My daughter is buried up on the mountain. Our mountain, although I call it Clare’s mountain now. It’s a mature clean forest, with poplar, mixed oaks, black gum, and some scraggly hemlocks. Truth be told she’s buried up there with our dogs. There’s a split-rail fence with a nature’s gate between two trees. A space with no fence. Brian wanted to close it and have no openings to the outside world, but I figure I’ll be buried up there too and might want to get out every once in a while. The dogs are on one side of the opening and Clare on the other. But they watch out for her. I know they do.
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I remember when we got her diagnosis, when we knew she was going to die. We knew we had to bring her home. The doctor on duty didn’t know squat about it. He was flustered we even asked. He needed to talk to everybody—lawyers, doctors, hospital administrator. We could probably bring her home on Monday. She died on a Saturday. Brian had read the laws about home burial in North Carolina, he must have known this was coming before I did, before I could accept it. She could absolutely legally come home with us the moment she was pronounced dead. It took eight hours once she was taken off her oxygen for her to take her final breath, and I guess that gave the doc time to verify the law. And so, take her home we did. He told us to watch out for power and gas lines as if we were burying her in the back fucking yard of some suburban neighborhood.
She came home in a stupid cardboard box with flower seeds embedded in it. It was a really expensive hospital box and bullshit anyway because she would be buried deep enough a flower could never germinate. It was late when we left the hospital, maybe around 11:00 p.m. Brian drove her home in the front seat of his truck. The truck she was going to learn to drive in because it was big enough she’d never get hurt. I don’t know how he managed the half-hour drive with our dead daughter in the seat next to him. I stopped and bought beer and cigarettes and smiled at the check-out guy like it was any other day, except I had an empty car seat in my car, and Brian had a cardboard box in his truck.
We put the stupid expensive box holding our sweet girl in the crib, went up to the shop and built her a simple pine casket. We brought her up and placed her in there with her nursing blankets and a super sharp pocketknife of Brian’s. We didn’t know where she was going but wanted her to be able to protect herself. Exhausted, we got good and drunk on cheap beer, all three of us on the shop floor, before placing her back in her crib for the night.
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I never thought we’d have a kid. I had had two miscarriages and was forty-one years old. I was okay with it, figured it wasn’t in the cards you know? I was going to fill the house and yard with dogs instead. We adopted our third big dog in August 2019, and I missed my period in September.
There were some bumps at first. Fear makes things bumpy. But I knew deep down this one felt different. And indeed, it was. Because of my “advanced” age I had the full panel of genetic testing done to check for birth defects, disorders and the like. All came back clean and at around twelve weeks I found out I was having a girl. I saw her tiny toes and very strong heartbeat on the first ultrasound. I was thrilled, excited, nervous. I started prenatal yoga right away!
Brian and I were in the process of designing a new home that we were getting ready to build on our property. I think our builder was the third person I told I was pregnant, hoping he’d bump us up on the list so the baby could come home to a sweet new house rather than the worn-out shack we had been living in for the last twelve years. It didn’t work. But that gave us time to switch the plans around, changing the small office into a second bedroom and making the downstairs entry larger to accommodate me carrying a car seat and grocery bags. We designed a huge island so there would be room for all of us to eat and her to do her homework. I remember measuring out Brian’s wingspan, deciding Clare would be tall like him and they both got twenty-eight inches at the island and I got twenty-two. I sorta hate that giant island now, a daily reminder that she’s not with us. And I never ever use the downstairs entry, even if it’s raining. I go around to the outside stairs and get all wet.
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I’m up here with her now, up on Clare’s mountain. I’m trying to keep her in flowers knowing the first frost is knocking at the door. I won’t bring her store-bought flowers, only ones I grow in my gardens. And leaves are starting to come down, and I like her little grave kept clean. These are the only ways I can take care of her now, provide for her.
