The days pass by (by Susan)

The days pass by in a slow not-quite-rhythm as we learn to adjust to this, yet another “new normal” of cancer and chemo and pain and weakness and pills and side effects and always, always fatigue.

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.

Originally posted at Toddler Planet.

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2 Responses to The days pass by (by Susan)

  1. Lahdeedah says:

    Hey friend.

    I commented on Toddler Planet, and I’ll comment here. I think you are simply an amazing person…gifted beyond words. I am totally pulling for you and praying for more wonderful moments that exist between the sleeps (beautiful…)

    Love,

    Jill

  2. Lyn says:

    I am sorry I have been absent. I have been dealing with a very personal issue which I have decided to blog about here, as well as reconstruction. You don’t need to be told how very special you are to all of us, but I’ll say it anyway.

    You are loved and you are an inspiration.

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