Our son had his first seizure recently. We were aware that these episodes could be on the horizon for him.
We knew that he was at risk. But as the years and days went by I thought that perhaps we would escape them.
We would be the lucky ones who didn’t have these in our life.
It was a regular evening, just hanging out at home. I was snuggled on the chair with our oldest while our youngest was asleep.
Our 5-year-old, who has PMM2 CDG (congenital disorder of glycosylation) was happily winding down, laying on the floor, watching one of his favorite shows.
I heard an odd sound coming from him so I quickly went to him and scooped him up.
It was then when I held him that I knew that something was very wrong.
He was completely lifeless and unresponsive. I immediately told my husband to call the paramedics. I patted his face and called his name over and over to get a reaction.
I lifted his arms up and they slammed to the floor. I laid him on his side to monitor his breathing and to ensure he had a clear airway.
My husband described it best, his body was like jello in a pillowcase.
Our little boy was not there.
I remained calm but in my head, I kept screaming not today. Not today.
Time went on and we loaded up in the ambulance for our ride to the hospital.
After twenty minutes or more he started getting agitated. I could finally breathe. He was coming around. Our little boy was back.
It was one of the most terrifying and isolating incidents I’ve ever gone through.
We were the only ones to witness our son’s face changing colors and his chest barely moving. We saw his fixed expression as I carried his lifeless body out to the ambulance in the snow.
We then had to tell doctors over and over what had happened, and my descriptions could never do justice the traumatic experience.
I wanted them to feel what I was feeling. I wanted them to see what we saw.
I wanted them to assure me that this was a “one-time” incident. But they can’t.
They can only prepare us for more. I even felt isolated among my friends. I was met with questions of “are you sure that’s what it was?” I have never felt so alone.
It’s already isolating when you parent a child with a rare disease, but this incident only made me feel as though my island was getting even smaller.
It wasn’t until the next evening that I took a drive home while my husband stayed at the hospital and I allowed myself to break down.
After holding it in for a day, I cried the entire drive home. I called a girlfriend and let it all out.
I even had quite a few choice words to say. Cursing and tears. So many tears of fear, worry, and relief.
Now we have this to worry about which scares me tremendously but most of all I was so grateful he was ok.
I took comfort in connecting with other parents who have had similar experiences. Texting and messaging them meant more to me than they'll know.
I felt validated and started to feel less alone. I was so grateful for everyone who reached out to our family during this time.
The notes of encouragement and well wishes didn’t go unnoticed.
So, we had our first seizure. It’s over. I’m still processing it and every now and again I go back to that night.
My mind goes back to those awful thoughts. My chest tightens as I imagine holding his lifeless body.
But then I go hug his squirmy little body and kiss his warm neck just to hear his giggle.
I sing songs with him just to see him smile.
I remind myself that every day with him is such a blessing and no matter what curve balls life keeps throwing at us we’ll manage them head-on.
All we can do is prepare for another. And be grateful for every single day.