They say boredom is good for children – that it inspires creativity and individuality. I’m not sure that was true for me. My experience tells me that unsupervised boredom (NOT unsupervised activity – there’s a difference) in the hands of children leads to ER visits, soul wounds inflicted by neighborhood bullies, or at the very least, ill-conceived schemes where someone (not me) runs crying home to mom.
In the summer of 1979, in the midst of true boredom, my friend and I set a goal for ourselves. We decided to jump off the roof of every house in our neighborhood. We were ten years old, but we were undeterred by our age or our size. We believed in ourselves. And by the end of August, sure enough, we had done what we set out to do.
One by one Dena and I scaled the side of every house on Archwood Street. We sat on the shiny black shingles of each roof in the sweltering summer heat while we worked up the nerve to jump off the house and…about three hours later we jumped to the ground below. Hey, it’s harder than you think.
Sometimes we had friends cheering us on at the bottom. Sometimes we didn’t. Sometimes the houses were simple one-story structures requiring very little chutzpah. Occasionally, we faced a real challenge with the steep, slanted roof of a two-story house.
But we did it. We successfully jumped off the roof of every house on our street.
I know. Crazy. It’s a fun little anecdote to tell at parties, but you can be sure I kept this little ditty about my childhood from my own children until they were old enough to know better than to do anything like it. Although, funny enough, even with my safety hypervigilance, my kids didn’t make it through childhood without a few broken bones of their own. I guess kids will be kids.
It’s pretty clear the 1979 Summer of House Jumping, combined with some other dumb, boredom-induced, thrill-seeking stunts done in the first 25 years or so of my life… as well as a couple of other events and conditions mostly outside of my control – eventually gave me a back that all the kings horses and all the kings men tried their best to put together again. I feel ya, HD.
My back now looks like this:
And my neck looks like this:
Lucky you – I don’t have pics of the spinal cord stimulator in my left hip, but it’s there – connected to wires threaded into my spine and humming along 24/7, doing its darnedest to block the pain signals running from my low back, through my right leg and down to the bottom of my right foot all of the freaking time.
I’m basically a living, breathing bunch of screws and electronic devices. My kids call me Cyborg Mom.
Turns out the surgery that fixed the broken bones and instability in my back also triggered a rare disease called Complex Regional Pain Syndrome (CRPS). This condition is perfectly named. It’s complex because it’s rooted in the neurological system and because it presents with a host of symptoms not commonly connected. I’m talking poor circulation, poor temperature control, swelling, spontaneous hair or nail growth (I know… blech), discoloration of the skin, and pain, pain, and more pain. It’s regional because it’s usually isolated to a particular part of the body. And it’s a pain syndrome because the pain signals are stuck in a loop. They never stop.
And since it’s neurological, and our nerves are necessary for function, CRPS often leads to permanent disability.
Permanent is a tricky word. People don’t like it very much… unless of course it’s attached to something wonderful.
Permanently rich – yes, please
Permanently healed – hallelujah, yes and amen
Permanently abundant in coffee and chocolate – I mean, of course
We like things permanently fixed, permanently settled, permanently resolved. But when the permanent is attached to an unpleasant and debilitating experience, it’s understandable that we are willing to try just about anything to change it for the better… permanently. I have spent much of the last 20 years doing just that as I’ve battled first with the busted back and then CRPS.
Chiropractic care. Physical Therapy. Massage. Essential oils. Supplements. Every form of exercise (EVERY. ONE.). Diet. Prayer.
So. Much. Prayer. All in a forceful, determined effort to permanently fix what was wrong with my body. And I believed for a very long time that permanently fixed was an option. The goal. The end point. Maybe even the fulfillment of a promise without which I was less than – not whole. And I for sure believed that giving up on this made me a quitter.
When the reality was and is that some things in this world are permanently broken. And sometimes surrender to the broken places is the ultimate goal – the end point.
That’s hard to accept.
It’s hard to see acceptance of brokenness as anything but defeat, and it’s hard to reconcile a state of acceptance and surrender with the survival instinct to keep trying to make things better. And maybe acceptance and the determination to keep fighting for something better are two sides of the same coin. Maybe that’s where hope lives. Somewhere between acceptance of the broken and painful places and an innate compulsion to keep trying to make things better. Maybe that’s where we live our best lives, too.
It seems to me that this is how the Apostle Paul lived his life.
Somewhere between the harsh realities of Romans 7…
I know that nothing good lives in me.
Who will rescue me from this body of death?
And the hope and courage of Romans 8…
We know that all things work together for good...
In all these things we are more than conquerors…
Paul was way more enthusiastic about it than I am, though. Of course, I’m guessing he’d done a lot of work to get to that place. But I’m guessing he’d also accepted that successful living in this in-between place was a lifelong work in progress.
For years now my long-suffering therapist has been trying to help me live in this space.
It’s super fun.
I hate it.
But I’m beginning to understand that good therapists (or pastors, or mentors, or friends) help us live more wholly as we journey.
It’s a subtle shift in thinking.
But it’s a gigantic shift in how we experience our often painful realities.
It allows us to mark and honor the myriad of little – but excruciatingly difficult – decisions and choices made throughout our journeys. Choices that propel us forward while at the same time acknowledging the parts that are most likely permanently fixed in a state of brokenness until the day – the end point – when all things work together for good as we are transformed into the image of Christ – the promise of heaven.
We shall be like Him, for we shall see Him as He is.
In September, I had rotator cuff surgery as well as some other painful, but necessary cleanup in my right shoulder joint.
It’s hard to write when your dominant arm is confined to a sling for six weeks.
And unfortunately, getting out of the sling only marked the end of Phase One of this journey.
So now I’m in Phase Two of a three or four phase journey.
I’ve been here for weeks.
And the length of Phase Two seems to be unknown to all.
Phase Two is hard.
It’s that in-between space that holds everything that’s in process. Nothing is done. In fact, we don’t really have a sense of how it’s all going to work out. We have to do #allthethings and feel #allthethings and be #allthethings without any sort of guarantee that #allthethings are going to be alright.
Actually, it’s the space that often redefines what it means to be “alright.” Because often, when the journey is complex and full of undesirable events and experiences, the end result isn’t actually where you had intended to land. Part of the end (Phase Three?), then, involves some sort of acceptance of the new normal.
I’ve sometimes heard this referred to as liminal space – the space between what was and what will be. Often it’s used to describe a place of expectancy and is compared to the process of conceiving a child, carrying the child through its development in the womb, and then delivering the child into the world. It’s an appropriate comparison, I think. The problem with the use of this metaphor for me, though, is its emphasis on the end result, and its tendency to forget what those nine months of pregnancy are like for most women. In my case, at least, those nine months were quite miserable.
Just a few weeks into my pregnancy with our first child, I was given a book called Supernatural Childbirth. The book is a testimony to how faith in God’s love for us and and in His power to heal us can make pregnancy a blissful experience – with no morning sickness, no pain as your body adjusts to the growing little one inside you, and little to no pain during childbirth. For the author of this book, this had been her experience, and I think she genuinely wanted every other woman to have a similar one.
I devoured that book.
I embraced the ideals she put forth as if they were promises given to me by God.
I really expected to have a pain free pregnancy and delivery.
I didn’t, though.
Instead, I ended up on bed rest at 16 weeks because I couldn’t stop vomiting and was at risk of being hospitalized. Once I got the vomiting under control – meaning I threw up once or twice a day instead of all freaking day long – I continued to fight overwhelming fatigue throughout the pregnancy, along with the typical aches and pains most everyone experiences as a HUMAN BEING grows within your body and forces it to make more and more space for it and less and less space for your internal organs. Still, I hung on to the hope that my delivery would be a breeze. I believed this was something God wanted for me. Truthfully, I embraced the idea that, as a Christian who was following Jesus, I should have access to rescue from pain and suffering in my life.
In retrospect, I’m surprised I felt this way. My life had been full of a sizeable share of suffering and disappointment – even as I tried to live as I had been taught by the church and even as I loved Jesus from an early age. I didn’t actually have any experiences that justified this expectation I had.
I think I just wanted it, so I believed I should have it.
I didn’t get it, though.
And I’m SO grateful to the labor and delivery coach who, while embracing the teachings of Jesus and intertwining Christian values in her coaching, made it clear to those of us in her class that it didn’t make sense to her to believe that the resurrection of Christ eradicated the consequence of pain in childbirth placed upon women when Eve sinned against God in the garden, when it was clear that it hadn’t eradicated the hardships that were promised to man. So when I asked her about the pain-free experience of the author Supernatural Childbirth, my coach replied with, “Kaysie, 10% of all women have pain-free or very low-pain childbirths. It’s NOT a guarantee. It’s a statistic.”