She has a hand-carved headstone. It’s just a rock really. We saw it a lifetime ago, on the side of the bank like some discarded piece of trash the mountain had cast off. We tried to get it so we could put it in a stone wall but it was too heavy, and we gave up. After she was in the ground and buried, Brian looked at me and said, “We gotta get that rock.” It had been years but I knew exactly what rock he was talking about. We had a six-pack, the tractor, a come-a-long, a hand truck, and ratchet straps. Crying, I asked him, “Is this what normal people do with grief?” It didn’t matter; it’s what we did. We got that damn rock in all its immensity and took it down to the shop, shaped it up nice, and hand chiseled
Clare Jeanne Burns
6-13-2020 (heart) 8-22-2020
We went through about six chisels, but it’s here for eternity. It’s getting covered with moss now, marking the passage of blasted time, but it’s always here. She’s always here. With us and her dogs.
I was scheduled to be induced on Friday June 12 and hopefully I’d go into labor sometime late the next day, and she would arrive on June 14. It’s weird to plan things like that but because of my age my doctor thought that was the best course of action. Brian got home from work on Friday, and I was in the garden, dirty knees and very pregnant, planting sweet potato slips. He was dumbfounded. “Go get in the shower! You’re about to have our baby!” He made me a grilled cheese and bacon sandwich while I did.
Sometimes I think the universe knew this was the plan, that I’d be living the rest of my life with a broken heart, so I got to have the easiest birth any forty-one-year-old first-time mother ever had. I was in labor an hour, Brian next to me the whole time with a look of awe and maybe a tinge of disgust, but then boom, there she was, and we were instantly smitten. Born at 7:15 a.m. on June 13, she was tiny, four pounds and fourteen ounces, but no one was concerned. Clare ate like a champ from the get. She was strong and aware and beautiful. I had warned Brian that new babies often look like aliens but that was an unnecessary talk to have. I was biased of course, but it wasn’t just me, all the nurses and doctors said how pretty she was, she looked like a doll. But she looked so wee in her big dad’s arms.
Brian went back to work the day after we got home from the hospital. We own a swimming pool service company and mid-June is go time. And when you own a seasonal business you just gotta go, new baby or not. My mom would come over and hold Clare while I did my bookkeeping and talked to customers. They were all so tickled, everyone needed pictures and updates. It was like having another 100 family members.
I learned real fast how to do everything with one hand because I wanted to hold her all the time. If I wasn’t holding her, either Brian or my mom was, or she was sleeping in her crib. I wonder now, could I not put her down because somewhere I knew the days of her in my arms would be so short? I did plop her in the pack ’n play quite a bit. I still had a big garden that needed tending, so she’d chill in there in the shade while I weeded and picked. She did everything with us really. I have a picture of her at five days old on the tractor. She came with us to feed the hogs every night and crinkled her cute little nose every time we got near them. She was in the barn when we were cleaning stalls or trimming goat toes. At a ripe young age, we were grooming her for life on our little farm.
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Clare has a small ceramic bird on her grave, off white with splashes of brown showing the detail of its wings. It’s nestled in some moss just under her headstone. My sister brought it to me after Clare died. She was up on the mountain with mom and me, my stoic unemotional sister, tears pouring down her cheeks, saying “I wish I had gotten to meet her.” She only lived two hours away, but there was COVID, and her own busy life and everyone thought they’d have forever, so she never got to meet her niece.
Michelle presents me with the bird, tells me she got it from our Mimi’s house after she and my grandpa had passed on. Clare’s middle name was Jeanne, after my Mimi. Mimi was a quilter; we all have a quilt she made us, hand stitched, no sewing machines. Mimi made one for Clare, before she died, before I was pregnant. She gave it to my mom, and said Mandy is going to need this one day. So, yea, premonitions like that get a baby carrying your name. Anyway, the bird, Michelle hands it to me and the look on my mom’s face changes immediately. “I made that bird.” We’re all surprised and maybe humbled by the announcement, but I think a connectedness embraced all us women right then. Mimi and Clare from their space wherever that is and my mom and her two daughters sobbing on top of a mountain. Clare’s mountain now.
