I just watched my ‘Year In Review’ video on Facebook. I saw the beginnings of eggplant parmesan, which my husband makes for me every time I am significantly passed my due date. I saw the first photo of my beautiful, angry, piglet daughter, born in April. I saw our son recovering from anesthesia after a straightforward, successful, dreamy surgery, in which everything went better than expected.
But there were other events – bad things – that were absent from my video. And this was weird. I haven’t been secretive. I have been faithfully using Facebook to keep people up to date, although sometimes with more aloofness than I’d prefer, with what’s happening in our lives. Our son spent most of last year’s winter in the hospital for various respiratory infections. Whenever we were discharged, there was hope. We would ooze hope. It felt so wonderful to be allowed to go home. He would start to eat again. He would sleep better, too. I may have even allowed myself to believe I could make him better all by myself, through the power of kale smoothies and chest physiotherapy. And then, like clockwork, we would need to bring him back to the ER, wearing our patented incredulous smiles as they told us he would be admitted to the ICU. Again.
These winter months culminated in a month-long hospital stay in April. He was very sick, but this time there was no virus. I made them re-swab every orifice on his body, clinging to the fact that if they just found the pesky microbe making him sick, we could fight it and go home. But it wasn’t that kind of hospital stay.
My son’s lungs had stopped working properly. In medical terms, it’s called ‘Respiratory Failure’. We had to quadruple the amount of oxygen he was receiving. That alone shook me. He was young. He was supposed to be requiring less oxygen as he grew. And here I was, sprinting to his oxygen tank and cranking it every time he became upset, or grew pale, or simply told me he wanted ‘more oxygen’.
His doctors stopped looking me in the eye. That’s when I knew things were bad. They asked to speak with us alone, in a room with extremely uncomfortable chairs. The doctor quickly told us our son had less than two years to live. I still remember exactly how the room felt at that moment: Prickles and clouds, and why is there no air in here? The lights were bright, so I put my head down and clung to my 39-week-sized stomach. But what about CPAP, or BiPAP, or even a tracheostomy? What about his monthly bone treatment? What about growth hormone injections? I just kept spewing everything I had ever absorbed from Grey’s Anatomy. The doctor was firm in her belief that while these were all potentially good treatment options, she simply thought none of them would work. Thesituation was too advanced, too complex. She finished with, ‘enjoy the time you have left.’ In those five minutes, this doctor took all of our hope, our plans, our lives, and threw it in the trash. I think we left the room right after that.
If I could write a letter to the powers-that-be at Facebook, it would probably go something like this:
To Whom It May Concern: Thanks for jazzing up my year-in-review video. Thanks for letting me feel like I was a normal, regular, ordinary person for about 30 seconds. This past year (as you guys already know, of course) was kind of the worst. I really didn’t know what to do with myself for most of it, except for think about what I would do differently if I could go back to that really uncomfortable chair. I know that my hope was very easily erased by one person’s opinion. I wish I could give my April-2014-self a big fat head squeeze. I wish I could tell myself that it’s perfectly sane, perfectly alright, to be hopeful. To truly believe that the really bad thing you fear most will just simply not happen to you.
Or something like that.
I won’t go into the minutiae of our medical journey since then. All we really need to know is that his breathing has improved since he started using a BiPAP machine at night. It really is a marvel of modern science. I sometimes clean it with a soft cloth, and in these moments I know exactly how car enthusiasts feel. He is getting better, and more importantly, I finally have hope.
I’ve decided to stop asking everyone in my life, especially doctors, to predict the future. I’m finally more concerned with right now rather than a week from now. My son is a lottery winner and a science experiment rolled into one complicated package. He’s a one of a kind, one in a billion kid. This mystery won’t be solved any time soon.