At hour 24 of a 27 hour labor, my labor coach’s teaching on this matter was very comforting to me and helped me lean in to Jesus instead of causing me to feel abandoned by Him when the waves of pain engulfed me before our beautiful baby girl was born.
And it helped me when pregnant with my other three babies, dealing with the same or worse along the way. I mean, I carried the last (and very much a surprise) baby as an almost 40-year old WITH A BROKEN BACK. That did not feel good.
I guess I say all this to say I have rarely been rescued from the pain and suffering of life in my world.
I have. But not often. And with little-to-no rhyme or reason as to why God steps in to rescue me or He doesn’t.
But of course it’s one thing to struggle and suffer while waiting in anticipation of something you’re pretty sure will be wonderful (i.e. a beautiful baby girl). It’s an entirely different other thing to wait in that same kind of space when it’s also full of uncertainty about what will come in the end.
We struggle with this, don’t we?
In a culture accustomed to solving problems quickly, satisfying needs the moment they come up, and soothing whatever lack we are experiencing by filling the void with something else we deem equally satisfactory, we are uncomfortable with holding patterns of pain and suffering.
At least I am.
The last eight to nine months have felt like liminal space to me. As a culture, Covid-19 seems to be effectively smashing our ideas around what we are entitled to, frustrating our expectations of how long something hard should last, and stretching thin our tolerance for a lack of whatever makes us comfortable.
Especially when our line of sight doesn’t extend past the end of our noses. And, let’s be honest, we all struggle to see further than that.
The season of Advent begins today. For followers of Christ, this is a time when the church collectively begins to prepare for the arrival of the Messiah. It’s a season of expectation. We spend time reflecting on the promises of God laid out during the thousands upon thousands of years that His people had to wait – in the midst of great suffering – for His rescue. Advent helps us to sit in and pay attention to the experiences we have that often mimic the pain seen over and over again throughout the history of man. And it helps us remember that rescue is coming…Jesus.
But rescue doesn’t look like we expect it to.
I can’t imagine that it looked like Mary expected it to either. Or like the disciples expected it to when they chose to follow Jesus during His ministry years.
So why does it surprise us when rescue doesn’t look the way we thought it would…or should?
It seems to me that living in liminal space – waiting in the tension between what was and what will be – is more similar to the experiences of those early followers of Jesus we so often say we want to emulate.
And it seems to me we are living in this kind of space now.
As we move into the Christmas season, I hope we can settle into the interminable Phase Two of the pandemic – not knowing how long it will last, who is going to get sick, who will experience it like a bad cold and who will lose his life from it, whether or not the things we are asked to do for the sake of our communities will work, and how much all of this will cost us in the end – with grace for one another and with a sense of hope and faith in the One who actually did come to rescue us.
In the One who knows that the rescue we really need is the rescue of His presence.
My mom often told me the story of when I was about 15 months old and had to be rescued by firemen.
It seems I had squeezed my toddler-sized head through the slats of my crib and no amount of pushing or pulling would release me from its grip.
I have zero memory of this event, but after so many retellings of the story, I find that I can imagine what it must have been like for baby me in those moments.
I can take an aerial view and see myself trapped in what was meant to be a place of rest. I can see me screaming and inconsolable while my mom did everything in her power to release me. I can see her crying and saying my name over and over and over again – “Kaysie! Kaysie! Oh, baby, hold on! I’m so sorry! I’m going to call for help!”
I can feel the fear explode in its intensity and take over my body.
And I can imagine terror really setting in as strange-looking men came in to rescue me.
The whole thing probably lasted about 30-45 minutes, but I’m sure to both my mom and to me it felt like an eternity had passed by the time the firemen cut me out of that crib.
With the crib now destroyed, I was moved to a big girl bed…which I’m guessing I was all for. I have always preferred wide open spaces, and regardless of its actual purpose, I can imagine that the crib made me feel confined rather than secure. The vastness of my new bed, while also rife with its own share of complications (Hello alligators living under big beds just waiting for your feet to hit the floor, so they can grab you and pull you under…amirite?), made me feel one step closer to being all grownup and FREE.
I was pretty confident that adulthood came at the age of 18 (🙄); that it would provide me with all the freedom I craved; and that it would allow me to escape from the responsibilities and burdens of being my parents’ daughter. In fact, I so looked forward to this time that I announced my departure plans to my parents at the age of five. I thought it was a pretty solid plan.
I’m going to move at least 750 miles away from my family – probably to Liberty University so I can sing with the traveling ensemble there.
You guys, I was a baby. A teeny, tiny indoctrinated Southern Baptist baby. Don’t judge.
I bet that was hard for my mom to hear. Hopefully, my charm and precocious nature made up for my lack of tact.
I’ve written a lot here and here and here about the kinds of childhood experiences that surely contributed to this longing to escape, but I can see now how I set myself up for great disappointment.
As an adult hanging on to childish notions about autonomy, it’s oppressive and isolating to experience limitations – to feel like my wings are clipped just as they’re about to spread wide open because my circumstances keep me trapped and unable to live my life freely.
I’ve had a lot of independence as a grown-up girl, but the vast majority of my experiences with freedom have come from internal states of heart and mind rather than from my circumstances. In fact, when I’m unable to access freedom despite my circumstances, I’m unable to experience freedom in any circumstance.
Unless I choose to define freedom in some other way.
In July of 2007, I found myself trapped in Houston.
A week had passed since the day Molly and I attempted to drive dad back to Tulsa following major surgery at MD Anderson…only to find ourselves right back there as dad was re-admitted for Methicillin-resistant Staphylococcus aureus (MRSA) – a highly contagious staph infection resistant to many of the antibiotics used to treat infection.
My brother had flown in to join me, and we spent our first few days there walking the halls, visiting Dad in his isolation room, and asking #allthequestions of the doctors, but never getting any real answers. Finally, we decided it was time to take matters into our own hands. We both had families with young children at home, spouses shouldering it all on their own, and Patton needed to get back to work.
We couldn’t afford to be stuck in Houston indefinitely.
But discharge from the hospital was nowhere in sight.
And the staff of doctors treating my father couldn’t seem to get on the same page in order to make a united decision on when and how to release him.
I think everyone was tiptoeing around for fear of some sort of liability after the disastrous discharge we’d experienced before.
But we didn’t have time for that nonsense. We needed to go home.
Dad was better. I mean, he was better from MRSA. He was still a very sick person, but he was getting stronger. Patton and I felt pretty confident that he could withstand the drive back to Tulsa, and his doctors at home were ready to take over his care.
And still the staff at MD Anderson avoided a decision.
Plus, my dad was living his best life – waited on hand and foot by nursing staff, both of his children there, visiting him dutifully, and responsible for his care. He wasn’t in a hurry to go anywhere.
It felt like I was destined to be trapped in my father’s brokenness for decades to come. I believed freedom lay in one of two outcomes – with my dad’s death or with my choice to cut him off completely.
My brother and I called for a meeting. We asked for the entire team to be present because from our perspective, the real problem was that there were so many various doctors caring for our father – oncology, pulmonology, cardiology, infectious disease, speech and physical therapy. It was a long list because pretty much every bodily system in my father was the squeaky wheel trying its best to get all the attention. We all gathered around a conference table in a painfully bright hospital room, and Patton and I insisted they work together to come up with a discharge plan or – if they felt dad needed to remain in the hospital – a transfer plan to a Tulsa hospital.
It must be hard to work in a cancer hospital, constantly confronting death with grit, hope and persistence in the face of formidable odds. It must be hard to accept defeat when the inevitable is upon you – upon the patient you’ve been trying to save. It must be hard to acknowledge when death is winning the fight.
I know it is.
I’m confident my father’s medical team was deeply committed to continue fighting for him to live and not die. It also makes sense that sometimes doctors feel trapped by the fight for life when death is actually the more humane choice. Oh, how we needed just one of them to tell us that we could shift out of fight mode and into release mode- to tell us we wouldn’t be trapped there forever.
As it was, dad’s medical team was convinced that they had saved him, and all he needed now was time to recover. They also had no idea that their belief that he would recover and continue to live was devastating to us. It didn’t instill hope. Only dread.
This promise of recovery bestowed upon us felt like a death sentence to me. I knew that whatever recovery he achieved would be fraught with pain and suffering – physically, yes, but the real pain lay in the sickness of his heart and mind.
And even though the little girl in me still hoped her dad could become whole and healthy here on earth, the grown-up me knew it was never going to happen.
God – ever the Gentleman – would never force Himself or His ways upon us, and my dad was not going to be the exception to this rule. Dad had been given more opportunities than most to turn his life around, and he just could not do it.
