The most gaping void I feel now, with Dylan gone, opens wide at night.
I know that if I've gone too long without allowing myself to really feel how much I miss him, I'll end up in his room. I can still picture the crib, the oxygen concentrator at the door, humming. I can still see the wheeled cart where we kept his IPV, cough machine, suction machine and nebulizer. I can still picture him sleeping peacefully, unmoving, with his Pixi on (his nose mask for the bipap respirator) and a faint blue light emanating from the bipap. And the numbers on the pulse oximeter above, sitting on the dresser. Those ever-present numbers. Heart rate, in red, well under 100. Oxygen, in green, well above 96. That was the sweet spot.
But the room is nearly empty now. Dylan's most cherished belongings are neatly packed in a plastic tub of green, his favorite color. A few cases of Pediasure await donation, as soon as I can find a home. There is nothing left but a rocking chair, some Snoopy decals on the walls, and his favorite dolls--doggy, Winnie the Pooh and Piglet--sitting on the empty dresser. The ticking of the wall clock, which we hung so that we could time his treatments, is deafeningly loud, something I never heard when all the machinery was on.
I feel the need to stand in those places, to remember the steps I took. Every night I set the syringes of medicine and a water flush on the nightstand, wheeled the feeding pump in, bag loaded, and plugged it into the wall. I would place my phone at the head of the crib so I could play Words With Friends with one hand and hold the face mask in place with the other during the IPV treatment. I plunged the meds into his feeding tube, then flushed it with water, then started his slow overnight feed. Next were his respiratory treatments--IPV for 15 minutes with saline, then five sets of five coughs. Then we were done, and I replaced the Pixi mask, kissed his forehead, and turned on the bipap and O2 concentrator in a series of swift movements so that he would go back to sleep quickly. Every night without fail, he would take an audible breath in when I replaced the Pixi--a sort of reverse sigh of relief--because he knew he was safe to fall back asleep. The numbers of the pulse oximeter would fall into the sweet spot within a few seconds as I stood at the door.
Those times were just his and mine. He slept through most of it; he would whimper a little when I removed his mask, acknowledging that he knew what was about to start, but then settled down as soon as I started the IPV. I admit that some nights, as I prepared the feeding pump and drew the meds while catching a few minutes of TV, I felt ambivalent about the duty. There was so little down time between Colin's bedtime ritual and Dylan's nighttime treatment that I felt as if there was to time to breathe myself. But once I got in and sat down by his crib, all of that stress-induced irritation went away. I could just be with him, quietly caring for his lungs, giving him his nutrition, repositioning his body, kissing his forehead, getting a whiff of his shampooed hair and skin. My favorite work.
Since I can no longer reach in to his crib, remove his mask, kiss him, hold his feet in my hands, or smell his smell, I sit down in the rocking chair to hug his Pooh Bear and cry hard, purposeful tears, my penance for emptying his room of its contents.
Thursday, January 24, 2013
Thursday, January 3, 2013
I have no fear
This was originally written on October 15--while Dylan was in the hospital on the first of two trips in October 2012, before he died. It was in draft form, but it stunned me how powerful it was, and at a time that was so ambiguous. We actually went home a few days after this was drafted, and we got to celebrate Dylan's birthday--but his condition turned so rocky again that we had to return to the hospital--for the final time, it turned out. I felt compelled to just clean it up (very lightly--didn't need much work), avoid messing with any of its original tone or purpose, and publish.
Dylan is in the hospital again--admitted on his birthday. Happy Birthday, sweet boy! I'm sorry we had to postpone your ice cream party.
We have done a stunning job of avoiding this place for 10 months. I know summer was on our side, and I know that it helped to keep Dylan's sphere of experience limited to the safe, cozy confines of our home. Nevertheless, we managed to stay away from the clinic and spend those precious days taking him to the beach, laying him on the hammock, riding around in the car.
I walked back to the hospital proud that we were still here--that he is still here in the world with us. We learned how to care for him--learned how to administer IPV treatments, cough assist, deep nasal and oral suctioning, and CPT. We didn't rely on doctors, and didn't have to have conversations all the time about his "disease process."
