There are folks in the diabetes world who tell me I’m Pollyanna; who say they don’t understand how I can be positive and upbeat as my daughter delves into her 16th year of living with Type 1 diabetes. When they say it, sometimes I feel like William Miller yelling at Penny Lane in Almost Famous: “I’m dark! I’m dark and mysterious and I’m pissed off!”
But for the most part, like William, I am not. That’s not to say I accept it: anyone who knows me knows I do all I possibly can to work toward a cure and I wish every day we’d not be initiated into this life. But here we are. And often, I talk about a simple truth: the best thing I could do as a mother all these years was (and still is) to show my daughter how to live well despite diabetes. How can I mope around and feel sad about life if I expect my daughter to rise up and live fully despite it all? I have no right. I have no place doing that. So instead, I choose to buck up, celebrate and thrive.
To that, there are also those who think: well, Lauren must not “have it as bad.” Yep, even people who know Type 1 have said that to me. So here’s some news on that one: there is not such thing has “having” Type 1 Diabetes “better” or “worse” than another person. T1D is relentless, unforgiving, challenging, frightening, unpredictable, and nasty. But just because diabetes is all that never meant my daughter and I had to be all that. I’ve always believed in facing what is going on, getting some good solid information, doing our best and then moving on to the next thing.
No whining in diabetesland. Okay, well maybe a little but not a lot.
Which is why what happened on Thanksgiving morning was the ultimate challenge to me and to Lauren. I’m sharing this after pondering that for a few days. In some ways, I want to keep this to myself. The experience was at once frightening and intimate; empowering and humbling. It was absolutely the most terrifying thing to happen since Lauren’s diagnosis (still cannot decide if it ties or beats the DKA at 13).
It was an hour – and then a day – of quiet despair between Lauren, me and the rest of our family. But as the days have stretched between the event and the rest of life, I’ve come back to my simple creed: it ain’t gonna beat us. And that’s why I’ve decided to share.
Not for you to feel bad. Not to scare you. Not to look for pity. Rather, to show that sh** happens. And that every day, this challenges us. But that now, even in this harsh new experience, in our house, we are still holding tight to the concept of living despite diabetes.
So here’s the story:
The night before Thanksgiving is the night for college kids, young adults and even old folks like my husband and me to flock to the bars and restaurants in our downtown area. This year was Lauren’s first one being 21 so she was extra excited. Her boyfriend was here (he was heading out early the next morning to go to his grandmas for the holiday). We all went for dinner at a spot and then my husband and I headed off to the older people’s bar, leaving the kids to have fun.
Lauren and Nick rolled in around midnight – having called us to pick them up (we don’t drink and drive here). Lauren had enjoyed a few beers; nothing too crazy. She and Nick went off, checked her blood sugar (267) and decided that was the perfect number for her to fall asleep on. (Sidebar. Yeah, my daughter drinks. And has diabetes. Her doctors know. And it’s fine. Get over it. And learn about it. Now, back to our regularly scheduled blog.)
Some time in the middle of the night, she woke up feeling crazy thirsty. She went down to the kitchen, chugged down a couple of glasses of water and decided she was thirsty because her blood sugar was extremely high. Falling back on old habits, she rage bolused, not checking her blood sugar first. (for those of you not in the D world, “rage bolus” means you give yourself some insulin to bring down a high blood sugar without really estimating the correct dose. Don’t judge. Most do it sometimes. And spell check: please stop changing bolused to bloused. It’s confusing). And then she went back to sleep.
Fast forward to Thanksgiving morning. Nick (the boyfriend who was tucked away in the guest room all night) was getting ready to leave. I was in my office writing. Nick let Lauren sleep and then went into her room to wake her up and say good-bye.
Only he could not wake her up. He shook her a few times, and then came in my office and said, “I think something is wrong with Lauren. I cannot wake her up. And she’s soaked in sweat; like she took a shower or something.”
I ran in and found her—I would not call it unconscious, but I would call it unresponsive. To say she was bathed in persperation is an understatement. She was drenched. On my command (sorry about the bossiness, Nick!) , Nick ran down to the kitchen and got some carbs (Lauren had just told me the day before she was out of glucose tabs. And being an empty nester, I had no juice in my house for her. Bad mom.) I had him grab the glucagon kit as well. I pricked her finger (which scared the life out of me; she’d not let me near her with a lancet since she was six years old. Clearly she was not checked into this world if she let me near her with a needle. ha).
35. Okay. It’s just a number. I held crackers up to her lips and parted them with the cracker. She chewed.
That’s good, I thought. That’s good. I kept sticking crackers into her mouth and she kept chewing. I really wanted her to open her eyes – and I yelled at her to open them. She would briefly open them, staring blankly, and then fade off. I told Nick to pick her up and prop her on the pillows, thinking if she sat up she’d awaken. He did; she did not. She was like a rag doll. But still chewing.