…
I wanted to keep monitoring her weight, but I’ve never had a scale except for the one I use to weigh out our sausage on processing day, so we’d put her in a frying pan on the sausage scale. We were doing this our way, and it was working. She was gaining weight. I could sit and feed her on the couch, the dogs in the same room with no worries they were going to step on her. Brian growing more comfortable with her the bigger she got. He’d hold her and watch YouTube videos of construction projects and men with tractors and chainsaws.
I get anxious a lot now, less so than in the beginning, but more than I ever used to before my world got turned sideways and upside down. They say that’s pretty normal with grief, especially “out of order” loss, which is I guess losing a child, or a sudden unexpected loss. You know it can happen, the unexpected, the worst-case scenario so you’re all hopped up waiting for it. Waiting for the next tragedy to unfold. I can feel it coming now, that disconnected panicky sensation, and I trudge up the trail to get to Clare’s mountain. And I sit with her, in her space, and usually can calm down. I have other tricks my therapist has taught me for when I can’t get up there, silly things like patting my thighs or shoulders and focused breathing. But I’m also quite fond of yelling FUCK as loud as I can when driving down Hwy 9 or subtly giving people the finger when I see them with a baby. Subtle, I don’t think anyone has ever seen me do it! But going up to see her is the easiest, most natural way for me to chill my overreactive nervous system.
I wasn’t crazy paranoid about her being sick ever but these were still early COVID days, no vaccines or variants, so I was diligently observant. She had a big booger stuck in her nose one day. I got so worried about that damn thing clogging up her tiny snout and her not being able to breathe I got out the snot sucker thing you get when you leave the hospital with a fresh baby. I worked like the devil to get that thing out. I got it and I felt like the best mom ever! Another time I was certain she had a fever. We drove all over town in search of a thermometer. I could only find a rectal one. I’m checking out, telling the nice CVS lady I’ve never done anything like this before and she said, “Honey, do you have any lube for that thing?” Thank god for her. Clare didn’t have a fever, I stuck that thermometer in her butt for no reason, I still feel bad about that, but at least I lubed it up first.
On August 4, I posted a picture on Instagram of one my hogs, Fat Pig was his name, rolling in the mud, and one of Clare wearing whale pants. I said, “A pig in the mud and a baby in whale pants. Life is good.”
I spent the next morning making pickles. My best friend from high school and her family were coming into town that night for a visit. They were staying at an Airbnb about half a mile from our house. We decided they had a long drive, and Clare was predictably fussy in the early evening hours so we’d get together the next day. I got the code to get into her rental and was going to turn on the AC and leave them some fresh eggs and sausage for breakfast. Brian had just gotten home from work and came with me. I remember putting Clare in her car seat and she did this weird humphing sort of sound and shook her arms, fists balled. “Clare, what are you doing you weirdo?” We get in the driveway of the place, Brian gets out and starts looking around at everything, and I opened the back door of my car to get her out. She was blue. Clare was blue and not breathing. I screamed I think. I called 911. We whipped her out of the car seat, put her on the passenger seat, and Brian, following the instructions from the 911 operator checked for obstructions and began giving our daughter CPR.
There are a couple of things about this scene that are miraculous to me. One, that we were close enough to home that she didn’t die in the car. Had we gone another minute down the road she would have. Two, that the damn cell phone worked at all. I drive down Flat Creek Road at least three times a week and there is NO reception. But it worked that day and the Garren Creek Volunteer firemen arrived in all their glory.
Brian had gotten breath in her, but when the firemen got there, they scooped her up and tried getting her some oxygen from a handheld machine. Everything they had was too big, she was growing, but was still tiny and they struggled with it. And then the ambulance came. She was alert now, maybe a bit dazed, but they said we had to go to the hospital. I didn’t understand why.
“Ma’am, your baby just stopped breathing, that’s not normal and needs to be checked out.”
