I started this blog because I thought maybe sharing our experience with others might help them along their journey. Kiefer's journey isn't a simple one - we travel two paths simultaneously. We are going down the ASD path as well as the epilepsy path. Neither path on it's own is easy. They are both fraught with struggles, therapy, homework, meltdowns, investments in time and great patience - and yet our little Kiefer has to travel them both. He amazes me really. With all he has to deal with - it's become his normal and yet he remains positive. He still gets 'talking tos' about too many hugs and hands on - and let's be clear: hands on for Kiefer equals too much love. Hugs and kisses to people that might not always appreciate them. We're focusing on high fives and fist pumps but man that kid loves to cuddle! I know it's the right thing to do - a cute little 8 year olds hugs are sweet ...but when he's 16 and hugging strangers...it's ...well... creepy. But a small part of me wants to bottle up that innocence and sprinkle it on top of the world. Wouldn't the world be a better place with just a little more innocence to go around?
Recently, we participated in a series of trials at Sick Kids hospital. In the early days of Kiefer's diagnosis, I was frantically searching online for something or someone who could help us. I stumbled upon Dr. Scherer - a doctor who was nominated for a Nobel prize in his work on Autism who works through the Hospital for Sick Kids in Toronto. SURELY he could help us. I emailed him in the wee hours of the morning, through my tears pleading for some sort of help, admitting I didn't even know what that help looked like. He did take the time to email me back and point me in the direction of some resources. He also informed us, however, his work was mostly to do around research and he wasn't taking on any more families at that time.
Fast forward another couple of years, a barrage of tests including EEG's, CAT scans and more blood work than an 8 year old should have to go through, and we discovered that at the heart of Kiefer's diagnosis was a genetic disorder.
When we got the news I felt numb. I wasn't sure what to feel. A part of me released 8 years of guilt. That sushi I had early on when I wasn't sure I was pregnant, that slip down those couple of stairs, the stress I was under during the pregnancy, and the list goes on and on. All of the sudden none of those things mattered anymore. When sperm met egg his genetic fate was sealed and there was NOTHING that I did or could have done to change that. I instinctively STILL feel guilt sometimes thinking maybe I should have taken more vitamins but then I have to remind myself it was all biology. Nothing I could have done could have changed it.
But then I think nothing I can do will ever change it. It is in his genetics. It's in his DNA - the very road map of how he is built and made and nothing I ever do will change that. And it feels isolating and helpless.
And then he looks at me and smiles and says, "Mom, you need a hug?" and stretches his arms out wide and gives me the squeeze that restores my faith in everything that he does and the waves I know he is going to create.
So now I was armed with this new knowledge, I emailed Dr. Scherer again. Kiefer's genetic disorder is extremely rare. So rare in fact that there are only a handful of documented cases in Canada EVER. Like in the history of documenting these things - a handful. So Dr. Scherer emailed me back and said he would love to have us be a part of his trials and perhaps he could shed some more light onto our situation. And in the grand scheme of things, studying Kiefer's genetics could help lead to a discovery down the road.
We spent an entire day at Sick Kids answering questionnaires, doing tests, and then eventually doing blood work. Let me tell you, the kids didn't even FEEL the needle - Sick Kids is so awesome! It was a long day - and we have no results back yet - we actually have to complete some more telephone interviews - the process isn't even done! But every little step is a step forward.
After the trials we decided to do something fun with the kids - so we took them through China Town. A walk right up Spadina - going into all the shops and malls. The kids buying little trinkets and marveling like they were actually IN China. Giggling about all the strange and exotic foods out on the sidewalk and even trying some treats from a bakery. It was the perfect ending to a long day and all the stress of the tests and getting pricked with needles melted away to a distant memory.
The waves are coming. I can just start to feel the ever so slightest breeze against my skin. I know those waves are on the horizon. And they are going to be so beautiful. xo
