it is January 6, 2017. i am 45 years old today. it is a happy birthday, and so much more so, because of last year’s—the worst of my life.
on January 5th, 2016, i rushed away from work after a staff meeting and picked you up from after school care. i made arrangements for daddy to pick up mariel. we just have to do this quickly. you will pee in a cup, and she will give us our prescription and we’ll be home for supper. maybe we’ll stop at the pharmacy on the way home and you’ll get a treat. look, the days are getting longer already.
you ate 2 granola bars in the car and i had one saved in a bag that i wouldn’t let you eat. you drank 2 water bottles and begged for more. but i only had one of those left too and i was saving it. the floor of the car was full of empty water bottles that we had burned through in recent weeks.
at butchart gardens the week before—“she sure drinks a lot”—rebecca, a family friend and kindergarten teacher. she knows how much kids your age drink. it made an impression. i tracked it. 6 litres in one day. peeing all the time. i made the appointment with dr. ferg, and elected for one a week later because the time would work better with my work schedule.
she weighed you. you’d lost a kilo since you saw her in october. i told her how your teacher had asked for a water bottle because you were drinking so much. i was worried you had a UTI. i told her you had 7 bowls of cornflakes this morning.
she gave you the cup and i helped you pee in it. not so hard, and we’re girls. we have to do this a lot. might as well learn. you wait in my arms in her office while she checks it.
i am impatiently looking at my phone, thinking about supper, and trying to get you to stop touching everything. hoping your dad remembered to get mariel. she comes in with a serious look on her face. my stomach clenched. what is it? the next words, i will never forget.
she has diabetes. you have to go to the hospital.
so what do we do about that? do i give her…insulin? they’ll teach you at the hospital. i start to cry and stop myself. it’s time to think. she is dialing the phone. she talks to someone at emergency. yes, i’m sending them right now. right now? can i stop at home and change and get my charger first? no. you can’t. you have to go right away. from here? she looks at me. steady eyes. you need to go.
a quick text to daddy and we are off. an unexpected hug from dr. ferg.
in the car. mom, what’s happening? we have to go to the hospital. why? they are going to take care of you there, and tell us what to do. why are you crying? because you’re sick, honey. i did not tell you, i’m crying because i’m thinking about needles, and how sensitive you are. because i have a vague sense of what is coming and it is very very bad. why you? why my sensitive one? i try to cry silently so you can’t see me in the dark. but you know and you are trying to comfort me. why are you crying mom, if i’m the one who’s sick?
i will myself into using the blinkers and wipers and staying between the lines. i park in the staff lot. my parking’s still valid from work. we walk up the hill. it’s cold. you’re thirsty.
we are the only people at triage and we go right up. they weigh you. they poke your finger. it startles you and hurts. it bleeds a lot. you cry. we sit for just a second in the empty waiting room. they call your name and take us back past a sea of people to where we will spend the next 6 or 7 hours. a big giant electric bed with lots of wires and beeps and curtains that close around it. you want to play with everything. you don’t feel or look sick and it all seems like a big confusing hassle.
we meet a nurse. diane. the first of many dianes. doctor matt. you’re bored and thirsty. you have to pee. i take you across the hall to a filthy scary bathroom. the toilet flushes unexpectedly. you scream and sob.
you are asking for supper. i ask them for food. no they say. they have to get this sorted out. i have the leftover granola bar. i give it to you, small piece by small piece. they want to start an i.v. i ask if there’s any way we can avoid that, do it without. they go check.
another finger poke. tears, screaming. i ask, didn’t you just do that? why do you have to do it again?
i text daddy. he’s got mariel. he’s worried. stay put. i’m still learning what’s going on. i text lisa. cora has diabetes. are you ok? i’m fine. do you need someone? no, i’m fine, just wish i had my charger. i’m coming. i’m fine. i’m coming, she repeats.
dr matt again. is there any history of any auto immune diseases in your family? i tell him about dad’s side having crohn’s. i mention that there’s type 2 all over the place. that has nothing to do with it. is it because she had all that sugar at christmas? NO they say. she’s anxious. she doesn’t understand what’s happening. can you make this easier for her? give her something for the pain of all these needles? this is her new life now. dr. mccullough. you said those awful words.
