I should write. Here, there, anywhere. It’s better than nowhere. It’s better than getting lost in a hailstorm of worry and anxiety in the few down moments I have during my day.
I guess somehow I was waiting for the crisis to end before I resumed my regular writing. So I quieted down during infertility, barely peeped during loss, kept tight lips during IUI and IVF, remained silent during a difficult pregnancy. I hardly breathed a word once she was born, and had two surgeries, and was hospitalized for 101 days.
And now we’re home and it’s all good but it’s not. She’s fine but she’s not. My career is on hold while I play full time nurse to my baby girl. It’s hard to talk to anyone because no one has been here and no one knows what it’s like except: my husband, our nurse friends from the hospital, and the various doctors and nurses at Children’s who are still coordinating her care. Oh, and the pharmacists at our infusion company. We’re totally tight.
The hardest parts are not: the g-tube and central line dressing changes. Mixing the PN and priming the lines and hooking her up to the pumps every night. Organizing the weekly boxes upon boxes of medical supplies. Taking her temp and girth and administering meds every six hours. Keeping up pet and personal care despite all that.
The single hardest part is the constant, overwhelming, all consuming… CONSTANT worry. Worrying every time you pick her up that you may tug on something. Worrying that her bowels aren’t doing well. Worrying that she threw up. Worrying about the plan of care you’ve devised for the week/day/hour/minute isn’t right. Worrying that she may never be free of all these things.
This is not typical parent worry. This is anxiety over the health and well being of my only, hard-earned, long-awaited child.
So yeah. That’s how I’m doing, how we’re all doing. Fine but stressed. Okay but worried. I don’t go into the details because it’s far, far too complicated. Instead I simply give a wry smile and say, we’re hanging in there.