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The Rest of the Diagnosis Story

At one point during Collin's lengthy bedtime routine Saturday, Kyle clipped the top of the lava lamp with a pillow. "Phew Collin!" he said as it teetered back into place, "That was almost catastrophic!"

And in that moment I realized that my post on dealing with diagnosis wasn't quite right, with its our-diagnosis-is-a-tool and lah-tee-dah. The things I wrote were true, they just weren't complete.

Because that wasn't our first diagnosis.

I can see myself, clear as day, in the wicker chair from the bedroom of our old house, this same laptop on my knees, watching videos of other babies doing the same, strange jack-knife move my own four-month-old baby was doing five, ten, twenty times in a row throughout the day.

If your baby is doing this, the kind, pitying description explained, calmly pack your things and go to the nearest children's hospital.

Infantile spasms, it said. A catastrophic seizure disorder.

It was a Sunday. Kyle's first Father's Day. It was shortly after my mom had moved back home, a sign that I had really survived my death match with postpartum despression. The three of us were lounging in our pajamas and I was planning on making blueberry pancakes - one of the first normal things I had dared to dream up since Collin was born. It was like I had relaxed enough to take a deep breath, but what I drew in was two lungs full of fear.

Because there's no other way to describe it. Terror. Horror. As I read in the online support groups that day about parents ordering hospital beds for their children. As I saw the looks on the faces of the technicians during Collin's EEG. As we were escorted to the emergency room straight from the incomplete EEG and told we would be staying.

Though we cried off and on for days after Collin's Infantile Spasms diagnosis, we didn't really feel the despair until later. We were too hopped up on fear to have room in our blood for good old grief. I had trouble eating. We didn't sleep well for a long time. I could feel a dark force descending on me and through it swirled unfamiliar machines and equipment and injections and medications. I braced myself for the storm, but felt sure I would be swept away.

I had no way of knowing that the contents of that storm cloud would eventually condensate and fall out of the sky over my head, that the soil of my life would soak them up. They wouldn't litter my landscape - they would be used to form it. And even though that landscape looked like an uninhabited and inhospitable place to me at that time, I couldn't have known that I would learn to be genuinely happy there. 

That Sunday was the first time I remember Kyle saying our mantra: Collin is the same today as he was yesterday. It wasn't a particularly rosy sentiment, so I was surprised at how comforting it was. The comfort came not from being easy, but from being true. I hadn't lost my ideal son. I had been loving the wrong version of him all along. My version, not his. Now I had a chance to look back and see his first months through different eyes; in a very real sense, to see what I had been missing. 

But not even these insights could penetrate the fear of those early days after the first diagnosis. It was consuming. I felt lost in it and couldn't catch a glimpse of anything through it. If only I had known there was a me somewhere out in the future who would write something like this. That she would be healthy and grateful and cheering me on.

So now, on those days that are so much harder than all the others, I imagine a me I don't know, years away, thinking and reading things I can't imagine right now, looking back on me with compassion and pride.