The week after we get home from the hospital I spend every second I can sitting in front of the computer searching for information, anything that can help us, tears streaming down my face most of the time, as I hear the voices of other mothers sharing their tales of the daily blood sugar battle. Every minute that I’m not in front of the computer I spend caring for my four-year-old son. I prick his fingers; I count his carbs; I give him shots. He hates it. He screams and kicks and it takes both my husband and my mother to hold him still so I can poke needles into his arms and his legs. They pin him down and I stick him. I am relentless. This disease is relentless. And I am so pissed off.
I wash my hands at the kitchen sink before I prepare the insulin pen for my son Matthew’s post-breakfast shot. I stare out the window. Out back by the stone wall there’s a pile of sticks that’s taller than me. It’s a ten-foot-wide snarl of twigs and branches and bark that’s been growing since we moved in five years ago, an accumulation of debris that, piece by piece, fell from the trees in our yard. The sticks drive my husband crazy. Over the summer, I made a game of it with the boys to see who could collect more sticks for the pile, but it’s autumn now and my husband curses the trees and the leaves they make. The neighbors behind us, with their designer landscape and chemical green lawn, hate our trees too, suggesting we remove the overgrowth sprouting along the upper ridge of the wall, even offering to do it for us if we’ll pay for the line of evenly spaced arborvitaes they say they’ll plant. I decline every time they offer, in part because I know it drives them crazy, but mostly because I love the tiny bit of wild country arching up over our backyard.
I know that the better I control the schedule the better his blood sugar numbers will be, so I wake Matthew before seven every morning to inject him with the time release insulin that will run in the background of his body, forming a little safety net of sugar-squashing serum that will keep his level from getting too high throughout the day. He hates this shot. The nurses told us that the medicine stings going in and I have to leave the needle in his arm for six seconds so he screams and wiggles as my husband and mother hold him down. I offer soothing words but cry myself every time I pull the syringe out. I try to hug him and he kicks me in the neck. I have to kneel in front of the chair to reach his arms or legs, so his feet strike my chest or my face, mostly. Sometimes he breaks free and smacks me in the face with an open palm if I don’t stand up fast enough. My mother yells at him, but I tell her not to. I deserve to be hit. He doesn’t deserve this.
Week three post diagnosis, my mother is leaving, returning to my father and their everyday-is-sunny life in Arizona where they will drive the golf cart to the club to have lunch after their daily round and discuss how fast the greens were or how slow, how so-and-so saw a rattlesnake on the eleventh hole again and how the javelinas ate all the geraniums from the planters in front of the atrium and isn’t anyone going to do something about that? Matthew and his brother still talk about the hillsides covered in saguaro cactus that we drove through on the way to the Desert Museum when we were out in Tucson last March. This isn’t a lush green forest like the ones I grew up with. It’s an army of cactus, the kind Snoopy’s cousin Spike slept under in the Sunday paper when I was a kid. I had warned the boys not to go too near the cactus, especially the cholla, because they have spines that can actually jump at you and embed in your clothes or skin and that would really hurt, like being stuck with a thousand needles at the doctor’s office. That’s what I told them. I scared them with a thousand needles in order to keep them safe.
I look through my kitchen window at the growing mound of sticks in my yard and wonder why we piled them there, straight through the window where I have to see them every time I’m at the sink and I’m at the sink all the time now, washing my hands for every blood sugar check, every injection, so that’s what, ten more times a day that I have to look at this pile of sticks? Ten per day multiplied by every day for the rest of our lives because this disease is relentless and it isn’t going anywhere. He will have it forever and we don’t know why.
Week three and I still spend all my time in front of the computer reading everything I can, trying to make sense of it, trying to find a reason. Every doctor, every nurse, the nutritionist, the social worker and even the old woman who brought the therapy dogs to Matthew’s hospital bed told us that it wasn’t our fault, but I know they don’t know if that’s really true. When my husband arrived at the PICU he looked at me with tears in his eyes, saying it was his fault for not feeding Matthew right, for letting him have too much sugar because it was easier to give him the Pop Tarts he wanted than to force him to eat fruits and vegetables. I tell him it’s no one’s fault, that this is Type 1 and it doesn’t come from eating too much sugar, it comes from inside your own body. I tell him that our son’s body turned on itself and killed the cells it needed to make insulin. I tell him that, if anything, it’s my fault because I am the mother and I gave this to him because it’s an autoimmune disease and I have an autoimmune disease too and well, once you have one, you can have any so that’s why our son got this. It’s not his fault. It’s mine.
