Measure of Control

Paralyzed. That’s how I feel these days. Unable to shake thoughts about Charlotte and T1D. They are merciless, ever-present, and sorrow-inducing. I rifle through diabetic cookbooks, dog ear pages, but can’t bring myself to make a list of the groceries I need to make a T1D healthy meal. I’ve placed calls to insulin pump manufacturers, OmniPod, Animus, Medtronic, Tandem to get information about the very expensive products I’m told will change my daughter’s life (as if it weren’t forever altered now). I hesitate calling them back. I walk the aisles of supermarkets dazed and overwhelmed by how poisonous food can be to someone whose pancreas doesn’t work. Maybe this is denial. Just another stage in the the grieving process. But I’m registering this new horror.

Today, we go to Charlotte’s first endocrinologist appointment since her diagnosis and hospitalization at the Randall Children’s Hospital three months ago. I’m ridiculously eager, even giddy, to see Dr. Snyder, a disheveled man dedicated to keeping T1D kids alive and healthy. A monumental task I’m well aware of now. Charlo thinks I’m nuts.

I don’t know how Charlotte feels about seeing her endo. She’s internalized all emotion about her T1D which worries me. She won’t open up. The only key to her emotions is increased thumb sucking and meanness directed at me. Maybe she sees how angry and overwrought I get and has decided she doesn’t want to look that ugly. Be that out of control – or at the mercy of T1D. Smart girl. She’s always been about control and knowing herself. As a baby, we used to try singing her to sleep, but she would defiantly point at the door: “Get out!” And we would cower, leave, and feel disappointed. Yet thrilled at her confidence and verve.

That strength is a blessing and a curse. It means she embraces the only control she has now by pricking her little fingers and injecting her insulin multiple times a day. It also means being stoic and keeping at bay the complex feelings she must experience. I know they will come. And I will hold her close and validate every one.

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2 comments on “Measure of Control

  1. Nicole Cleary says:

    Liza ~ are you connected with a local T1D support group? I have found much relief, support and peace in connecting with other families raising special children (in our case, chromosome dup15q syndrome). Difference is hard and challenging and your sadness is real. Finding ways to care for yourself will allow you to participate in Charlotte’s experience with a more peaceful spirit. I cannot overstate the relief and peace I’ve received from other families walking the same journey we walk with Corrina. I wish those kinds of connections for you!

  2. diabeticlifestyle says:

    I keep re-reading your blog and my heart goes out to you and Charlotte. Please hang in there and take it day by day. I always tell myself – I get to start over tomorrow if I have the bad number days. If I can help in anyway I will. I am only 3 years in with Diabetes and still learning every day. Take care.

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