my whole heart

My Whole Heart

In Issue 67 by Krista Lee Hanson

My Whole Heart
Photo by Nick Fewings on Unsplash

My son’s kindergarten teacher was a big, bearded man, generous with hugs and laughter. His old-school version of early education focused on teaching kids how to love each other and share, how to be kind to each other and silly together. He taught them to run and fetch a seat for a visitor and to pay compliments to everyone. Once when I visited the classroom, he asked if anyone had a compliment for me, and ten exuberant hands sprung up. “You look vivacious today!” a curly haired five-year-old in overalls told me with a grin.

He had been teaching for decades, but in all that time he had never encountered anyone like my kid.  But his teaching philosophy worked for inclusion. Within days, Lucas had new school friends constantly at his sides. His equipment-laden wheelchair placed him galaxies above the little bodies sitting cross-legged on the floor for circle time, but the teacher let the little kids stand next to him.  I wonder now if the teacher knew that he was practicing inclusion or it was just his gut to let kids be kids. Either way, it was a salve for my worried heart to walk into the busy classroom and witness these kids – almost always the same group of little girls – vying for the spaces to stand next to Lucas’s armrests. They pushed the nurse who accompanied him out of the way with their little bodies squirming with boundless energy, holding his sweet hands, hands that couldn’t move enough to even reach for theirs. Lucas loved school, and for that first year, so did I.

He had another teacher in elementary school who announced on the first day that she did not like hugs and she did not like messes. Her desire for order made no space for our unusual child in her mental schema, even as his wheelchair, his nurse, his ventilator and related medical equipment took up more geography in the room than three other kids combined. He didn’t seem to notice the ways he was excluded, maybe because he was too young or maybe because of his visual impairment, but his nurse came home fuming. She handed out papers again to everyone except Lucas. And then days later, Now when the kids hand out papers, they skip Lucas! My kid, my disabled kid, my bright and eager kid, was being treated like an obstacle blocking the flow of otherwise regular classroom traffic.

When the short bus dropped Lucas and his nurse off at the end of each day, I felt myself cleaved. Part of me wanted to move toward them, to greet my kid and help unload his bags and supplies as the bus operator lowered the wheelchair lift. I wanted to plant kisses on his big warm forehead, help get him down onto the couch, get his braces off so he could be comfortable and rest. But another part of me wanted to flee the scene before the nurse could tell me about their day. She needed to vent, to release her own pent-up frustration at having to sit and witness his exclusion all day. But it hurt me too much to hear, day after day, how my kid’s teacher was teaching that he did not belong.

~~~

Lucas was born with bright eyes and curious mind.  And he was born with Myotubular Myopathy, an extremely rare neuromuscular disease that makes all his muscles weak like wet sand. Burke and I quickly fell in love with our beautiful, fragile baby, our love sharpened by the knowledge of how precariously he was holding onto life. As he grew past surviving infancy, we began to see the ways he would be marginalized and excluded. Like so many other parents, we tried to make our love so big it could protect our child from harm.

~~~

Once a year, I shlep my unwilling heart to Lucas’s school and shovel my grown-up body into plastic child-sized seats to detail his incompetence and set “goals” in his annual Individual Education Plan (IEP) meeting. Our favorite school staff are always there, the ones who resist this paradigm of brokenness. Of “behind” and “catching up.” These are the physical and occupational therapists and special education teachers who, in their work with my kid, lead with his strengths. They start by seeing Lucas for the incredibly diligent and dedicated student that he is.

