Diaaaabeteeeeees. Not much fun to talk about, not much fun to play. Can’t really write a song about it (though it HAS been done – thanks Spicks and Specks for throwing that one on telly and giving me a good laugh one night), and definitely can’t run away. Although you can … please feel free to now if you feel so inclined, but I’m not in a position to unfortunately, and I do need to talk.
Most of the time I just get on with the day-to-day type 1 management for my daughter who’s just turned five, and try not to think too hard about her ten years from now (though I suspect she may hate me and be embarrassed by me quite frequently). I try not to think about what she’ll be like as a diabetic adult, mother, wife, career woman, champion hurdler, opera singer (hey – I’m not one to put her in a box). I just try and make each day as easy for her as I can.
I have been thinking ahead this week, though, as the permanence of her disease has really started to settle on Little L’s shoulders, and she’s struggled to deal with her grief in 5-year old terms. She was diagnosed eight months ago, and the novelty of being brave is wearing off. Now she’s tired of it all, and wants to stop and get off the ride. This ride saw her come home from an ordinary day at preschool on Tuesday, and have an ordinary sit on the couch, and a fairly drastic hypo (low) of 1.3 while watching telly. Normal to you and me is no lower than 4. It was only by chance that I checked her because she wanted a snack and had been as high as 22 mmol only two hours previously. Five more minutes and her not noticing the symptoms, and then what? The usual adrenalin kicked in and we fixed her up pronto with juice, and though she’d been pale and shaky and nauseous, she was starving hungry and bouncing around ten minutes later. Time for me to get shaky then. If only this were a rare occurrence I would be stronger, but she scares me like this at least a few times a month.
These physical ‘scarings’ are one thing. I’ve got them licked. I’m pretty good in a crisis. I’m all business and get shit done, and save the shaking for afterwards. The emotional stuff though? It’s REALLY scary. I don’t know how to do ME with this. I think I’m ok, then whammo – I’m freshly sad. How do I do the right thing by little L? How does a 5-year old process the ‘foreverness’ of an illness? She asked me last week how many more sleeps it would be until her diabetes went away. Then she asked this week if, after our ‘Walk to Cure diabetes’ fundraiser walk today, her diabetes would be gone.
I read an article in the paper last Sunday by Chrissie Swan that really resonated with me about boys, and how she’s glad she doesn’t have girls; these on-the ball, analytical, emotional little creatures who are so watchful, and need to be managed ‘just right’ so they grow up into strong, confident women with self-esteem and a good body image. I agree that girls are tricky.They seem to gain mature insights at such an early age, making observations that are wise beyond their years. Little L makes me go ‘WOAH’ at least twice a week when she talks about things like a woman being ‘silly pretty’.
With two of these magnificent, capricious little beings, I’m already worried that I’ll do or say something that will be absorbed into their spongey brains and retained later for reference, damaging them in some as-yet unimagined way. What if they catch me checking out my bum from behind? What if I put on makeup too often? Don’t iron anyone’s clothes? Let them go out without shoes on? Walk around naked after my shower and they’re demanding toast before I can get dressed?
The diabetes factor has quadrupled this fear. Studies showª rates of depression in teenagers with type 1 diabetes are far higher than in the general youth population, due to the chronicity of the disease, and are particularly elevated in females. Depression in type 1 teenagers also leads to poorer health management and more hospital admissions. Scary stuff. I need to get it right!
I want to be positive, and I will be again. I know it could be worse (but please don’t tell me that), and I know it’s treatable (though the treatment is frigging hard work and imperfect and she is still all over the place, high and low every day), and I know she will live a full and happy life. I know all of that. But just now, I need to grieve a little bit for my healthy little girl who isn’t any more. Especially because she’s still so sensitive and caring towards those around her. This week I went to buy both girls a ‘prize’ at the shops after Little L’s traumatic dental visits for being so brave, then she turned around and wanted to choose me a prize – a bracelet – for taking such good care of her diabetes.
After I’m done wallowing, I will swallow a bowl of concrete, send my heart off to the gym to ‘harden the F&* up’, then knuckle down and get back to ‘doing’ diabetes. As hard as I can. Because I love my strong amazing clever girl, all the way to the end of the world and back.
If anybody has some helpful insights into 5-year old emotional development, psychology and processing grief, please let me know!
ª doi: 10.2337/dc06-0087 Diabetes Care June 2006 vol. 29 no. 6 1389