When I was young, my parents moved us to the mountains, the real mountains with forested wild growth of trees and swimming in creeks and driving through mud and bears in garbage cans and dirt under fingernails and a day off from school for the start of deer season and always, always breathing in fresh autumn air. This is what we knew and believed to be true where I grew up. It was trees and fresh air. I stayed rural and true until I was thirty when I moved back to the city, and now I live in the suburbs where you feed your children Pop Tarts because it’s easy and you have a woman come clean your house every two weeks on Wednesday and you go to work for ten hours a day while the kids go to daycare and you pile sticks in your yard because you don’t know what else to do with them and besides, you kind of like how it messes up the pristine and even architecture of so many well-kept lawns stretching out infinitely around you.
But one day you are three weeks post diagnosis and real exhaustion is taking hold because every 2 a.m. that comes means you have to get up and check your son’s blood sugar because it will drop at night and if it drops too low he could have a seizure and you will have to stab him in the thigh (the muscle, make sure it’s the muscle) with an inch-long needle that’s filled with the same stuff that the liver produces so the blood sugar in people without diabetes doesn’t drop too low at night. Every night you are awake checking him at midnight and 2 a.m. and maybe if his numbers are okay you can sleep until 6 a.m., but you don’t. You wake up at 3 a.m. and 4 a.m. just to go in to see if he’s breathing okay and not all sweaty on his neck because the first time he had a low blood sugar his neck was soaked with sweat. If you don’t check on him he could just die. He could go low and not wake up and die in his sleep at 2 a.m. or three or four or midnight. He could die in bed.
And you have to be careful of the bath too because I read online about a thirteen-year-old girl who had a severe hypoglycemic episode in the bathtub and drowned. She couldn’t get up because she dropped too low too quickly and got too weak to even call out for help. And so she drowned and I tell my husband this story because, even though we are good parents and we would never give our son Pop Tarts because it’s easier or leave our four-year-old alone in the bathtub, kids can drown in an inch of water. I worry my husband will leave my son in the bath for just a second to go check the score of the hockey game and he will lose track of time, and blood sugar can drop very quickly. We can’t be too careful now so I know I will never allow my husband to give my son a bath because I will be home at all times and keep my son safe. I will be with him at all times to give him a bath and keep him safe.
Last spring, the pile of sticks grew more than it ever had after we had a guy climb the dying ash tree to remove the rotting limbs that threatened to fall on my boys as they played baseball underneath. Smaller pieces came down along with the big branches, so they made their home on the pile. We kept saying we’d burn the sticks, but last summer was so dry, this summer so wet, and we removed the stone fire pit a few years back because it was right in the middle of the yard and I was afraid the boys would fall over it and crack their heads open. The pavers from it are stacked in the garage. I took pictures of each stone layer as we dismantled it because we said we’d put it back together someday, after the boys are grown, but now I wonder if I’ll ever have time for a glass of wine in front of a fire on a summer night because I can’t drink wine if I have to poke little fingers as they sleep or inject insulin in the subcutaneous layer (not in the muscle) on the backs of skinny little four-year-old arms. I can’t drink wine if I have to wake up at midnight and 2 a.m. and three and four every night, because wine puts me to sleep.
At the start of the fourth week I ask my husband if he thinks I’m depressed because I am crying so much that I can’t hide it from the kids anymore or the women who walk by as I sit on the bench outside my son’s preschool class every Monday, Wednesday, and Friday morning with a juice box in my bag in case he goes low. I can’t call anyone without crying and I can’t even fall asleep between the midnight, two, three, and four o’clock wakings. I stay up now most of the night and watch season four of Madmen and knit a sweater I’ve been working on for twelve years. I try to write but I can’t because I’m much too angry and what would I write about anyway except how pissed off I am that I had to give up everything I thought I was going to have. I had to drop out of grad school after just one class and we had to cancel our trip back east for Thanksgiving because how can we drive twelve hours without knowing where the hospitals are or what I might even need one for? I am housebound. I am diabetes bound. I am a stay-at-home mom. I am unemployed. I am nothing I ever thought I’d be and I’m not what I used to be. I am a caregiver to a chronically ill child with a life-threatening illness that requires constant management and I live in a house in the suburbs where you can see the cell phone and water towers rising behind the cul-de-sac because there are no mountains to tuck these things into. The fresh air is gone too. The fresh air and mountains were only temporary and now none of this is temporary. Suburban lawns aren’t temporary and marriage isn’t temporary and neither are children. Diabetes isn’t temporary, not at all.