This was a devastating conclusion, especially in light of the medical team’s promise of more life for dad. More life for dad felt like it meant less life for me.
Friends, that is a horrible space to live in. I don’t recommend it.
I sat in that meeting with dad’s team of doctors and felt the familiar weight of unwanted responsibility wrap itself around me.
I felt trapped.
It took all of our powers of persuasion, but we were able to convince the medical team to allow us to take dad home to Tulsa. I was given a crash course on changing dressings and IV bags. The sweet nurse who taught me all the things deserves an extra set of jewels in her heavenly crown for putting up with the sudden onset of childish behaviors from Patton and me (mostly Patton, of course). We collapsed into hysterics as practiced the procedures for dad’s care on a medical dummy and were reminded of all the mischief we’d created with tongue depressors, ear and eye examination lights, and gauze and bandages when we played doctor within the various doctor offices we’d found ourselves stuck in through childhood and adolescence.
Or maybe she understood that it was better for us to laugh than to cry because once the tears started, we were afraid they would never stop.
Either way, I was grateful that she was cool with it. I felt more at home as a child in the situation than I did as my 38-year old self. My child self had lots of experience with those feelings of entrapment…and still believed they would go away at some point.
A couple of days later we drove dad home to Tulsa, and Patton flew back home to Colorado. Life became consumed with raising my three children and taking care of the ongoing needs of my dad…and I often found myself struggling against the chains of these responsibilities.
Thankfully, I had people in my life who reminded that freedom was possible even in the midst of great burdens. Even with a life filled with constricting circumstances.
I can experience rest in whatever place I find myself by leaning into the One who is my refuge and my strength.
It wasn’t nearly as pretty as that last sentence makes it sound. It was a season filled with heartache, disappointment, exhaustion, anger, frustration and enormous stress.
Honestly, much of life feels designed to keep us constrained. It feels like the slats of your crib are only there to keep you in your place, and you forget that you are standing on an actual bed complete with mattress, sheets, cozy blankets and maybe a stuffed tiger or a Pooh bear.
Freedom comes when we shift our perspective and remember that even when we are trapped behind the bars of our circumstances, God’s design includes a place of refuge in Him where we can lay down and rest.
They say hindsight’s 20/20. I think this means that our past experiences are meant to inform our present ones. Maybe they are right – whoever they are, but this happens only when we allow ourselves the occasional glance in the rearview mirror. This is a scary thing to do because even though the mirror isn’t showing us anything we haven’t seen and places we haven’t been before, it’s also showing us an image of our selves in the present moment. And that can be confusing.
We might see pain and death and devastation in that rearview glance, but we are also seeing the living, breathing survivor of a person that made it through whatever was back there – and has all kinds of strengths and insights because of those experiences.
I’m learning to let myself take in both – the past and the present.
On a bright, sunny Saturday morning in July of 2007, my phone rang before I was even fully awake. When I picked it up, I heard my mom’s voice – shaky, desperate, distant – “Kaysie, I need you to go get your father.”
It was the morning of my daughter’s highly anticipated tenth birthday party. We had planned a city-wide scavenger hunt for her, her friends, and our friends who were the parents of her friends. It was going to be a blast and perfect and exhausting.
And it was.
But in the midst of the joy of Morgan’s birthday celebration, I now carried a sober reminder that the burden of my father was still very much mine.
Dad was back in Houston – in the hospital at MD Anderson after the surgery that was supposed to extend his life. The surgeons carved along the length of his neck – from his ear down to his sternum – in order to remove the cancer that had metastasized there. They also took much of that ear. They were ready to release him a week later, but refused to do so without a family member present at discharge.
By this time my parents were officially divorced and, even though my mom and aunt accompanied him to Houston for the surgery, they only stayed a few days before heading back to Mississippi. It was all my mom could bear.
My dad literally had no one.
Except reluctant, but dutiful me.
As soon as I hung up the phone after my mom’s call, I turned around and called my friend, Molly, and said, “So I need to ask a very big favor of you.”
God bless Molly. This friend has stayed by my side throughout this wild ride life has had me on – sometimes even getting on the ride with me. There aren’t many better evidences of the love of God in my life than my friendship with Molly Baker Olsen.
“What’s up?” she replied.
“Soooooo…will you go to Houston with me this afternoon to help me bring my dad home?”
“Yep. The hospital says they’re discharging him, but I have to be there to pick him up. And it has to happen today.”
“Well, okay then. Let me pack a bag. We can leave right after Morgan’s party.”
She didn’t even miss a beat.
See what I mean?
Plus, I promised her a lovely kolache breakfast the next morning before we left Houston.
Kolaches are balls of pastry dough stuffed with things like fruit or sausage, cheese, and potatoes. I was introduced to them the month before while in Houston with Keek and my dad for all of his preliminary tests at MD Anderson, and I thought they were delicious and worth a stop before we hit the road to head back home.
So after Morgan’s fabulous scavenger hunt – and the two hours of driving around Tulsa that the party involved – Molly and I headed to Houston. We were still about two hours away at 8pm, when the hospital called to tell me that they were going to go ahead and discharge my father, put him in a taxi, and send him to a hotel of his choosing. We could just meet him there.
I guess they were done with dad, too.
Around 11pm, we pulled into the parking lot of the motel my father had chosen for us to stay in that night – a run down, dump of a place with LITERAL DEAD ANIMALS in the parking lot.
Not even kidding. As Molly and I were unloading the car, a sideward glance revealed an unfortunate feline way past rigor mortis and well into full-on decay. We may or may not have screamed and jumped into each other’s arms. Don’t mock. You would have done the same.
For the love. And again, God bless my friend, Molly. I’m a pretty confident person, for sure, and ready to take on challenges as they come. But I’m also quite confident that one of the few things I simply cannot do is walk past a dead cat alone in the middle of the night.
I was wholly unprepared for the way my father would look when we arrived. Much of his ear was gone and even with the dressings on it was clear the work the doctors had done was extensive and invasive. Dad was happy and relieved to see us, but I think also embarrassed that Molly was there – however much of a help she was to me – and that we had to come get him. He was also heavily medicated and not making a lot of sense.
And we were exhausted, so we all went to bed.
And I tried not to think about that dead cat.
The next morning as we prepared to head back home to Tulsa, I knocked on dad’s door to let him know we were packing up. He mumbled something unintelligible, then opened the door. His face was flushed, he was pacing the hotel room, and he was mumbling incoherently. It was clear to me he was unwell, but when I called my mom and described dad’s condition, she told me to give him some Tylenol and head home where his doctors in Tulsa could care for him.
She was so done with my father. She could only see him in the rearview mirror with all the pain and hurt he’d caused and forgot that the present was there as well – a present moment that included a daughter shouldering the burden she’d left behind.
I get it now. Looking in the rearview mirror. But in the moment I just felt quite abandoned by her. And I also still really wanted to be a dutiful daughter.
Talk about conflicted.
Not knowing what to do differently in that moment, we medicated dad, loaded him up, and prepared to head back home…but first we stopped for a much-anticipated kolache breakfast. #priorities
It was an unfortunate choice. In fact, I will never be able to eat kolaches again for the remainder of my days. You see, when we sat down to eat, my father made his best attempts at eating the sausage, egg and cheese kolache he had requested, but his mouth just wouldn’t work. Or maybe his swallow reflex. Or maybe his brain. Either way, he put bite after bite methodically into his mouth while Molly and I watched those bites fall right back out again. Our previously ravenous appetites were obliterated, and we quickly became repulsed by the food in front of us and very concerned about getting my dad home as fast as possible.
After loading dad into the backseat of the car, I got behind the wheel and, before heading towards Tulsa, made sure my father was in my sights through the rearview mirror.
Then I turned the car towards home and tried not to think about kolaches.
As we drove through Houston and made our way to the suburbs on the north side of town, my father began to sink lower and lower into the seat. I asked him questions in an attempt to keep him alert, and his responses became less and less grounded in reality. In fact, in full view of downtown Houston, dad said, “I’ve always loved this city. San Francisco is really beautiful.”
And I began to cry.
It seemed pretty clear from what I could see in the rearview mirror that my father was dying and we wouldn’t make it back to Tulsa before he breathed his last breath. But I didn’t know what else to do, either. I was my thirty-eight year old, present moment self driving the car on the complex highway system around Houston – knowing full well we were in danger and needed to turn around. Yet there was an eight-year old part of me in the reflection screaming, “But Mom said…!” That eight-year old was very familiar with all of the ways dad had used his various health issues to hold his family hostage. She had also endured the exhaustion that came with one not-so-much health crisis after another. And because she couldn’t separate the past from the very real crisis of the present, she also believed that Mom knew best how to handle these things.