Well fuck. My hands reeked of garlic from the pickles. I was in ratty Carhartt shorts and a garden grubby tank top, no wallet and whisked into an ambulance with sirens screaming all the way down Old Fort Road. I remember I was freezing cold in there, and I asked the paramedics if she was going to die. I called my mom sobbing and kept looking for Brian out of the back window to see if he was behind us. (My mom says she’ll never forget that phone call, hearing the sirens behind my tears.) This was the first time in my life I’d known fear. I’ve been scared before, a lot, but this was true, deep, untouchable, palatable fear.
We got to the ER and one of the volunteer firemen had followed the ambulance. He stayed with Clare and me until we got checked in. I still don’t know his name, but can see his face and Wrangler jeans right now as clear as I did then. Brian couldn’t come in with us. I heard him shouting at one point before we got in our exam room, “My fucking wife and baby are in there, let me in.” They didn’t.
…
I’ve gone to a few child loss support groups but never found them very helpful. In one group though, folks were talking about how much it means when friends of their gone child reach out to them. I remember Sarah, a dear friend from college number one, who died in a freak accident when we were both nineteen. I use my sleuthing super powers to find Sarah’s mom, Sally, on Facebook and send her a message. I tell her about Clare, the child loss group and how much Sarah and her death changed the trajectory of my life. It did. I dropped out of college and traveled the U.S., understanding for the first time in my predictable life that things can change, or end, in a minute. Sally replies almost instantly.
We chat back and forth, exchanging condolences. When she sends a photo of a card, I recognize my girlish penmanship at first glance, but don’t remember sending or writing the card. It’s got feathers and leaves and silly hippy dippy shit taped to it. It reads, “My friend Sally, my eyes overflow with tears and my heart with love right now. I felt Sarah with me as I made this card and still now as I write these words. I have chills and am overjoyed by her presence. My thoughts and love are with you during this time, and I want you to know I shall be celebrating on Sarah’s birthday, a special day. Thank you for giving her to the world and now to the universe.” It’s framed and hanging on her wall and has been for twenty-four years. It knocked my fucking socks off. That’s pretty deep stuff for a goofy nineteen-year-old who knew nothing of loss.
…
Brian started texting me calmly, but I know him and I know his mind is racing trying to figure out how to fix this. Our old neighbor, Will, is an ER nurse and now lives across the street from the hospital. Brian calls him, even though we haven’t seen him in over year. We were very good friends as neighbors so reaching out didn’t seem inappropriate, and Will invited him over. He was able to call and get updates and relay them to Brian. They were likely getting more information than me at that point. The ER pediatric doctor came in and told me they didn’t see anything wrong with her, but we were going to be admitted to the pediatric intensive care unit. Brian was going to head back home since there was nothing he could do. He texted first asking if I wanted to meet him in the parking lot before he did. I went down and saw him. I cried, he cried, but we both agreed Clare was in the right place. They would fix our baby.
Clare and I got settled into the PICU, everyone was really nice, comforting me and fixing Clare up with pediatric gear that actually fit her little body. The heart monitor and IV port from the ER were too big. I got blankets and a phone charger from one of the nurses. We had a restless night. The PICU doctor came to see us the next morning. She looked at Clare and told me about all the tests they had run the night before. While we waited on the results she recommended we get the geneticist to come in and see Clare. That didn’t strike me as odd but maybe it should have.
“Is Bill Allen the geneticist by any chance?” I asked. Bill is Will’s dad. We had become good friends with the whole family over a summer when we all tried to “farm” together. The farming was a disaster but friendships were made that would last a lifetime.
“Yes, do you know Dr. Allen?” she asked.
“I do!” I was thrilled that someone we knew and trusted would be looking after our precious daughter. Again, the thought of why a geneticist didn’t really cross my mind, only the friendly familiar face of a brilliant man.