But to qualify for adaptations that make schoolwork for him – larger font, a microphone so he can be heard, more time for tests, an aide who can set up his computer and help him scribe the long division he can’t write himself – we first have to detail and document his deficiencies. We have to name all the things he can’t do like his typical peers. Comparing him to any “norm” and then quantifying his failures breaks my heart each and every time. The end result, though, is a 47 page, 10-point-font document - Lucas’s IEP - that just gives him the rights, at least on paper, to some of what he needs to thrive at school.

~~~

Our second child was born five and a half years after Lucas. Ida has grown up immersed in inclusion and access, so imagining a world that works for people with disabilities comes easily to her. As soon as she could crawl, she was climbing into his wheelchair. When she started building with blocks, she found the wedge-shaped pieces and made sure each hospital and school and library in her block town had a ramp. She is seven now.

Accessibility information can be hard to find, so recently we end up with both our kids at a trailhead that was not as wheelchair accessible as we had hoped. Ida looked at the steep, root-knotted path and insisted we immediately post a picture and “tell people!” She has seen how sharing accessibility information is part of the disability culture that sustains us.

Last week I watched as Lucas tried to mess with her by dropping a Hot Wheels car into her glass of soy milk that she had placed on his table. He couldn’t quite move his arm enough to reach the glass. I watched as she shriek-laughed “NO!” while also sliding her milk glass toward him and gently tugged his hand so that he could drop the car in her glass. She likes talking about how siblings annoy each other sometimes, so she helped create the conditions for Lucas to be able to bother her.

I can’t get inside her head, but her move looked so easy. Like she knew in her bones that we can make the world work for everyone.

~~~

All parents will tell you that sending their children out into the world is like letting a piece of their heart leave them each day, and I have no doubt it is true. But then what is the metaphor for me?  Burke and I keep Lucas breathing each day, wipe his face, make him his blended food and then feed him through a tube. We build structures to turn board games up on their sides and lean on an easel so he can see; we figure out workarounds for card games for a kid who can’t hold the cards. We slide his glasses onto his face. We lift him out of bed in the morning and lay him back down on the couch in the afternoons, then carry him back to bed each night. Because he can do so little unassisted, we do so much together. We spend time with the details, position him just like he likes, with the right textured towel, the right pillow between his knees, even the right angle of his head. We are so close to him, literally. How do we let him go to school, or anywhere without us, without feeling like we’re handing the world our whole, beating heart?

~~~

Discrimination against people with disabilities remains common. Insurance denies life-saving procedures and equipment. The forces of wealth hoarding would like to roll back the Affordable Care Act, the legislation that finally made it illegal to deny insurance based on disability or chronic illness, coded as a “preexisting condition.” Schools still segregate children with disabilities rather than providing the support in the classroom that would meet the student’s needs. Despite bringing his own nurse to school with him, Seattle Public Schools wouldn’t allow Lucas to go to our closest neighborhood school because they did not hire a full-time nurse for the school. The logic was so illogical. Discrimination in the absurd.

If we want to visit a friend, we have to start with asking about the exact number of stairs. Each year, the number of stairs we can safely lift Lucas and his wheelchair up goes down, and with it the number of homes we can go into. Did those sweet kindergarten friends slowly drift away because of how he was treated at school? Or does he not have close friends because he couldn’t be invited to play dates or birthday parties in their out-of-reach houses? Maybe there are other factors too, but I can’t help but wonder if friendships would be easier if the world was built to include him. Or if everyone just slid things to within his reach.

Lucas miraculously does not seem to care about any of this, still. He is happy with his audiobooks, with his deep dive into the Star Wars universe with Burke, with our morning routine of listening to a record on vinyl. He calls himself “the handsomest kid in the universe.” I so often wonder how much more subtle and systemic discrimination he can endure and still come home with his sense of self-worth intact? Without a broken heart?

~~~

COVID school closures meant we didn’t have to let Lucas out of our sight or earshot for eighteen months. Although I missed him leaving, there was also relief in knowing he was always in our house. Always somewhere that worked for him. And it was easier knowing that, with our pandemic work-from-home routine, Burke or I were just in the next room in case he needed us. If a piece of his technology broke down – his trackpad that allows him to do his schoolwork, his individually adapted computer system, the tiny fan that keeps his sweaty fingers working on the technology, his only access to his learning – we would be able to immediately fix it or track down the people who could. And we could be there to help with lifting him in and out of his wheelchair, with all the physical care that gets harder as he gets bigger. We were there, along with his nurses, to make our small world work for him.

But another part of me missed him leaving for school, missed the mental rest of knowing his care and education is for a few hours outside our control. I missed being able to focus on my own work in a way that is impossible when I am tuned in to the sounds of his care. The clattering of the heavy computer mount coming off his chair signaling he is ready to lie down to rest. The pitch of the suction machine’s engine rising higher and higher meaning there is a glob stuck in his airway. Burke’s heavy footsteps signaling he had lifted Lucas out of his chair to lie down and rest at lunch. “Rest” meaning Lucas would need help figuring out if there was a new episode of his favorite podcast to pass the time while he got his medical care.

