I walk through the open sliding glass doors – leaving Children’s Hospital. Tyler moves ahead of me with all of the gear we need to make it through a lengthy post-hospitalization pulmonary appointment: our double stroller loaded down with both loves of our lives, the bag of toys, and all of Nora’s medical equipment.
I stop outside the door and breathe. Inhale. Long exhale. Then again, inhale and an even slower exhale. My breath is shallow – it has been since Nora’s most recent admission; each inhale is a swirling riptide of air sorely lacking any kind of ocean-depth or calm. Each exhale leaves my chest tight, my mind drowning and my body reminding me to breathe again.
So, I do; I begin again – with intention this time. I try to be present and envision calm, controlled, ocean-shore-breaths.
Inhale. Exhale. Empty. Shallow. Inhale. Exhale.
A cool breeze sifts my hair, pulling strands across my eyes, ears and throat.
I put my hands in my jacket pockets and look down at my feet– I continue to breathe. Inhale. Exhale. I watch one foot move slowly in front of the other, across the open bridge, to the second level of the parking garage.
My mind is muddled – lost in my mental notes from the past week, conversations with nurses and doctors, home care, in-patient, outpatient, all the bullet points from my endless quest to crack the code of Nora’s health, to find the perfect formula that will keep her healthy and help us avoid weeks like this – a life like this.
Tyler’s question makes its way to the front of my mind, “Jesse, what is it you really want from these doctors? Nora is completely outside typical on all of this – all we can do is take it a day at a time. We have the next step for helping her get healthy and stay healthy – I think that’s all we can do right now. Today.”
Practical. Rational. Grounded. Thank God for Tyler. He’s right.
But somehow, even still. Emotion surfaces. Anger creeps in – again.
I want to fix this now. She doesn’t need this — weeks like this — God, she’s so brave. I hate putting her through the hospital. How have I not figured this out yet? God, it’s me — clearly it’s my fault — I should be more proactive, more ….something. Just more. How do I save her from this? I wish we were going to the playground or on a bike ride on Tyler’s morning off instead of back to the hospital. Why is this so hard? Why does it feel like we are the only ones? Why does it feel like everyone else’s life with kids is easier?
Suddenly, I want to yell — to God and to the universe — in front of a parking lot of loading and unloading parents — to the building full of doctors in bow ties and nurses with big hearts: “How do you all expect me to keep going? To live like this? Do you even get it? Do you have any idea what this is like?”
It’s like having no air — no reserve. It’s like being alone in a war zone — fighting the fight for my child’s health and quality of life. I’m fighting the world — and at the same time so badly wanting the world to see us– to see Nora. I want to invite them in to see her beautiful light, her beautiful kind soul. I’m fighting for her place and value in this world. I’m fighting for my family’s wellness, my typical son, a happy marriage, our mental, physical, emotional wellness and the preservation of my own damn soul.
All of you medical people, you sweet, gracious, kind and incredibly knowledgeable amazing people — you know nothing. I don’t need to go over Nora’s medications again, or for you to tell me “we just need to see how she does with this (fill in the blank) treatment”, or “nobody really knows how long Nora will live— we don’t have crystal ball.” I don’t need a med-sheet, or a crystal ball, I need a hug for God’s sake. I just need you to tell me I’m not alone in this.
And God— where are you in this?
“Crazy-town” I think to myself “I’ve officially arrived in crazy-town. I don’t even like stranger-hugs, and O.M.G.,boundaries. And now I’m going to be smited by God and the universe for sending negative vibes to good bow tie wearing people and for pointing fingers at God.”
I want to YELL. No, I want to run.
Maybe yell and run.
Then I realize how frightening that would be for Tyler and the kids.
“Mommy needed a little break— she’s going to run home— yep— just like Forrest Gump”
I continue across the bridge and turn my face to the sun. I stop and squint into the light, annoyed by the brightness. I look down and know I’m irritated by the blinding reality of Tyler’s rational, practical, grounded truth: “All we can do is take it a day at a time”
I reach the end of the bridge and scan the parking lot for Tyler. I see him down a long row of handicap spaces and I walk toward him; I watch him gently place our curly haired little girl into the van.
I notice another van nearby. Another mother, parked in the handicap space, is unloading.
I see an adaptive stroller with an actual IV stand attached. I note how handy that appears – an attached G-tube feed.
I approach, I see a little girl snuggled beneath her sibling’s adaptive stroller— she’s waiting patiently.
Her mom organizes cords and tubes — juggling the G-tube feeding pump and tubing. She turns to her van and gently lifts a baby; she holds him in her arms. He’s wearing a CPAP mask, attached to tubes, partially still in the car.
This must be what we look like to a passerby, I think. I recall all the times I’ve loaded and unloaded adaptive equipment, while managing G-tube feeds or medications, supporting the torso of my four-year-old and tracking the clutch of my two-year-old glued to my leg. The equipment juggling — untangling cords — both nurse and mom to two precious people – all of it is all so familiar to me.
Seeing this mom — unloading her minivan and tending to her little ones—I suddenly see myself for the first time.
“My God” I think, “I’m Wonder Woman.”
I watch her gently hold her baby. She seems frozen. I realize the base of the CPAP machine must be too far from her baby’s stroller and the stroller is too big to maneuver the narrow space between her van and the car parked next to her.
I walk up and ask, “Do you need an extra set of hands?”
“Um.” she hesitates — I see myself again. Yeah, no way would I accept random help—it’s like double the chaos unless they know what they are doing.
She surprises me, “Sure! Thanks!”
I twist myself behind the stroller.
“Should I grab this?” Pointing to the base of the baby’s CPAP, still in her minivan.
“Yes, that would be great.” I hold the machine close to the stroller, and she settles him. I hold the machine and wait – I smile, taking in our situation, “I can’t tell you how many times I have parked on the opposite “unloading” side of the handicapped spot and run out of space— just like this.”
She laughs — “I’m going on two hours of sleep.”
I laugh too, “Oh I have TOTALLY been there!” The laughter makes room for more air in my chest – deep and natural breath.
The beep beep beep of a G-tube feed interrupts the laughter.
“Would you like me to turn it off? We have the same pump.”
“Yeah— that would be great!” She takes a deep breath and says, “I absolutely love this— special needs moms unite!!”
“YES!” I agree.
We continue to laugh and talk about strollers, equipment, and our kiddos. My lungs expand — more air and deep full breaths.
Tyler pulls the van close. I turn to her and ask, “do you need anything else?”
“I’m good!” She says cheerfully — and I know she means it.
“Have a great day!” I tell her.
I settle in the front seat as Tyler turns the car towards home.
I tell Tyler that I’ve always wondered where the moms of medically complex kids hang out. It turns out – the handicap spots outside the pulmonary clinic– who knew?
Tyler laughs — completely unaware of my desire on the bridge, only minutes before, to yell at God and all the kind bow-tie wearing people and run home – Forest Gump style. It was her— Wonder Woman Mom – she reminded me, in one simple interaction, that I am not alone in this.
I’m not alone, not in cracking my child’s complex health code, not in smiles and humor and laughter. I’m not alone in sometimes wondering if God is paying attention, or internal rants at a world of medical people who love our family and would probably give out hugs like confetti if I asked. I am not alone in sleep deprivation, not in the joy of caring for my children or even in struggling to find breath: the compressed Mom-lungs of a post-hospital stay.
And I am certainly not alone in looking like Wonder Woman unloading from a minivan. A legion of us are out there – bad-asses everyone.
Photo Credit: Jessica Rice Photography