Special K

Today we attended a memorial service for Janet Kay Zaborek. Janet Kay was born in 1996 with Down syndrome and multiple health issues. She was adopted by the Zaborek family and given more love than she ever would have received in 100 years. She was not expected to live more than a year, and defied the odds for the next 15. She died last week form a blood clot after surgery. She was an extraordinary girl, sweeter than candy and tougher than nails. She was also diagnosed with autism.
Janet Kay always seemed to be a twin of a different mother to our son Mitchell. She behaved much in the same way and even looked a little like him. The Zaborek's also have a son with Down syndrome, so they are no strangers to the condition.
We saw quite a few families a the memorial with children of all stripes and disabilities, but I must say among these parents I saw a bit more angst in the eyes of those with severe health issues. We know the road in the medical wilderness all too well. My wife and I consider ourselves extremely fortunate to not have to go down the roads of some of these folks. They often have to endure countless days and weeks in recovery rooms, all laden with the same fears that one day their child might not come home.
Mitch has to be put under in order for the dentist to work on his teeth. He is much too strong and wiggly to be restrained while he is conscious. So every year and a half we go to children's and grit our teeth for three hours in order to save his. He's on to us, so it's impossible to get him anywhere near those double swinging doors. The last time were able to coax him into a wheelchair and wheel him backwards into the OR and put the mask on (shots only seem to make him fight more). My mistake was being positioned in front of him and looking at him as the mask went on. The look on his face was terrifying as though I'd betrayed him his whole life. I felt as though I was deliberately killing him as his face distorted and he fell asleep. I excused myself and ran to the bathroom to cry for about 10 minutes.
That image comes back now and again, as it did today at Janet's service. I know what her parents went through each time she had surgery, and watching that stage as they played her favorite song to a video montage of her life, and looking at that poster of a smiling beautiful girl intensified every emotion I've ever had in dealing with it.
Needless to say I shed a lot of tears for Special Kay today, but I am a Christian and I do believe she has gone home to a much better place. No tears, no pain and everything new. We've gotten to know to Janet Kay's parents, Robin and Bob, because of our 'kids in common'. Robin, with the help of Linda Barth (formerly of Mile High Down syndrome assoc.) has founded the Down syndrome-Autism connection in Colorado. http://ds-asd-connection.org/ Janet Kay's picture is in the middle on top with her brother Tommy.
I gave Robin a hug today and told her I felt like the luckiest idiot on the planet. I knew a girl named Janet Kay Zaborek.