Today, Rachel is still in Children’s, but her low end heart rate has dropped since being admitted. The goal is a low end heart rate of 48, and most patients, if they comply with the treatment by eating all of the meals, and following other treatment recommendations, will improve their heart rate by one beat a day. They will recommend discharge once that heart rate has been maintained for 48 hours. My first night here, the low was 39. Three nights later it was 37. The day before yesterday was 36. Last night was 36. It is not moving in the direction I was hoping it would.*
Her blood pressure is in healthy range, though, which is comforting.
At this time there is no evidence of refeeding syndrome at this time, but I have no idea if/when the doctors are thinking about discharging her from the hospital. So, in the hospital I sit, at 4am, writing this blog. There is not a lot of activity in the psychiatric unit, except frequent flashlight checks. Reminds of high school.
So, I will shift gears here . . .
The goal of this blog is to tell a story. My side of the story. Not because my child’s side of the story isn’t important, but because that story isn’t mine to tell. I’ve been told by her counselor, and others, that what I am going through is called secondary trauma. It took some convincing for me to refocus, and to address this piece, because I felt that everything I was going through was not as important as what my child was going through.
However, the truth is, when you are an integral part of your child’s core family structure, your emotional health matters. Sharing it on the internet? That is not everyone’s cup of tea. I can say that, for the first time in about ten years, I feel less like I’m covering up a shameful family secret. I wish there was less to this story, instead of more, but that is not in the cards. I have not shared the specifics of this story with most people prior to this time, in part to protect my child from those would cruelly judge her or me, or us together, the way I was judged and ridiculed as a teenager for giving birth to my first child in high school – even though this is not remotely the same. But, also, because every time I tell it, I relive it.
I think that, culturally, the perception about mental illness – partly because of how difficult it is to treat – lies somewhere along with trial by ordeal, the protestant work ethic, and why Boo Radley was kept out of sight. We are, largely, afraid of what we don’t understand. And things we don’t understand are swept under the rug. And things that are swept under the rug are still there, but become the source of shameful rumination.
Admittedly, I think that I hoped it would abate, and there would be no story to tell. We would find a cure, there would be an epiphany of some kind, and boom! On the road to recovery. Instead, it has been an ebb and flow, worsening into crisis at the most inopportune times. Like, during midterms and finals. Always midterms and finals. I always lowered my standards around finals to, please, God, a B- is just fine. I spent a lot of law school wondering how smart I would be if I wasn’t in crisis all the time. Turns out, just smart enough to be minimally competent to practice law in my state, so that’s about as good as it gets.
The root of this story, however, is not the trauma. It is not the sadness. It actually is finding hope. Finding hope in the courage and bravery shown by my child asking for help, facing hard truths head-on, and continuing to try, even when death seems far superior to living in this much pain. And I’m no stranger to pain, I’ve got my own boxed set. But, getting down into the nitty gritty about choosing a life with pain that will not end over something that would end it permanently, and suspending judgment long enough to feel compassion for the person that is sitting there, may provide an opportunity to overcome the fear. Or the shame. Or whatever makes it hard to manage something that is this hard.
*This information was edited from the initial post that said her health was improving and her heart rate was up. I was misinformed by a member of the treatment team.