My husband tells me to give it more time, that I don’t need antidepressants. That I should just try to get some sleep. So I try harder, but I can’t. We have a copper fire pit in the garage, just waiting to be put together so one night at 2 a.m. I do that, tightening the screws and nuts by hand, not bothering to finish with a wrench. Now that I’m home and have the time I never had when I was working, I should be outside getting some fresh air beneath our wild ridge of weed trees. I haven’t been outside for weeks, except to take Matthew to doctor appointments. I finally have the time, between injections and finger pricks, to work on that pile of sticks that I thought would grow larger without causing anyone harm or pain, but now I look at it through the kitchen window and hate that I didn’t take care of it sooner. I want to break every stick and burn them and destroy what I thought would take care of itself. I didn’t worry about it before, not like this, but now I worry about it constantly.
Animals could live in there. Animals that carry diseases could live in that pile of sticks and I’m sure they do. I know they do. We’ve seen raccoons, possum, and foxes. And squirrels, so many squirrels. I shouldn’t have let them in there. My son’s immune system is weakened now and these animals that he used to excitedly watch through the windows, these animals carry diseases. You aren’t supposed to have animals in your yard when you are married with children in the suburbs. We had bears in our garbage cans when I was growing up in the country, but you shouldn’t have animals in your yard in the suburbs. You shouldn’t have a messy pile of sticks or dying trees that can fall on your children or fire pits that can crack skulls or chronically ill children either.
Week five means we no longer measure in weeks; we now measure in months. It has been one month since everything changed, so friends bring me lunch and I answer their same questions with the same answers:
No, he won’t grow out of it.
Yes, it’s the “bad” diabetes.
Yes, he can eat that cookie.
No, he can’t control it with diet.
Yes, he is on insulin.
Yes, every meal.
Yes, every day.
Yes, for the rest of his life.
I smile and nod when they say that everything happens for a reason and God doesn’t give you more than you can handle because they all say it even though I am screaming inside that there is no fucking reason for this to happen to a four-year-old and especially not to my four-year-old and what fucking God would allow this to happen to a four-year-old anyway and if they saw how I was handling this when I threw the dishes in the sink the other night and pounded on the kitchen window trying to smash that pile of sticks from behind the glass they probably wouldn’t think God gave me anything near to what I can handle. And I almost jump across the table at my sister-in-law when she tells me she had a dream in which her mother came and assured her that everything would be okay. It will all be okay. I look at her and ask her what will be okay, the diabetes? And she says yes and I tell her that she is wrong, that it will not be okay because it will never go away and he will have to live with this every day for the rest of his life. I am angry and I make her feel bad and am happy that I do. I want to spit in her face because she never brought us dinner or came over or tried to help in any way at all. It took her five weeks to show up and tell me that her hairdresser’s daughter knows someone who knows someone with diabetes who played baseball all through high school and he was just fine and so Matthew will be just fine. I want to tell her to fuck off but I don’t because I am married to her brother and married people who live in a nice suburb on a nice street with a nice house and a nice yard, except for a pile of sticks out back, don’t tell their sister-in-law to fuck off.
The skin on my fingertips is starting to crack from swabbing my son with alcohol wipes ten times a day. I’m washing my hands at the sink and my thumb starts to bleed and I stare through the window at that pile and start to cry. I can’t stop crying and now, and my son is crying so we go outside and we break sticks and branches and pieces of bark into smaller sticks and branches and pieces of bark. I bring him out with me because I can’t leave him in the house alone because something can happen because he has diabetes and is only four and I can never leave him alone again so together we work on that pile for hours, stacking as many little pieces as we can into the wobbly fire pit until the mesh cover can’t hold the pile down and then we set it on fire and sit watching it burn with a bowl of goldfish crackers to snack on. The flames wave high and bright and for a moment I feel okay. I feel okay for the first time in five weeks, so we do this over and over, breaking and burning, yet the pile of sticks by the wall is just as big as it was when we started and now that the trees are dying more sticks are falling, littering the yard with the debris that drives my husband crazy so he will keep piling them on as my son and I take them off to break into smaller pieces to burn. Every day we cry. Every day we break the sticks. Every day we burn them. And every day we know that it will never go away.
Rumpus original art by Genevieve Tyrrell.