I’ve been doing everything possible to put off writing this. Refusing to look at the calendar date, cleaning, playing games, even finished the polar plunge video that has been sitting there for months. Again I will have to write in a steady stream of consciousness in order to get through it but that seems to turn out OK so here goes.
I watched the HBO documentary; Monica & David about two people who get married and struggle for independence. What is different about this media piece is that both Monica and David have Down syndrome. The show aired on a Friday night and the house was quiet as I settled down to watch ~ and this was a big deal for me because typically I avoid these types of shows at all cost. Either the show is depressing and encapsulates every hard struggle that comes with disabilities or it drags it out and by the end I feel like I have a giant weight on my chest. Monica’s cousin filmed the documentary, HBO was airing it so I figured that it would be more modern in presentation of how great life can be for not only individuals with Down syndrome but also their families.
I was not disappointed. Monica and David were pretty awesome to watch. Their cognitive delays were minimal and while they had their struggles overall their lives were independent but supported by family. Some of the verbiage was dated but if we are realistic about language it changes constantly so what we are saying today will be exchanged with a newer form within 10 years or so.
I started crying about 10 minutes into the show and the tears would come and go but I forced myself to keep with it. Andy was in and out of the room, sitting with me for a bit then off to the kitchen, asking questions in between. It was very difficult for both of us.
It’s why we don’t do the Buddy Walks. It’s why we shield ourselves from functions where we know these feelings of grief and anger will surface.
We don’t live in that world. We live in the world of Epilepsy and Down syndrome. Many parents who have a child with Down syndrome also have dual diagnoses such as Autism, Epilepsy, and other health issues that steal our children from us.
It is difficult at best to watch what might have been and anger rises to the surface when we see what seizures have taken. There was an editorial piece written a few weeks ago about the use of the R word and I fully expected it to be written by a parent of a child with Down syndrome as is the norm however this time it was written by a father whose child has Epilepsy. His perspective is closer to mine and I appreciated the adjective he used in describing what the seizures do to our kids “However, shortly after my son was born, when his body began twitching and convulsing during the seizures that shredded his brain” ~ shredded ~ now there’s the word. Shredded is exactly what the seizures have done and we are fighting back with medications to re-route her brain. Time will tell and Larkin is thriving but as most who read this blog, who know us in real life, who treat our girl, know …. it’s been a long, exhausting, and very painful, journey.
The medication marathon is enough to cripple parents and caregivers. Treatment MUST happen so we are not allowed to shirk away but we know as we spoon/shoot/shove/or however else we administer the drugs into their bodies that the medications themselves steal our kids a little bit more and more often than not, a lot more.
There are over 38 types of seizure medications. Epilepsy kills as many people as breast cancer. Epilepsy is, as David Axelrod put it so eloquently, “Terrorism of the brain. You never know when it is going to strike next”
Letting these emotions out is rare, as we prefer to dwell on positive thoughts. Over the past 5 years we have learned to accept and compartmentalize the emotions and devastation. We don’t avoid the feelings but at some point you just have to put them in their box and close the lid.
Watching the show didn’t open the box. It was already open. A few weeks ago Larkin’s Pediatrician asked me to hang out for a second at the end of the girl’s physicals. He left the room for a few minutes and when he came back he asked me to schedule a heart echo and cardio follow up for Larkin. Nothing wrong he said ~ just need to have it in her file that the 2 holes in her heart have in fact, closed.
Now you see … we were kicked out of that Ologist’s office when Larkin was 11 months old. Her heart echo at that time showed that the holes were smaller so we didn’t have to follow up anymore and I closed the lid. The thing is though when you have had the rug pulled out from under you a few times you lose trust in your gut feelings. Although my gut tells me everything is fine …. tomorrow we are heading into Carle for a heart echo with follow up and I am honestly not interested in any more bad news. Not interested at all people.
I can’t avoid the calendar anymore and the box is open. Finally, today, I reminded Andy what we had to do and he responded with “ugh” and the shoulder slump. The box is wide open and she is pouring out what we typically contain. I’ve been on a self-imposed “time out” for a few weeks because I haven’t been able to trust my emotions and have wanted to SNAP in situations where I normally can contain myself. We will park and carry our girl into one of those oh so awesome dark sono rooms. You know..the ones I looooove so much with their quiet hum, cold gels, hushed tones, and parents who want to be anywhere else in the world but there. If you happen to hear a really angry little girl crying at the top of her lungs ….. thats Larkin.
So if you have a spare prayer or two throw em our way will you ~ and then hand me some nails to hammer this box shut again.