One day I am in the kitchen making lunch, overhearing his online 6th grade classes. I hear him come off mute to answer a question about ancient Egypt. I can tell the teacher doesn’t understand him. Lucas slurred speech is hard for many people to understand in person, and it’s even harder online. I hear her ask him to repeat himself, then ask him to type his answer in the chat. She waits. His typing is sometimes awkwardly slow since he can only move one finger a small distance to tap out the letters. I feel the tension of the whole class waiting and want to run over and help him type his message quickly so he can stay in the conversation. But she waits some more. I hold myself back and watch: the pause of the planned curriculum, his deliberate one-finger typing. She is not just striving to understand him. She is teaching all his peers – these kids he’s never even met in person – that it is important to slow down to understand him. To include him in the conversation and the community. She is showing him that his voice is valuable.

It shouldn’t be enough to make me cry, but I feel my throat tighten at this simple moment. He has had some great teachers.  But he also had teachers who didn’t slow down or adapt their teaching enough to include him. I raged for him, mostly. But I also thought for them, what a loss. They didn’t pause long enough to get to know his humor, his wit, or his smarts. To know the incredibly huge, generous heart he brought into the building each day.

Lucas feels welcome at this new middle school, and in sixth grade he became known as one of the more outgoing online learners, willing to speak up in small groups when all the other kids had their cameras and microphones turned off. When we met with his science teacher before a mid-year IEP meeting, he told us that when they started learning about the respiratory system, Lucas gave an impromptu lesson to the class on how his ventilator works.

~~~

When we help Lucas get into bed at night, he prefers side lying, knees bent into the shape of his legs in the wheelchair. He always saves me the “snuggle spot,” and I climb into bed behind him, wrapping my more moveable bodies around his. I lie behind him and soften into his always warm body. I drape my right arm over him, sometimes rubbing his belly, feeling the plastic g-tube button beneath the dinosaur pajamas he has long outgrown. When it’s chilly, I wrap my hand all the way around his soft ribs, tucking my hand in under his heart. It always surprises me how his soft muscles leave his heart so palpable. I know it is still tucked away behind flesh and bone, but in this position, in the dark, I can feel the ripple of his heart’s every contraction and release. I lay with rapt attention as Lucas’s heart flaps like butterfly wings in my cupped hand.

How am I supposed to go on living an everyday life – with dishes to wash and emails to read and meetings to attend – when my beloved child moves in the world so exposed?

He is getting older. He has long been content. Easy going. But he is beginning to notice the people who ignore him, who exclude him, who build a school without an accessible front door. He deserves to take his heart out into the world – his love and goofiness and deep fascinations bordering on obsessions – and follow it wherever he wants to go. But I look out and see: the world is not ready for my child.

~~~

We adapt to so many things: an unexpected life, a pandemic, a built world not built for our children to thrive. I have grown used to living on the precarious edge of love and heartache, some days remembering to treasure every day I have with my kids, some days so used to this place that I take it all for granted.

The pandemic ebbs and flows, but Lucas is now back in school in person, happily going about eighth grade in a building without an accessible front door. I have not been able to talk to each of his teachers individually, to make sure they know what a gift of a human they have in their classrooms, to convince them to pause long enough to see past the tubes and machines and rotation of accompanying nurses to see the whole kid. But he comes back to us at the end of each day still happy. He tells us he is famous at school because so many people say hi to him in the hall.

Now that Lucas is thirteen, we no longer try to hide the ways the systems fail him all the time. We include Lucas in the IEP meetings; we tell him about some of the things we see that are unfair. It is hard for me to stop shielding him, but hopefully the information we’re giving him also helps him put names to some of his frustrations.

And we make space for celebrating all of the ways he is thriving and all of the people on his giant team of school staff who are wonderful. At the end of each day, we share what we are grateful for, a ritual we started when Lucas was little. So often these days Lucas says, without offering up more details, “I am grateful for another good day at school.”

About the Author

Krista Lee Hanson

Krista Lee Hanson lives in Seattle, home of the Coast Salish people, with her partner and two children. Krista loves helping things grow: wild yeast into bread, seeds into an accessible garden, audacious ideas into organizing strategy and piles of paper into words to be shared.

Read more work by Krista Lee Hanson .