it’s past supper time and you are so hungry and so scared and people keep giving you needles and you sob. a nurse. with stickers. a child life specialist with little crowns and prizes. lisa arrives with her iPad. she teaches you to play cut the rope. brought some snacks and starts texting daddy because now my phone is dead. we make a list of things for him to bring. she played many hours of UNO with you that night, and the next day, when she came back.
the i.v. with the butterfly and the nice nurse who made it almost painless. you sure didn’t like your arm all taped up. the tape, to this day, is worse for you than the needles. dr matt comes back. he’s the nicest. he talks to you. he asks you questions. he treats you like the most important. lisa is here and helping me. writes down what he says. turns to me and says, i think he’s saying you’re not going home tonight. we’re not? how long? could be a few days. what? we’re trying to get you a room. it’s really busy. they have no space. i don’t even know if i texted work. i was still wearing my badge.
she’s tired and she’s hungry. she’s up past her bedtime and really scared. i tell everyone this.
daddy arrives with a giant suitcase full of strange things. a pillow. but my charger. and my running shoes. they are taking us upstairs now. it’s 11:30 pm. lisa says goodbye to us up there. we are in bed B. bed A is a little baby who cries all the time, with young and worried parents. she’s hungry, but they can’t feed her because she is having surgery. i listen to that hungry cry all night. beds c and d are a baby and a toddler, also crying, also with very worried parents. everyone’s trying to be quiet but everyone is suffering so much. one frazzled nurse who didn’t know we were coming and doesn’t know where to put us.
daddy hugs us goodbye. he has to get back because the neighbours are with mariel and she is freaking out. there is a lazy boy beside your bed. the nurse pulls it out to make a bed for me. puts a sheet on it. instead, i crawl into bed with you. i tell you you are so brave. you ask what is happening and i say i don’t know, but these people are taking care of you and mommy is right here and it’s going to be ok. you are so tired and scared but eventually i can feel you drift off. only then, i look at my phone, hanging from the charger from some weird place on the wall. it’s midnight. it’s my birthday. i am laying there with you in my arms. finally, i let myself cry. i cry so hard the bed shakes. it doesn’t wake you up. i cry and cry and cry. and all i can think about is please, be ok. please let my little girl be ok.
an hour later a tech comes from the downstairs lab. has to take your blood. now? she’s asleep. i’m sorry. we wake you up. i feel terrible for doing it, and angry that these strangers keep coming and coming. it’s a doozy. they have to fill tubes. i hold you and you cry and cry. they lance your fingertip at the most sensitive part and you need a bandaid. the sight of your blood still shocks and traumatizes me. 11-14 times a day, since that very first one.
finally back to sleep. i curl up on the lazy boy and the sheet. you are so warm. i just need to stretch out. the babies keep crying and i can’t shut my brain off. i know that one beside us is hungry. i know my own client is across the hall having his surgery today.
i’m on Facebook and people are wishing me happy birthday and i just can’t stand it. it feels like searing pain to have to think about me or some happy occasion. i just want to think about you. i post a message which sends off a firestorm of inquiries and i direct them through lisa and jen and darcy.
you wake up. it’s your birthday, mama. you wake up thinking about me, after all that. you ask, what’s going to happen today?
daddy gets here and we purge some things from the large suitcase and send it down to the car. almost at the same time, jen and lisa and alecia and marg show up. coffee and support. when i see marg, i hug her and cry just a little, trying to hide it from you. she says it’s going to be ok. these folks know what they are doing. i try to believe her. it was the first time i felt less scared. at that moment, a smiling, young blond nurse named Cora shows up. she has things for you. stickers. new injection pens, one red, one blue. she gets them out and shows them to you. you need a finger poke. she does it with you. you cry. you are starting to freak out more, with every shot. daddy is here now, and he sees. he’s worried. we hold you, one of us on each side of you. but it’s like we are holding you down.
more visitors and talking and nurses. dr mccullough comes by and some odd medical resident who doesn’t know what to ask but wants to sit and chat. i want them to go away.
the next needle does both of us in. you scream before it’s anywhere near you. i have to leave the room, leave you with daddy and lisa. i can hear your screaming down the hall. i sit in a chair with my head in my hands. still dressed for work. dr. kent is at the desk, doing rounds. he says hi. i say, i’m here for personal reasons. i can’t stop shaking. he is kind. he wishes us well.
