Friday, October 10, 2014

Super Cam


If ever there were a nickname befitting my son, it is most certainly Super Cam. His first act of heroism was saving my life in utero. His tiny kidneys filtered blood for both us, when my own were failing. He rushed into the world ahead of doctors and nurses, who were woefully unprepared for his arrival. We haven't been able to slow him down since. He's a force of nature, a charming flirt, a boisterous clown, and the most compassionate child I've ever met. I know I'm biased, but consider the people whose lives he's changed:

-There was a woman he met in the grocery store who was going through chemotherapy, and had lost her hair. When he asked her why she was bald (to the chagrin and mortification of his mother), she said she was sick and the the medicine she took made her hair fall out. Cameron didn't hesitate to wrap his little arms around her and tell her "I have seizures," followed closely by "take your hat off, the sun helps things grow."

-There was a little girl in his class who wouldn't engage with other children. He didn't care, he talked to her anyway. He figured out the things she liked and slowly got her to smile at him. It seems so simple, but it was a first for this little girl and the most natural thing in the world to Cameron.

I believe that he has the purest heart of anyone I'll ever know in my lifetime. I've watched in awe, his ability to draw someone in with his charm, and change the way they see the world before they ever know what's hit them. That's not to say that he doesn't get frustrated, have tantrums, and drive me to the brink of my sanity every single day. He can't help it, just like he can't help but make everyone he touches a little better than they were before him.

Cameron has his own set of challenges. He's autistic and suffers from epilepsy. As his mom, and most avid advocate, I've worked hard at establishing an environment in which he and his big brother can thrive. I've got to say, we've done remarkably well. Cameron is a very happy little boy, and so is his brother. At the end of the day, that's all that matters to me and my husband. We've had to remind ourselves to focus on that this week. Like everything in life, nothing stays the same for long. Change is a guarantee. Pain is inevitable. Suffering is a choice.

On Monday Cameron was diagnosed with Myoclonic Epilepsy, a far cry from the Childhood Absence Epilepsy he'd been diagnosed with at two years old. We weren't prepared to hear what a diagnosis like that meant. We always knew that Cameron would face limitations that other children his age would never face, due to autism. We never expected that epilepsy would dwarf what autism did to our family. Children with epilepsy typically outgrow it. Not Cameron. His seizures morphed into the kind of seizures that are hardest to treat. The kind that are drug resistant, and uncontrollable. The ones that often lead to SUDEP (Sudden Unexpected Death in Epilepsy). We can change his medication, but we'll never be able to stop the seizures entirely. Eventually the drugs will stop working, and I can't even let myself think about what will happen then. I'm not supposed to outlive my son.

1 in 58 boys have autism.
1 in 30 autistic children develop epilepsy.
1 in 100 epileptics who suffer from drug resistant seizure disorders die from SUDEP.
1 in 1,000,000 - Super Cam.

Here is my pitiful cliché: Life is too short to waste on anything less than joy. My goal for Cameron is the same: Happiness. The goal I have for myself: Gratitude. I'm trying to find a way not think about how long we have left with him. No one can predict that. Even when someone's life expectancy is abbreviated, it's a crapshoot. In the middle of this nightmare, I'm reminding myself how blessed I am God chose me to be the mother of the most extraordinary little boy. I'm continuously in awe that he is mine. Our future is far from certain but I'm looking to the forward with a grateful heart, because I know that every single moment left is a gift.  xoxo- Maggi