When your child is diagnosed with MPS, you are told or you read about the future. Your child will continue to physically and in most cases, like severe MPS II, mentally, deteriorate until you lose them at a young age. This is the future. You know in the back of your head that reading is not really a possibility, independence, playing most sports, high school graduation, a job, and the like are most decidedly not in their future.
So here we sit.
And I find myself unknowingly doing things that show I know Case has a future, a future like many children.
For example, I found this great project on Pinterest where you get a copy of Oh, the Places You’ll Go! by Dr. Suess and you have all of your child’s teachers write a note in it all the way up to high school and then you give them the book for their high school graduation gift.
Without even a thought otherwise, I bought one for all three boys, including Case. My brain now assumes not only that Case will reach that magic age and event where he graduates from high school, but that he will be cognitively aware enough to understand and appreciate both the effort that went into this 13 year project, as well as and especially the words of his teachers.
Maybe I’m assuming too much or putting too much hope into this medicine. But I’d rather assume the best than worry with the worst. So that’s what I’ll do.
Oh, the places you’ll go, my child.