Larkin is getting ready to return to school and her current leap in personality and development has been a joy to watch. I had chalked all my current emotional tears up to pregnancy and Thirteen about to become Fourteen. Then I looked at the calendar.
It was two years ago this week and exact date that we sat in St Louis Children’s and I heard the words “it looks like Lennox-Gastaut syndrome” and I leaned back heavily against a counter top and whispered, “that’s a death sentence”.
Those times in your life when you are hit hard with news, that is beyond your control, beyond comprehension, beyond breathing, beyond hearing, beyond – beyond.
I’ve had a few of those times in my life as I am sure everyone has. No matter where you are in space and time your body & mind absorbs the news, and just like a muscle, it remembers. Remembers the moment, second, millisecond, like a slow motion movie where you want to throw yourself at the person and scream for them to stop talking. Take it all back and life goes back to that second prior when all was in order.
We fought back for last 2.5 years. She has fought bravely and tolerated more than any human being should. She has withstood things that no child should ever have to.
I had sent Andy to the hotel to sleep that afternoon so he wasn’t there when the doctor gave me the news, which I thank God for. He needed me to be under control to deliver that news and it took me a few hours. I called my friend Diane in California who listened as I barely got the news out because I was sobbing so badly. Diane has a beautiful daughter named Erin who also has Down syndrome and Infantile Spasms, the first type of seizure Larkin had already been fighting for 14 months. Diane and I connected through a network of friends and I helped her when Erin was diagnosed with Infantile Spasms so she understood the true terror that I was feeling.
Lennox-Gastaut syndrome is the very last thing you want to hear in the seizure world.
The emotion a parent feels after sheer terror is anger – and I came out swinging. Larkin started a new drug regimen, continued on the Ketogenic diet and life became taking it one day at a time. This is the same time when the docs had the “death talk” with us and I wrote about how we are the “Rarely family” as everything we have heard since this child was 3 weeks old has been operating in the .002% margin of “normal.” HA! Normal. I have grown to despise that word in any setting and today I use the word typical to describe those who operate outside of that percentage.
Fast forward to this same week in 2009. Tears come easily but this little girl today is not anything close to what my dark thoughts conjured up in 2007. It hasn’t been easy but it has been worth it. We appreciate the small moments, little accomplishments, and that life is so very precious. I talk to parents across the nation and world, staying in touch to help them through the very same dark moment that I experienced, showing them pictures of a little girl that today is using her walker, laughing, looking us in the eye, eating peanut butter and jelly, and most of all thriving. Hurricane Larkin is creating her own riptide.
We are loved and cared for by our family, friends, community, doctors, and others. Just this week after my last post I found out that Angie and Libby both picked up on my pain in a moment of time and knew that I was feeling fragile – but I had no idea that they noticed. They did and their hearts broke with me and for me and their empathy and kindness brought more tears. Tears of joy that this little girl with all her challenges has changed those around her.
Today I hold a pocketful of sunshine. “I got a love, and I know that it’s all mine. Do what you want, but you’re never gonna break me. Sticks and stones are never gonna shake me. Take me away to a secret place. A sweet escape take me away. Take me away to better days. Take me away a higher place. There’s a place that I go, but nobody knows where the rivers flow, And I call it home And there’s no more lies. In the darkness, there’s light and nobody cries there’s only butterflies.”
Enjoy your weekend and stop to smell the flowers and hold your very own pocketful of sunshine.