I didn’t know much about the disease other than once having a cat with diabetes that I had to shoot up with insulin twice a day. And I knew that sugar wasn’t a diabetic’s best friend so while we waited to get authorized to go to the E.R. I said to Arden, “Let’s go get the biggest sugar-coated donut we can find in the cafeteria,” thinking this would be the last bit of sugar she ever ate. And while I watched her eating that donut, blissfully unaware of her diagnosis, my heart sank further and further with each bite she took.
She was soon checked into the E.R. where they plugged her veins with catheters and drips and attached her to all kinds of machines. A never-ending flux of doctors and nurses would come in and out and talk to me like I knew what was going on. Once “stable” they moved her into the hospital for the next twenty-four hours where they would stick her with needles every few hours and prick her fingers more often than that. Jen and I spent eight straight hours talking to endocrinologists and dieticians and diabetes instructors. Gone were the days of the regimented two-needle day; now she would have to have one kind of insulin at night and be injected with another kind before every meal or snack. We’re talking 5-8 shots a day. The “good news” was that she could eat basically whatever she wanted, if we gave her the right amount insulin. But that meant counting carbs, weighing food and pricking her fingers before and after meals. It meant rotating injection sites and finger prick locations. It meant watching out for dangerous low blood sugars and checking her numbers at midnight and 3:00 AM. And what about school? It was starting in two weeks and there was only a nurse on premises one day a week. Who would shoot her up? Who would take care of her if she went low and passed out? The information came fast and furious and I prayed that just a tenth of it would stick. And then suddenly we were sent home. That was it. They needed the bed. It was like the day after Arden was born. Same hospital. Same feeling of loading her into the car and thinking, “Now what?” But in this case there was no joy and wonderment. There was only the fear that if we fuck up, she could die.
But I have to hand it to Arden; she was a real trooper at the hospital. She didn’t cry once. Not from the shots, not from the finger pricks and not from the knowledge that her junk food junkie days were over. If anything she was in her element having dozens of people dote all over her. They all thought she was a riot as she made wacky Vine videos from her hospital bed and taught the night nurse how to play Minecraft. But then reality set in when we got home.
On the outside Arden was doing great. She was taking her shots without incident and saying witty things like, “Shoot me up, Mama, I’m hungry.” But internally she wasn’t processing things as well. She was turning her fear of germs into full-blown OCD. Freaking out if someone wore shoes in the house and washing her hands until they bled. And then there was the hair. It continued to fall out. Now by the fistful with each bath or shower. The doctors all said it was unrelated to the diabetes. So what was it? Our dermatologist said it was probably nothing, but if we wanted to subject Arden to a painful scalp biopsy we could determine what it wasn’t. But we couldn’t put her through that. Not after all she’d already been through. So we just watched the hair continue to fall out.
Jen’s a tough woman. She’s got a mouth like a sailor and will whip your ass in drinking and darts. She doesn’t cry often. But with this tumultuous summer and now seeing Arden’s scalp poking through her thinning curls she was becoming undone. She was crying all the time. Even though I wanted to cry at times too, I couldn’t because one of us needed to be strong at all times. One of us needed to stay an optimist for the other, even if we didn’t believe what we were saying. But it wasn’t working. Jen was a constant mess and I started to understand why couples get divorced when they lose a child. It’s not because they don’t love each other anymore, it’s because they can’t stand the pain the other one carries. It’s a constant reminder of your struggles and suffering. But that was just a flickering understanding. I knew as couple we were stronger than that. I knew we would survive, and mercifully Arden’s hair loss started to lessen and we finally learned that sometimes when there’s a shock to the system your hair stops growing and when new follicles emerge they push the old ones out. So it meant Arden’s hair was actually coming back. This was a symbolic turning point for us. It meant hopefully things would be getting better soon.
It’s now been five months since Alex was diagnosed with her cold allergy and four months since Arden was diagnosed with diabetes and I have to say that while it’s been tough and there’s been plenty of bumps in the road, we’ve finally found a new new normal for our lives. We’re now used to counting carbs, and finger pricks and insulin shots are just part of our daily routine. Where we once had a diaper bag, now we have a knapsack filled with alcohol swabs, syringes, Epipens and warm clothes for Alex. And I’m happy to report that Arden’s OCD is getting better and she’s taught herself how to self-inject in order to avoid the “stupid nurses” at school. I prefer the term “uneducated in the ways of diabetes,” but stupid will suffice. I still have to get up at 3:00AM to check her blood every night and will probably have to do that until she heads off to college, but just like having a newborn, you just get used to being tired. As for Alex, we decided, much to the chagrin of our allergist, that we weren’t going to put her on any medications at all. None. We were going to wait until the weather got colder and see if we really needed it. Well it’s starting to get cold here in Los Angeles and thankfully there have been no real breakouts since the summer. Not from the bath. Not from the sweat on her brow. And she’s been fine in air-conditioned environments. We’re hoping that as we’ve gotten further away from those initial incidents that her system has had time to recuperate and maybe her allergy isn’t as bad as originally diagnosed, or maybe even that it was an acute occurrence. Perhaps one day soon she’ll even eat ice cream again. But even if she can, we’ll always keep that Epipen handy. As for Arden, you can’t outgrow Type 1 Diabetes. It’s there for life, but Arden has one of the best endocrinology teams in the country and she’s hoping to get on a pump soon, to free her up even more. She’s about to audition for the school play and her grades are still good. And instead of ignoring her disease she’s out there fighting for a cure. She did an hour interview for Radio Disney to spread awareness and she’s raised over $5000 for the JDRF (Juvenile Diabetes Research Foundation) with their Walk to Cure Diabetes last month. Alex is also thriving in her first year of elementary school. Amazing us with what comes out of her mouth each day. And Jen’s back to that tough chick I know and love, and believe it or not we’re about to celebrate twenty years together. And I couldn’t be happier about that. So things are all right. We’re finding our new normal. And we even had another date night last week. Our first once since Arden’s diagnosis. And it was a good one. Sandra Bullock was great in Gravity.
Arden doing her interview on Radio Disney.
First Day of School wearing their Medic Alert Bracelets.
Alex and Arden at the Walk to Cure Diabetes
A note I got from Arden yesterday that not only tells me her blood sugar and what she wants for breakfast, but also that she's doing all right. Better than all right.
Those are the bravest, most kick-ass little girls! Their spirits are high, and they are strong---you all are. You have a wonderful family.
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