I cannot discount that I was fueled by the trauma of our last experience in December, 2011. The 2 1/2 weeks before Christmas was fraught with the stomach-turning, drastic ups and downs of a thrill ride at an amusement park--but it's not one we chose. Right before we had to hospitalize him, Dylan had just started to show signs that he was at the point in his disease in which he needed respiratory support. Then he got pneumonia from aspirating--which can be deadly to an SMA child, and had many scary nights in the hospital. It was as if he was fine one moment, on the verge of dying the next. Plus, we were fighting a disease that no one on your team of doctors thinks your son will survive. When you've seen 99 SMA Type 1s die, naturally you're going to assume that #100 will, too.
There is an unspeakable, unbearable desperation when you find out that the people who are supposed to help heal your son, or at least help him survive, do not believe he will be okay. But after surviving that hospital trip last year, I no longer worry about who will advocate for Dylan.
I have no fear anymore of being the least experienced or knowledgeable in the room, or of questioning the medical team. I know Dylan better than anyone else, including these doctors. Knowing Dylan is the one thing I've truly mastered in my life. It is my greatest accomplishment. The best doctors pay respect to that knowledge, defer to it.
I have no fear that we will suffer the pain of having to make unbearable decisions about Dylan. I am convinced that he will stay for as long as he is supposed to and respond to the call quickly when summoned by God. I am certain we will be absolutely blindsided by his departure, and still I have no fear.
Finding a Zoo
One thing the books and articles about grieving don't say is that, after the death of a loved one, you are apt to search around for the most random things in your life to to add, omit, or change--to the point of the absurd.
In the two-plus-months that we have lived without Dylan, we have almost traded in our paid-off Toyota Camry for a new Ford Explorer. It was so close I could smell the new leather seats. (Sniff.) I've also researched poodle mixes to adopt, considered Lasix eye surgery, and hoped that I would be laid off of my job so that I could start my own venture. I have wondered whether we'd be ready to consider adopting a child in another year. Jason has suggested we move to Seattle, and he also wants to buy a travel trailer. I still maintain that I am getting a tattoo (that one I've said for a long time, though).
The only tangible changes I made was to buy several pieces of clothing from the very overpriced White House Black Market store, which I usually consider above my spending level, and then proceed to gain five pounds back over the holidays. Somehow, these purchases didn't quench my thirst for a wholesale change--just gave me a little sum to pay off. And some stunningly flattering pieces that are now a bit snug.
So, when I recorded and watched "We Bought A Zoo," starring Matt Damon, a couple of weeks ago, I cried and cried, like I hadn't cried in, well, a couple of days. (Crying is pretty frequent lately.)
Here was this guy who lost the love of his life, his wife and the mother of his children, after what was suggested to be a long, painful illness. He has to figure out how to comfort and parent his two children, the older one of whom was flunking school, constantly brooding and drawing numerous dark, sad, scary sketches to while away the time. They were a broken family, or at least deeply bruised, with no clear path, no real sense of what was next.
In the film, the father (Damon) comes across 18 acres of land with a house and a defunct, closed zoo, held by the state, whose remaining animals were being tended by a small group of devoted former zoo employees. He decides to try cashing in all their money to renovate and reopen the zoo, and his family picks up and moves to the house, which is out in "the sticks" (much to the chagrin of the 14-year-old boy with the macabre sketchpad). Not surprisingly, the zoo employees help fix everything up over a few months, they all become close, a romantic relationship develops between the father and the pretty, 28-year-old head zookeeper (played by Scarlett Johansen), and they survive funny pitfalls (including a grueling inspection by a comically terse, moody inspector) with mildly whacky hilarity. Of course, they ultimately reopen the zoo to crowds of people and instantly experience monetary and other gratification. The older boy stops drawing scary netherworld beings and confesses his love to a 13-year-old zoo volunteer, played by one of those adorable Fanning girls.
Schmaltzy, yes. But, it made me cry anyway, and like the dickens. Maybe it was the debunking of the idea that if you just change your surroundings drastically and direct all your energy into a crazy new venture, you will forget, your pain will subside. Maybe I cried because even a gorgeous zookeeper with bear shit on her boots would not allow the man to forget how much he desperately missed his wife, just as nothing can make me forget the feel of my sweet Dylan's foot pressed against my cheek, squeezing his toes to "hug" my face. Or the smell of his forehead where I kissed it every night after his last treatment, and the little breath he took as I put on his mask. Or the helplessness I felt those last days in the hospital, when there was nothing I could do to save him. Or the sadness I feel now that my older son struggles with inattention and daydreaming in school, to the point where his grades have plummeted at times, and how that then triggers his anxiety, and how I can't heal his pain either.
