Learning to surface

family story

I tell myself I’m being there for them, but I know its the other way around, they are my life raft. She snuggles under my arm with her 4 year old stout plumpness as his bony angles tumble across me. There is no comfort like watching your children’s easy breath as they sleep deeply. They lift me to float, and anchor me all at once. There will likely come a time when they actually need me to be the Father we all imagine me to be, to be a raft for them, I hope I’ve learned how to surface on my own by then.

Writing is the way I learn to surface now.

Every person I’ve called since this new, terrifying chapter opened for us all, has said the same thing: how can I help? I’ll get on a plane, I’ll come right over, do you need me to get the kids, can we cook for you? How much do you need? That has been a gut wrenching healing for me, every call destroying my old lie of going it alone. It hits me while I’m driving, sitting in a cafe, about to pick up the kids, heading into a meeting. I cry in fits and starts, like coughing up my heart and getting a gut-punch at the same time.

Is she OK? How is she right this moment?

When we brought our son home from the hospital I woke up every minute to make sure he was breathing – I was such a ridiculously nervous new Papa. This is like that, only much much harder. She’s away at a clinic, I know its just what she needs, but how do I check on her? How do I watch her chest rise and fall like it should, listen to her heartbeat? How do I find out how she is without assaulting her with questions as soon as she picks up the phone? Its so good she’s not here, I’d be obsessing over every move, every change in expression. Is that good? Is that bad? What does that mean?

For the first week we were drowning in the shock that comes with the word “cancer”. Every buried trauma came up: fear, shame, guilt, terror, fight or flight or flight or flight. Once you’re in the cancer cloud of fear its difficult to realize most of what you’re feeling, most of the stories running through your head are ultimately totally disconnected from what is actually happening. A million zombies are not killing you, nuclear war has not annihilated the planet, you just woke up to something that’s been moving through her for who knows how long.

She is still the miracle I married.

Her big sister Mary flew out to help with everything. I think there are few human beings on the planet who can carry as much as Mary can. She’s not so much a force of nature as the one who makes sure the forces of nature get done what needs to be done. She’s already cleaned the house top to bottom, done all the laundry, revolutionized a few of our habits, and loved the kids up to no end. I’m convinced by the time she leaves the house will have added a floor or two and I’ll have replaced 10 lbs of fat with stone cold muscle. She was here when Terry decided it was time to go.

“I have to leave now for the clinic. It feels like I’m dying here.”

That’s what it looked like from where I stood too. She was waiting for weeks to hear the standard treatment options. Waiting in fear when treatments she knew she already wanted to pursue were ready for her down south. Waiting while hopelessness dug in deeper, while she sunk into the couch like a black hole.

There is so much I don’t understand about whats going on, but one thing I’m sure of: I trust my wife. When she is sure of what she wants, when she knows what steps she must take, I know that is what needs to happen.

“The time to move is now.”

Rush to the passport office, phone call after phone call, rush rush rush when we’re already stressed. Breathe. Breathe again. Feel your feet in your shoes. Make yourself do your morning ritual. Listen to the land, pray to the spirits, become the grace you’ve practiced for so long. Stay in bed a little longer with the kids, cuddle them more. Remember above all else, this is happening to her, not to you. Even though you want to, you cannot take that on, its only destructive. You walk beside her, lift what you can for her, but it is her journey. Before you know it, she’s gone and you’re waiting for the first call:

“Hi honey, I feel so much better.”

A few treatments, one good nights sleep, time away from bounding kids and my endless fear and several of her most uncomfortable symptoms have vanished. Vitality is returning. She is just where she needs to be. Hope begins to infuse her days. Rest now, get strong for whats to come.

Mary and I are left to work through meetings and paper work here. A week after the ER visit that started this her oncologist didn’t have the test results we were expecting yet. “Maybe a few more days… maybe seven. Just call later.” And then: “did she have cancer there? No I don’t think so, nobody said anything about that.” Shuffling the paper. “Oh let me go check, maybe I left something on the printer. Yes you’re right, sorry I forgot a page, she does have cancer there. It doesn’t really matter though, its metastasized and that’s what’s important.”

It matters to us.

Its hard for me to see life as a math equation, even if that math saves lives. Its not my job to see Terry as a collection of chemicals to be managed. It is tragic to see so much science with little or no art to provide it with grace and humanity. Perhaps she will give herself over to the processes this treatment offers when the time comes, a different oncologist I think though.

The word is out at school now, drop off is a little more complicated. More well meaning smiles, a few checking to see just how many circles are under my eyes, am I still sane? You know when people quote that African proverb “It takes a village to raise a child”, this school is that village. Our children are held and loved there. Already the staffs arms are drawing in to protect us all more. Extra childcare, summer programs, food, you name it we’re here.

She called us via video phone the other day, after just three days she looked better than she had in over a year. The kids bounded up to the phone, Mary and I cried in the background. The road is long, but she is bright and strong. This is her journey, and it is well met by this powerful woman.

Three hours sleep a night for me turns into four, turns into six.

My good humor is less forced with the kids when I get up now. I am genuinely rested, hopeful, less nervous when she calls to check in. I’m almost ready to not ask her how she’s doing at all. She’ll volunteer that when its important. Its not about me, its about her. It doesn’t matter how long I need to wait to hear how she’s doing.

We have a good friend Jan who has survived two bouts of cancer. She is full of wisdom:

“You can choose not to be afraid, sometimes you HAVE to choose not to be afraid.”

I realize this train of trauma I’ve been on is not reality, not life, not whats going on for her, not what she needs. Its toxic. Some of it has to be gotten up and gotten out. Some of it has to be pushed aside and taken much less seriously. Trauma is not the future, trauma is the past.

I’m in the unknown now, really we’ve been there all along, we don’t know what the future looks like. She’s just a few days into a three week intensive program, I’m too humbled to imagine how she’ll be when she comes home. But I know me and the kids will be good when she gets there, we’ll be strong in our love for each other and her.

Thats our job now, to go with our strength which ultimately is love.

Terry’s niece Lyndsey has started a Go Fund Me campaign to help offset the costs of all Terry’s treatments and buy me more time with the kids. If you feel you can give or know someone else who can, please check it out: https://www.gofundme.com/terry-ellis

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