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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Rising Still: Beginning thoughts on caring for teens with undiagnosed illnesses and chronic pain

When I began this new blog venture (the fifth blog I’ve ever been a part of creating or co-creating), I had anticipated it growing into a space where I could capture and catalogue my musings of this stage of my own motherhood journey with my four girls. I felt the time moving along much faster than I had ever previously known it to move, even faster than it had flown by in the earlier sleep-deprived and drowning-in-diapers stage of parenting. The year prior to launching the blog was spent trying to sort through the unexpected and sudden uprooting of a life we had rebuilt for ourselves after a few wild adventures involving a short stint in Uganda, an equally short stint in California and a three year journey through a graduate program at the school I now work for part-time.

I had hoped to be more intentional about the practice and rhythm of writing. I had hoped to be more focused in my musings, to use this platform to generate or house a few new vocational projects. I had hoped to unfold my feminist leanings in how they shaped my mothering, or unfold my mothering and how it shaped my feminist leanings. I had hoped that this little writing space would generate the deep wisdom that comes from exploring one’s own life. But as is so often the case, at least in my life, things rarely workout exactly as I imagine they will.

I have roughly seven to ten drafted posts sitting and waiting on my blog dashboard. They’re patiently awaiting a revisit, edits, a conclusion perhaps. But there they sit. Left undone. Untended. Unfinished. I started to understand these abandoned blog posts and major lulls in my own writing practice as a type of resistance. It dawned on me this morning, that the resistance could be directly connected to the title of this blog – Little Women Rising. To write about my girls rising into bold and brave and brilliant young women could be a challenge these days as two of the four have been contending with complex medical issues that leave them both lying down more than rising up. Oh the irony.

I know I need to write. Resistance be damned. I need to find my way, paving one word at a time, through the shit show I feel like we are living these days. So here I am in this space I created with vocational aspirations, now realizing I need this space to sort out how we will rise together in the face of the heaping pile we stumbled into.

Let’s begin with a list of feelings.


5 Things You May Feel if Your Child is Suffering from an Undiagnosed Illness (as of yet) and/or Chronic Pain that Impacts Daily Functioning

