopian novel, 1984, made a big impression on me in high school.  Especially the concept of doublespeak. So (probably stepping on toes now- but hear me out) when I hear a parent of a child with a g-tube or a child that is in a wheel-chair, or a child with the same condition as my 4 year old defensively call their child normal or differently-abled I immediately think they are just playing games with language. 

Call it what you like, but the norm is for people to be able to walk, chew their food, go hours between meals. 

Webster defines normal :
a : according with, constituting, or not deviating from a norm, rule, or principle
b : conforming to a type, standard, or regular pattern
: occurring naturally <normal immunity>

It's not normal to need medication because your body is missing an enzyme.  It's not normal for a four year old to have to drink cornstarch before bed and then be fed again in the middle of the night.  It is most definitely not normal to have seizures caused by severe hypoglycemia just because you slept a bit too long.

So, to the random adult who asked not me, but my 4 year old, "What is wrong with you?", when my 4 year old's medic-alert bracelet was in view.  "Shame on you!  Mind your own business and learn some social skills."

However, is something wrong with my 4 year old?  Yes, his medical condition is not normal.  Not by any stretch of the imagination.  In fact it is extremely rare.

So is my son normal?  No. Yes. It depends.

Does he think he is normal?  Yes. 

Will he always think he is normal?  I don't know- I bet he'll have to decide that on his own. 

The only thing I know with absolute surety is that even though I have to give him his meds. watch his energy levels, feed him constantly, I also have to treat him like a regular boy who is going to grow up to be a man. 

In one way he is completely and absolutely normal.  He, like everyone else on the planet, was created for one purpose- God's.

"For who has known the mind of the Lord?
Or who has become His counselor?" 
"Or who has first given to Him and it shall be repaid to him?"
For of Him and through Him and to Him are all things, to whom be glory forever. Amen.

-Romans 11:34-36


Unknown said...

Isn't it mind-blowing just how utterly thoughtless and insensitive people can be at times? Those experiences serve their purposes, but they are aggravating and potentially hurtful nonetheless. When these things happen they do remind us to watch our own words, which I know is never a bad reminder for me since I can suffer from 'foot-in-mouth disease' far more often than I'd like. They also help us by giving us wonderful teaching moments with our children. Oddly enough, another thing these awkward, disenchanting engagements often do for me is to make me think things through more deeply than I otherwise might. If not, then they can sometimes make me laugh later on in that "Can you believe she/he said that out loud? I may not be as socially unacceptable as I thought!" way that brings it's own comfort. ;)
I think you are handling so many challenges so very well and am always impressed by your parenting and by your tolerance of others. Great post today.

CB said...

We have always had a saying "Why Be Normal?".
We use it when we are goofing off or being crazy but what it really means is that normal can be so boring.
I think that in a huge way it is such a blessing to have a child who is not normal. I believe with all my heart that these children are given to the very best mothers - those with big hearts and lots of patience - who can take care of these children and they are blessed.
The children who are "not normal" are also some of the most special children I have ever seen - they LOVE, they don't judge, they are giving, they have faith and hope, and are happy just to be.
You are rich with a beautiful, not normal, boy!

Richele McFarlin said...

People can be very rude. Sometimes I think it is just innocent ignorance though.

Your son may not be "normal" by the world's standards but that is only because God has a special job for him and YOU. Not everyone could be in your shoes...and no matter how hard things get..God chose you to raise your not normal son. That is an encouraging thought.

Unknown said...

Normal is upside down, and let us be thankful that we are not normal, not by the standards of Lady GaGa at least.
I'm glad to read this, because well, it's true.

Unknown said...

and by "lady gaga", I mean, "the world". She is a symbol in this case.
I have problems with words. I'm obsessed with fragmented verse and metaphor, but I'm not trying to be flippant here. You know that right? I'm very serious.

Southern Gal said...

You're so right. Normal for us is what we deal with day in and day out. Yet when we struggle with a chronic illness, God gives us the grace to make it our normal. Does that make sense? It seems you have managed that very well.

Heather said...

I agree. Though, I think fewer people are normal than think they are. LOL! My particular brand of Major Depression makes me abnormal. But, in my family, THAT is normal. Most of us take the same meds for the same diagnosis. It's all relative. All playing with words. :) I do so love words.

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