Past heartbreaks made me who I am – a deep-hearted, sometimes wallowing soul, giving and always yearning for compassion, understanding, and completion. This T1D heartbreak is making me a fighter, a learner, an advocate, the best mom possible, and more alone than I could ever have imagined. And I’m no stranger to lonely.
But, I’ll try to be optimistic today.
Benchmark: Charlotte had her first visit with her endocrinologist, Dr. Snyder, since her T1d diagnoses four crazy, long months ago. It was stellar. Thanks to a rigorous insulin (Novolog and Lantus) regime, she has regained the weight she lost due to her disease, grew two inches, and has a very good A1Cof 7.7. (Her A1C at the hospital was more than 12 which means her blood sugars had been running well into the 300s for a long time without us knowing – ‘normal’ is somewhere around 4-5.) Our Doc thinks we’re doing really well and has approved Charlotte’s desire to get an insulin pump at only six months into the disease. We’re moving fast at the Hand house.
We have narrowed our insulin pump choices to two, the Animas Ping and OmniPod. Of course, Jasper and I differ on which ones we like. But really, it’s Charlo’s choice. She’s been wearing an empty, demo OmniPod for two days to get the feel of something attached to her body 24/7. It’s an external pancreas, really. Her lack of self-consciousness about the bulge that shows through her bathing suit astonishes me. She is at once damn strong, smart, mature beyond her years, and still the zany, booty-shaking wonder that makes me smile (and furious!).
I’ve contacted a family therapist with special experience dealing with people and families struggling with T1d since our collective stress has increased exponentially, especially mine. We are all effected and need support. Charlo has yet to demonstrate any emotion about her disease and I’m pretty sure it will come. Max (almost 12) has cried several times about Charlo’s T1d, which infuriates her. She can’t seem to tolerate any emotion around her disease. Which I get – only sort of. I suppose it’s hers to own and she’s like her Dad, very private. Needless to say, Jasper and I could use some interference from a professional as well; I am wrought with emotion, anger, and impatience. Not good.
Charlotte is still enjoying her T1d honeymoon, which means her pancreas is still producing some insulin making her insulin doses small. But it devastates me knowing that it will cease to work completely sometime soon. How weird is it to have a major organ in your body without function? Ugh, I said I wouldn’t got there today.
So, I’ll stop here. Optimism when dealing with a chronic disease can be tough, but the alternative is just damn ugly.