We’ve had a lot of questions surrounding Case’s current abilities since entering the clinical trial. People hear that he’s doing really well and wonder, “How well? Is he normal?” We’ve had questions both from MPS parents and friends outside the MPS world that circled around the question of whether Case is now, close to, or will ever be “normal.”
Let me set the record straight. I am not normal.
Case is not normal. Are you normal?
But the rub is, I don’t think the miracle necessarily involves making Case “normal.” What I hope it involves is giving us a longer life with Case, but with the lessons we’ve learned (and continue to learn) from MPS intact.
If you talk to any MPS parent, they will tell you about the amazing lessons they’ve learned and people they’ve met from having MPS in their life. I wouldn’t change that and I’d venture to say most other parents wouldn’t either.
So when your child has a disease where the literature estimates the average lifespan to be between 12-15 years old, you let go of normal a long time ago.
Letting go of the dream of our children going to college, letting go of them ever getting married, having children of their own, that was the easy part.
Letting go of them living, now that is the hard part.
So to be clear, when I say that Case is doing “absolutely fantastic”, what does that mean?
Do I have a guarantee of those? Of course not.
But neither do we have a guarantee that we will wake up on this earth tomorrow.
The clock is now drowned out by the laughter of a playing child.