Thursday, July 29th, was my sister’s birthday. Those of you who know me well know that I lost my sister to a car accident last August. This would have been her 27th birthday.

Lindsey was famously unlucky and it was a great family joke. She always swore that if anything could go wrong – or person get the shaft – that person would be her. Example: I recently shared a story of the last time I ever saw her. We were at our cousin’s outdoor wedding and it was ridiculously hot that day.  Thankfully, the area was largely shaded by enormous trees and when it was time for the ceremony to start we selected a nice shady row. Until we sat down and the sun suddenly burst through a gap in the trees to spotlight . . . my sister’s seat. She immediately turned to me and said, “OF COURSE I WOULD SIT IN THIS SEAT.” I can still see her quirked smile and hear her laughing. She had a great spirit.

Lindsey must be laughing now as it seems her legacy has remained or, I’m beginning to suspect, has been handed off to me. In the last 10 months, I’ve lost my only sister, had my husband diagnosed with celiac disease, and my youngest daughter diagnosed with Type 1 Diabetes. I was stung by a bee, which has happened before, but of course THIS TIME I would have a severe allergic reaction. And the list goes on. Oh, Lindsey. The irony is rich.

Thursday was a difficult day, as expected. Greg took the day off and we drove the girls out to my parents house a couple of hours away. We decided that instead of trying to just get through it, we wanted to forge ahead and try to celebrate her birth and life because we are all so very, very glad that we got to spend 26 years with her. I had a gorgeous bouquet made up in the style of her funeral arrangement: Bells of Ireland and purple Calla Lillies, her favorite. My dad brought white roses, a reminder of a beautiful gesture we received when she died.

Then we all went and chose balloons, some to keep at her memorial, and some to release, bearing our messages of love and devotion to Lindsey in that next place. There were gilded butterflies for her love of faerie and fantasy. There was green, for her favorite color, and blue for my mom’s signature color (“So she’ll know it’s from me,” she said). There was “Happy Birthday” and “Thinking of You”.  And there was mine, a golden star for the golden girl, upon which I wrote, “You Light Up My Life”.  Because she did and, I realize now, still does.

After we all wrote our messages to our girl, we gathered round her place and sang her Happy Birthday in cracking voices and we released those balloons into the sky and watched them float away. It was one of the most profound moments of my life.

Diabetes is crap but, as I often say, it’s an excellent distraction.  We stood around in the sun for a while while the girls picked flowers and played in the grass but it was getting close to dinnertime and Ainsley’s terrible pet was growing restless.  We went back to my parents’ house for dinner.

Her pre-dinner BG looked good at 129. She was served rice and beans and didn’t even get her dinner dose until after she had eaten her whole meal. We were so pleased we gave her a 4gram popsicle. Then we got the girls in their pajamas, kissed my parents goodbye, and got in the very clean, very brand new Rutabaga to drive the 2 hours home.

Ellory went straight to sleep but Ainsley was cranky and having a hard time falling asleep in her carseat. Understandable – she’s 2, it was bedtime, she hadn’t napped. She’ll  be fine once we hit the highway, I thought.  We hit the highway and instead of going to sleep she started projectile vomiting all over the back of the car. Vomit is unpleasant in any circumstance but in diabetes, it is dangerous and freaky. I was out of my seatbelt in a minute, screaming “Pull over! Something’s wrong! Something’s wrong!” Greg whipped into the next pullout, and we both exploded out of our seats, Greg ripping her from her carseat while I grabbed the water bottle and hosed her down so we could get a clean test. She was screaming, cars were flying by, vomit’s everywhere, but we just stood there and watched the meter countdown silently: 5…4…3…2… BG: 39.

39 is bad, very bad in a 2 year old, and definitely the worst number we have ever seen. Thanking Greg’s foresight (don’t ever tell him that), I leaped for the Pediasure he had put in my purse and let her chug the whole thing down. I checked her, and checked again, and again. She was coming up slow, but coming up. We sat, drained and terrorized, and told each other, “If she had fallen asleep instead, if she hadn’t thrown up, we wouldn’t have known for two hours. We wouldn’t have known until it was too late.”  We went over and over the dinner scenario. There was nothing there, nothing to help us understand how she could have fallen so far so fast.  We washed hands before the check. She ate all her food. She was dosed after eating. If anything, she should have been high.  All I can think is that at the moment in time when we got the 129, she was already falling fast, and a single stick doesn’t show that. Behold the beauty of the CGM.

A CGM would have shown me that she was dropping fast and, furthermore, would have alarmed when she crossed a BG threshold of my choosing. Had we somehow missed that, it would have alarmed again when she crossed the device’s safety threshold. We would have discovered it before she went into insulin shock.

By 11pm, she was up to 415 and we called it in. The on-call endocrinologist told us to leave her be (which killed me) and said, “You guys need some help, you don’t have the right tools to deal with this. She is too young and her doses too small and this isn’t working.”  Yeah. No kidding.

At midnight, I looked at the clock and called it a day. A no good, very bad day. As I closed my eyes, I watched Lindsey’s quirked brow and her smiling mouth. Of COURSE this would happen to us, she said, and I felt her arms around me.

We just returned from beautiful Lake Tahoe where we had our first D-vacation, and the firsts didn’t stop there. Lake Tahoe, of course, is at altitude; the area where we were was about 6200 feet. What a difference some feet makes.

Ainsley started running low the first evening we arrived.  The next day we battled it all day with extra snacks and extra checking, trying to keep things just right. I was actually pleased that she was running lower than usual and getting to eat more. That night I decided to check her earlier than my usual 10:30pm and she was at 64. I didn’t panic – I put some Pediasure in a sippy cup and came back to wake her and give it to her, something we do often when she’s lower than desirable at bedtime. Except I couldn’t wake her.  When touching her and calling her name had no effect, I started rubbing her chest and then pounding it while yelling, “AINSLEY WAKE UP!”  We turned on all the lights. Her head was just lolling on her neck.  We were at full panic mode and ready to break out the glucagon pen when she started crying, which was an improvement, but wouldn’t open her mouth for the drink.  Some piece of myself floated outside my body and looked down on the scene: me, trying to force my fingers into my 2 year old daughter’s mouth and pry her jaws open as she cries with her eyes rolling back in her head. That one is definitely going into the record books.

I was starting to think we’d have to use the pen anyway when we finally got her to drink up.  We gave her 4oz, which at home would have put her well over 200. She went up to 83. Another 4 oz only brought her over 100.  The next day, after consulting with a CDE, we took her off all scheduled insulin and just . . . waited. And tested. A lot.

Then commenced two days of getting our old daughter back. She ate what she wanted when she wanted. She ate entire bowls of fruit and even a gelato without issue. She positively lit up at mealtimes when I told her SURE she could have milk with that and NO PROBLEM she could  have extra french fries. She was energetic and cheery and always felt good. The difference was noticeable.  It was delightful. It was heartbreaking.

She began rising again before we even left. Since then we’ve been struggling to get back onto an insulin routine that keeps her pretty stable and it’s not working out well. There’s definitely some honeymooning going on, but not enough.  After that brief, bittersweet respite . . . no, not nearly enough.