Our day of diagnosis started as many school days do. Someone had a stomachache and a sore throat. I called out of work with the sinking sense that one of these days I will be told not to bother coming back. I shuttled the remaining students to childcare and then returned home to a child that seemed to be rebounding. Was I just made a fool of? Was she really sick. Still the contrary "I'm so hungry!" followed by "I feel like I'm gonna be sick!" continued. Being flu season, the pediatrician's office was not able to see her for several days. And so, off to the walk-in clinic we went.
I ran through her symptoms and the fact that it mirrored her diagnosis of strep throat in the fall. I explained that she was constantly thirsty lately and that no car trip was complete without a panicked search for a bathroom. Dry mouth? Yes. Dry skin? Yes. Two labs later, we were in the car on our way to the nearest medical center at top speed. We were admitted to the children's floor and several hours later moved to ICU. She was monitored on the hour for neurological symptoms, finger sticks for blood glucose, and shots of insulin, in between runs of insulin by drip. I, who am deathly afraid of needles, had to learn to give my sweet girl injections four times a day minimally. Trained by a doctor who reminded me of Mick Jagger and wore purple cat-eye glasses bedazzled with rhinestones and swore not to pull any punches.
And then, not unlike when you have a newborn and the nurse takes you to the curb and waves you off, we were released. Us. Ordinary, non-medical oriented people, were now going to take on this highly prescriptive and detailed medical program. Surely there must be someone more qualified to do this? And the 2 a.m. finger sticks. Which really means lying awake from one on in fear of sleeping through the alarm, and then lying awake from two to four pondering the what-ifs and all the ways I could possibly screw this up. When the alarm goes off at five, it's barely possible to stand upright, but the next shift of meal prep, carb counting, insulin calculation, medication dosing, and vigil-keeping must begin. And the record keeping and documentation at this early stage is staggering.
Just when we started to feel we had two feet tiredly underneath us, the game changed. Sister Middle was set to return to school. While we are in the same building, this is a blessing and a curse. Now, for hours on end, her care is entrusted to others who are diligently doing everything right, but my mind is constantly half-tuned to the possible ringtone that she needs my care. That things are not status quo and that she needs to be picked up right away. When we have a safety drill, my thoughts go to how long will it last and will she be able to get her life-sustaining medication?
And then, as life will have it, days pass and we are lulled into a sense of security. I start to feel that, though tired, we know what we are doing and we've got a groove going that is keeping everything managed. And then, that naughty pancreas which took a previously unauthorized vacation, shows up for work and wants his job back. Suddenly we are injecting insulin and her pancreas is sporadically doing his job too. Now, her numbers on a chart look alpine steep in both directions. And out first uncontrolled low happens. At the dinner table. During her sister's birthday.
911 is called. Brilliantly talented personnel arrive. They are calm while I am internally screaming "For the love of God, FIX it. Make her well. Do it now!" They assess gently and without panic while my heart skips and my breathing hurts. My baby girl is grey and sweaty. She doesn't know her name for a minute. She doesn't remember the last ten. One of our rescue personnel, with first-hand knowledge of T1D arrives, off shift, knowing we need him. Knowing that we will trust his every word because he has walked this walk and knows the cost of a misstep. He is able to restore our sense that life is manageable, and along with his colleagues, leave us feeling that our world, while fragile, is not broken.
Friends have reached out to connect me with friends of theirs who have first hand experience with this lifestyle and the hurdles it presents. These families have in turn offered a listening ear, copies of their child's 504 plans for reference in crafting our own, a list of foods that got them through this initial culture shock. Most of all they have offered their hearts openly, to strangers, bound only by a shared diagnosis.
What I am not able to quite process is that this is not something we do for now and life will normalize again. Our once a year date night is indefinitely on hold. Sleeping through the night, gone for the foreseeable future. A mindless snack? Never again. Throwing something together at the end of the long day? Nope. Converting grams to ounces to cups to serving sizes to number of elephants in the enclosure has become the math word problem of my worst nightmares, but also the daily regime. Stashing emergency glucose rations at the houses of our neighborhood family, along our typical walks or neighborhood bike rides, for that one day she heads out without the kit along for the ride.
And then the anger. I was wholly unprepared for how many times I have had to walk away from someone who made a thoughtlessly insensitive comment or unknowingly confused Type 2 with Type 1; "..But she's so skinny?!") The ones who have offered the story of how their cousin's dog-walker's nephew cured it by eating a vegan diet. The ones who ask how I am coping with having to learn how to cook. (Excuse me? I have cooked for scratch for these babies since conception.) Have they eaten junk food? Sure. Every day? Nope. What has changed is simply knowing to the number how many grams of carbs are in every tablespoon of ingredient consumed and swapping out ingredients where I can to give her meals that are nutrient dense while below a certain target.
There are those who tell me they knew she was sick before I did because of X, Y or Z. Or those that confuse my body-state with how I care for my children. (For the record, my shape, in part, comes from constantly prioritizing them and never taking care of me.) To the ones who want me to know that they hope she can still one day have children, I want to remind you, she is eight. This is lightyears from where we are right now. To those who want me to know about foreshortened lifespans, it is not information I can take in right now. For the person who pointed out in a forum that my child developed T1D as a result of my sins, I can only say, you are not a Christian. God does not work this way. Blessings to the admin who removed you and your hateful, bilious, spewing. (And just in case He changes his mind and starts casting out conditions based on lifestyle, I hope that your combination of debilitating bed-wetting, neuropathy, and flux are worth every moment of the harm you have so freely handed out.)
And then...another school shooting. Not one more. No parent sends their child out the door thinking that they won't return, and I am not even going to pretend to know where the answer lies. Do we have to do something more than think and pray? Absolutely, unequivocally, yes. Do we need more guns in the equation? I'm not convinced. Is it an all or nothing solution, unlikely. Is it bigger than just gun rights, educational systems, building security? For sure. Do we need more mental health resources? Yes. My child was referred as a result of her diagnosis, which is now a month old, and will have her first appointment in three weeks. That's a long wait.
At the end of all of this, I am watching friends battle one another over gun control. I am seeing the ugly side of our country on display and meanwhile our children will go to school tomorrow with little more than a prayer that it won't happen to us. Not here. Not mine.
At the end of the day, I am staggering around in my shell, trying to still be a functional adult, trying to care for these children who have not become angelic Stepford children in the face of a lifelong diagnosis and all that it brings. I am trying to let my child still have a childhood and not be encased in bubble-wrap, because as a wise and much-loved friend noted; "She was made for more than that." I am trying to be gentle with those I meet, for we are all battling a demon and not all are visible.
In the meantime, please don't ask me to make decisions of consequence. Please don't expect me to be able to remember to breathe in and out all day every day. Please know that I will tell you I'm fine, because what other choice is there? And I'm a Vermonter, with Depression Era grandparent roots, and English stiff-upper lip in my blood. We don't do help unless you force it on us.
But right now I feel powerless and terribly afraid.
