Every single day, I lose more of my son and it hurts beyond words


His body and mind betray him in ever increasing ways. His memory fails. His body doesn’t respond to his will. His joints, muscles and bones hurt. Thinking becomes harder and harder for him with each passing day.

This video talks about Childhood Disintegrative Disorder.

We have a new round of specialist appointments beginning on September 4th.

I know going into this, there nothing that can fix whatever is causing these things to happen. I harbor no illusions and live very much grounded in reality. It’s not about giving up hope, it’s about self-preservation. There’s only so much we can do and openly admitting that is soul crushing for me.

The purpose of these upcoming appointments is more about quality of life than anything else.

If we can find ways to help him with his pain, that would be a truly amazing feat. It doesn’t fundamentally change anything but providing him with comfort is undeniably important and the very least we can do.

We also need to figure out what, if anything is wrong with his legs and we’ll hopefully begin that process on Tuesday. It makes sense to first rule out any of his neurological issues as being the culprit and go from there.

Also on the list of upcoming appointments, you’ll find rheumatology, hematology, neuropsych, genetics, gastroenterology and wherever we are sent from there.

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BeckyW

I am so sorry Rob.

Rg74

A truly heart breaking time for you all im sure,I wish you all nothing but the best for the future.

LTJ

I’m so very sorry, Rob. Truly.

Lisa Blycker

Rob, I’m so sorry for all that you and your family are going through. I wish I had words to comfort… https://t.co/yCTCbNwRb8

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