Today is Case’s diagnosiversary.
April 6. Four years ago today.
It wasn’t the day that some doctor came in and told me Case had Hunter Syndrome. But it was the date that I knew he had it. From pictures, from symptoms, in my heart I knew it. Two days later was a doctor’s first referral from that information but the final, genetic confirmation did not come until June 16, my birthday.
And no event could have brought us full circle to that day more than the past week.
This past week, as a family, we spent 3 days of our spring break in Gatlinburg, Tennessee en route to Case’s clinical trial dosing in Chapel Hill, North Carolina (where we then spent the last four days of our spring break before driving home again).
Four years ago, we spent our spring break at that very same resort in Gatlinburg, but we haven’t been back until now. That week was critical in our lives, because that was the week my mom got to see Case’s symptoms first hand.
It was at the end of that week that my mom first said the words “Hunter Syndrome” to me, the condition she saw on Mystery Diagnosis that ever since, she had prayed would not ever apply. Her words sparked my internet search that felt like it was out of a nightmare.
Pictures that looked all too familiar.
Symptoms that I knew too well.
If you really want to know what that day felt like, you can read this excerpt from Dragon Mom Emily Rapp’s book, The Still Point of the Turning World, about the day her son was diagnosed with Tay-Sachs disease. It was a very.raw.day. and continued on for months that way. Some days you would wake up and have almost forgotten, and then the truck would hit you again out of nowhere, so it was like it happened day after day after day.
But here we are again, four years later.
We went swimming the first night and it was so hard not to cry, because in my mind I could remember the picture of Case (above) that came to symbolize the break from happy, normal, innocent life that would spiral down into devastation. Here was my sweet child, and when I look back at that picture, I saw the vacancy that Hunter Syndrome had begun to create in him. It is a look, a vacant look, and it came to be all the more common over time.
But four years later, life is very different. It has felt like a roller coaster that frankly, many times I wanted to jump off of, but which has become one of the wildest rides that even I couldn’t fathom from the beginning.
Around when Case was diagnosed, the song Wait and See by Brandon Heath was being played on the radio. I would sing it to myself as some small reminder that even though it felt as if life was over, this was not the end for Case or for us. Our job was to wait and see the miracles that God could perform. These lyrics were so penetrating:
I was born in Tennessee
Late July humidity
Doctor said I was lucky to be alive
I’ve been trouble since the day that I got here
Trouble till the day that I disappear
That’ll be the day that I finally get it right
There is hope for me yet
Because God won’t forget
All the plans he’s made for me
I have to wait and see
He’s not finished with me yet
We have gone from
normal … to … complicated … to … changed
innocent … to …. devastated … to … thankful
preoccupied … to … occupied … to … present
And that is the difference 4 years can make.