“There is no way she will be able to go.”
Those were the words we kept tossing back and forth at each other as we did our best to assess the situation and plan accordingly. Decisions needed to be made, financially and otherwise, as to whether or not Bailey would participate in an upcoming out-of-state college showcase soccer tournament. It wasn’t the first time we were weighing health concerns and the sustainability of her involvement in competitive sports. In the previous season she was only able to play 60-75% of the time as the pain condition she’s been battling would knock her out of several practices and a handful of games. But Bailey would always echo what her team of doctors would assert – that continuing to play was an important part of her treatment. Using the body and remaining active can counteract the messages of pain circulating throughout the central nervous system. So she kept playing, even if there were frequent disruptions.
But this time was different. Following a rather severe pain episode involving her lower spine, she progressively lost the ability to activate the nerves in all of her extremities. In simpler terms – over the course of a few days, our active soccer superstar of a 15 year old daughter seemingly lost the ability to walk and move her arms with ease. After ruling out degenerative diseases like Multiple Sclerosis and any evidence of cancer or even benign tumors, she was diagnosed with functional weakness. Basically, there was a breakdown in the communication signals between her brain and several of the nerves that activate muscular responses. Neither Brian nor I could have imagined that she would be able to recover in time for the tournament. We decided to make the deposit anyway. “Just in case,” we said.
Here we are, seven weeks later, and I just dropped her off at the airport to travel with her team. She went from having to utilize a wheelchair and sleeping on our couch because we couldn’t keep carrying her almost full-grown body up and down the stairs of our two-story house, to fully functioning again just a few weeks into her rehabilitation process.
There was far more complexity and heartache and beauty and resiliency to those weeks than I could express on this platform, but watching her relearn or remember how to walk was a profound experience that continues to unleash new wisdom as we move beyond the surrealness of it all. I remember the physical therapist who initially worked with Bailey telling her that she knew she was scared of falling, frustrated with her brain and body, but that it was important for her to trust that her brain still knew what to do even if it was acting like it didn’t. She also reassured Bailey that if her brain faltered, that she would be right there ready to catch her.
Trusting her body has been hard for her. It’s been hard for all of us. So dropping her off to fly away to another state, to stay in a hotel room with teammates who don’t understand the near constant pain this kid deals with feels really hard today. Severe pain episodes are difficult to predict and we are unsure of whether or not the functional weakness will return at some point.
She is still working at and learning how to trust her body and brain. It’s a tricky thing because trusting her body doesn’t mean constructing an optimistic mindset and naively clinging to some false hope of smooth-sailing from here on out. Instead, we’ve been wondering about trust by way of surrender. Rather than using energy to resist and resent the pain, Bailey tries to surrender to the movement and progression of the powerful waves. They will eventually pass right on by even when it feels unbearable in the moment. She is learning how to trust by way of surrendering control. She is learning how to trust that her body is doing what it can to perpetually move towards healing and rehabilitation. She is learning how to surrender to her own spirit of resiliency.
As is so often the case, I am working at trusting by way of surrender right along side her. I have had to wrestle with my own sense of failure at not being able to remedy her pain. I can’t control it. I can’t predict it. I can barely even understand it. Surrender requires that I make space for it – for all of it – for the struggle and the recovery, for the suffering and the healing. I’m learning how to trust and surrender to that universal rhythm of all life.
And these life-stretching, heart-wrenching lessons are expansive as well. Of course this wisdom traverses into other categories. About a year ago, Bailey began to understand with greater clarity a few aspects of her own sexuality and in the recent months she decided to identify publicly as a lesbian. I haven’t written openly about this reality until now, primarily because it is not my story to tell. It is her story. And it is sacred. We have allowed her to lead the way in determining when and how to invite others into this part of her story. As we continue to learn how to honor her story and hold space for it in our family narrative, I imagine I will learn how to reflect more openly about my mothering experience as it unfolds.
Trusting by way of surrender has been much harder for me when it comes to this particular category. The truth is I think I have good reason to be cautious and guarded with humanity given our history as it relates to the care and treatment of any type of marginalized group in our society. I have no control over how people in varying degrees of relationship with my glorious daughter will respond to her and her sexuality. I certainly have agency and will go to great lengths to do whatever I can to protect her, to defend her, to advocate for her, but I know all of my efforts will fall short of completely shielding her from harm. Optimism is not my jam. It’s always felt too contrived. But maybe trusting by way of surrender in this category looks more like trusting Bailey’s ever-developing spirit of resiliency.
As a family we are practicing huge trust falls these days. We are trusting ourselves and each other mostly. Trusting that we are more able to catch ourselves than we sometimes realize, and that when we can’t catch ourselves the rest of us are right there ready and willing to hold each other up. We are trusting our own capacity to suffer and heal, to struggle and recover…together.