She was wrong.
So as I drove and watched my father began to slip away in the rearview mirror, I simply cried while those two parts of me – the present part and the past part – slugged it out.
Until Molly said I should pull over.
Thank You, God, for Molly.
We pulled into a Target parking lot on the outskirts of Houston, and I called my mom. Again, she told me to give dad meds and keep driving him home. I went into Target while Molly watched over dad and bought a thermometer, a blanket and some ibuprofen… and then I took dad’s temp. It was 103 degrees and climbing. He was delirious at this point, unable to sit up without assistance, and mumbling incoherently.
So I called my mom. Again.
And this time I heard the irritation in her voice.
“Kaysie, he’ll be FINE. I don’t know what else to tell you. I mean, you just need to keep driving and get him home.”
But I knew in my gut that if we did that, my father would be dead before we reached Tulsa.
In the back of the car.
So in desperation I called my friend, Kathy – a kind of surrogate mom for me during this season of my life. Again, I have the best friends. Kathy listened to me describe the situation and, without hesitation, recommended that I take my father back to MD Anderson.
I knew she was right.
But I didn’t want to do it. I wanted to listen to my mother, to trust that she was counseling me well because she was the grownup…and to get my dad home. But with Kathy in one ear and Molly in the other, I was able to gather up my grownup self and turn us back to Houston.
When we arrived at the emergency room of MD Anderson and the attending physician pulled open my father’s shirt, the problem was instantly clear to all of us. From the incision down his neck – like the tendrils of the root system of a tree – was a streak of red inching its way to my father’s heart.
Dad was immediately placed in ICU. He had contracted MRSA – a serious staph infection – in his surgical wound, and it was quickly making its way to his heart.
My adult self was very grateful we’d turned the car around.
My child self was completely bewildered.
Molly and I found ourselves stuck in Houston with one day’s worth of clothing and toiletries, no place to stay…and my father’s brand new credit card. Dad, in his time of need, was suddenly generous toward us and gave me permission to use his card to get a hotel room and whatever supplies we needed.
This is the only time in my thirty-eight years of knowing my father that he freely gave me money.
The. Only. Time. I remember asking him for the money I needed to participate in a church choir activity when I was fourteen. A church activity in which, by the way, he had demanded I participate. I sat in the backseat of the family car as we drove home from church – paralyzed by the fear I felt over how he would respond to my request. Unwanted tears streamed down my face when I finally worked up the courage to ask. And my fear was warranted. My family sat in strained silence in the driveway. No one dared to move. My father became furious in an instant – seething really. Dad was always tight-fisted with the little money we had…unless he was at the local bar or wine and liquor store. His response to my request was to rage, to call me selfish and ungrateful, and to sum up our financial problems by pointing the finger at me.
So it was an uncomfortable feeling for me to take that card.
I wonder if he ever allowed himself a glance in the rearview mirror. Did he see me sitting there crying? Did he see my reflection as his own painful childhood and forget that he was actually in the present?
For my part, a glance back to this moment can cause me to flood with other similar memories and feelings that make me feel altogether unworthy of care. This is why that rearview mirror glance has to be done while remembering that what I see there is in the past, and the truth is that the present is full of all kinds of ways I am loved and cared for.
My dad couldn’t do that.
As a grown-ass woman (and with some coaching from my husband and my brother), I was able to embrace the idea that paying for #allthethings in Houston was the very least my father could do. Molly and I booked a lovely room in the hotel connected to the hospital – with a king-sized bed and the softest sheets in the world.
I still dream about those sheets.
We went to Target and bought some necessities (like underwear, comfy sweatshirts and chocolate).
And we bought ourselves a very necessary latte at Starbucks – the first of many we would consume over the following days.
For the next four days we walked the halls of MD Anderson in between the very involved visits to my dad’s room. Because he had MRSA, visitors were required to don the PPE provided by the hospital. Surely in the pandemic-y world that we now live in, we all know what PPE means but, just in case…those letters stand for Personal Protective Equipment.
Putting it all on was quite the process. At the door to dad’s room was a bin containing yellow disposable gowns, latex gloves and masks. We covered ourselves with #allthethings – which took almost as long as the visit that followed…because, truthfully, sitting with my father wasn’t at the top of the list of things I wanted to do.
By the third day it was clear my father wasn’t going to be getting out of the hospital anytime soon…if ever. Mark was home with our three kids – managing #allthethings with the help of our friends, but he was stretched thin trying to juggle it all. And as much fun as she was clearly having with my very sick father and me, Molly needed to get home to her family – but she was unwilling to leave me in Houston alone.
So I called my mom again and asked for her help.
That was a hard phone call.
Mom refused to come to Houston and take over. Or maybe Mom couldn’t come to Houston and take over. She had nothing to give to my father. And she was terrified of becoming trapped by him so soon after finally getting free. Either way, this boundary she set made a whole lot of sense to me…and it also cost me and my family so much.
I also know she regretted the choice she made for the rest of her life.
And this makes me sad.
You see, my father told my mother on the regular that if she ever left him, he would die.
He said it when reeling drunk; he said it when jobless and without the means to take care of us; he said it when overcome by remorse and self-pity and fear that she might leave.
He said it to hold her captive.
And he must have meant it, because that’s exactly what happened.
Anyway, since Mom wouldn’t/couldn’t come to Houston, I asked her to go to Tulsa to help Mark with the kids. This she was willing and able to do.
My next phone call was to my brother. We’d been talking throughout the whole ordeal, of course. He had been advising and supporting me throughout the whole ordeal, but Patton had also set a boundary with our father in the months leading up to the final dissolution of our parents’ marriage, so he’d intentionally not been in contact with or available to dad that summer. But when it became clear that I was in over my head and needed him, Patton booked a flight to Houston.
The next day I traded Molly for Patton at Houston Hobby Airport. I cried tears of gratitude when I said goodbye to Molly and cried tears of relief when my brother arrived and wrapped his arms around me. As Patton and I headed back to MD Anderson, I felt myself settling into a space very familiar to and comfortable for me – the space in which my brother and I could take on the world…or at least could take on the world of our father.
Both my thirty-eight year old and my eight-year old self felt much better in this space.
Growing up I had a romanticized perspective on fatherhood.
Not because of my own father.
He was less than ideal and because of this, I spent a great deal of time painting pictures in my mind of what a father should be. I took copious notes from my observations of the other fathers I was around and believed that if I worked hard at it, I could do one or all of the following:
Teach my father how to be a father.
Make up for the lack in my father by taking the helm in the family as much as possible.
Cultivate relationships with father-figures to try to fill the father void in my life.
I have a ridiculously strong work ethic but, friends, these were impossible expectations.
First of all, clearly a daughter cannot teach her father how to father. I can say this with confidence since I spent much of my life attempting to do this. It does not work.
Second, a daughter cannot be the father of a family. Neither can a son, for that matter. I have some experience in this area as well since more than once I have nearly destroyed myself in my attempts to accomplish this impossible task.
Third, father figure relationships can be a good and healthy thing – I know – but they cannot undo the pain of an absent and disconnected father. And they cannot erase the shame that is a by-product of abuse. Father figures can sometimes help soothe and heal parts of us, but the impossible ask is that they might erase the reality that the bad father existed. Plus, often those of us who have not experienced the faithfulness of a good father don’t really know how to pick trustworthy father figures. Again, speaking from experience here. Some of the greatest devastation in my life has come as a result of the expectations I put upon someone who was as human as we all are, and so I was deeply disappointed when he was unable to live his life any more successfully than my father.
But I didn’t know these things as a child. And, truthfully, I haven’t known them very long as an adult.
It’s crazy how the things we know and believe as children can be so hard-wired into us that it takes a lifetime of intention and hard work to disconnect from them.
And you have to become aware of them in order to do the work necessary to be free of them. That is in itself a great challenge. Hence, #allthetherapy
For my part, awareness has only come after periods of great desolation and devastation. Which sucks.
I guess I’m just super stubborn.
A few months before he died, I took my father to MD Anderson in Houston, TX so he could be considered for an extensive surgery to remove a tumor from his neck as well as the source of the tumor – metastatic melanoma of the ear. These were the days when I was still embracing those beliefs listed above, so I was extra irritated and exhausted by the ongoing challenges of life with dad.
It’s much harder to be present with someone when still stuck in the muck and mire of the pain they cause.
Thankfully, my people know this about me, so Keek, my best friend from college, traveled to Houston with dad and me.
I have the best friends ever.
