Thursday, November 25, 2010

Not so "NORMAL"

Today is a NEW day...
things always look better at the start of the day,
that and good nights sleep help.

My lil' man just came and attacked me in bed--
He is such a sweetie.

Like take for instance when he took my cup of hot chocolate that my dear hubby just brought me, he made sure that i knew he had it and in his limited vocabulary told me:
"Thank you" before he slugged down the rest of it,
and then {{burped}} for boyish effect, and proceeded to laugh .

Just a normal little boy...that isn't.

At least not how text books define "Normal"
(but then really which of us are???)

So this week after nine years of trying to find answers as to what makes this boy tick i feel like we actually got one. For years i resisted the idea of having a conclusive answer that would place him in a box, that would define him and what he is or isn't.

What he is: a sweet little thing that wants to communicate.

What he isn't: is a normal boy who can communicate by normal means
i.e. sentences that contain words that you actually understand

Yet,he does communicate--he tries really hard to communicate. He loves to find the phone and talk away. He has entire conversations of which we understand little to none of what he is saying, and yet we often understand him and what he is trying to convey, just not specific details. It is the details that tend to get lost.

This sweet boy has had to work at pretty much everything that comes to others so easily. Any time spent with him you realize he is not your "normal" 9 year old.

We have seen many doctors over the years looking for answers. Many tests have been done all of which have come back "within the normal limits" and yet he is NOT--normal that is. We have left these doctors shaking their heads wondering what they are missing. I have almost given up trying to find out. If I had an answer would it change anything??? Probably not.

On our most recent visit to our geneticist she was reviewing an MRI that we had done a few years ago. She saw some things that gave her reason to pause and send us for further testing. Off we went to the Neuro-surgeon for a consult. After a new MRI and waiting for almost 2 hours to be seen, we were told that according to the textbook that defines this particular malformation, our wee one does not fit that diagnosis. The doctor said that even though according to the text book definition he does NOT have a Chiari Malformation
--he does.

So what does this mean to us?
Bottom line. His head which is small (microcephaly) is squeezing the middle/central part of his brain causing many of his problems. Nothing they can do about that--it is what it is. There is a surgery that they can do to alleviate some of the pressure that is on his brain, but at this time we probably would not see the benefits. We were given a list of things to keep our eye on in the future, and if anything changes we will address it then.

Good news: we have an answer of sorts
Bad news: it does little to change what we can do for him.

He will never be your text book "normal". He will have to continue to work harder than most to achieve what we take for grated. He continues to make progress--which gives us hope--it is just SLOW in coming.

And while there are many things that he has to work hard to understand, there are some things that are just innate in little boys--even special little boys--take bathroom humor. He gets that! No one had to teach him about that--He cracks up when gas is passed. He thinks it is a riot when his dad has him pull his finger--he has even learned to make bodily function sounds (the kid can't speak, but he can mimic passing gas?) He understands potty humor in movies and on TV--
i guess there is some parts of normal than no handicap can hold back.
He is my sweet love bug.

He is the child that verbally will not talk back to me when he becomes a ratty teenager

He is the child who still needs and wants a hand to hold on to

He is the child that will always give unsolicited hugs to anyone.
Even those who don't know they need one

including in-animate people at Lego land

He is the child that brings out the best in my other children

He is the child who will continue to believe in Santa
years after he shouldn't anymore.

He will be the kid that finds joy in the simple things
like blowing out candles on his birthday


(don't say this word around him if you have no intention of getting him some)

he has no fear of animals-

real or stuffed
he finds awe in the simple things like sand
and loves to share it with others

he loves all babies and wants to snuggle them any chance he can get

so who needs "NORMAL" when you have him?...

At least now we have an answer

No comments: