I’m waiting for the fog to lift. Or maybe I am waiting for my stomach to settle. I am wondering if I will wait the rest of my life for those things.
2016 has come and it didn’t get the memo. Sadly several stars names have been written all over social media with their too early dismissal from this world. And although it didn’t make the news feeds of everyone, my news feed was filled with the loss of not one, but two little girls who share the same genetic mutation as our Lily girl. CDKL5. Their names might not have made the national news, but their lives were great and they fought harder to live than they ever should have in the mere time they were with us. Harper, 5, and Sorrel, 15 months, both left this world this month and it’s been shocking and well to be honest, I don’t have the words because I don’t have the comprehension.
When Lily was diagnosed it meant nothing more than finally a name. We spent 6 years not knowing and a name said this wasn’t my fault. It meant by pure spontaneous luck, a gene wasn’t made appropriately and it had devastating effects. How devastating? We didn’t know, we only had a handful of other cases to look to. Kids seemed to be similar to Lily. OK we have a sweet kid in a wheelchair with seizures that we will never control, we already have that. We already knew that. It sucks, but death wasn’t on that list. Death was never on the list.
Our plan is to get the other two to college and careers/families of their own and Andrew, Lily and I will ride off into the sunset in a handicap accessible RV and then the story ends. That’s it. We all live together forever in an RV. The story ends there because the thought of loosing her is unacceptable and imaginable, yet on the other hand her loosing us is the same result. So no one looses anyone. We live to our 100’s and then we all fall asleep together peacefully.
But my rose colored glasses are getting foggy with all this reality surrounding me. Children are dying and that just seems so incomprehensible to me I still can’t wrap my brain around it. I realize I can’t change the way we go about life. I can’t hide under the covers (although some days it is tempting) I am just lately feeling like I am on heightened alert. It’s like I know a bomb can blow at any minute ruthlessly destroying my entire world, but it hasn’t, there are no warning signs so I am going to try not to think about it. And if I do think about it, I can be more intentional with my touch. My words. My love.
I want to hug those mama’s (all of them who have experienced this loss) until I can’t hug them any longer and some how take away even an ounce of their hurt, but I can’t take anything away. It’s an unfix-able thing; loss. It’s unimaginable until you are there and then that’s it. Unfix-able.
I loved the book (and movie) The Fault in our Stars, Hazel Grace was so afraid for Augustus to get close to her because she was, as she said, a ticking time bomb. She wanted to protect him from being broken by her but he didn’t care. Augustus wanted to love her regardless of the fact that she could die at anytime. The book was devastatingly tragic and ended different than we all thought it would at the start, but it was so beautiful. Or as Glennon from Momastry would say brutally beautiful – “Brutiful”.
Sound familiar? Kind of like life right? It can be so devastatingly tragic and how often does it ever end how we think it would. But it is such a beautiful ride. It is filled with laughter and tears. Heart fillers and heart takers. Love and indifference. It’s messy, it’s sweet, it’s harsh and it’s filled with special people that show us unconditional love that we would take the heart breaks that we may endure because their love filled us deeper and made us better than we ever could have been without them.
So regardless of all this, all this hurt, all this risk, I would choose Lily any minute, any day, any hour, any world. I would always choose her.
Being Lily’s mom I get to see life in a way so many others don’t. I get to experience life in a way so many others can’t. I am lucky to be her mom and I would, no matter what, have never chosen anything different. Time bomb or not.