Drowning

I have said in previously entries that the sadness stemming from Sanfilippo is like waves.  Tonight, I felt like a gigantic wave swept over me and won't allow me to take a breath.  In as much as I try to celebrate the little things, some of those little things are reminders of this horrible disease.  And as they stack up around me, I feel as if I am drowning.

Oliver is changing.  

In the past few weeks, he has had his fingers in his mouth incessantly.  Today while we were in his OT and PT's office, he was trying to play with some cars and blocks, but all he could do was chew on them.  I could see the struggle within him.  He was getting frustrated, because he just wanted to play.  However, the oral desire was too much for him to resist.  I remember seeing this same behavior in Waverly.  He also used to "flex his muscles" when we asked him if he was strong enough (it is from a "Mickey Mouse Clubhouse" episode).  Tonight when we asked him, he became agitated and threw his cup.  I tried a few times after that and each time I got a blank stare.  Granted, he could simply be not in the mood to *perform*, but it felt different.  It felt like he couldn't figure out how to do it anymore or had forgotten.

These behaviors aren't unexpected.  I knew they would manifest eventually.  I knew we were getting near the time when we really began to see differences in Waverly.  Knowing doesn't make it any easier.

I look at my beautiful babies and I weep for them.  They deserve better.

When the waves of sorrow come crashing in on me, I become aware of all of those things around me.  The Dad teaching his little boy how to ride a bike.  The mom walking with her little girl on a scooter.  The kids in the library selecting books to read.

I wish my kids could have those same opportunities.  I wish I could have those moments and create those typical memories.

I am confident these waves will ebb and recede back where they came from.  But tonight they are washing over me, holding me under.  The tears flow, forcing me to succumb to the sadness.