It’s no secret I love music. My favorite concerts and songs are peppered all over my social media, our house has some device to play music on in every room. But the National, they are my people. They are the soundtrack or backbone of every emotional roller coaster – the highs and the lows- of my adult life. In my current emotional state – over the battle between insurance and hospital over Landon’s imminent implant surgeries- I found myself sitting with this song’s lyrics – turning them over and over again in my head.
It’s quiet company
And I can’t fall asleep
Without a little help
It takes a while to settle down my shivered bones
Until the panic’s out
It takes an ocean not to break
It takes an ocean not to break us… the initial denial of the pre-authorization was enough to do that. It broke me wide open into a frenzy of phone number gathering, emails, sleepless night worrying. And it’s not as simple as pushing it off and then it’ll be approved. It’s really yelling out into the void… “will it ever get approved?!” And here I sit today, one full week of this mind numbing, collection of records, forms, numbers and texts with her step mom still waiting. The current state thanks for our collective rallying cry has been pushing this to the medical review board of BCBS of SC to analyze whether a code for her surgery will or should be created. Otherwise, we don’t know if they can happen. The complexity and layers of this study are commonly felt by rare parents, that much was made clear this past week. Everyone who has walked a similar path to us has cried into the early hours about codes, medical necessity, and summoned that last bit of strength to advocate another day.
We’ve weathered some incredibly hard things in this life- raising, protecting, advocating for and cherishing our rare girl. That ocean is here however, and we are breaking. I know there are codes, and procedures and processes these large entities need to function. I live in policy and process every day in my work life. But I also live in the human space- keeping the humanity and feeling as a part of decisions is literally my job- and we’re trying to apply that here. I woke up that past two mornings in real panic. Four AM isn’t a kind hour but it’s quiet, it holds meditation over coffee, and the ability to summon the strength needed to handle one more day of this. However, the ocean always comes after the sun rises.
The what-ifs, the lack of control, the lack of trust that these systems will do right by a child, this is my ocean and I have broken. This week, I was frenetic, short tempered, quick to tears, unable to allow any form of meditation to soothe me. The complexity of insurance authorization, approvals, codes, and wading through the minutia to just get your kid what she needs and deserves is enough now to shiver my bones. And while it’s not life or death, it is truly the ultimate wellbeing of our daughter. It’s her access to markedly better hearing and a truly massive improvement in her life. It’s the hope that her mental health can improve. It’s also a carefully orchestrated plan that we have prepared for over six months. To get down to the wire and have six numbers seperate you from these needs is overwhelmingly hard.
By this point in our Treacher Collins journey, I thought we’d experienced it all- from the mental health journey Landon has been on, the constant staring and pointing and awful commenting at the hands of other teens, to the surgeries she had as a baby, the navigation of early childhood intervention in two states, this particular fight didn’t even occur to me that it was coming. So, one foot in front of the other we go.
Keep sending your good vibes, I’m not sure when our fight will be over.
XOXO
Eloise