my client’s family goes back and forth. i see them off and on for the whole day. it rattles me. i’m on display. i’m at work.
i go back in the room and i talk to the nurses and i say: we have to do something different. she is not handling this. my friend lisa here knows about anxiety in kids, i wonder if she could give us all some suggestions, and we could make a plan? this has to get better. a child life specialist named diane shows up. with games. stickers. makes a chart with you. they suggest i go down for food.
i haven’t eaten in more than a day. it’s butter chicken day at the cafeteria. my birthday lunch. i spill it on my work shirt. but it’s so good. abi texts me a picture of donuts and it makes me laugh and i go to tim hortons and buy two and text them back to her.
i run into my client in the elevator.
a room switch. quieter, more space. time with diane. kristin and michelle from school come. sally. karen. alecia with coffee again. the hours blend together. we find a quiet room for your shots and you earn bravery points. kristin is there for the first one where you didn’t cry. finally night hits and i’m too tired to switch my parking. the nurse offered to watch you while i ran down but the truth is that i could not leave you. you’re still constantly asking for food but at least now there is the iPad and headphones and chargers. your i.v. came out sometime that day. but the shots never stopped. daddy leaves to get mariel and it’s just you and me and we fall asleep with my arm over you and our heads pressed together.
three days later they send us home. daddy and i have a binder full of things that we have just learned. we’ve done shots on each other and on you. he is more brave than i. he signed up for the first one. the principal of your school calls me at the hospital, says, send her when you are ready. we are ready and she is welcome. i cry some more. i’ve been working so hard to not cry in front of you. these unexpected kindnesses do me in.
you proudly hand me a painted box that you’ve been working on with diane for 3 days. it’s my birthday present.
on our way out of the hospital room, dr. bingham comes in. she gives us your prescriptions. she introduces herself to you. she has long brown hair like you. she tells you that she has diabetes too, and got it at about your age. that she swims and she skis and she does whatever she wants. and you can grow up and do whatever you want.
that was my birthday, 2016. it was the hardest day, and the beginning of the hardest year of my life. we had lots of bumps and scares this year. so many. my brain always felt like it was too full and not full enough at the same time. you slept in my bed for the first month because i couldn’t bear for you to be so far away. there was a night i slept on top of your vomit. there were three nights where i had a syringe in each hand and a timer set for every 5 minutes to check you and seep water into your cheek. there were nights where the finger poker didn’t work and we had to do it 5 times and you screamed and screamed and said you were running out of blood. we had a bag packed for the hospital all the time. i slept fully dressed for months and even still sometimes. we called the paediatrician at 3 am when we couldn’t figure it out. you went into DKA twice with vomiting and tummy aches and ketones and fear. you got the pump in september and the next 6 weeks were like starting all over again. we got by, sometimes minutes at a time, sometimes hours. scared and scarred and putting on our bravest face for you.
and we lived. you went to karate the day after you got home. we shakily took a step and the next and the next. we took you to school and were terrified to let you go in. but kristin and marg and the others were watching over you. slowly daddy taught you to do your own finger pokes, and then your own shots. slowly we let you venture further away, always hovering nearby. earning your yellow belt and student of the year in karate. learning to swim. biking all the way to school. playing your cello and practicing every day. learning to read well in french, and now english. lots of math from all of the medical care. science camp and a little musical theatre. dancing on the beach and a wedding too. hours in the cul de sac making mischief with the neighbours. every step, a whole new world.
early on, that first week home, you asked, will i have diabetes forever? and you cried and cried in my arms. last week, you asked, if i get too much insulin will i die? if i get not enough insulin will i die? it was so hard to tell you yes. it was like my chest ripping open. even though you’re the one who’s sick.
there is no silver lining. there is no positive from diabetes. it’s expensive and exhausting and a balance beam where you die on either side if you fall off. you have to get tough and look it in the eye and stay calm, no matter what it throws. you have to make important and precise decisions no matter what is going on around you, no matter how tired or busy you are. no matter what you had planned.
that night, when midnight came and i turned 44, all i wanted was you. now i am 45. and you are still here. it is everything i ever wanted. it is worth every hard journey, big and small, this year, and all the years to come. you are oxygen. you are medicine. and there is nothing that i would not do to keep you well.
forever, mama.
