A little over 18 years ago, I felt like I got burned.
Here I was, our third son had just been born, and within an hour, the very intelligent, but awful-bedside-mannered geneticist was in our room, suggesting this must be “the saddest day of your whole life.”
There’s something within me, hearing those words once more, that makes me want to fight…
No, I give no man the power to declare for bad or sad what God has allowed to play out for good.
It wasn’t that the day wasn’t hard or sad or other perhaps well-intentioned adjectives. I just knew that such wasn’t the way it had to be.
There’s something about having a child born with a disability that’s humbling from the onset. There’s this big pit in the stomach and gulp in the throat that parents who share this experience can immediately recognize in one another, just looking them in the eye. It’s a little of this, “Lord, how in the *&$%#! am I going to do this! You trained me for something else! I have all these plans… all these expectations…”
And just like that, you have to throw the plans and expectations right out the nearest window.
For Josh, it was trisomy 21 — Down syndrome — or a third copy of that twenty-first chromosome. Additionally, he had an atrioventricular (AV) canal defect, meaning there was a hole between his heart’s chambers and the valves that allow the blood to flow — an unsurvivable condition unless fixed in the early months of life.
Also for Josh, he got sick before then with a nasty respiratory virus (aka RSV). As documented here, we spent most of the month of March of 2002 in the cardiac ICU wing at Cincinnati Children’s Hospital. Joshua was on a respirator most of that time, unable to breathe on his own, with many moments terrifyingly touch and go.
But once the shock wears off and the medical issues are for the most part dealt with, then comes real life. Real life for the parents of children with special needs means changing your expectations, loving them just like any other kid, preparing them for adulthood, focusing more on what they will teach you as opposed to what you will teach them.
I can remember thinking at some point in those early years… “Yeah, fine… this is all well and good and true. He’s kind of cute right now. And everyone always talks about how loving kids with Down’s are. But what about when he’s not so little any more? What about when he’s not so cute? What about when puberty’s past, and he has man hair and everything? What will we do then?!”
And if I’m honest, I admit. That day scared me.
Friends, today is that day.
Today, Josh finishes his last day of high school.
And it’s a little crazy. I mean, with the spring of 2020 being nothing like how we thought the spring was going to be, the reality is that the story of my life is nothing like I thought it was going to be.
But what’s crazy?
It’s better.
I have learned more. Grown more. Been tugged and stretched and maybe cried more. Learning more about who God is and who I am in relation to him. But it has never been anywhere close to the so-called saddest day.
Four days ago, I was standing in my kitchen, so proud of myself for being again really creative, making a homemade, pretty gourmet-ish, spicy sauce. As the container I was holding slipped out of my hand, I instinctively brought my non-oven-mitt-covered hand over to catch the falling container. I then quite painfully burned a good two-and-a-half by four inch section of my left wrist. Friends, it was nothing short of awful.
Just yesterday, no less, I looked down at my still sore, probably-now-scarred arm and noticed something…
Right in the middle of the charred skin, there is a well defined, small shape. Clearly, there is a heart, smack dab in the middle of my wound. Yes, I was wearing a thin bracelet with a small heart charm. With burning hot sauce caught on the charm but the bracelet not immediately removed, the charm essentially served as a branding device on my wrist. But what was crazy, was that it was only when I was willing to look a bit past the burn and the pain — which still sometimes exists — could I finally see the beautiful. And now, that is all I see.
Congratulations to our Joshua. What a glorious day today is… what a special celebration!
It is beautiful indeed.
Joyfully…
AR