Maybe it didn't help matters that the boy's name was Dylan, the actor who played him was named Colin, the zookeeper's name was Kelly (my late sister's name), and the zoo's reopening was on July 7-- Colin's birthday. Even silly coincidences can trigger my tears. Especially silly coincidences.
I hold out hope that some changes will be healing, comforting. I'm still looking for one. Smaller than a zoo renovation, larger than a tattoo. Any ideas?
In the two-plus-months that we have lived without Dylan, we have almost traded in our paid-off Toyota Camry for a new Ford Explorer. It was so close I could smell the new leather seats. (Sniff.) I've also researched poodle mixes to adopt, considered Lasix eye surgery, and hoped that I would be laid off of my job so that I could start my own venture. I have wondered whether we'd be ready to consider adopting a child in another year. Jason has suggested we move to Seattle, and he also wants to buy a travel trailer. I still maintain that I am getting a tattoo (that one I've said for a long time, though).
The only tangible changes I made was to buy several pieces of clothing from the very overpriced White House Black Market store, which I usually consider above my spending level, and then proceed to gain five pounds back over the holidays. Somehow, these purchases didn't quench my thirst for a wholesale change--just gave me a little sum to pay off. And some stunningly flattering pieces that are now a bit snug.
So, when I recorded and watched "We Bought A Zoo," starring Matt Damon, a couple of weeks ago, I cried and cried, like I hadn't cried in, well, a couple of days. (Crying is pretty frequent lately.)
Here was this guy who lost the love of his life, his wife and the mother of his children, after what was suggested to be a long, painful illness. He has to figure out how to comfort and parent his two children, the older one of whom was flunking school, constantly brooding and drawing numerous dark, sad, scary sketches to while away the time. They were a broken family, or at least deeply bruised, with no clear path, no real sense of what was next.
In the film, the father (Damon) comes across 18 acres of land with a house and a defunct, closed zoo, held by the state, whose remaining animals were being tended by a small group of devoted former zoo employees. He decides to try cashing in all their money to renovate and reopen the zoo, and his family picks up and moves to the house, which is out in "the sticks" (much to the chagrin of the 14-year-old boy with the macabre sketchpad). Not surprisingly, the zoo employees help fix everything up over a few months, they all become close, a romantic relationship develops between the father and the pretty, 28-year-old head zookeeper (played by Scarlett Johansen), and they survive funny pitfalls (including a grueling inspection by a comically terse, moody inspector) with mildly whacky hilarity. Of course, they ultimately reopen the zoo to crowds of people and instantly experience monetary and other gratification. The older boy stops drawing scary netherworld beings and confesses his love to a 13-year-old zoo volunteer, played by one of those adorable Fanning girls.
Schmaltzy, yes. But, it made me cry anyway, and like the dickens. Maybe it was the debunking of the idea that if you just change your surroundings drastically and direct all your energy into a crazy new venture, you will forget, your pain will subside. Maybe I cried because even a gorgeous zookeeper with bear shit on her boots would not allow the man to forget how much he desperately missed his wife, just as nothing can make me forget the feel of my sweet Dylan's foot pressed against my cheek, squeezing his toes to "hug" my face. Or the smell of his forehead where I kissed it every night after his last treatment, and the little breath he took as I put on his mask. Or the helplessness I felt those last days in the hospital, when there was nothing I could do to save him. Or the sadness I feel now that my older son struggles with inattention and daydreaming in school, to the point where his grades have plummeted at times, and how that then triggers his anxiety, and how I can't heal his pain either.
Maybe it didn't help matters that the boy's name was Dylan, the actor who played him was named Colin, the zookeeper's name was Kelly (my late sister's name), and the zoo's reopening was on July 7-- Colin's birthday. Even silly coincidences can trigger my tears. Especially silly coincidences.
I hold out hope that some changes will be healing, comforting. I'm still looking for one. Smaller than a zoo renovation, larger than a tattoo. Any ideas?
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