Taking the time to remember why

>> Thursday, August 1, 2013

When your child has a chronic condition, so often one becomes so fixated on finding the solution that all they see is the next possibility, or the next treatment.  For parents with genetic conditions that arise at birth, or before, they cherish every day, they never became complacent about the childhood their child experiences, they work everyday to ensure that they have another day.

After getting the blood test results yesterday, I began researching. I came across things with titles like:

Disorders of Organic Acid Metabolism - The cause of isovaleric acidemia is a congenital deficiency of isovaleryl-CoA dehydrogenase, which mediates formation of 3-methylcrotonate

No kidding.

So, this morning I needed to remind myself to stand back and enjoy the child he is, as much as the child he was. This little boy, is so close to getting the help he needs to feel more like himself than he has in years. We are excited, and we are scared. This let down could be epic, if the treatments don't help, and so, we keep it in check and we remind ourselves that we have worked for years diligently and we are confident that we have done our best. Now...the medical community hasn't but that is another post for another time. Not now. Now, we smile at what was, what is and what may be.

And I post pictures.

Bug used to like to hit things with sticks. At restaurants, he would use the silverware, or the straws and he would tap on the glasses or the plates. It was both cute and annoying. So, for Christmas of 2005, he got a drum set. He broke that in 2 hours.

He then got another, heavier duty one, and that one lasted a week. We moved to this 'real' one a month or so later and he loved it! He played it everyday for months! And then...one day, he didn't. One day, he picked up the sticks and played for a few minutes and then, he never touched them again. That was the beginning of the regression, of losing our boy, of getting a new boy in his place.

These drums...are still on our basement. Pathetic isn't it? We can not bring ourselves to throw out something he loved to much. One day, he may play them again. One day, he may pick up those sticks, and then again, he may not. I have no doubt that one day these drums will no longer be in the basement, but for what reason, is yet to be seen.


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