I struggled when I first started writing this, mostly because it feels arrogant, somehow, to assume that one’s story is of interest to anyone else. And so I wanted to start this by explaining why I decided to share what I have.
I think mostly I just didn’t know where to look, but I know that amidst all the feelings of being overwhelmed, and confused, and scared, if I’d been able to read stories of other people who had been through what we were going through, it would have helped. To see that whilst the beginning is almost always pretty awful, the “ever after” can actually be quite beautiful. That all of these things won’t feel terrible forever. I’m writing this so that other people, who’ve just been diagnosed themselves, or who have a child who’s just been diagnosed, have someone to tell them that it gets better. I promise it gets better.
Type 1 Diabetes for us started on a hot August day in 2018, when I was approximately 7000 months pregnant, very much over everything, and honestly not really in the mood to handle any additional curveballs that life was contemplating throwing at us. My best friend was visiting from the UK – a much anticipated visit full of laughter and exploring – and we were sat outside eating breakfast one morning with our goofy just turned two year old. “Can you keep an eye on how much he’s drinking?” I asked. “It seems like a lot. I think I’m probably just worrying, but it seems like a lot.”
I’d spent the last week on early maternity leave, wondering whether our potty training failures and frankly slightly alarming toddler mood swings were just symptoms of me adapting back into life as a stay at home parent. But the thirst had stood out most – our toddler just could not stop asking for drinks. Every five or ten minutes he was asking for more. But it was the summer, and he was growing, and he never stopped moving, so I flitted between “it’s a normal kid thing” and “something’s wrong” with frequency. Then, on her last day, my friend gently agreed that a trip to the pediatrician might be for the best, and so after we’d made our tearful airport goodbyes, I picked up the phone and made an appointment for the next morning.
“I’m worried it’s Diabetes,” I said, as I sat down opposite our kind, unassuming doctor. I don’t even know why I said it really, because I hadn’t even let myself think that word out loud until then. It was just that when we were sitting in that doctor’s office, it had all started to come together. Constant thirst. Leaking out. Early morning baths now a daily necessity. “Did you know he’s lost three pounds since we last saw you a month ago?” “No”, I said. “I mean he’s been slimming down, but he wasn’t exactly the skinniest baby, and everyone said that would happen once he was running around more. I’m sorry. I should have noticed.”
“Don’t be sorry”, he said.
Next came finger pricks and ketone tests and after a long, deep breath, he said the words I really didn’t want to hear: “I think you were right. He needs to go the ER. I think it’s Type 1 Diabetes.”
The unfortunate thing was that the day before – the same day our friend had left – my husband had driven to his parents’ farm two hours from us for a spot of camping. He’d been working non-stop for months, and he really needed a break. Literally nothing good ever comes from my husband going camping. The first time, the toddler came down with hand, foot and mouth disease. The second time, I got sick. This time, he’d actually kissed me goodbye and said “just both of you try to stay healthy this time, okay? Try not to go into labor, or you know, die or anything.” “We’ll be fine,” I said. “Go have some fun.”
Just one day later and I was calling him from the ER, with a phone running on less than 20% battery, a sobbing toddler and a new doctor who kept talking about a “new normal” that I didn’t really have any interest in finding out about. I didn’t want a new normal. I wanted our normal. We had a baby coming in a matter of weeks, a nursery that wasn’t even set up and barely enough money to make it through a year of maternity leave. My husband – initially unreachable with zero cell reception but eventually tracked down by my ever-kind mother-in-law – was on his way, but still hours away. A kind friend had saved the day with a phone charger and cartoons to keep the toddler entertained/me from crying. And I remember thinking that if one more person said to me “wow, you’re very pregnant for all this to be happening” I’d probably weep.
The Hospital Stay(s)
A few hours later, we were at the Children’s Hospital. The first night was a nightmare of shift changes and miscommunications, and one horribly overtired toddler.
Early the next morning, the intensive diabetes education classes that would teach us how to count carbs, calculate doses, administer injections, monitor blood sugars and test for ketones began.
The classes, filled with what felt like years worth of information crammed into hours, were interspersed with snatched moments with kind family members as they came to entertain the super-anxious toddler, and multiple failed attempts to remember to order carb-counted meals before the relevant time windows closed. Our boy had never actually had juice boxes before this point, so in that way at least, the kid thought he was in heaven.
With what can only be viewed as especially unfortunate timing, that first day of classes also coincided with the day our second-born, who even now is nothing if not a man of conviction, decided to make an entrance into the world, a full four weeks ahead of schedule. Sometime around midnight, driving home from the hospital, it occurred to me to time the stomach pains that I’d put down to the stress of having a hospitalized toddler. At the start of the journey they were 20 minutes apart, and by the time I’d been driving for an hour, they were 10, which was, I remember thinking, a bit unfortunate.
I remember idly considering whether I should stop by a hospital I saw a sign for and ask if they thought I might be in labor, but ultimately decided against it, although I can’t really remember why. By 2am my Mum was driving me to the hospital and my Dad was driving up to be with my son, handing my husband the keys to his (far too nice for us to feel confident driving) car to take back down to the hospital I was by then in, to see the birth of his son. He made it in time to see all the important stuff go down, which was what mattered. But he was driving back to our eldest before daybreak.
It was not lost on me that despite being born a month early, the only concern they had for our youngest was that his blood sugar seemed really low. And so in one hospital nearly 50 miles away I had a child fending off high blood sugars, whilst the one in my arms had sugars we couldn’t keep high enough. If only they could team up, I thought. Swap notes. Help each other out a bit.
The next few days saw doctors and nurses popping in to hear all about the toddler diagnosed with Diabetes/going into labor saga (not exactly what I’d have chosen for the most interesting thing ever to have happened to me, but there you go). My Mum took my place at the Diabetes education classes with my husband and a few days later, we were all home. Exhausted, and terrified, but home. And so began some of the most challenging days of our lives, but also some of the most laughter-filled. Diabetes is this weird paradox of frustrating and uplifting; of fighting and acceptance. The good days are harder earned, but I hold them so much more closely now.
The New Normal
So where are we now? We’re getting there. Nowadays, Type 1 Diabetes means nearly 180 extra decisions each day, waking up throughout the night to bring sugars up or down, and honestly doing a pretty average-at-best job of being our little guy’s pancreas. Those things work hard, man. T1D looks like candy at 3am, being able to look at a muffin and guess the number of carbs hanging out in there, and dreading every pump change because in our house, those look like tears and begging and bribery.
But it also means bravery, and strength. Patience and grace and kindness from loved ones and strangers. Gratitude that we can afford insulin, for CHOP, for teachers who take the time to read pages of research and information on how this boy’s little body works, and for the school nurse when she has to call five times in one morning. For my husband as he drags himself out of bed for the sixth time in the night and still dances in the kitchen with the kids in the morning, and for our boy as he helps decide what we’ll draw on his pod that day to make the whole thing just a little more happy and a little less scary.
T1D is changing. Research is moving fast, and researchers are working so hard to find a cure, and before that, technology to help make the days easier. When we first left the hospital, JDRF sent us a bag with a teddy and pretend supplies and story books to help our son feel less overwhelmed, and it made a world of difference to him. They pioneer research and advocacy, and support families just like ours as they try and navigate a world that’s pretty different to the one we pictured.
Today, I am grateful. For everyone’s kindness over the last year and a half, and for our kid who still, somehow, thinks diabetes is only something you get if you’re really, really lucky. It’s been a long couple of years, but I think we might finally be doing better than just okay.