The doc asked about her little squeak noises. I told her she had made that noise while breathing from very early on. She asked about her seeming a bit floppy. She didn’t seem floppy to me. She was a seven-pound baby, what did they expect her to do? Cartwheels? Dr. Bill came in. We couldn’t hug or even shake hands but we bumped elbows, and he told me how beautiful Clare was. She was. Even with all her tubes and monitors. He told me all the tests were coming back negative and by all standards she appeared to be a happy healthy baby. But she had stopped breathing. Dr. Bill also seemed concerned about her “low tone” and general floppiness. I asked him if we might not ever know what happened and he said yes. I hated that answer. They did a scan of her brain and an ultrasound of her heart after he left. Nothing came back with any information. It looked like we were going to go home the following day, August 8, my forty-second birthday, with no clue as to why a perfectly healthy baby stopped breathing.
But we were worried Clare was going to pull her stop breathing trick again, so I got Brian to go to Target and get an at-home monitor. You attach it to the baby’s foot, and it alerts if their oxygen level drops or heart rate changes. It seemed like a safety net we would want, and it would give us some comfort.
We were discharged the next morning, with “That was probably a one-time event” and I accepted that answer fully. That first night home was sleepless. But the monitor never went off. Clare woke up every three to four hours to eat, and I kept waking up just to check and make sure she was breathing. I didn’t make a pallet on her floor to sleep on, so was generally pretty pleased with how laid back I was.
I had gotten a stroller for my birthday. Brian put it together, and Clare was wearing her little alert sock when we put her in it for a test drive. It was the kind of stroller you snap the car seat into and as soon as we put her in it, she made the same humphing grunt noise as she did the first time, and the monitor alerted low oxygen. I snatched her out of there so fast! My heart was pounding, but as soon as I held her the alerts stopped and her oxygen went back to normal.
Well, now I was certain it was the car seat. I started reading about positional asphyxiation, and it made perfect sense. What a relief! It was the damn car seat that almost killed our baby. But the monitor kept alerting. There didn’t seem to be any rhyme or reason to why it was going off, and it always stopped as soon as I picked her up. The alert noise was like an air raid siren. Any peace that came from being home was lost when that freaking sock started making our phones scream.
I called her pediatrician the next day, and they got us right in considering what was happening. While we were waiting in the parking lot for our appointment Clare started crying, then almost gasping, and then started changing color around her lips and eyes. I whipped her out of her seat once again. She calmed down, her breathing returned to normal and her color restored. We got inside and I told the doc about the hospital and the event just then in the car, and he asked if she was always so floppy. Here we go again with the floppy baby. I was getting kinda irritated. Why was everyone so worried about her “tone” when it made perfect sense to me we had a car seat problem or possibly something blocking her airway. He put in a referral for a pulmonologist and a neurologist.
The neurologist saw us the following day. She was deeply concerned about Clare’s floppiness and low tone. Now I was getting concerned about that too, although I had no idea why. I remember asking if the low tone could be a result of her struggling to maintain her oxygen. Maybe, but probably not. She scheduled an EEG and MRI for the next day.
By that evening, though, Clare’s alert sock was going off almost every hour. I was a nervous wreck, the screaming sock didn’t help. At some point Brian called Dr. Bill who said to call the pediatrician and see if they could get us admitted to the hospital. It was after hours and I got transferred to a rather nasty lady at a phone answering service. I finally asked if they could just admit us without having to go through the ER. No. Well, then I need to get off the damn phone and get my baby back to the emergency room. And off we went. I packed a bag this time.
Brian didn’t drive like a bat out of hell like I would have. In fact, he was outwardly very calm. We were going to get her there, and they would find a blockage, do a minor surgery and boom, we’d all live happily ever after. But as we got closer to the hospital she started crying. Then crying a lot. Then gasping. Then turning blue. Brian ran into the ER while I got Clare’s car seat with her in it. Once we got inside a nurse yanked her out of her seat and started running with Clare in her arms screaming “Code Red.” We both ran after her, leaving the car running and doors wide open. Rules be damned. We were both going in this time, and no one tried to stop us.
…
The below freezing temps have come but somehow in our little cove frost misses us. So a few flowers keep providing. I pick a jar full of dahlias, cosmos, and yellow coreopsis for her tonight. A friend once told me upon visiting Clare’s mountaintop grave that cathedrals were designed back in the day to replicate a forest canopy, the opening in the canopy, the gateway to God, to heaven. I don’t know if that’s true, but there are times up there it sure feels that way.
