Coming to terms with the diagnosis:
In the early days following our son’s diagnosis of Smith-Magenis Syndrome (SMS) my husband, Charlie, found an internet support group on Yahoo. He begin e-mailing other parents who also had children born with SMS.
Within the first couple of days, a father of a teenager informed us that our pain would reappear every time our son missed a milestone; like driving a car or getting married. He ended this motivational speech with the comment that we should "prepare ourselves for a life of perpetual sorrow.”
Perpetual Sorrow! Who would say that??
We stared at the computer screen.
“Bummer,” Charlie whispered.
I swallowed the lump in my throat.
“Perpetual sorrow sounds like one of those shrines you see on the evening news with cars lined around the block,” he said.
I had visions of ketchup tears streaming from our wedding portrait.
“I don’t think that we want to live in perpetual sorrow,” he said.
I nodded in agreement. That wedding picture was the last time my hair and makeup were done, on the same day.
“Then we won’t,” Charlie declared and he turned the computer off.
It was a long time before we reached out to SMS families again.
Almost eleven years have passed since the diagnosis and two more boys were born. I think it is safe to say we do not live a “life of perpetual sorrow.” And that engaging personality? It’s true. Garrett keeps us laughing despite his challenges.
Although “perpetual sorrow” is amusing to us now, this certainly is not the life Charlie and I had planned.
We already know we will be caring for our son beyond his childhood and into our retirement years. However, we prefer to call our unique situation “perpetual parenthood.”
No, not the kind of everlasting offspring that lies on our couch and plays video games all day. It’s the kind of parenting that requires constant supervision and involves some worrisome health issues.
And perpetual parenthood will include Sunday dinners at the kitchen table. My son will always be excited to see me walk through the front door. And on every errand, he will manage to con Dad for a chocolate shake at McDonald’s drive thru. We will have lifetime visits from Santa and party hats at every birthday.
What can be sorrowful about that?
Do you remember your first contact with another parent? Was it a positive one?