Monday, October 6, 2014

The gray area

I struggle with how much to share publicly about my son's delays and issues.  It isn't because I am ashamed or embarrassed because if you know me you know that I am fiercely proud of my son.    It is because part of me wants to protect his privacy.  I am happy to talk about his therapies and issues in person but I hesitate to make a digital imprint of his struggles and triumphs because they are his and his story to tell.  And also because we don't know exactly "what" we are dealing with.  There are so many questions.   It seems as we round the curve on one question, another one pops up.

Sometimes I feel like I am bursting at the seams because I think about it so much but talk about it so little.  I analyze his progress, his regressions, and wonder what we should be doing differently.  I try to set up my work week so I can be as involved in his therapies as possible.  When we are not at work, preschool, or therapy I am trying to figure out ways to work on his therapies at home.  Ways to hit all the areas where he needs work in our limited time together.  Or trying to figure out which activities or tools would get the most bang for our buck.

This week we may get some answers to his delays.  Or we may not.  And I am not sure what is the better hand to be dealt.  He is having an MRI of his brain done on Wednesday.  I can't help but think about it nonstop.  Will this lead to answers?  Do we want to know the answers?  Will I be disappointed if it doesn't lead to a better understanding of what is going on?  Because that means we have to keep searching and wondering.    I am stuck in this gray area of wanting answers but being afraid of them.   And in many ways - not having answers is scarier to me. 

Regardless of the outcome of the MRI I am really dreading the actual procedure.  Fisher will be sedated and he has a very hard time with anesthesia.  This is just sedation and not anesthesia so I am hopeful it won't be as bad - but I am dreading it.  He is very scared of needles and the last time we had to have blood drawn was awful.  So please - send good thoughts and prayers to my sweet little guy.  I can't help but think he doesn't deserve to have to deal with all this.  It isn't fair.  But we all now that life is not fair.   So maybe throw a prayer in there for his mom too - I know she could use it.