Meet the McNeil Family

Meet the McNeil Family

Sunday, November 20, 2011

Changes

I have written often about missing Waverly's voice. She used to love to chat, sing songs and recite her favorite books & nursery rhymes.  She had a beautiful voice. Oliver never really spoke. He babbled a lot as a baby, but it never developed into language. Aside from a few simple approximations, I have never heard him utter a word. However at the end of each "Mickey Mouse Clubhouse" episode, he used to belt out his version of the word "house" to close out the show.  His hands would be thrown out to the side, head tipped back and a loud song/scream would bellow out. I used to love watching MMC with him, simply because I loved to hear the enthusiasm in his voice. Sadly, he no longer does it. I noticed the change a few months ago, but today it hit me just how much I miss that sound.

We are entering the phase with Oliver where the changes begin. Sanfilippo reveals itself more and more, slowing changing the behaviors of my sweet babies. Last week his teachers told me he was falling randomly in the classroom - not tripping or throwing himself down in anger, but just legs giving out. His hands are in his mouth more, trying to meet the intense desire to chew. All signs of Sanfilippo beginning to take over.

I have watched the changes in Waverly. I knew they were inevitable in Oliver. Nothing could prepare me for them and they are most definitely not easier the second time around.

2 comments:

in a world surrounded by men said...

Ugh. What can anybody say? Nothing to make it better, but I can't be silent. I'm so sorry that you have been allowed to endure this painful trial. My prayers are with your family.

Pamela said...

I'm so sorry :( I wish I could do something to make this better for you. You are in my prayers.