I will begin by saying: the below blog is NOT mine. My friend Melissa wrote it, but it echoes my thoughts and sentiments and it is so well written, I wanted to share it. Now, I will say I’ve not given up on my hopes and dreams that Trey may get married or hold a job or travel. I still have those hopes and dreams. But the whole ‘normal’ thing? I completely agree.
Melissa, I am so SO fortunate to know you. I have HOPE. Not only that our boys are going to live a long time, but that more and more people will let go of normal. Not only for our boys, but for all of us. So we can finally relax and be ourselves! Enjoy:
“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?
- First, I have hope that he will live longer than 12.
- Second, I have hope that he still will be running at 12.
- Third, I have hope that he will still be talking to me and understanding me at 12.
- Fourth, I have hope that he be eating, breathing, and laughing on his own at 12.
- Fifth, I have hope that my older boys will not have to bury their younger brother … ever.
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.
But I feel like there is no longer a clock running. A clock running much faster than yours or mine, ticking in my ear all the time.
The clock is now drowned out by the laughter of a playing child.”
By Melissa Hogan