Meet the McNeil Family

Meet the McNeil Family

Tuesday, October 15, 2013

Oliver, too

I forget that Oliver has Sanfilippo sometimes. I forget that he is going to travel the same route as his big sister. He is the baby. He has been our mobile one. He stays near me and holds my hand as we guide Waverly's wheelchair. We are beginning to see more changes in him. He looks *lost* more often - eyes turn a bit vacant, stars off into space, delayed responses. Sometimes he cries. I worry the changes in his brain & body frighten and frustrate him. He is beginning to have more difficulty with usual tasks. He can no longer pull himself up into the van on his own. He gets into position, but simply doesn't have the strength to push up on his leg and climb. He is also showing more stiffness, especially when sitting for short periods of time.

My poor little boy.


3 comments:

Anonymous said...

Such a sweetie, He is getting so big! Yet my heart does ache along with you. I have been following your blog for a few years now and had never heard of MPS before even though I am a scientist.

Christine said...

Praying for you, that God would fill you with grace today. Grace to face a heartbreaking tomorrow, and a heavy today. Such a tall order and words seem so empty, but nothing is impossible with God.

Susan said...

He is so sweet. That would be extremely hard to watch, and wondering how aware he is of the whole situation. Have you ever read the book "Under the Rainbow" by Catherine Campbell? I read it recently and thought of you.