What I Wish We’d Known

This week has been a busy one for us. Our big kid celebrated his two year “Diaversary”, and, because it never rains but it pours (and this has never been truer for us than in August of 2018), our little guy turned two this week too. Our house has been filled with balloons and giggles, the mess is off the charts, and we’ve eaten far more cake than anyone really should, but it’s been really lovely. Beyond Type 1 published the story of my diagnosis this week too, so there’s been a lot going on around here lately.

Still, in the quiet moments, I’ve found myself looking back over the last few years – the bright spots and hard bits alike. For the article that was published, I took some time to reflect on the differences between our son’s diagnosis and my own, and how fortunate I’ve been in knowing the ropes this time round. And that got me thinking (a girl’s gotta do something with all these late night wake ups, friends) about all the things I wish we’d known the first time round – things that I wish someone had told us in the very early days, when it was all so raw and new. These are some things I wish we’d known:

1. No-one caused this. I don’t think it’s just me that experiences Mum guilt to the max. Like, all the time. It’s so easy to second guess every step of parenting. When your child is suddenly diagnosed with a chronic illness, it’s impossible not to think about all the things you didn’t do, or all the things that you did do, but that you didn’t do fast enough. I talk a bit more about this here. When you’re first at the hospital, everyone is so busy trying to stabilize blood sugars and figure out dosing that there isn’t much time for conversation outside of the practicalities. I wish that someone had sat us down, looked us dead in the eyes and told us that this whole situation wasn’t our fault. I wish they’d reassured us that we had done everything we could with the information we had, that we didn’t cause it, and that it couldn’t be helped.

2. Your child is still the same person. I’ve written before about how I struggle sometimes with seeing our son as strong and capable, when I still remember so clearly how fragile and small he was in that hospital bed. What I haven’t written about before is how, in the early days, I was scared to cuddle him for fear of him breaking. I was scared to do normal things like bathing or feeding him, because I was absolutely paralyzed by fear. I buried myself in other tasks to avoid having to face our new reality, because in those early days it felt like in this awful way, everything had changed. I realized that I could no longer fix everything with a kiss on the head or squeezy hug, and scarier still, that from now on there would be challenges he would unavoidably face that I alone could not make better. What I realize now is that he was still my boy – just as much as he was before the diagnosis – it was just the fear and the grief talking. I wish someone had sat me down and reminded me that he was still him. Funny, giggly, stubborn. Kind to his core. I wish someone had told me that literally the only thing that had changed about my boy was his pancreas. I didn’t need to worry about how to handle him, because all that could stay the same. Our kid is just the same kid he always was. He’s just a little bit braver now.

3. You will never be alone in this. It doesn’t matter where you live or what this journey looks like for you: you will never have to face it alone if you don’t want to. From online forums and instagram to local groups and your endocrinology team, there are people there to support you as you go. Non-profits like Beyond Type 1 have awesome programs like the Snail Mail Club (for the T1D pen pal everyone needs) and Safe Sittings (a place to search for sitters who have experience with T1D – hooray!). Diabetes UK even has a helpline you can call to talk things through. There are more people going through this than you realize, and there are always people to help. Talking of which:

4. It’s okay to ask for help. Some days will be good, and others will be bad. Not like a bit bad, but atrocious. We had a day recently where our boy was out of range for almost the entire day, ricocheting between “high” and “low” with such frequency that we just couldn’t keep up. This just happens sometimes. Without fail, these days are also the days our youngest develops an exciting new skill, like liberally sprinkling the curry powder we forgot to put away all over the entire downstairs of our house, or decorating both the table and the sofa with sharpies. Because, you know, toddlers.

These are the days I force myself to reach out for help. Whether that looks like a quick check in with the diabetes educator, messaging a fellow T1D parent for advice or commandeering a loved one to watch the kids while I take a much-needed nap, we all need a little help sometimes. You can’t fill everyone else’s bucket if yours is empty, and if we’re being honest, T1D is basically a whopping big, meteor-sized hole in your bucket. The trick is in finding a way to patch up the hole, and top up the water, even if it just buys you a bit of time to breathe.

5. Try not to let blood sugar readings define your self worth. This is one I really struggle with. Usually, after a period of iffy readings, sleepless nights or a higher-than-we’d-hoped-for A1C result, I throw myself into getting the little guy’s numbers back in line. Most recently, that has looked like us raising the alarm threshold so that we get alerts before he goes too low (so our low alarm now goes off at 85 mg/dL rather than 70 mg/dL) with a view to improving time-in-range, and lower-carb dinners, because my goodness the nights are still killing us. These changes in themselves are positive, and they have helped us. The trouble is, the better the numbers get (usually a short-lived thing), the more I tend to use them as a marker of a good day. What I might in the past have considered to be a decent amount of time in range suddenly doesn’t quite seem enough, and I get frustrated with myself for not catching the lows sooner, or calculating the doses better. The truth is, T1D is a totally unpredictable beast. Perhaps the stars didn’t quite align last night, or a cow mooed too loudly on the other side fo the planet and your pancreas took offense. There is so often no rhyme or reason when it comes to T1D, and it’s so important to remember that. You’re doing the best you can with what you have, and that’s all you can do.

6. You’ll be an expert in no time at all. When our pediatrician did, in all fairness, actually say this to us early on, I laughed. The sort of hollow laugh you do when you believe 0% of what someone is saying but don’t want to tell them how wrong they are. “Give it two weeks,” he said, “and you’ll know more about T1D than I do.” “Not super likely,” I thought to myself, as I eyed his Stanford Medical School diploma on the wall. But he wasn’t totally wrong. These days I still don’t know even a quarter of what there is to know about T1D, and I know this journey will forever be one big learning curve, but he was right about how quickly you pick things up. How quickly you become more confident, and how quickly things become more normal. Nowadays we rattle off T1D terms like we’ve always known them, and just have to look at meal to make a half decent estimation of the carbs hanging out in there. Injections, dosing and site changes don’t stay scary forever. They truly do become your new normal, and eventually it will all feel okay.

And so there we are: what I wish we’d known. If anyone reading this has a child who has just been diagnosed, please remember to be kind to yourself. The early days are scary and exhausting, but things do get easier. Your little one is so lucky to have you in their corner, showing up every single day to tackle this by their side. You’ve just got to keep swimming, but you’re not alone.