It’s easy to get melancholy when you’re dealing with cranky sick people. That’s me. Over here. On Thanksgiving…dealing with cranky sick people rather than eating turkey and pie.
But I was reminded that it’s still November. Which means it’s still epilepsy awareness month. Which reminded me that 7 Thanksgivings ago we were dealing with a different kind of sickness.
7 Novembers ago Trevor was diagnosed with Infantile Spasms, a rare and catastrophic form of epilepsy. 7 Thanksgivings ago we were trying to continue breathing even though the walls of the private room at Hasbro Children’s Hospital felt like they were slowly suffocating us. As did the panic of not knowing if or when our insurance would approve the front-line treatment at that time – Acthar Gel. Though no one would fess up – the denials and debates hinged on the $25,000 per vial price tag. Especially given that he would need at least 5 vials. 7 Thanksgivings ago…yes on Thanksgiving day no less…our insurance company put a stop on the vial that was in transit to us. We were anxiously waiting to begin treatment knowing that each seizure was slowly stealing him away. And even though there was no promise it would work for him – his team was convinced it was his best shot. 7 Thanksgivings ago one of the most amazing neurologists we’ve been blessed to have on Trevor’s team wrote & faxed a wrathful letter to our insurance company for that very deed. She forfeited her Thanksgiving to advocate for our family. Unlike the insurance team who could find the time to stop shipment but not to respond to her letter demanding treatment in order to save his very life.
There was a lot of drama 7 Thanksgivings ago.
If I’m remembering correctly, Johnston-Wales culinary division donated wonderful Thanksgiving feasts to all the families who were trapped inpatient. I remember it was delicious. And I remember feeling conflicted that I thought so. Like somehow I wasn’t allowed to experience pleasure in the midst of pain.
7 Thanksgivings ago there is no way I could image where we’d…where he’d…be today. Oh yes…I let my mind wander down every dark and sorrow shadowed path. And even the paths filled with light and cures. As it would unfold, our journey has been a mixture of both. It has changed us in the deepest of ways. And even though there has been and continues to be much pain along the way…I am so very thankful for where we are today. Though I don’t love what the seizures have stolen from him, I do love every part of who he is. I am also very hopeful that maybe even during our lifetime a cure for Infantile Spasms will be found. When Trevor was diagnosed there was one front-line option to treat Infantile Spasms. Since his diagnosis more treatments have been illuminated…some of which I have been blessed to have a small bit of influence.
So yes…I’m dealing with cranky sick people today.
But I am thankful we’re at home and not trapped in a children’s hospital with the walls closing in and our hearts shattered. Remembering where and how we spent 7 Thanksgivings ago helps put this one in perspective.