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The ER nurses had no idea Clare had just been there, so they started doing all the same tests that had been done just days before. She was wearing a really cute onesie she had just gotten big enough to fit into. The nurse took it off her and threw it away. I remember that so clearly. Brian was frustrated by the redundancy of the tests, so after we were assured that he’d be able to come back in, I sent him out to park the car and smoke a cigarette. Clare was on oxygen and stable again, and I felt a huge sense of relief. Finally someone was going to figure out what was wrong with her because now something definitely was. This was not a one and done.
We were quickly transferred back up to PICU and went right back to room 212 that we had just left days before. None of the nurses seemed surprised to see us back so soon. The next morning Dr. Bill came to see us first thing. The pediatric doctor on duty that week came shortly after. They assured me they were going to do everything, run every test imaginable and figure out what was going on. First up was the pulmonologist. I was stoked, but then he didn’t find anything, and I was instantly deflated. Easy quick fix was off the table. Clare had to stay on oxygen all the time now or she would start coding. When she coded, it made that same awful noise as the stupid little alert sock did. The nurses kept adjusting her oxygen trying to find “the sweet spot” but her sweet spot kept changing. She was needing more and more support.
All the nurses kept trying to convince me to go “room shopping” for Clare and me, but I wouldn’t do it. I liked room 212. I slept there every night so it was definitely my room too. It had a nice big window that looked out over Biltmore Avenue and I could watch people come and go on shift change. They wanted me to room shop because 212 was laid out differently from the other PICU rooms, kinda in a corner so it was smaller than the rest. It made it tricky to get all the doctor gear in. And man did we have gear coming in. MRI machines, X-ray machines, specialists of every sort and all their accoutrements. Usually just one a day, but hell, it was a lot for both of us. None of them ever found anything wrong with Clare.
I’m not religious, raised with nothing even close to resembling faith, so when Nancy, one of the hospital chaplains, came into our room, I wasn’t sure what to expect or feel. But Nancy was a big comfort. She brought me a notebook so I could write down all the docs that came in, what tests they did and the results. She listened to me talk about missing home, my dogs, my garden and Brian, of course. She offered to pray with me once, but I passed on that. Given the final outcome maybe I shouldn’t have. She visited every day she was on shift. I’m sure there were others doing the same job, but Nancy was the only one to grace room 212.
In a semi stroke of luck, we had a customer who was a retired high-up at Mission. He had an issue with his pool right when Clare got admitted the second time. Brian, who doesn’t share much personal with anyone, told Charles about the situation, and he waved his still powerful wand and got permission for Brian to come and go as he pleased. So we all got to be together as a family every night.
…
I just walked up to Clare’s mountain and brought her a pig tooth and a foot from a rabbit we butchered. I love bringing her treasures. Especially now that the flowers are gone for the season. A purple button, a blue marble, shells from trips to the coast, pig teeth, rabbit feet. One day an archeologist might be exploring up there and wonder what the hell was going on. But by January the hellebores I plant up there, one every Christmas morning, will start to bloom and by February I’ll have a few little crocuses blooming and daffodils soon to follow. But from now ’til then, she gets man-made presents but only weird ones that find me. I usually keep them in my pocket for a couple weeks so all my love wears off on them. Then I tuck them carefully under her rocks and moss and gift them to her and the mountain forever.
Brian didn’t want me to take the rabbit foot up to Clare. “You’re going to draw the coyotes in, they’ll dig around her grave, you’ll be pissed and send me coyote hunting.” He was right, I would have been pissed and definitely would have made him try to kill the offender, but it’s been days and the fuzzy black foot is still there. It might seem macabre to bring your dead child dead animal parts, but we are still doing things our way. Our way in life and still in death.
We all have big plans and dreams for what our kids will do, what they’ll experience and learn from us and the world. When your kid dies that goes too, that’s another death that hits every day, grieving for the lost future. But I go trek up and tell her all the stuff we’re doing, projects we’re working on. I try and keep her in the dreams we had for her just like I try and keep her in flowers, because that’s all I can do for her anymore.