We spent a full week in Houston as my dad went through test after test (and Keek and I learned to crochet). Finally, in a meeting with the surgeon’s PA to go over some of his medical history, my father was caught in a lie that threatened to change the course of the medical care he believed would extend his life (it did not, btw). When asked by the PA whether or not he consumed alcohol, my dad – without batting an eye – looked that doctor right in the eyes and said, “Oh no. I haven’t had alcohol in a very long time.”
This happened while I – the daughter who had talked him out of another drunken, suicidal mood swing just two days earlier – was SITTING RIGHT THERE NEXT TO HIM.
I looked at him with incredulity. He caught my eye, and though his cheeks flushed a bit, he remained quiet when I blurted out a “Oh hell, no. Seriously, Dad?”
That poor PA.
His eyes darted from me to my dad and then back to me. Bless him. But I didn’t allow silence to linger long before I followed up with, “Dad, seriously? You were drunk two days ago! You drink every day and all day.”
Then I looked at the PA and said, “My father is an alcoholic. It’s a problem.”
What followed was a string of questions and a full psych eval… before the team there still approved dad for the surgery. Honestly, I think they were jazzed to experiment on a willing subject and weren’t all that concerned about the wealth of addictions contributing in no small way to his overall health.
But what do I know? #eyeroll
After that particular appointment, as we stood in the lobby of the hospital waiting to hear what we were to do next, my father hung his head before me and said, “I’ve been a horrible father.”
I didn’t try to talk him out of this. Sometimes it’s necessary to let the truth – however ugly – just be there.
And somehow letting that truth just be there allowed me to loosen my grip on whatever remained of my hope that I could change my father… or that he would ever really father me.
Growing up I wasn’t taught about God as Father.
At least not as a Father to me.
I knew him as the Father of Jesus – the One who sent His Son to save me from my sinful state; the One who sent His Son to die to make sure I had access to heaven; the One who loved me but was mostly unapproachable from this broken planet; the One who wouldn’t fully embrace me until we see each other face-to-face… because that is when He will make me whole and worthy of His embrace; the One I should turn to for help in my times of need, but also the One who didn’t seem to show up in those times much more than my dad did.
Harsh, I know.
I’m not saying I was right. It’s just what I knew and believed as a child. These beliefs then did their work of shaping my way in the world.
And they have set me up to be endlessly disappointed and devastated.
But here’s the thing: It’s taken devastation to do the work of stripping away the mistaken beliefs and the faulty wiring before truth is able to make its way into my heart and mind.
And maybe what actually happens is that the strength of these mistaken beliefs is diminished rather than that they totally go away, while the truth gets louder and drowns out the noise of brokenness.
Because I don’t really think those deep-seated beliefs ever fully disappear when they were established at such a young age.
Yes, this is discouraging.
But then there are the moments where truth breaks in and gives me the strength to keep going. And the more I lean in to truth, the more Father-like God becomes to me.
He is present.
He is faithful.
He is kind and compassionate.
He is love.
My earthly father died less than six months after that trip to Houston.
And honestly, I’m not sure I’ve ever felt more fathered than I did during those last brutal hours caring for my dad.
Not by him.
Instead, by the One who has always been present for me as Father even when I was unaware of it.
And now when God fathers me and shows me the truth of who He is, I try to sit with this awareness – to tell my broken beliefs that they are just that… broken – and then to just let the truth be there with us.
Yesterday, as David and I were taking a bit of a walk around the neighborhood, we came upon a front lawn covered in dandelions. Now, I know that the dandelion is considered a pesky weed by those who spend a lot of time and money cultivating pristine landscapes, but…
You guys, dandelions make me smile.
I have many warm childhood memories of sitting on a grassy expanse of yard, surrounded by those little puffs of white on the dandelion stems. My friends and I spent many a lovely afternoon laying on the grass – reveling in the approach of spring – and pulling dandelions up so we could blow the seeds into the sky.
And, yes, this made my father crazy as the dandelions spread and their yellow heads popped up all over the lawn that somehow was a measure of success and class for him.
We did it anyway.
Those weed flowers called to us as we ran barefoot in the grass after a winter of forced confinement for our feet. My mom’s rule allowed me to forego shoes as soon as the grass began to turn green, and from that time until the return to school in the fall, shoes were worn only when going to church or the store.
We also loved to pick the yellow dandelions, hold them between thumb and forefinger, and then pop the heads off in an attempt to hit one another in the eye with them.
Don’t ask me to explain this.
Boredom can be the breeding ground for works of genius.
It can also inspire epic dandelion wars.
I taught my older children (the Big Three that are now 22, 20, and 19) about all the wonders of weeds as playthings. We spent a lot of time wandering, exploring the woods, camping, playing and just being outside, so there were plenty of opportunities for dandelion wars.
And dandelion wishes.
But David, our youngest by eight years, has grown up during a period of my life that has been full of surgeries, illness, long recoveries, diagnoses, lots of therapy, great loss, and a necessary shift in the way we live as a family. Unfortunately, this has meant less time outside for David.
And zero opportunities for learning about dandelions.
So the dandelion-covered lawn was a great curiosity for him.
I showed him how to pop the heads off (he thought that was ridiculous), and I showed him how to make a wish and blow the seeds off the stem (shhhhh.. don’t tell the neighbors).
He was fascinated. We both made wishes as white fluff floated all around us. It was a lovely moment.
As we walked back home, he said, “Mom, if I make a dandelion wish for coronavirus to go away, would that work?”
“No, buddy. That won’t work,” I replied with more than a hint of sadness.
“I wish it would work,” Davy replied.
“Me too, buddy.”
And then, after more silence than I like to admit (because I always have to fight pessimism before I can move into faith), I added, “But we can always pray.”
“Yeah. We can do that,” Davy agreed, and I could hear in his voice the sober acknowledgement of a truth that can be hard to swallow.
We can pray. We can ask God to miraculously take this pandemic away.
But God isn’t likely to do that.
Could He? Sure. History is full of accounts describing miraculous events.
So He could.
But history mostly shows us that in the midst of great suffering, God is near.
And that is actually the greatest miracle.
Many fellow sojourners in the Christian faith won’t agree with me here, and that’s okay. I don’t think we need to see eye-to-eye on this in order to both love and follow Jesus.
But for me, faith increases when I focus on my hope that He will meet me in my pain. And since faith is a gift from God, I figure He’s got a hand in that process.
So I’m going to continue to teach Davy, and model for all of my children – as well as for anyone else who cares to watch, that God is just as big when He helps me trust Him in my pain as He is when he takes that pain away.
I’m also going to continue making dandelion wishes – finding beauty and happiness in what is so often seen as flawed and unwanted.
I’m a good nurse. Maybe not so much the warm and cozy kind of nurse, but certainly a comforting one. And I really excel at taking charge of the crisis at hand.
This may or may not always be appreciated. Personally, I think my instincts are pretty good, but you’d have to ask my children to know for sure. Lord knows I’ve spent many an hour and #allthemoney at our nearby urgent care, so I’ve had plenty of opportunities to practice. Hopefully, my kids have (mostly) experienced me as a comfort to them when they are hurting.
A safe place to run to when knees are scraped or tummies are upset or body temperatures rise with fever.
I’m confident I haven’t walked this out perfectly, but I think I have managed to be (mostly) present for them when they are hurting and unwell.
It’s okay. You can ask them. They all know their first therapist is on me.
Here’s the deal, though: I do much better with their physical injuries or illnesses than I do with their emotional pain. If one of them is angry, withdrawn, sullen, sad, lonely, bored, or whiny…well, my patience for meeting them in those places can be pretty thin.
The truth is, when it comes to emotional pain, I am often only as good at comforting my children as they are willing to be comforted.
I’m not putting this dilemma on them. It’s my issue, not theirs.
Okay, I’ll admit, I have at times put this on them.
We had our fair share of “Go to your room until you’re calm, dry-eyed and done whining, and THEN we can snuggle and I’ll comfort you and all will be well again” moments.
I’m not proud of this.
I also see how my own childhood shaped my perspective on pain, the expression of pain, and the resolution of pain…in turn causing me to repress my pain and attempt to repress theirs.
I’ve worked hard at noticing this in myself and then – when I do notice it – shifting to a different posture for them. A posture of love, compassion and kindness. One that allows them space for what they are experiencing.
I know what I’m supposed to do to do this. I’ve read all the books. I’ve sat under all the teachers. I’ve done SO MUCH freaking therapy.
But those damn feelings often still scare all the good sense out of me.
It’s very difficult to hold in my awareness my own fear and discomfort while also opening myself up to warmth, presence and patience on behalf of my children. I am still prone to lean hard into thinking and to push away emotion. It often feels like my arms aren’t big enough or strong enough to hold #allthethings at the same time.