  1. You may feel like you are legitimately going crazy. This feeling often follows awful doctor’s visits where the expert you vulnerably and desperately approach looks at you or your child and inevitably suggests stress as the culprit because they have no other known categories for your ailments, or maybe they simply hint at their suspicion of an exaggeration or paranoia. Sometimes it surfaces when your child becomes irritated with your obsessive symptom check-ins and new google informed wonderings every hour on the hour. And the feeling lurches from deep within too, because you actually know that you are going crazy. The inability to sleep past 4am without grabbing your iPhone to type one more symptom into google, the difficulty concentrating on anything else and the frequent and increasing dissociation would be enough for any therapist to diagnose you with an anxiety disorder. I know this. I was a therapist before life took a turn. But now, my view from the proverbial (and metaphorical) couch, is that perhaps going a little crazy is a normal response to a crazy experience. Eventually, your craziness may lead you to some answers or someone who seems to hear you and believe you and your child. Make sure you take as many deep breaths in those moments as is humanly possible.
  2. Panic, denial, grief, and numbness may all take turns. Panic is always just a new symptom or blood test or scan or pain episode away. It’s the panic of discovering something life threatening. But then it’s the panic that you’ll never figure out what’s going on or how to usher relief for your child. And then denial often swoops in convincing you that you’re blowing this way out of proportion – that none of this is as big of a deal as you fear it could be. Denial can even convince you in moments that this is all psychosomatic and it’s of your own doing – that your personal brand of crazy is creating this response in the body of your child. Grief is the hardest for me to sit with at this point. It’s the grief over what has been lost already – the time, resources, energy, opportunities for play and delight, days upon days of struggle. But it’s also the grief over what losses may be set before you still. It’s hard to sit in the grief for very long before an undoing occurs. I’ll explain the undoings a bit further down the screen. Numbness used to feel like the safest place to situate myself but too much numbness starts to lurk a little too close to the edge of deadness. Panic, denial, grief and numbness keep taking turns unless they are arrested by something even more powerful or substantial or true. A sunset, the playful demands of a four year old, attending a lecture with Dr. Cornel West and a room full of people looking to do better by one another have all been powerful enough interruptions in the recent weeks.
  3. You may oscillate between feeling powerless and having delusions of grandeur. It’s when I feel confounded on what to do next that I typically find myself crying on the floor in my closet, or pounding the steering wheel of my car as I sit parked in the privacy of my garage. Bouncing around from one doctor to another, one specialist or clinic to another, listing the weeks (or years) of the progression of symptoms and all that has been either confirmed or ruled out over and over again is beyond exhausting. And perpetually finding ourselves at the feet and mercy of a fractured medical system that rarely exhibits the continuity of care necessary for more complex cases can further deplete an already exasperated family. I combat the sense of powerlessness in the process with some significant overcompensating by way of the above mentioned incessant google searches, but I have also expanded my pursuit of answers to scouring the research and studies found in the scholarly journals I can access. These searches are propelled by the notion that if I can just find the missing piece to the puzzle or if we can just get to the right expert then somehow I can remedy everything. These delusions of grandeur – that I can somehow fix what is broken for (and within) my child – seem connected to some primal and instinctual maternal wiring, but it simultaneously exemplifies a resistance to the spiritual reality and developmental milestone of truth that my teens and I must each accept – I am not God or Goddess. I do have agency, so I am not powerless. But beyond my own agency, I must contend with the limitations of a world that functions according to natural realities and imperfect human systems. There is so much nuance and tension to be found and explored between this psychological, philosophical and spiritual dichotomy.
  4. Loneliness may be difficult to combat for both you and your child. I’ve noticed something both heartwarming and heartbreaking during our visits to various clinics at Seattle Children’s Hospital over the past year. Perfect strangers often strike up conversations in these settings. You don’t see that in many other places here in the midst of the cultural phenomenon of the Seattle freeze. The interactions I have been privileged enough to witness (or close enough to eavesdrop upon) are typically initiated by one parent of a patient asking another parent of a patient about what clinic they are visiting that day. It’s a connecting point. We are all standing in the same lines, sitting in the same waiting rooms, sorting out how to best care for our child and get the answers we need. Within the walls of the facility, I don’t feel so alone. I see the exhaustion in the faces of the other caregivers too. There are plenty of parents and children that are patients in far worse condition than we currently find ourselves experiencing. Regardless of the spectrum of need and desperation, we all know at least a little something about each other’s worlds. Outside of those walls, it feels overwhelmingly isolating at times. Chronic illness/pain is often an invisible issue. So there could be (and likely are) others walking around my small world facing similar battles, similar emotional and physical exhaustion, but I wouldn’t know it just by looking at them. And they wouldn’t know it by looking at us. I sometimes wish we could all walk around the world with chalkboard signs hanging from our necks that reflect our current sufferings – whether physical or emotional. I am certain we would all have at least one thing worthy of displaying. Maybe then we would all be a lot gentler and kinder to one another as we move through the normal operations of everyday life.
  5. You may encounter opportunities for the deep psychological work of undoing internalized messages. It might be hard to access these deeper levels of the self when you’re operating out of survival mode and navigating life one step or moment or task at a time. But there may be moments where it feels like your own tectonic plates shift and open up a crevice that allows some kind of profound and transformational insight to fall into the core of your being. Mostly these experiences are remarkably fleeting. A few weeks back I dragged myself away from all research devices and committed to walking as long as I needed to in order to feel like a whole body of a person, not just an obsessively thinking head of a human. The thinking didn’t necessarily stop, but the walking generated a more embodied presence than I had felt in several weeks. I could think a bit, and then cry for a bit, and then yell at the Divine for a bit too. Head, heart, and spirit. I guess that’s what was necessary for me to begin to hear the messages that were in need of deconstruction. “This isn’t supposed to happen now. Why is this happening now? What am I supposed to be learning in all of this? Are we being punished? Are we cursed? WTF???” They were rather revealing questions of my heart and soul. I’m learning to unpack what they each reveal about the messages I’ve internalized. This isn’t supposed to happen now. Interesting that I’ve bought into the myth of our culture that life is meant to play out a certain way…if you’re a decent human, if you work hard, if you play by the rules. I wonder if my privilege has prevented me from accepting that neither suffering nor struggle bow down to the notion that children and teens shouldn’t have to face hardship (especially if college and dreams of playing soccer at that level are on the horizon). The remaining questions of why and lessons to be learned and whether a curse is at play all reveal, at least in part, my own susceptibility to an egocentric state of mind. Why not happen to me…to us? That’s the countering voice I heard that day in the middle of the woods. It wasn’t a response that minimized my own experience of suffering, but it was a truth that reminded me that suffering and hardship will greet us all at some point(s) in our journey. It’s simply part of the human experience. Who am I to think that I should somehow not experience hardship when my news feed is filled daily with tragedy after tragedy of greater or lesser degrees? This is not to say there isn’t meaning to be made out of these experiences. I’m just learning that the meaning may have more to do with increasing my capacity for empathy and understanding, not getting stuck looking inward alone. These are the great undoings that can happen when our own little worlds quake and crack.

 

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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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