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We were back in the hospital a week or so when someone suggested I go home for a bit. I was aghast. Leave my sweet baby? But then gently, maybe just for a couple of hours, take a shower, see the dogs. At first I wouldn’t leave unless Brian was there with her, and I didn’t have my car, so in reality I couldn’t. But it wasn’t looking like a checkout date was coming any time soon, so Brian and our neighbor dropped off my car and the next day I went home and left Clare for the first time ever. I remember driving home thinking how everyone was just doing their normal life, like my baby wasn’t even in the hospital. I was offended they could be so callous even though they didn’t know us. I saw several deer at the bottom of my road and thought how nice, they cared enough about Clare and me to come out in the middle of the day and welcome me home. Even if it was just for two hours.
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Brian brought me takeout every Friday night. That week it was Texas Roadhouse. We were chowing down on cold steaks and baked potatoes when my phone rang. I saw it was Dr. Bill…7:00 p.m. on Friday. It could go either way, the worst or the best news. My mouth was full, so I just swiped to answer without saying hello while I finished chewing.
I heard his wife in the background say, “What are you going to tell her?”
“The truth” he replied. I choked out my greeting and he said, “Amanda, I’ve got results back from the genetic testing. It’s not good. If Brian isn’t there, get him there. I’ll be there soon.”
I threw the rest of my supper away but Brian ate his, because he’s Brian. I held Clare while we waited. Not good he said, not good. Dr. Bill arrived and handed us a one-page double-spaced printout describing all that is known about SMARD (spinal muscular atrophy with respiratory distress) and told us the results came back as that being her problem. A big problem, a fatal problem. She could possibly live a little longer with a tracheotomy, feeding tube, wheelchair, and round-the-clock medical care. Her brain would work fine though. A prisoner trapped in her own little broken body. And even with all that support, the life expectancy of a child with SMARD is two years. I read the one double-spaced page over and over. It checked all the boxes. Small birth weight, floppy, weak cry. Less than 100 cases in the world. Fatal.
Dr. Bill left us with our paper and our very sick daughter and a room that smelled like stale takeout trash. Brian and I sat in disbelief. This was it. All hope was gone. Our sweet Clare was going to die. We decided right then that we’d take her off all her support the next day. Brian left eventually, I called my mom and she let the rest of the family know. The nurse on duty came in, the one I called the millennial man nurse. He had lots of tattoos and gauges in his ears and was the only man nurse I ever saw in our three weeks there. He told me not to give up; they were making big strides with SMA. I had to give him the one-page double-spaced printout to read so he’d know the difference between the two disorders.
I was almost afraid of Clare then. I felt jumpy holding her that night. Odd since we were going to let her die the next day. Let her die, that was the only fucking thing we had any control over and it seemed then and still does, like the right choice. She didn’t need to stay alive because it was medically possible, and we weren’t going to make her suffer and struggle with the simple task of taking a breath. The respiratory distress part of SMARD was that her little diaphragm was weak to the point of paralysis. My bird couldn’t breathe. I always called her bird because of that cute squeaky noise she made, like a baby bird, but that noise was fatal.
Brian came early the next morning, Saturday August 22, and we waited for all the doctors and specialists to arrive to talk to us about our options. Funny though. They didn’t know anything either. They had been given the same stupid single double-spaced page we had. So, we all went into a big conference room and we read the printout together. Yep, got it.
“We want to let her go,” one of us said. “We want to take her off her oxygen and let her go.” That PICU doctor looked at us both, right in our eyes, back and forth between us, and said, “You guys don’t waffle do you?” No asshole, we don’t.
…
I don’t have to walk up to see her every day like I once did, but I sure as hell need to get there now. So do you. Come with me, follow me up to the mountain, Clare’s mountain. Say her name with me so she doesn’t get forgotten. Clare. Clare Jeanne Burns. You are loved, Bird.