But I’m getting better at it.
It’s tricky stuff. It’s like working out…only with your heart.
A feelings workout, if you will.
And I hate working out.
But parenting is not for the faint of heart.
I think the crux of the matter – at least for me – is that I often feel threatened in the presence of emotional pain – mine or someone else’s. And when I feel threatened, I tend to shut down.
Or maybe it’s more accurate to say that when I feel threatened, I tend to use one easy-to- access emotion to contain all the other much more intimidating and difficult-for-me-to-hold emotions.
Now, when life is fairly balanced and I’m managing #allthethings pretty well, I can move through anger and into some of the other emotions associated with the moment. I can be sad. I can be excited. I can be frustrated. I can be disappointed.
But when I’m stretched and tired and struggling extra hard with chronic pain – or when I’m trying to wrap my head around a global crisis unlike anything I’ve experienced before (Yes, I’m talking to YOU, COVID-19) – well, then it is much more challenging for me to identify, embrace and move through all the big feelings that are surging within me.
Interestingly enough, our ten-year old son, David, also expresses all of his difficult emotions by summing them up into one, easy-to-access emotion.
Bless him. He may have inherited this from his mother.
I’m not saying that he did. But maybe.
When he’s frustrated, he’s mad.
When he’s disgusted, he’s mad.
When he’s disappointed, he’s mad.
When he’s sad and hurting, he’s mad.
And while – if I work very hard – I can have some success containing my anger within my own self, David is (yet) unable to do that. Instead, he spills his anger all over whoever might be closest to him.
That’s usually me.
And guess what? When #allthethings get to be too much for me, my anger rises to meet his anger… and it’s not pretty.
It has been ridiculously hard to teach my child how to move through anger to the myriad of other emotions available to him when it has never been a skill I had for myself.
David is also autistic, which often makes it that much more difficult for him to communicate what’s actually going on within him. So instead, all that he is experiencing comes pouring out as unbridled rage.
It’s taken ten years, a whole lot of therapy for both of us, and so much practice for me to be able to help him identify and express a wider range of emotions. He’s come very far. We both have. And we are grateful – HE is grateful – but we also know that autism will likely always color his emotional expressions. We can’t therapize this out of him (nor do we want to). Instead, we can teach him how to access the array of emotions available to him and then how to communicate them to safe others.
Of course, doing this has required me to expand my own thinking and understanding around these very-hard-to-wrap-my-head-around emotional complexities. It’s also required a great deal of intentionality.
Isn’t it interesting how God takes #allthethings that are hard and painful in our lives and uses them to heal other hard and painful things in our lives?
I’ll give you an example from last night.
As part of our shelter-at-home coping strategy, our family is having a Steele Family Film Festival – Quarantine Edition. We’ve enjoyed many film festivals over the years – held during the kids’ spring breaks, summer breaks, or even in the fall leading up to the holiday season. We take great care with our film choices and have shared many films that have great meaning for us, as well as ones that are just super fun.
Story is the language of our family, and film can be an extraordinary story-telling device.
To start off the quarantine film festival, we introduced David to The Dark Knight series.
I know, I know…It’s dark for a ten-year old. It’s dark for me. But David has a fascination with all the dark things, so we’re trying to steer that as well as we know how.
Did I mention parenting is super hard?
Anyhoo, we started the movie kind of late so we made sure David understood we would only be able to watch part of it before bedtime, but we would finish the rest the following evening.
Despite this prep, he became angry when it was time to turn it off. Of course he did. It’s hard when someone tells you you can’t do what you want to do. That’ll make anyone mad.
But, because David had been shoving down all the feelings he was having about the pandemic, the Dark Knight anger became bigger and bad(der) than what was warranted for the situation.
Like, he began refusing to start his bedtime routine, throwing blankets and couch pillows, writhing on the couch and floor, and growing more furious by the second.
It was more annoying than anything. We’re all pretty much over #allthethings.
This Shelter at Home stuff is no joke.
His frustration over the limits we placed on him collided with his fear over the possibility that he or someone he loved would contract the virus, and then those very intense feelings attached themselves to the great sadness in his heart over the abrupt end to the school year and the loss of connection with his friends.
(Side note: this is my personal perspective on what was happening, for sure; but it comes from years of studying my son, immersing myself in his world and in how he thinks and feels things. I’m a Davy Detective, if you will. It’s quite the gig.)
But despite my awareness of what was really going on with the meltdown, no amount of coaching, directing, soothing (don’t you dare try) or coaxing was changing the situation. Instead, Mark and I found ourselves becoming more and more agitated…and feeling big angry feelings as well.
Thankfully, we managed to stay calm and firm. But David was unable to, and he refused to be comforted or soothed in any way.
This is our normal, friends.
“So what do you do to help him then?” you might ask.
Well, therein lies the problem.
Because the thing is, you can’t really do anything.
It’s a very helpless feeling to be the adult in the room with a hurting child and have nothing to offer that will soothe the child’s pain.
It’s helpless and it’s frightening and it’s very humbling.
Thankfully, I’ve been learning another way.
It’s super hard, though. Like, so very hard.
Because this other way has nothing to do with helping him solve his problem (I can’t) or coming to him with words of encouragement or a comforting touch (Dear God, NO. Do not do this).
This other way is to just “be” with him.
To just be with him in the midst of whatever yuck he is experiencing.
So, I’m learning to sit with him. I’m learning to sit with him as he moves through anger to sadness to grief (which actually feels so much harder than just plain ol’ anger), and then eventually to acceptance.
I don’t know about you, but the metaphor here is screaming at me.
When I can sit down with David in the hard spaces that are thick with emotion – when I can give my presence fully over to him in that moment – that’s when the calm comes.
I mean, not immediately.
It takes time – usually more time than I want to give.
But the calm does come.
And in that moment, I get a glimpse of how good God is to sit with me in my darkest, most confusing and most overwhelming moments – when all feels lost and so far beyond my reach.
And suddenly – when I remember that I am not alone – the calm comes.
I was nine months pregnant with David in May of 2009 when Jackson tested positive for swine flu (H1N1 – the pandemic at the time).
Morgan came down with it a couple of days later.
The rest of the world was on alert, but most were still able to go on with their lives. Our family, though, was quarantined for the better part of two weeks. Then, when I (FINALLY) went into labor with David, the kids weren’t allowed to come see us – to meet their new baby brother. Our doctors kept us in the hospital for a few extra days to try to protect Baby David from exposure to H1N1 since that particular pandemic was especially hard on youngsters. It didn’t help that the little guy had some initial challenges managing his blood sugars and so was admitted into the NICU for a time.
It’s still kind of a sensitive subject for the kids that they have friends and cousins who met their new brother DAYS before they did. I guess we didn’t think that one through very well. Oops. The truth is I was pretty much white knuckling my way through #allthethings at that time. I kept at a distance all the anxiety, fear, and pain that were very reasonable responses to the situation. It was too much for me to embrace, so I pushed it away and did what I had to do to get through.
It’s my tendency to tackle life this way and, even though it’s not really effective for the long haul, this approach has often bought me time when I needed it.
The swine flu incident wasn’t our first family quaratine.
When Charlie was five, he was swimming at a local water park, got kicked in the eye by a fellow swimmer…and contracted herpes.
In his eyes.
I’ve not even kidding.
It turns out chorine doesn’t kill #allthethings.
And it turns out that herpes in the eyes is serious…and seriously contagious.
No one wanted to be anywhere near us – especially when they heard little Charlie had tiny blisters all around the rims of his eyes, on his eyes, and inside them – on the retinae. We understood the need to stay away from all the people because we were experiencing the impact of the disease firsthand. But it was still hard. And lonely.
It was kind of scary, too. Doctors were concerned he would lose his sight, so we hit this particular virus with everything available to us. He took oral anti-viral meds for weeks, and three times a day we had to treat his already owie eyes with burning, stinging eye drops. Two different kinds. It was all-consuming, very scary and isolating for all of us, and extremely painful for Charlie.
Except for the daily visits to the ophthalmologist (seven days a week for two weeks), the kids and I spent a solid month stuck at home, and I spent most of my time cleaning every surface of our house while keeping Charlie completely secluded from everyone else. We had friends bring us groceries and sanitizer, leave them on our front porch, and wave to us from a safe distance.
Again – like I do – I put my head down and charged through the crisis.
