Facebook is/can be a great tool for so many. Through Facebook, we have been able to connect almost daily with loved ones, high school friends, boost business sales, & more. I have been able to connect with fellow Dravet parents. This has been a wonderful connection for myself to learn more about the rare disorder that plagues Jack & our family. There are varying degrees of Dravet. Jack is considered to be high functioning compared to many of the Dravet patients whose parents I’ve developed relationships with. A great deal of the DS patients can not speak, walk, have G-tubes, and/or completely bedridden. The behavior issues that we have with Jack are a common trait that DS kids share. It seems the more high functioning they are, the worse the behavior can be. It’s a catch 22 this Dravet is I tell ya. The higher functioning cases have behaviors that are so challenging, that many have to be placed in a facility for care. The lower functioning cases often can’t even say “Mama” & have to be placed in a facility for medical care.
It’s at least every 4-6 weeks that I grievingly read about a Dravet child passing away. So you see, Jack has a very serious illness & I don’t think people realize just how grave his condition is. At any moment, any of us could meet our Maker, but it is such a tragedy to live with the possibility of your child passing away because of a seizure. And this is how Dravet takes our babies. They end up having a seizure that their sweet little bodies can’t recover from.
As high functioning as Jack is, did you know that he can not feel pain? This is also one of the characteristics of Dravet. We once were getting ready to watch the 4th of July fireworks at the park, I looked down to see Jack’s feet & legs were covered in fire ants-he never knew it until later on in the night when he started itching like crazy. As a tot, he would get his blood drawn & would never flinch or cry, would touch a hot pot & not realize it was hot, or get cuts & never know it until he bleeds & would never cry about it. Our lives are impacted by Dravet every.single.second. While there are a multitude of mountains Jack must climb, what we are continuously amazed by is Jack’s resilience. Throughout all of mountains Jack has climbed, he bounces Jack swiftly & typically with a smile on his face. From seizure after seizure, did I say seizure, to pneumonia, drug trials, violent behaviors, surgeries, testing, hospital stays, procedures, annoying habits & acts, to name a few, the common theme here is resiliency.
I never thought I would thank the girl that rides a wrecking ball nearly naked & sticks her tongue out more than an ant eater for anything, but she just so happened to sing a pretty great song & it’s one of Jack’s favorites, “The Climb” by Miley Cyrus. This song is so fitting for his life & ours. Life is a climb, there’s always gonna be another mountain, your faith is going to shake, there’s always going to be struggles, but you got to keep on pushing. And that’s what we do. We’ve climbed, shook, struggled, & pushed for 16 years. We pray that we can continue pushing for 16+ more years. We tearfully think about life beyond mine & Lee’s years. Who will continue care for Jack? There is absolutely so much to think about, plan, & organize when you have a child or family member with health conditions. We can’t die like normal people, we have to plan everything out! I am aware this blog has taken a sad turn, so I will end it by saying this: if you are reading this blog, my message to you is to live! Do something that you have always wanted to do, take a chance, & have fun doing it, for we never know what life will throw at us. Don’t live in fear, enjoy your life, go to fun places, hang with fun people, do what you truly love, but most importantly, do it with a kind heart.