Close friends have begun to stop by with their children for a playdate in the late morning, spreading into lunch, and then the children are tired but I am more so, and we all lie down for a nap or at least a few episodes of Phineas and Ferb. They arise and play in their playroom, but I am lost in slumber, waking only at Daddy’s gentle nudge for dinner, or, worse, late in the evening, when the house is silent and I am still tired, but not sleeping between the hours of 3 and 6.
The meds relieve my pain but also take away my energy, and I am so tired that the days pass one into another without my noticing. Work is slow but doable, I parent the best I can, with all my energy until just after lunch, when if I have family here, I nap, to awaken hours and hours later.
The heat is oppressive, and we live indoors this summer, as when I go outside my arms swell up, even in my lymphedema sleeves, and my belly bloats as well. And I get crabby. So that’s not a solution, and won’t be until we have a handle on the meds a little better and I can drive again (trying not to on the opiates), and the breakthrough pain is less and less, so I won’t get stuck somewhere in pain and we somehow find my energy again, so I can walk around at our destination.
I don’t mean to paint a bleak picture. I am as always thrilled to be alive, but it is a quiet existence, and the side effects are more than side effects, and I am so very tired of sleeping so much. I’m fighting so hard — we’re all fighting so hard — to keep me alive, that it seems that I should be able to do more than play quietly with the children in the morning, keep up with the most basic chores, and write two days a week when everything magically balances.
Friends are a wonderful blessing, bringing meal after meal and thoughtful things to keep the children distracted, or games that we can enjoy together from my couch or bed. I don’t have the energy to say yes to all of them (how blessed we are!) but when I can, it is lovely, and the love — from spouse, from family, from friends, from those two perfect boys we call our own — keeps me going.
The love keeps me going, and I remember what a gift each day is, as I take the rare step outside and catch a glimpse of the butterflies we raised this spring — or their grandchildren — or the gravel pit Grandpa made just for us — or the azaleas, the playset, the shovels, the toys, the detrius of a live well-lived. And I take a deep breath, remembering to enjoy it. Remembering that life is made of moments, and I am so lucky that I get to live such wonderful, wonderful moments all smooshed up together in this beautiful life that exists between the sleeps.