Steve suggested that I write Lia’s birthday entry for Without Envy. I am nervous, as I don’t usually share my writings with anyone. But, as Steve has told me, sharing your writing is what helps you heal. So here is my earnest attempt.
The other day, Lia was running high so I walked from the High School where I teach and went to the building where the 4th grade is housed to make sure she didn’t need to change her infusion set. I had the bottle of Humalog in my pocket to try to bring it to room temperature. Her blood sugar was within normal range, so I returned to my school. In the office, a friend of mine asked me if her glucose levels would stable out after being on insulin for a while. I told her that it would not, that this would be a lifetime struggle for her and that the insulin I was carrying was to keep her alive. As I said these words, I quickly had to leave the room to compose myself. Although I know very well what the insulin does, it was sobering to say those words aloud to someone else.
Since Lia’s diagnosis, I have not spent a lot of time thinking about how I feel about diabetes. With all the carb counting, figuring of boluses, night time blood tests, and everything else that comes in the day of a parent of a child with diabetes, I don’t allow myself the time to think about it. I’ve done a lot of reading, mostly about how to manage diabetes, but also some about the long term effects of the disease. I prefer not to think about the latter because if I do, I can’t function. I don’t want to read about what can happen if her kidneys fail, or her eyesight worsens, or anything else that might result in complications from diabetes. What I focus on, is how we get her through another day as safely as we can.
I am not angry about the diabetes. We will probably never know what caused it, though I am confused, since of the three kids, Lia is the one who was breastfed the longest, had the most natural foods given to her from the first days, and was home—unexposed to whatever her two siblings were exposed to in the daycares of their early days. I try to approach the whys in the way that I approach everything else: it doesn’t really matter why—it just is—so learn to deal with it the best you can. When I get angry, it is at myself for making an error with a bolus or some other asinine thing, and it’s difficult for me to let it go. But mostly, I feel tired: from all the things mentioned already, but really just tired of not knowing if I am managing things correctly—ever. Despite all our efforts, we never really know whether we’re doing things right, and more often than not, it is Lia who gives us the correct advice. As a parent, that is frustrating to me.
Lia’s upcoming birthday is bittersweet for me. I should not be feeling sad for the marking of another year in my little girl’s life, but this will be her first birthday with diabetes. There is a part of me that wants to give her everything she wants—no matter what it is. Mostly, I wish so much that she didn’t have diabetes, and of course I can’t deliver.
As I prepared to write this entry, I reread a journal that I kept when Lia was a baby. It is a sporadic account of her early days until February 2004 when she was 2 years and 5 months old. I wish now that I had kept better records, but time is a precious commodity and I am sure I squandered it doing things like mopping my floors or doing the laundry. Krista and I got a good laugh reading about when Lia dumped a roll of toilet paper into the commode and then proceeded to give herself a “spa” treatment. Or how when she first began drawing, she would make little swirls with her crayon and then look at it and exclaim, “Whoa!” The recurring theme in those entries is that even as a baby she was strong and independent and that she was, and still is, our comic relief at the house.
Last year, Steve planned her a dinosaur dig party. He built a pit that looked like a real archeological dig site —complete with “fossilized” bones. I enlisted one of my students (who is now at Johnson Wales Culinary Arts Institute) to make her a dinosaur cake. She loved it all and was so very happy that day.
This year, she wanted a sleep over with her friends, so she wrote out the invitations on ruled notebook paper (I had given her some very nice card stock, which she politely refused) and gave them to the little girls at school. On the morning of her party, I took her to get her ears pierced—something she has wanted to do but has been afraid to go through with. Our dear friend, Jessie, artist extraordinaire, made Lia the greatest looking Harry Potter cake we’ve ever seen. Her excitement was a beautiful thing and, lucky for me, Steve captured it in a video so that I can relive that moment over and over.
What I want to do is to make this birthday as memorable as possible. She’s been counting the days to her birthday for the last six weeks, and while I am not certain that what we’ve gotten for her is exactly what she wants, I know that our little girl will react in the way one might react to winning the lottery—as if she couldn’t imagine anything better. That’s just Lia.
Happy Birthday, Lia.