Friday, June 13, 2014

The Diagnosis - just words

As many of you know, Cason is extremely delayed due to a brain injury.  He was shaken at 7 weeks of age and it is a miracle he even survived.  He was found unresponsive, life flighted to IA City where he stayed for a long time, suffered strokes and seizures, was deemed blind and odds were not good he would survive.  Fast forward to "the call".  We were given very vague details of his situation and told that it was unknown how he would progress.  He was 11 months old and functioning like only a couple month old if that.  He could do nothing, did not use his left side, could not roll or crawl or even babble.  He could see though, he had glasses to assist him, but his vision had come back when doctors did not think it would.  He had beat lots of odds and we saw a fighter in his tiny body.  He could smile and coo and snuggle and was so easy to love!  And we fell hard and fast.

We knew the road would be long and hard and he would have to endure lots of therapy and we would have to work consistently with him to help him progress.  We were all in.  We were told he may never crawl or walk or talk, but that he might.  No one knew what he would do.  Months passed and I never lost hope, but it faded...he didn't walk for so long I began to wonder if it would ever happen.  His physical therapists always assured us he would.  And he did!  At 2 1/2 years of age, he took his first steps and hasn't stopped since!  He is starting to say words and show so many more cognitive improvements.  Hope came back and came back strong.  I knew that for Cason, the sky would be the limit!

Then, I was knocked down when a few months ago we got a provisional Autism diagnosis out of no where along with a Cerebral Palsy diagnosis.  Those words did not change Cason's progress or who he is, but they effected me.  I was not expecting them.  It was so upsetting.  After letting those diagnosis sink in, we moved forward knowing that this little miracle child would continue to progress and learn and be the amazing person he is.  Hope came back after the sadness of those diagnosis went away.  They were just words.

The big diagnosis that we knew could possibly be on the horizon was the Intellectual Disability diagnosis.  I hoped that this would be something that we wouldn't get for years...maybe by the time we were thinking he could get it, he would have progressed so much that he wouldn't even need to be tested for Intellectual Disability.  My "hope" was maybe my form of denial.

We recently were told that it was time.  And today was the day.  He received his IQ testing and it didn't take long for us to hear that Cason fell within the scores of Intellectual Disability.  There are 3 levels of ID...mild, moderate and severe.  According to Cason's test scores and IQ (which was 52), he falls within the "moderate" range.  I walked into the Center for Development and Disabilities fully prepared that this diagnosis was a possibility, but when I heard the words, I felt like I was punched in the stomach.  And even worse, they explained that the terminology "mental retardation" would be put on his file if we were to accept this diagnosis.  Stupid legislation and blah blah blah.  I HATE that word.  It saddens me so much and though it is JUST A WORD, my heart is having trouble accepting that.  My head heart will catch up, it will.

We were told that Cason will plateau eventually and there is no telling when.  His neurological issues are complicated and every shaken baby is different.  The brain is so complicated and there is just no way to know how it will heal.  So is hope gone?  NO WAY!  I have been amazed by our little man time and time again and I know he will never stop fighting to learn and no matter how far he progresses, we love him more than words.  We can't imagine our life without him and without all he has taught us.  He brings such joy and light to our family and if he doesn't progress another ounce, we would love him just the same and be proud of him just the same!  He is full of joy and smiles and all we want for him is to be happy and to reach his highest potential no matter how high that is.  After all, he is a miracle for even being here today...that he lived and he can see and he can walk and play with his brothers.  He is so beyond incredible and so unbelievably loved.

So it's a word, a word I hate.  I word that makes me sad, but it's just a word.  It doesn't change Cason.  He is so much more than a word, than a diagnosis.  And God is the ultimate healer and He can do anything in Cason...and no matter what His plan is for Cason, we are ready to be there every step of the way with gratefulness in our hearts that WE get to be his Mommy and Daddy!  Wow...what a blessing Cason is to us.

So SCREW the diagnosis.  We will use it for our benefit in any way we can.  We will use it to get the therapies that he needs to reach his maximum potential and that is it.  We will make it be a good thing for Cason and never let it shed any negativity on Cason or our lives.  He's proven the doctors wrong before and who knows what's up his sleeve.

It's just words...

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