Fifteen minutes. I checked again.
I looked at the glucagon kit and wondered. Was it time? No: I thought. She can still chew. (I’m sorry but I don’t subscribe to the ‘use glucagon in a flash’ theory; that stuff is harsh and while it works, makes you feel lousy after. I wanted to avoid it if I could). Then I remembered I had some sample Quick Sticks glucose which are like pixie sticks.. I had Nick get some iced tea and mix them into it. I held that to her lips and got some in there, some dripping down her face. But I knew she was ingesting it. This is good, I thought. This is good.
Fifteen more minutes. I’d kept giving her carbs, her chewing and drinking but still not responding to voice commands. Go ahead — watch a clock for that time and pretend you don’t know if your child is okay. Tick, tick, tick. I checked again.
41. Okay, she’s going up. Still, I have the glucagon open and in front of me, and I’m pondering. Because 41 is still really, really low. But she’s still chewing. And drinking.
I guide her hands to the cup and she holds it, eyes opening for a moment, but she has no idea what to do with it. So I go to take it back, touching just the cup.
“YOU’RE HURTING ME!” she screams. And I laugh. Ahhh … there she is. She drinks more and in a few more minutes, feeling like I can see the light at the end of the tunnel, I check again.
She starts babbling. “Louie football Sam Henderson tickets.” It makes no sense, but it’s her voice. And her eyes are opening half the time now. I can tell she knows who I am, and she’s trying to pull thoughts out of her brain. This is very good.
Finally, she comes around, blood sugar clocking in at a reasonable place. It’s been an hour of pure hell to get there.
She asks Nick to bring her Louie the Supercat to cuddle. She reaches up and feels her wet hair. I tell her what happened.
And she remembers none of it.
So that was it. Our first crazy a$$ lowlowlowlow. The first time in over 15 years she could not help herself. My first welcome into that world of “a dangerous, dangerous hypoglycemia.”
We went off to Thanksgiving at my older daughter’s house and it was lovely. Lauren was exhausted (and of course fighting rebound highs like a lovely 595), and was sporting a massive migraine-like headache.
In time, we talked about it. I’d seen the insulin pen out on the counter, and Lauren remembered the thirst and the silly move of bolusing when probably she did not need to. She had no memory of the entire low, and I filled her in on it all.
In more time, we joked about it too, walking around the house saying things like ‘Shelby! Drink the juice!!” and “Well I’m glad she made it because that would have been way too much turkey on Thanksgiving with one less person.” And “Jeesh Lauren: that would have been really selfish to ruin your sister’s first thanksgiving dinner like that!” We joke a lot around here. It works for us.
We also, on Lauren’s suggestion, wrote a note to her endo to fill him in and find out if we handled it right, and he wrote back the smartest thing: mistakes happen; that’s how we learn. You know the reason, and you know what to do next time. It happens to most, and it’s probably not going to happen again. Live your life. And this he wrote as well to Lauren: “I’m proud of you.”
Well, I am proud of us. Because right this moment, Lauren is in a car heading back to her single room in her apartment 500 miles away from me. Yes, she has more glucose tabs, juice boxes and honey (did you know even if a person cannot chew, you can put honey or syrup into their cheeks and even if they don’t swallow it, it will help elevate blood sugar? Yesssss! And to think – I had honey in the house. Live and learn). She has an extra glucagon and a new plan for when she might have a few drinks, as well as an adapted plan for when she feels low in the middle of the night.
Am I scared? Well, yes. But her college and Washington DC is where her life is now; where she’s joyful and complete. I have no right to let my fear stop her from heading back, even with this new experience fresh on my brain.
I’m proud of me. I was calm. I followed what I had learned. I had back up plans (glucagon. 911. Both options were there). I rechecked and reassessed and hung in there until all was well.
And when it was over, I did not freak out and tell her she’s not safe alone. I did not insist she go back on her CGM – the one she really dislikes (that I secretly hope she will one day try again. Or a new one. Try a new one). I did not label her as someone with hypoglycemic unawareness; one unfelt low does not a lifetime of unfelt lows make (and thanks to her endo for backing that up!)
Most of all, I did not let my own fears supersede hers. I let her lead, and lead she did: her plan, her stocking up on what she needs, her discussing what she learned from it and how she’ll adapt. I know she’s scared too – the experience was beyond terrifying.
But just how she has since October 28, 1997 when diabetes first scared her, my daughter is forging on despite diabetes. It is relentless, but it will not stop her. It is evil but it will not get the best of her. It is crazy, but it will not drive her insane.
Nor will it me. We faced it at its worst and we won. Once again, we buck up, celebrate and thrive.
This we will keep on doing. Because every time we do, Lauren wins.