Today is the 8th anniversary of Simon getting diagnosed with Cardiomyopathy and our life going totally off the rails. I guess not “off” the rails, but definitely on a WAY different rail than we could have ever imagined.
Last night I had a visceral memory of being woken up by the sickly sweet smell of formula soaking Simon’s crib when the port on his feeding tube would pop open during an overnight feed and the entire contents of his stomach, plus what the pump was putting out, would end up all over the bed. In “Tubie” circles, it’s called “Feeding the Bed” and it’s the bane of every tube feeding family’s existence.
I lay there remembering how Laura and I would work like a finely oiled machine in the dark, pen lights firmly gripped in our mouths while one of us put a towel on the bed so we could change the soaking baby out of all his clothes and wipe him down while the other person changed and wiped down the crib. We could do the whole thing in under 5 minutes in the dark and not even wake the baby. When we were done, I knew I needed to be quiet for a few minutes because Laura would need to lay in the dark calculating how much extra food she could try to push into Simon the next day so he could grow.
My internal clock still jolts me alert every once in a while at 10 pm, thinking it’s time to give Simon his dose of Lasix. Our kid hasn’t taken Lasix for at least four years. FOUR years and my body still remembers.
Last Sunday, Simon still hadn’t come into our room by 7:45 a.m. (he’s usually up by 6 if he’s not sleeping in our bed). I lay in bed simultaneously grateful for the extra bit of sleep and half wondering if he died in his sleep. The second thought didn’t even register until, out of the quiet, Laura said, “is it terrible that I still wonder if he’s dead when he sleeps in?” We lay in bed curled around each other, willing ourselves enjoy our snuggle instead of getting up to assuage the relentless beast of worry. Ten minutes later, we heard Simon’s door open and we both breathed an audible sigh of relief and hauled ourselves out of bed to meet the day. This stuff is just woven into the fabric of our lives. This is what it still looks like 8 years later.
Tonight, as we do every year on August 1st, we delivered baked treats and a card/sign that has a "before" (Simon in the PICU) and "after" picture (Simon now) to the PICU staff. I got there before Laura and Simon and decided to sit outside on a bench in the sun. I leaned back, closed my eyes and immediately felt tears spring to my eyes. I remembered so vividly sitting in that same spot, warm sun on my skin, trying to find a moment of joy eight years ago. I still remember how good the sun felt when we were in the hospital. How good food tasted. How funny jokes were. How bright colors were. How much joy felt like joy and grief felt like grief. How simple everything was.
As we walked through the hospital tonight, I felt the calm, heavy, warm feeling I felt so often in the hospital. I didn't want to talk, I didn't want to move fast, I didn't want to do anything but just BE. It's not unlike the sleepy, heavy feeling I get when an airplane takes off, before the cabin pressure adjusts. It's like a little extra...gravity.
On August 1, 2008, Simon received a very grave diagnosis. We found ourselves overwhelmed by the gravity of the situation. I didn't really understand the meeting of those words in a lived sense until that day. It's not a bad feeling, this gravity. It's like a heavy blanket that slows you down so that everything feels very...simple. It overwhelms your senses until the busy fades into the background and all you can sense is the sun on your face or the sound of your son's breath or the ticking of a clock while you wait for news. There is a very strange way this felt liberating. There is a simple beauty in having to surrender. A relief at having no choices to make. A peace in knowing you have one job and one job only- to SHOW UP.
But the thing about gravity is that if you let it build and build and build it will crush you. There comes a time when you have to fight to get up, to get back in your lane even if it feels too fast, to rejoin life. There comes a time when you have to defy gravity.
Defying gravity has been the hardest part of the last 8 years. Sometimes trying to function like a "normal" person, at the speed required by our society, has felt like trying to get a jumbo jet off the ground with a hamster powered engine. It's a lot of fucking work and sometimes you're not sure it's going to happen.
These last few days I've been remembering the sweetness and simplicity of our days in the hospital and also the sheer terror and trauma. There was a damn good reason we worked to hard to get out of there and stay out of there. Both/and.
As we walked through the hospital tonight, I felt the calm, heavy, warm feeling I felt so often in the hospital. I didn't want to talk, I didn't want to move fast, I didn't want to do anything but just BE. It's not unlike the sleepy, heavy feeling I get when an airplane takes off, before the cabin pressure adjusts. It's like a little extra...gravity.
On August 1, 2008, Simon received a very grave diagnosis. We found ourselves overwhelmed by the gravity of the situation. I didn't really understand the meeting of those words in a lived sense until that day. It's not a bad feeling, this gravity. It's like a heavy blanket that slows you down so that everything feels very...simple. It overwhelms your senses until the busy fades into the background and all you can sense is the sun on your face or the sound of your son's breath or the ticking of a clock while you wait for news. There is a very strange way this felt liberating. There is a simple beauty in having to surrender. A relief at having no choices to make. A peace in knowing you have one job and one job only- to SHOW UP.
But the thing about gravity is that if you let it build and build and build it will crush you. There comes a time when you have to fight to get up, to get back in your lane even if it feels too fast, to rejoin life. There comes a time when you have to defy gravity.
Defying gravity has been the hardest part of the last 8 years. Sometimes trying to function like a "normal" person, at the speed required by our society, has felt like trying to get a jumbo jet off the ground with a hamster powered engine. It's a lot of fucking work and sometimes you're not sure it's going to happen.
These last few days I've been remembering the sweetness and simplicity of our days in the hospital and also the sheer terror and trauma. There was a damn good reason we worked to hard to get out of there and stay out of there. Both/and.
This track we’ve ended up on has been brutal. I'm not going to lie. It’s left me feeling beaten and scarred and always waiting for the other shoe to drop. Sometimes it feels like the intensity of the first few years of Simon's illness drained almost every ounce of emotional reserve I had accumulated throughout my lifetime. I feel like I aged 20 years in the last 8.
This track has also required me to connect to and depend on people in a way I never would have otherwise. It’s left me with a heart more wide open than I ever thought possible. I feel a comraderie and fierce love for other families with kids with big struggles that I never thought possible. Actually, for all of humanity that’s struggling. It’s the fierce love of an underdog for another underdog.
These anniversaries are always so mixed for me. It’s painful to remember how hard it has been and such a good reminder of how far we’ve come. Simon is happy and healthy and totally unlike any other person I have ever met in my whole life. Laura and I are still going strong despite getting whacked with an absurd number of curveballs. We are loved and we are loving. Gravity is pushing and we are pushing back. We are defying odds and defying gravity.
That’s good enough for me today.
Simon, summing it up (with his cousin Francesca in the background):