These are crazy days we are living in. I read somewhere today that the human race averages about three pandemics per every one hundred years. That seems like a lot, doesn’t it? I guess it’s hard for the collective consciousness to hold on to that historical statistic when the last pandemic was over a decade ago and really didn’t do more than inconvenience some of us a bit. It did, however, impact the lives of the 60 million+ that contracted the illness in that year – and that was just in the United States. And even more so, it impacted the families of the near half a million people worldwide the CDC estimates died from H1N1 that year.
Thankfully, my kids weathered swine flu well, and we were able to keep it contained between the two of them. Charlie recovered from the herpes-in-the-eyes incident without any lingering issues and without spreading it to anyone else.
And both experiences just mixed in with all of the crazy and fairly regular catastrophic-ish events that happen to our family on a frighteningly frequent basis.
Like the time Charlie was hospitalized during a serious battle with pneumonia, then shut away for a few weeks to protect his still-compromised immune system. And like Morgan’s similar battle with pneumonia (and later, with mono) that kept us shut in for what seemed like forever. And Charlie’s broken leg. And my countless surgeries. And the prolonged illnesses of both my parents before they passed away.
And the ongoing limits of my journey with chronic pain.
This is my ride, and I’m kind of used to it. But the posture I’ve held to get through it all over the years doesn’t work for me anymore. I can’t just put my head down and charge through like I could even ten years ago.
I have been doing a LOT of work in recent years learning how to relax into my journey a bit more – how to release my hands from that white-knuckled death grip I like to hold on life – how to remember that God’s got me when I’m on the smooth and straight path as well as when I’m on the twisting and turning roundabouts that make us all crazy – and, just as important, how to be okay with the very natural responses I have to those really scary parts of my journey.
This last week, as we began to try to adjust to the ways COVID-19 is impacting our lives, I noticed my knuckles turning white once again. I felt the all-too-familiar urge to dig in and push through this season wrap itself around me and begin to take me down. And I felt sure I would go under from the weight of it.
But I noticed.
I saw the familiar patterns, and I named them.
Fear. Anxiety. Grief. Selfishness. Loneliness.
And then I realized that I actually know how to do this.
I know how to see these parts of me that rise up in times of crisis, and I know how to take care of them. I’m not great at it (yet – this is for my therapist), but I know what to do.
I have learned how important it is to make space for the loneliness, the grief and the disappointments that come when life shuts down because of things like illness, chronic pain, or a worldwide pandemic.
Because life doesn’t really shut down, does it? And if I don’t loosen my hold and allow myself the space to move through those feelings, then the living that continues around me will be inaccessible to me…and worse, I will be inaccessible to others.
Despite COVID-10, a lot of living is currently happening within these four walls that we call home. Both of my college boys – like college students everywhere – had to move home mid-semester with little warning. They even brought a bonus boy or two home with them.
David, who thrives within the structure of school, is now about to experience (very light) homeschooling for the first time. #Godhelpme
I’m no stranger to homeschooling after 15 years of doing it with the older kiddos, but homeschooling David will be a whole ‘nother level…especially when he’s dealing with the anxiety and dysregulation caused by the disruption and upheaval of his day-to-day expectations. Navigating the coronavirus while supporting a child on the autism spectrum is bound to take us on an interesting ride, don’t you think?
I have a lot of daily practices going on at all times to help me manage #allthethings.
Solitude. Embroidery. Prayer. Writing. FaceTime with my people. Crochet. Reading. Group chats with other mamas in the trenches. Naps. More solitude. And then more naps.
And maybe a bit of Netflix binging on the side.
But, you see, this is my normal. This social distancing thing was already pretty much my jam. And I’m feeling pretty grateful for that right now. That’s an interesting place for me to be. It’s not often that I am able to reflect on this part of my life – the limits, the aloneness, the boundaries – with an attitude of thankfulness. I’ve become accustomed to it, but that’s not at all the same thing as being at peace with it. The work that I’ve done in therapy has been largely about coming to terms with this narrow space I live in.
The Psalmist, David, in a song of gratitude to God, expressed wonder and amazement at how good God was to “hem (me) in behind and before” (Psalm 139:5). I’ve tried to use this image to frame my journey so that instead of seeing my life as full of limitations and can’ts, I can see it more like a safe place God has created just for me.
So the narrow space my body lives and struggles in becomes a wide-open space for my spirit and my soul.
The current situation with COVID-19 is far-reaching in its impact around the world and unprecedented in our time…and its impact on myself and those I care about is very real.
Just as it is for most everyone on the planet.
I think we have to give ourselves the space to feel #allthethings as they rise up within us.
When I do this I see that #allthethings are really useful to me if my goal is to know God.
Now, honestly, that’s not always my goal. And when it’s not, #allthethings really cramp my style. I don’t want to stay home. I don’t want to be chronically ill and in pain. I don’t want my children to be sick and shut away. I don’t want to be left out of an event or gathering because my body isn’t able to manage the activity. I don’t want to struggle with anxiety and depression. I don’t want the discomforts of isolation and quarantine. I don’t want to live in a narrow space.
I don’t want #allthethings.
But when I want to know Him – really know Him – then I have to come to terms with the reality that this kind of knowing only happens when we’re living in the narrow places.
It’s surprising what depression can take from you.
Appetite, sleep, energy, hope, health… all of the things.
At different times over the years, I’ve experienced the loss of all of those – usually not all at once, thankfully… although the darkest of my seasons have genuinely sucked it all away.
Including my love for music.
These days I’m trying to get that back.
Back in 1993, when Mark and I were living 683 miles away from one another, we fell in love. We met through some mutual friends, fell hard and fast, and then romanced one another long distance for the next seven months. #longstoryshort
We were pretty creative with it – crafting cute little ways of cultivating our love and commitment to one another even though the distance between us was so painful.
For instance, I made him a calendar using pictures of myself (stop it) posing in some cute-of-me poses for each month until our wedding.
And stop it. #notthatkindofcalendar
Mark surprised me by showing up on the doorstep of my parents’ house in Colorado one weekend when things were particularly hard in my home because of my father and his addictions. Not much will romance a girl better than her prince’s willingness to be present with her in her family drama.
The wait times between face-to-face visits were agonizing to our tender, young-and-in-love hearts, and the expressions of love given across the miles helped to soothe the pain of the separation.
For Valentine’s Day that year I bought a plastic bubble gum dispenser and filled it with enough Smartie heart-shaped candies to allow Mark two-a-day as we counted down the days until our wedding.
This was one of my personal bests. Although Mark’s office mates kept stealing candy and throwing off our count. On purpose. So rude.
Mark’s specialty, though, was the mix tape.
His ability to wax poetic using a mixture of other people’s songs was extraordinary. He has always been a music connoisseur and even then, during his post-college, on-the-edge-of-poverty season of life, he had an expansive, ALPHABETIZED, collection of music – much of which was unfamiliar to me. The tapes he made were love letters to me. I listened to them about one hundred million times, and each time I did I could feel Mark talking to me, soothing me, and reminding me we would be together again soon. You guys… if swooning were my thing, I would have swooned.
As it was, he had me hook, line, and sinker.
Music has often been a great soother of my soul. Although my exposure to various genres of music was quite limited, due to my parents’ belief that secular music was the gateway to sinful living (sheesh), as a child I found a piece of myself that I actually liked within the world of music. I grew up singing in the children’s choir at church, then the youth choir, then public school choir, traveling chorale, madrigal ensemble and show choir (#jazzhandswerenotmyjam). During my middle and high school years, I was in all-state choir in Tennessee, Alabama and Colorado. #nottobragbut
When I was ten, my mom traded babysitting for piano lessons for me, so piano became another outlet for my musical passions. In fact, my 1940s-era upright wooden piano was one of three pieces of furniture that my parents managed to hold onto during our transient years. I think maybe that saved my life.
In high school, when my musical tastes, along with my parents’ musical boundaries, expanded to include Contemporary Christian music, I found great comfort and connection in the youth group music culture. My first real concert was Petra’s Not of This World tour – a mind-blowing experience for me. I will be forever grateful to the brave few new friends in Alabama who took it upon themselves to beg – literally beg – my parents to let me go because, you guys, I had no idea. I soon discovered Amy Grant and Michael W. Smith – two musicians with an enormous catalog of songs helpful to me in countless ways. Before long, I was a full-fledged Contemporary Christian music junkie. Amy comforted me with My Father’s Eyes, while Michael’s Friends became my theme song, and I listened to it ad nauseam – finding a bit of an outlet for the losses that came with each move around the country.
I attended a Southern Baptist university and was very active in the music program there – traveling with the university chorale as well as the jazz ensemble. One of my besties at school was friends with the members of the Christian rock band, White Heart. She brought me along whenever the guys (I can call them that because we were pals) had a concert within a reasonable traveling distance from us. I think White Heart’s Freedom is still my favorite Christian album of all time. Or maybe Russ Taff’s Russ Taff. It could also be Amy Grant’s Lead Me On or Rich Mullins’s A Liturgy, A Legacy, and a Ragamuffin Band. I loved them all.
