Last year, Shiloh's dad, her mom, her stepdad, and I spent Ash Wednesday with her at Childrens Hospital LA, because in the 6 weeks prior, this little one had become thirsty beyond words and had gotten too skinny too fast. She failed the easiest test in the world: a prick of blood from her finger. We found out that her beta cells had crapped out on their only job: to make insulin.
Ash Wednesday was day 1. Shy was paler than white as we learned how to administer the insulin shots that she'd need 6-10 times daily. A dietitian who looked like she needed a dietitian showed us with dirty rubber food toys how to measure carbs for a kid who'd never heard of the Atkins diet. A kind nurse who showed us her pregnant belly and told us that she'd been diagnosed with Type 1 Diabetes when she was 13 drew pictures on a white board of beta cells and sugar molecules and charts with arrows that pointed to optimal blood glucose levels.
Only later, I realized why many of the hospital staff had smudges on their foreheads. I don't know much about the holiday except that it comes after a time of carnival, filled with carbohydrates that we, as of that day, needed to count carefully and measure in ratios of 1:14, 1:17, 1:15 against the insulin that, we were shown as Shy folded over the waistband of her pants, would be injected into whatever fat we could find on her skinny little body.
That night Darby and I went home and drank a lot of wine because Shy went to her mom's house for the first night with T1D. The next day, she didn't go to school, or the day after, or many of the days -- 40%, perhaps? -- of the rest of the school year. She stayed with her mom for those first few nights. Darby spent the days over at his ex's house, the first time he'd had to spend so much time with her since 2006 when they realized that they didn't like spending so much time together. I, the stepmother, didn't go. Instead I went crazy at home wanting to see my sick kid who is another mother's kid.
When Shy came back to our home, the every-three-hour blood sugar tests started. Darby took midnight, I took 3 a.m. Eventually Shy learned to sleep through them as we swabbed her finger with alcohol and pressed the tiny needle till a drop of blood squeezed out. In those first few weeks, she was starved -- literally. Her body had been starving without insulin to process the energy-giving sugars from food. She watched the clock and asked for a snack or meal every two hours, plates full of food. We shot her with needles and her spine and hipbones softened, but Little Miss Sunshine now had a body that no longer worked in concert with her mind. She fell into months of depression, angry at the new normal, questioning mortality, wishing she had not been born.
Her older sister felt scared, at first, and then angry at how we all stood in the kitchen with calculators, adding up a cup of cereal and five strawberries and a quarter cup of soy milk, and how many carbs do you think this banana has, anyway? We pulled the insulin through the syringe while Rose had a tantrum because she was trying to tell us about something that happened at school, and Shy had a tantrum because she was sick of always getting shots, especially the ones at night that stung so bad we couldn't understand. We set the timer on our phones and Shy listened to her stomach grumble and watched Roo eat whatever she found in the cabinet, as she waited 15 minutes before eating the cereal and strawberries. By then she was hungrier than she thought she'd be, or not hungry enough to finish, but she'd already received the insulin and so had to eat exactly what was on her plate.
Shots and finger pricks and tantrums and carb counts, Easter and her 11th birthday and then September came and the doctor called to say that on Rosh Hashanah we should all come to Childrens Hospital to learn how to use the insulin pump. On the Jewish new year, a nurse taught us how to insert and change the catheter every 3 days that would replace the syringe shots. The pump was hot pink, chosen by Shy for its color, which, we realized later, matched her school backpack and Luna Lovegood Halloween costume.
We wanted to love the pump, but the insulin-carb ratios were wrong, and we didn't know that when Es fell into another depression, barely noticeable because she'd not really come out of the first one, it was due to her blood sugars riding too low. Though she tried to smile, she sat on the couch for most of our wedding celebration in September, didn't have cake, couldn't enjoy the company of the other kids. A few weeks later, the doctor adjusted the ratios and we saw the light come back to her eyes, the roses return to her cheeks.
In her latest photos, you can see her new medical alert bracelet -- she went through three or so, but they all broke. The pump is clipped to the top of her pants. I'm now looking at a photo from a month after the wedding, 5 or 6 weeks after she got the pump, and one of the first days of smiling, which she does now frequently. Next week, instead of Childrens Hospital, we'll take her to Disneyland. She wants to celebrate a year since her diagnosis, which might sound strange to someone who hasn't witnessed her journey firsthand, but it's not strange to me. She should celebrate. She should be proud. These words don't really capture what Shy has been through, but though there's currently no cure for T1D, she has gotten through this grueling first year, and is healthy and thriving.