I don’t know that you want to read this today. It’s here because I finally wrote it down last night at 3 a.m. and I promised to share everything about this journey with you. Well, this is part of everything. If you want to click away, that’s fine. Here’s a great place to click that will make you feel good about all the good in the world, and even give you a chance to be a part of it. But for those of you who stay — I need to say this out loud.
I am not afraid of dying.
I am afraid of being stuck. Here, in this bed again, comfy though it may be, alone and tired. Helpless. My brain perfectly fine, at least after a stretch and some exercise (hello, twitter!), but my body deadened to the world, still, motionless. Unable to move substantially day after day after day.
Listening to my children play downstairs with someone else, I ache at every laugh.
Later, in the middle of the night, my thoughts wander to how things will change, when I get better (we’ll eat right! play outside every day! invite friends over!), and then, when, inevitably, I get worse again.
I wonder if maybe we will get a hospital bed downstairs, when the time comes, if we’ll put it midst the playroom, with its hulking rolling wheels crushing matchbox cars and trains and other things little boys make go ZOOM!
Zoom was Little Bear’s first word, or one of them at least, and I wish I could remember what the first one actually was. I was there, I know it, but I can’t seem to pull it out of my brain.
Today, though, today I remember. Today I was holding him gently after his bath, looking into his eyes and giving him a little tylenol to help relieve his teething (1 year molars — all at once!), and he said YUM.
Bear is a strong little baby. A little boy, really, from the moment he came out of my womb, sat up, and looked around at the doctor and nurses, me and WonderDaddy, as if to soak it all up before deciding whether to laugh or cry.
He is a very strong kid, pushing me away even as a newborn at the breast, and now when he twists in my arms and kicks my radiation burns, I am ashamed to say … it hurts.
Bear is being raised by his Mommy and Daddy and Grandmas and Grandpas and friends — and he is thriving.
But a small selfish part of me wants to still be his world. Like it was before. In the old days.
Before I got cancer.
…
My oldest child and I are joined at the heart. He doesn’t know life without me; I am his constant companion and best friend. He told me so, once, when he had just learned the concept, and it melted my heart completely.
Now he is growing up. At 3 1/2, he has deemed himself too big for kisses and hugs, unless he is very, very sleepy. He “wipes ‘em all off” with those words and a determined swipe of the back of his hand or tells me declaratively, “Me not like your kisses, but me still love yoooooooou!” which makes me love this independent, attached, bonded child all the more.
I still watch him sleep sometimes, whispering in his ear that I will always love him, that I will always keep him safe.
I stopped doing that for a while, worried that I was making promises that I won’t be able to keep, but I have consciously started again. No matter what, I will always be with him. I am confident of that now. I will get better, and I will protect them and laugh with them and help them and teach them and discipline them when absolutely necessary. I will. But then, if and when the day comes that I cannot be here with them any longer, I have a plan.
If I can no longer be with them here on Earth, I will be with these children in spirit. I have thought about this, prayed about this, reasoned about this, and am determined beyond all doubt to make it so. I have wrestled with a physicist’s conscience and a presbyterian’s heart, and come out the other side with a modicum of peace on this issue.
I am assured now that I will be their angel, tripping along in my wings if I get them, safeguarding their every step, and picking them up when they fall anyway. I cannot imagine ever letting go of such love, this baby-tickling, preschooler-teaching, both-ears-listening, all-encompassing mama love, and I will be with them always, in spirit if not always in body.
…
This body — it’s seen better days. The light of my child’s nightlight reveals scarring and bruising and broken bits where there were none just four years ago, when this nursery was new. My arms are scarred with holes from the chemotherapy injections, the veins closed, the hands dotted with dark spots where they were used as well. The muscles in my arm are twisted and scarred with nerve damage from the surgery and swollen with the lymph that no longer remembers where to go on its own. My breasts are now only a jagged line, port to starboard, and my belly a hollow reminder of the joys of carrying the boys there, long ago, before they were born.
Before they were born, I was a woman and a scientist and a friend, but not yet my whole self.
My heart grew and expanded beyond all measure, with the arrival of each of my loves. WonderDaddy first, then Widget, then Little Bear, all crowded now in bed with me, piled one around the other like a pile of sleeping puppies.
Only I cannot sleep.
I lie awake, not afraid of dying.
Afraid of being separated from this, my love.
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