The Burden

After T1D diagnosis many families’ lives are turned upside down. There may be a lot of worry, confusion, even trauma. We were lucky to avoid a medical emergency and thus had a “soft landing”, if you will, into T1D world. But just as all other families, we walked out of the hospital with a tremendous burden.

I remember one post-discharge moment very vividly. We were driving home back from the hospital and were a few blocks away from home. As we were driving down the street it struck me how surreal it felt. Here we were, coming back home as if we just went out to dinner or to visit friends. For a second I really wanted to pretend that it’s all it was. We just went somewhere and were coming back. But the reality, as surreal as it felt, was that we were coming home to a very different life. In a blink of an eye V went from perfectly healthy to having a chronic medical condition. Abruptly, we all went from a “normal’ life to life with T1D.

When we got home, first thing we did was go through the fridge and cupboards and inventory the food. Can V eat this now? How many carbs in a serving? How can we make this work?  Going through the kitchen actually provided some relief, as we realized that we could continue to make most of the meals we usually make, with some modifications. For the first time in a long time, if ever, we had to plan breakfast ahead.

We ate dinner at the hospital that night, so it was soon time to put kids to bed. Once V fell asleep, I went to her room to check on her. She was sleeping so peacefully, as if nothing ever happened. As a cruel juxtaposition, on her desk there was all kinds of T1D paraphernalia – meter, strips, needles, insulin, juice box. My baby girl has diabetes. Can’t hide it, can’t even pretend it’s not there. Was this really our reality now or was I watching someone else’s life? I walked back to our bedroom and lost it a little, for the first time since diagnosis. There was no time for feelings in the hospital. It was too busy with learning and practicing, doctors and nurses, procedures and tests. And there was support – we were not alone in caring for our daughter and in fact she was mostly taken care of by others while we watched and learned. But that evening, in the quiet of our home, away from the business of the hospital, the reality began to sink in for the first time. This was now ours. The multiple BG checks, the injections, carbs calculations and meal planning, constant monitoring and assessment of symptoms, management of highs and lows, checking for ketones, constant planning ahead. This was our daily burden now. And the losses became more real, too. We lost the ability to be spontaneous, we could no longer leave the house without diabetes supplies – not even to walk our dog around the block. My husband and I had just gotten back from a weekend trip away. This was over for us for a foreseeable future. Forget about trips, it would be a while before our kids could go to their grandparents for a sleepover again. Would we even be able to go out on a quick date? Who would take care of V if we were not around? “I know it’s all going to be OK, but I find all this very upsetting” were the words that came out of my mouth that night, as I was fighting back the tears.

T1D is relentless. Pretty quickly we were forced to accept the fact that there is no such thing is stability. Please do not ever ask a T1D parent if their child’s diabetes is under control. It’s a question that at best we don’t even know how to begin responding to, and at worst feel enraged about. No matter how well we attempt to control all the moving parts  – medication, diet, activity, stress, illness, and a million more – things still happen. BG can vary wildly, sometimes without any rhyme and reason. T1D management is a 24 hr a day, everyday job. You cannot take a break, you cannot take a vacation, you cannot forget about it. And even when you do everything right you can still lose. It does not play fair. It is not fair.

For now a great deal of this burden is on us, parents, as it should be. We often help V with her pump and CGM, count carbs, prick her fingers, plan ahead,  pack her things, check on her and give her reminders about her care. But she’s already taking on more than any 9-year-old should have. The other night she had a sleepover at her grandparents’ and needed to be woken up in the middle of the night to correct high BG, as her grandparents do not know how to operate the pump. If she is ever at a party or an event she needs to read labels, count the carbs and make a number of important decisions. We are always there for support, in person or by phone, but she has a lot of work cut out for her. She stepped up to the plate like a true champ and is able to do virtually everything independently when needed. It is not fair but it’s what she has to do to keep her life as “normal” as possible and do what other 9-year-olds take for granted – activities, playdates, sleepovers, not having a parent hovering over her shoulder at her friend’s Birthday party. In some ways she had to grow up too fast and demonstrate maturity and responsibility well beyond her age. For now, we help her carry this burden and take it off of her shoulders as much as possible. But every day she gets older it becomes less and less ours and more and more hers.  And unless there is a cure soon, the day when it becomes all hers is fast approaching.

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