The sun is setting on Christmas Eve as we sit on our front porch swing while Fiver naps. Sam hands me a glass of eggnog and I will myself to talk about anything…anything at all besides diabetes. But before I am able he blurts out, “I think we need another Humalog pen. What if something happens to the pen and we can’t give him insulin?” He’s right, of course. But I’m exhausted and all I can think to say is, “Can you believe that at this time last week we didn’t know what a Humalog pen was?”
I can’t believe how long it is taking for the dust to settle and for our new normal, the one I call Normal 2.0, to commence. Parents of children with diabetes assure me that this is as hard as it will ever be, not only because its so new but because of his age. He will get older and learn to recognize and articulate his symptoms. He will become more active in his own care. I see it coming, already he likes to press the button to prick his finger and he chooses his injection site at each meal. His favorites sites are always where he can get the best view of the needle going in as we count to ten.
But with every small success comes a new hurdle. Every near perfect blood glucose reading has a high or low reading riding right on its tail. Its only when I have the carbs of his meal counted perfectly that he decides he no longer likes the “favorite” food items I have so painstakingly measured onto his plate. With every prescription we are able to fill comes another we can’t and more time on hold as we place yet another phone call to the insurance company, doctor or medical supplier while chewing our fingernails and hoping we don’t run out of something we need. With each reportage of our numbers comes a new dosage and with more carb to insulin to activity ratios to try and wrap our tired heads around. And always, as the sun sets with the promise of rejuvenation that only a little person’s bedtime can bring a weary couple desperate to hold a conversation or silently watch TV, comes the requisite snack before bed and then BAM, he’s reanimated and running around for yet another hour as we try and wind him down all over again.
But if there’s something we can be very grateful for, its how little of an impact the diagnosis has had on the patient himself. Fiver remains a happy, active, funny, and outgoing two year old. He still loves trucks and all things lego and he still runs amuck at the park every day, unlike kids who have to live with more devastating chronic illnesses. And hypoglycemia, through his eyes, is the coolest thing because he can drink boxed juice and have more sugar snacks. Its really just his frazzled parents who are suffering from high blood pressure and lack of sleep. And his parents’ valued clients who aren’t getting enough of their time right now.
Which leads me to the next thing we are amazed and grateful for: the friends, family and clients who have given us the love, support, space and understanding we have needed to get closer to Normal 2.0. Thank you for the gift of your understanding. There have been so many great things to share and blog with you on the business end of our lives and I will return to the task of sharing them with you just as soon as I can.
Today Fiver told me that Rufus (the Bear with Diabetes, thank you JDRF for gifting him to us) was feeling sad. I asked Fiver if he felt sad too and he said no, just Rufus, he’s making Rufus feel better. Its really nice to see that my boy has learned the transformative power of a hug from all the hugs, literal and virtual, that he has received from all of you. We wish you peace and love in the New Year and look forward to documenting all the joy its bound to bring each of us in our own unique way. We each have a story of our own to tell.