Until Mark showed up, my exposure to music outside of the Contemporary Christian genre was mostly limited to the major pop artists, and even then to the major hits of the major pop artists. I knew some, but I didn’t know much.
The breadth of Mark’s music knowledge is outside of my ability to describe with the written word. Whatever kind of song you need, Mark knows the name of it, the artist who recorded it, the album release date, and various details about the band, the producer AND the label. Total immersion in the world of recorded music is just a part of living with Mark.
So for the last 25 years, his tastes and musical interests have (mostly) become my own, and we’ve shared many moments singing our hearts out to a song we both love. You should hear us do harmonies. #weareawesome
It was natural, then, for Mark and me to pull our children into our love of music. We were the family in the minivan with three kids in booster seats, windows rolled down, sunroof open, and Eye of the Tiger reverberating in the air as we drove by. We found great joy as parents in introducing our favorite artists, albums, and songs to our children. We were also (mostly) pretty happy to join them in singing their favorite preschool songs from Blues Clues, The Wiggles, and Sesame Street, as well as They Might Be Giants and Weird Al.
I was so very happy when the Weird Al phase was behind us.
Music kindled connection in our home. When the kids’ tastes collided with ours, we made some pretty lovely memories together – making dinner or cleaning the house while we sang our hearts out.
We still do this.
The very first time our son-in-law joined us for family dinner, his sweet blue eyes bulged out of his head as the entire family began spontaneously singing – in harmony – Queen’s Bohemian Rhapsody while we finished dinner clean-up. Bless him. We are a lot. Of course, now he joins the party, and he can out sing and out dance the best of us.
Although for the vast majority of my life music has been a source of great comfort, in the last decade my senses have become more or less overwhelmed by all sound – including music.
There were other factors at play, of course. With the arrival of Davy also came a need for the entire family to often mute ourselves in order to keep his little, constantly-overwhelmed self as calm as possible. He loved music, but it most definitely had to be experienced on his terms. We learned to whisper-sing. These were the years when autism made connection challenging for all of us. Even The Happy Birthday Song had to be sung in hushed tones. That said, before he could talk Davy communicated to us through his own musical tastes. He was all about Coldplay before he was even two years old. Coldplay was our shared language with David. We were so grateful for it.
But this state of high alert concerning Davy’s needs, added to the chronic oversensitivity cultivated by my depression, grief and chronic pain, became so taxing for me that I found myself as hypervigilant to sound as Davy ever was.
As part of my healing journey, my therapist Melissa has often encouraged me to embrace music as a balm for #allthethings, but I have to say, sometimes it’s just too much damn noise.
But I’m trying.
I know that, just as Mark kindled the fires of our romance with those mix tapes, God loves to sing songs over us, birth songs within us, and help us find the means by which we can express our own emotions and desires in the music that we play and the songs that we sing.
So, I’ve been working on a little project of sorts.
I call it The Playlist Project, and in it I’ve been crafting playlists of songs that help me lean into some of the emotions and feelings that I often prefer to keep at a distance.
What’s been extra fun about this endeavor of mine has been the participation of the family. I knew they would all have songs related to each emotion – songs that resonated with them when they were feeling sad or angry or afraid. I wanted to know those songs. I sent the clan a text asking for songs relating to the target emotions, sorted through their submissions, and chose the ones that resonated with me the most.
It’s been so interesting to see the varied responses. For instance, our daughter, Morgan, a woman who has brought joy, light, and positive energy to every room she has entered since the day she was born, experiences anger through the lens of her deep desire to avoid ever hurting the people she loves. To me, her choices were mostly apologies for feeling angry (which I really do understand #likemotherlikedaughter). This is reflected in submissions like The Bleachers’ I Want to Get Better and Beat It by Michael Jackson. Baylor, on the other hand, leans into slow, brooding songs that feel sad and reflective to me and not so much angry. Jackson needs songs that explicitly say all the things he is thinking and feeling.
Charlie is currently in an anger-free season of life. #jealous
For my part, though, I need anger songs to be intense, loud, and driving – even better if there’s also a hint of cynicism in there. Mark knows me well, and his submissions, like Green Day’s American Idiot and Pink’s So What, hit me right in the center of the anger target.
So far, we’ve done Happy…
Raw (Sad didn’t seem to capture it)…
I don’t think the lists will be static like the mix tape was. I like to think that these playlists will have a life of their own that grows and adapts as I grow and adapt.
The Playlist project is helping me to lean into the feelings I am feeling – to notice and to stay with the sensations in my body when I experience big emotions. There’s something quite satisfying about blaring Famous Last Words by My Chemical Romance with the windows down, air blowing in my face and hands beating on the steering wheel. And Rich Mullins’s Hold Me Jesus is so raw and honest that I am comforted just knowing I’m not the only one who feels that way.
I guess you could say that I’m romancing my Self with the 21st-century version of a mix tape. #myhusbandisveryproud
I’m not sure exactly what that means. At the time, it just meant that I was lucky enough to get pulled out of the boring regular classroom to participate in a small group “extra” learning environment.
I’m pretty sure gifted curriculum has come a long way since then.
I sure hope so.
In fourth grade, one of the weirder projects our little gifted class did was a unit study on holes.
Yep. You heard me right.
I’m not even kidding.
I guess if you really think about it, you can come up with all kinds of things relative to the subject of holes that have application to our lives.
But who’s going to think about it?
Well, us for one.
As part of our unit, our teacher asked us to create something with a holes theme: a story, a poem, a painting… an original creation about the ever-elusive hole.
Although I roll my eyes HARD at the thought of this now, the truth is that as a fourth-grader I was pretty gung-ho with this assignment. Truly inspired. My observations (as well as my thoughts) on holes were deep, and I decided there was only one way I could really capture the essence of the hole.
I would write a song.
When I sang my song for the class on presentation day, the teacher got so excited about it that she convinced the music teacher to write accompaniment so that the school’s entire fourth grade could perform this song on parents’ night. Percussion sticks, xylophones, and triangles were added as orchestration so that the performance was pretty much just a confused cacophony of sound.
I doubt anyone could even really hear the lyrics, which is too bad because they were deep (I was gifted) and meant to just barely touch on the more complex characteristics of a hole.
Have you ever heard about holes?
Have you ever heard about them?
They may be tall.
They may be small.
They may be long.
They may be long.
Have you ever heard about holes?
Have you ever heard about them?
My teacher was maybe able to see something metaphoric in my complex lyrics, but c’mon… I was nine years old. Gifted or not, to me holes were simply that.
But now I see that holes are as complex as my teacher thought they were.
In my fifty years of living, I have been an asshole, stuck in a hole, a round peg in a square hole, living in a hellhole, a mouse with only one hole, in the hole, and out of the hole.
I have a whole lot of experience with holes. #smirk
This last week my therapist and I had an impromptu discussion over the proverbial hole and my experiences with it. She had noticed and pointed my attention to how much I’d grown in a particular area we’ve been working on for FOREVER, when I inadvertently (as I think I am prone to do) said something snarky about the depth of the hole in which I had plummeted.
Now, in conversation with most people, I can get away with these little jabs at myself. They’re usually pretty subtle and meant to ease my discomfort with whatever praise has been bestowed upon me. I often don’t even recognize I’m doing it until it’s out of my mouth and way too late to take back.
And that usually happens at the exact same time that Melissa calls me out on it.
She’s quick to the draw, that one.
This is both my favorite and my least favorite thing about her.
And even though I’m not likely to admit it to her face, it’s probably the reason I continue to submit myself to therapy with her.
When I responded to her compliment with a subtly self-deprecating remark about the immense depth of the hole I have been in, she asked me to consider whether or not I think this negates the better mental and emotional health I am experiencing now.
These are the moments when I have to work just real hard not to set my jaw, clinch my fists, and stomp my feet in frustration in response to this woman’s ability to know things about me I do not know about myself.
Because she’s right.
I feel like my journey is tainted because it has more holes in it than a slice of Swiss cheese… because it has been fraught with #allthethings.
I don’t know that there’s a way to avoid grief over time spent in the hole. I don’t think that I’ll ever again write songs in celebration of the hole. But I can stand on the edge of the hole, look down, and experience immense gratitude because I’m no longer in there.
The moments in time that stand out to me as the darkest and most fragile – the time I have spent in the scariest metaphorical holes – the rescues, support and triage it has taken to get me out… these moments do not diminish this journey to wholeness I am on.