Normal isn’t necessary

Posted Monday November 07, 2011 by Melissa

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.

Laughing CaseBut 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.

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2 Responses to “Normal isn’t necessary”

  1. Hi Melissa – I am not sure how often you read my blog, but in case you missed it, you are mentioned on my blog…

  2. So beautifly said! Thanks Melissa!