I just spent some time cuddled up next to Waverly as she slept. I am sad. Painfully sad. And emotionally exhausted. I realized that I have been in a constant state of grieving for over 3 years. Since diagnosis, we have watched Wavey slowly (and more rapidly as of late) lose her skills. I am daily noticing a change, missing a behavior. She has no more words. No more songs. Her walking is deteriorating. She cries more often. I wonder if she is in pain or if she is scared. Her ability to swallow is disappearing. Even the light in her eyes is more difficult to see. My baby is being taken from me, piece by piece. And I feel helpless.
And then I look in the next bed over and see Oliver. My beautiful baby boy. Only 4 years old and has already started the descent into regression. Losing skills he at one time mastered. Never having heard him speak a word. He has peaked in his development. We have moved from gaining skills to maintaining them.
The weight of their future is so heavy tonight.