Trust Falls

“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.

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Mantras

“Wounding and healing are not opposites. They’re part of the same thing. It is our wounds that enable us to be compassionate with the wounds of others. It is our limitations that make us kind to the limitations of other people. It is our loneliness that helps us to to find other people or to even know they’re alone with an illness.” ~Rachel Naomi Remen

When I was on the road to recovery from Briella’s birth, I had a series of stints placed within my body to aid a few of the organs damaged in her delivery and subsequent emergency surgeries. My body was not very happy with these long vessels extending from my kidneys through my ureters and into my bladder. I read somewhere along the way that some people don’t even notice the presence of these implanted foreign objects. Other people have bodies that make it known that they are not happy at all with the intrusion. My body was in alignment with the latter camp. I was in near constant pain as my nerves shouted and convinced my brain that the insides of my organs were being perpetually stabbed by these straw-like vessels that allowed urine to flow through my impaired bodily system. And then there were the constant infections, the evidence of my bodily resistance to it’s need for assistance. I would take three to five baths a day in an effort to minimize gravity and relax my confused and frustrated body. Every single day was a struggle and it left me completely depleted.

My mantra, repeated over and over again in those days, “This too shall come to pass,” carried me through. And that’s just it – I knew that inevitably the pain, the infections, the tubes both in and out of my body, the fixation on my injured urinary system, that it would all move toward some semblance of resolution. But I often wondered in that season about people who experience chronic pain. What must it be like to accept that there may not be an end to the pain? What must it be like to know no cure? What mantra could carry one through the open-ended days of pain? I shuddered at the thought back then. I felt my heart grow heavy and weary with empathy for those who carry such narratives. And I would marvel too at the realization that so many humans find the strength and resilience each day to bear their own stories.

As life would have it, those months of unrelenting pain and those wonderings that increased my empathy for individuals who contend with chronic pain were a clearly a primer for this current season of life. I am cautious to share too many details in this space, mainly because it’s not really my story to tell, though it undeniably intersects with mine. What I can share is that much of our life over the past 16 months has revolved around sorting out and tending to the health issues of our 15 year old daughter, Bailey. Though we seem to have ruled out any life threatening conditions at this point, chronic and unrelenting pain has been a significant part of this chapter in her life, and ours as we all bear the impact day in and day out.

BaileyWe are trying to figure out individual and family mantras to get through the hardest days. Instead of anticipating and hoping for the passing of a season (because we’re not sure that will ever be the case), we are learning how to search for beauty, and laughter, and delight even in the midst of the cloud of pain that follows her everywhere she goes.

Some days are way harder than others. Somedays the cloud pisses me off. Somedays the cloud rages and pours down on her…and us too. Somedays I remember that a cloud that rains periodically and diffuses our access to the source of light is not the same as having no sun at all. The sun is still there even if I can’t always find it, or feel it. The clouds and the sun can coexist. Maybe that will be my mantra.

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