It’s been another one of those weeks; the kind that comes with its threat of death and terror, sneaks up behind me, then jumps with a loud, “BOO!” making me startle. The threat is always there, tailing me like a good spy in one of those black and white Hitchcock movies, but sometimes I forget about it. There are weeks when it feels like life is normal, better than normal, like we’re out of the woods. There are weeks when we have dinner with the neighbors and watch our kids play capture-the-flag after dark and we travel for work and put on creative retreats and get home and work on our old house and pick tomatoes from the garden, all the while experiencing complete amnesia of the gut-wrenching reality of living with a beloved special needs, at-risk son who plays along the razor’s edge between life and death. Sometimes, reaching at normal, I live in denial, thinking it’s not my reality but someone else’s;
Those poor folks with critically ill, chronically at-risk kiddos. I have such empathy for them.
I laid on the floor by Zion’s bed a few nights ago watching his breathing jump in fits and starts. For long minutes turning fast-yet-slow into hours, I sat in that strange time warp where light becomes dark before I notice it, then stretches out into a wide open starless night. I sat on the cold wood floor and I held fast for the life of my son. Anyone who has ever sat in a room where life or death are swirling (hospital rooms, labor and delivery rooms, hospice) will be fluent in this time-passing oddity. Over and over again, like a moment of contact playing on repeat, I watched his lungs stop moving, his oxygen saturations drop to dangerously low levels, and then I intervened, watching his body gasp for air, trying to make up for lost time in fast, rapid, shallow breaths. The green numbers flashed on the monitor given to us by the children’s hospital, followed by a jarring alarm that didn’t wake him. I held my breath involuntarily every time they would dip, then forced myself to take in deep inhales, as if I could act as his breathing surrogate.
These are the moments I stop feeling sorry for those families who have at-risk kids and remember I am one of them. We are one of those. As much as we pack joy and laughter and pot-lucks into the lighter days, this is still a central theme our life: At any moment, one of the the brightest lights I’ve ever known could go out and, for me, the world would stop spinning.
We sat in a room at the children’s hospital this week after the worst of it had passed with one of Zion’s doctors. After a good hour and a half of questions and answers, reviewing his history, and going over his most recent at-risk nightmare moments, she put her pen down, lowered her clipboard and got quiet. Then she said something I didn’t even know I needed to hear until the moment the words hit me,
“This is a really hard road you are walking. I have several families like yours, who have critically ill children and I see how hard it is. He has so many issues which means he is always at risk and that is so hard. It’s hard on Zion, but it’s also hard on you as a mother, it’s hard on your marriage, it’s hard on your other kids, and it’s hard on all of your other relationships. I know you give your life up for this and I also know it’s the mom’s like you, who are so involved in caring for their critically-ill kiddos, that are the reason why those kids are still alive and with us. But it is so hard and it will always be hard.”
She sent us home with a lot of information, follow up appointments, future tests to be ordered, and some question marks about what really is going on in our youngest son’s beautiful, blessed, broken body. Then she told us he would qualify for the Make-a-Wish foundation and that she’d love to sponsor him getting his wish.
Her words set off a reaction of two different streams of thought: Validation and Fear. First, it felt incredible, amazing, almost like a drug-induced emotional high to be seen in our struggle, for all Zion has gone through and all we’ve walked through with him, to be recognized. Someone who is older and wiser and knows so much more about the inner workings of the body and brain is telling me she knows how hard this is. She saw us, really saw us, and validated the good work our love is doing, as well as the high cost it comes at. But then there was that nasty Fear with a capital F that came in fast and hard.. the reality that “Hell, if even a doctor can get all emotionally involved in a moment like this, maybe he really is at risk. If she thinks he could get a wish, does that mean we may lose him someday soon?” The Fear paralyzed me with grief both over what we’ve been through and what may still lie ahead.
Going between fits of being Zion’s personal human pillow, his super-attentive-special-needs-mama, and then sneaking off to cry in the bathroom with exhaustion and worry, I sent out an SOS text to a dear friend who is a spiritual guide. She wrote back with instructions that seemed way too simple, and yet, were exactly what I needed:
Inhale – Love
Exhale – Surrender
Pause – Trust
I sat and started practicing almost right away. On the inhale, I take in Love, all the never-stopping, never-ceasing, never-changing, always seeing and laughing and chasing me down and hoping and believing Love of God. I could hear the voices of God, like a chorus of beings who delighted in me, saying over and over, “Weloveyouweloveyouweloveyouweloveyou.”
Then I exhaled, and this time it was my turn to answer back to that love in surrender, “I surrender to what my reality is, to the love that does not end and will not leave me alone, to the fact that this is my life and this is my son and this is our life, and our life is beautiful, and we will not be abandoned in our fear and pain, and love will win.”
Then I paused between and let Trust take over. I held my breath, realizing that in the moments when there is no breath, no movement of inhale or exhale, I can still trust that there is a purpose even here in the darkest, starless, liminal place where life and death hang in the weight and anticipation of what comes next.
What comes next is Love.. on the inhale..
So here I am today, breathing. Everyone in my house is breathing, too. And for now, I inhale Love, exhale Surrender and wait in Trust. And for today, for right now, that’s enough.