Last month, we took Parker to the neurologist. It’s a trip (81 miles each way) that we’ve made quite often. This time, though the news was the same (the EEG still showed seizure activity) the doctor said he doesn’t need to see him until April 2012, anticipating that puberty will either help Parker move beyond the seizures or exacerbate them. Thinking about having that long of a break between visits actually makes me nervous, although I’m very grateful that Parker gets to have a normal couple of years.

In my mind, I think about all this little boy has been through – the blood tests, the twice daily medicine that makes him tired and slowly damages his liver, the moments just after a seizure when he can’t even remember who he is – and I realize how amazing he is.

Parker was two and a half the first time he had a seizure. It was Derek’s 16th birthday, and we were getting ready to head to the bowling alley to celebrate with a pizza and bowling party. Parker was down for a nap.

It’s funny how certain moments in time freeze in your memory. When Dave came down the stairs and said my name, it was like the way he said my name started a recording in my brain and I can relive every detail of the next few hours as though it happened yesterday and not nearly eight years ago. All Dave said was, “Shadra” but in that one moment, hearing the fear and anxiety in his voice, it didn’t matter what he said next. I knew something was wrong. I felt my heart pound harder and my gut clench.

“Something’s wrong with Parker,” he said. I knew immediately what was wrong with him, from the way his eyes were rolled back to the spit running down his mouth, to the way I could look into his eyes and see that he was there but not.  I grabbed the phone. We lived in a small village in New York, and there was no 9-1-1 there. But we’d trained the kids how to call dispatch and we all knew the number. I called and begged them to send an ambulance right away.  Then I took my son from my husband’s arms and rushed out the front door to wait.

I could hear the ambulance siren by the time I got out the front door. It was January. Cold, because it was New York and our part of New York was always cold in January. I could not tell you if it was snowing or if there was snow on the ground. I am sure my bare feet were freezing, but I didn’t notice.

I climbed into the ambulance with him, still cradling Parker in my arms. He came out of the seizure and started to scream. The EMT on the ambulance said that was good. But then he stopped—just stopped. I was holding him on the stretcher. His eyes rolled back. He stopped breathing. His little arms and legs didn’t jerk this time…he just wasn’t moving. They had to push me out of the way and breathe for him, try to keep him alive.

It’s only a two minute drive from our house to the hospital in our village. In that two minutes, I could remember every moment of my life with my son in it. How I’d been told I couldn’t have kids, but came home pregnant from my honeymoon and called my sister, who had just found out she was pregnant with twins, at 5 o’clock in the morning to tell her we’d be pregnant together. How I was in labor for 26 hours and he almost died because nobody knew his umbilical cord was over his shoulder and every contraction compressed it. How after he was born I could just lay next to him and look at him and smell his head and touch him for hours and be happier than I’d ever felt. How I’d watched him grow day by day into a brilliant little toddler who could already recognize the alphabet, could sing almost every Journey song, and who had a giggle that could make the saddest person smile.

As I handed Parker his pill today that keeps the seizures mostly at bay and he thanked me for his medicine, tears well up in my eyes. He’s still here, still making me and everyone else who knows him smile. He takes his medicine with no complaint. As I look at him, his head reaching now almost to my nose, I reach out and ruffle his hair to the sound of an “aww, Mom” I smile. My boy is still here, and I am so grateful.