We do not and have never wanted sympathy or hand-outs. We try to live as normal of lives as we can, for our happiness and sanity and the happiness of all our children, but there’s actually nothing normal about our lives. We fight Tanner’s battle with him every single day. We make necessary accommodations to our lives, our cars, our golf cart, our house, our work schedules, our personal lives. We do what we have to do to make sure Tanner is happy and comfortable. There’s only so much we can control though, and Tanner’s seizures are completely uncontrollable. Tanner has been seizing every single day since August 14, 2014. That’s 1836 days and as I already said, he has way more than 1 seizure a day. Seeing him seize is not something that we just easily get used to seeing. There’s nothing easy about it. But it is our norm.
When we came back from the hospital with Tanner’s epilepsy diagnoses, everyone kept telling us he’d grow out of it. people came out of the woodwork saying they used to have seizures and now they’re perfectly fine. Looking back now, I’m pretty sure I knew better, but at the time, I remember the thought crossing my mind of “yeah, maybe they are right. Maybe he’ll be ok. We could be lucky”. I mean, why would Tanner have to live with this when all these other people just “grew out of it”. Shame on us.
A couple years later, as we were traveling to Chicago for our very first CDKL5 convention we learned that a good friend of ours from high school had a son who was just diagnosed with Cancer. We woke up in Chicago the next morning, got on FB and read that it was terminal, and he did not have long to live. Brian and I looked at each other and said, “wow. How awful that Tanner must live with CDKL5, but he’s alive!” That little boy, who’s name is Carson, has now passed away. We have an extreme amount of compassion for Carson’s family, but shame on us. Tanner may be alive today, but we know nothing about tomorrow.
Why do I share these experiences with you? because I think its important to share the fact that we are not perfect. We are just trying to be functional. Not even normal. Just happy and functional. We are learning and we are trying just like you all are. We may not act the way we should at times or say the right things at times, and just like most of you, when we had kids, no one handed us a book that said here’s exactly what you should do. But when you have a special needs kid who’s life is at risk, and you’re making appointments with doctors so YOU can teach them, it’s a whole new ballgame.
Last year I spoke to all of you about a movie called Miracle which I had recently seen and parts of it really spoke to me in a very specific way about Tanner. This year, on April 20th, Brian and I had a date night. It was our first date night in I don’t know how long. I had seen previews for a movie called Breakthrough, inspired by true events. and really wanted to see it. I do not seek out these type of movies, they just coincidentally, “fall into my lap”, and I LOVE true stories. We went to dinner and then to see this movie.
Breakthrough is about a teenager who slipped thru an icy lake in 2015 and was under water for 15 minutes before resuscitative efforts were started. Although he was rescued, he was in a coma, and his family relied on their faith to get through the ordeal. No one, literally no one, other than his mother and his pastor believed he would come out of the coma alive…but he did. It was a miracle but his momma never lost faith!
I know 3 things and really, only 3 things. 1. Brian and I will never lose faith. 2. We cannot do this alone and 3, a cure IS coming. I know that sounds far fetched to some of you, but I wouldn’t go to the trouble of putting all this together each year and raising all these funds if I didn’t truly believe that it was going to make a difference. I won’t go into the details, but some amazing things are happening at the CDKL5 Foundation and in the world of genetics and I believe whole heartedly that Tanner still has his best life ahead of him. Brian and I cannot cure him on our own though. We need all of you and your support, we need to keep Tanner healthy and alive, to the best of our ability. We need money, we need more awareness and more attention to CDKL5, we need his entire care taking team and more. We need love. I may not have all the answers for Tanner but Love he has always had. He is kissed and hugged and told how much he is loved at least 100 times a day and if Love is what he needs until his cure comes, then his future is looking good! Because at this point, love is all I can control.