One Down, Two to Go

Ever since Ashley’s stroke 18 months ago, I have dreaded the day when medical insurance could potentially refuse to cover her outpatient therapies, either due to lack of progress or arbitrary cutoffs. In fact, during her inpatient rehab I was keenly aware that on any given day we could be abruptly discharged for the same reasons. That unnecessarily added to what was already enormously stressful.

In both instances, I pulled out all the stops to prolong that outcome, executing many things I had learned over Ashley’s lifetime. Due to the poor quality of the food during her inpatient rehab stay, I even prepared nutritious organic recipes for her that she could manage with her dysphagia.

During the weeks of home health therapy, and during the months of outpatient therapy, I worked with her throughout the day. I listened carefully to the therapists’ instructions and suggestions, replacing my mother’s inclination to save her with proper support and encouragement to create opportunities for her to improve.

Therapy is not 45 minutes X times a week. No, to truly benefit from therapy, it must be incorporated throughout the course of the day. Life’s daily activities become therapy: transfers to and from the toilet, transfers in and out of bed, transfers in and out of the car, repositioning, bathing, dressing, eating, baking, and playing games. It is a shift in mindset as all are performed with the purpose of rehabilitation.

We were wrapping up a therapy session on Thursday when the news finally came. Ashley’s PTA informed me that her Medicare recertification for physical therapy was upon us and he could no longer justify physical therapy. Because? “She is doing so well!”

Unexpectedly, I started to cry. It’s been eighteen months since her stroke and I can barely wrap my brain around what we have endured to reach this point in her recovery.

Ashley turned a monumental corner just 3 weeks ago when we offered her the use of a walker again. Months before, she was not ready and refused to try. This time she was more receptive. She struggled with her first few steps using it but has slowly gained confidence and taken off.

I must admit, it is hard to think of losing the support of her physical therapist who has walked this journey with us twice a week for the last 12 months. But fortunately, and unfortunately, we have worked ourselves out of his services. And now, with no formal education in any applicable fields, it once again falls to me. After all these years, I guess I should be used to that, but it still feels daunting.

Rest assured, had the hard cap for Medicare rehab therapy not been repealed in 2018, I fear we would not have had this same outcome. In fact, had Ashley’s PT and PTA not believed in her, and fought for her continued therapy (even within their own ranks), I doubt she would have come this far.

Instead, her PTA pronounced, “She’s back!”

He’s right and, unfortunately, he’s also wrong. From the standpoint of medical justification to treat, she is now using a walker with standby assist. And she has exceeded expectations when the stroke left her in a Hoyer lift 18 months ago.

But Ashley, as we knew her, is not back. Unfortunately, she never will be. She is now a different version of her former self.

And with or without formal physical therapy, “therapy” must continue, likely for the rest of her life.

From all appearances, her progress may appear “as predicted.” Oh, if you only knew. Nothing in life is a given, and no one receives a guarantee of anything, especially following a diagnosis of “stroke.” Therapy and hard work improve chances of recovery, but that may not even be enough.

But her progress is a testament to the tenacity of family, therapists, and most importantly Ashley. Failure would have been inevitable in the absence of perseverance. That is the one thing that, without a doubt, can be guaranteed.

Occupational and speech therapy will continue until Ashley’s skills exceed their services or her progress ceases. So, for now, it’s one down and two to go.


Brass Knuckles, an Actuarial Table, and a Social Construct

I’ve never wholly embraced the idea that I would live into my nineties, or even my eighties like the majority of my ancestors. I’m optimistic by nature, overcoming great struggles for the benefit of others. But for myself? I am more a realist and recognize I am not long on luck.

Until recently, my health had been relatively solid, a fact that I was rather proud of. To healthcare professionals, I often referred to myself as “medically boring.” And I was always promptly reminded, “That’s a good thing!”

With each birthday, I have done the math based on “best case scenario,” calculating how long I have lived and how much time I might have left. In a sense, I have served as my own actuary. I’d always been hopeful for a long life but also well-aware that a future was not guaranteed, even with genetically-enhanced longevity.

I’d read articles about stress and its effects on health, specifically chronic stress and “caregivers syndrome,” and recognized my health was likely compromised. “Burning the candle at both ends” would be an understatement. It was more like both ends and smack dab in the middle.

Unlike blood pressure measured in millimeters of mercury, or a glucometer to measure sugar levels, there is no “stress-o-meter” to give an accurate measurement of daily travails. Oh, sure, the stress hormone cortisol can be measured, but that’s a transient value and doesn’t represent the wear and tear on the body. Now with an available over-the-counter kit to determine the remaining length of my telomeres, I say “pass,” politely of course. There is no “anti-stress” pill to address or repair them, and a significant lifestyle change is not in the offing, so why bother?

I’ve been hopeful that the demands on my life might ease up to the point that I would still have the opportunity to do some of the things I have dreamed of: travel, write, read, take a pottery class, even spontaneously decide to walk the dog, all with a much-needed, and long overdue, touch of frivolity.

But my life has been filled with a unique charge. Caregiving for a daughter with multiple disabilities is now into its fourth decade. And, yes, it is very demanding. Having raised three daughters in all, I can recognize that there are exceptional and unusual challenges. But there is also a lovely “sameness” to it, a matter of parenting one more of my amazing children.

I, more often than not, hesitate to share much about the struggles for fear of being misunderstood. If you’re a member of the club, you already know the secret handshake, simply by virtue of the fact that you are a parent of a child with disabilities or chronic illness. But for the rest of you? You don’t understand. Trust me. You can’t.

To be honest, to offer a mention of a “fourth decade” even feels risky for fear of being misunderstood. Could it be misconstrued that I somehow have not wanted to make that milestone and the ones to follow? If that’s the conclusion jumped to, one would be horribly mistaken. For there not to be a “fourth decade,” my daughter would have predeceased me. No parent can bear that. No parent.

But am I worried that she might outlive me? You bet I am, every day of my life, for more reasons than non-club members could fathom.

Equally risky and exhausting, there is also a downside to not being forthright. Desperate for our lives to look like what others call “normal,” we labor to make it look easy, slapping smiles on our faces, knowing full well that being candid would likely drive the few remaining folks away.

But it has never been a pity party at my house either. I’ve been too busy grubbing to create a path for change. My life not complicated enough, I predictably morphed into a disability rights advocate. (But then aren’t most parents of kids with disabilities “disability rights advocates” in one form or another?) We identify with the soccer mom, except on steroids, donning a cape, and wearing brass knuckles and too often the same clothes we wore the day before.

It hasn’t been easy. I’ve not only fought my own battles but often everybody else’s, too. It is not something I look back on fondly. While proud of what I was able to accomplish (and accepting of the fact that I would be compelled to do it again), I now recognize the cost was likely way too high.

In the special education arena alone, I was fighting serious stuff from educational segregation and discrimination to accessibility, issues that few know about and most take for granted. I toiled away, evidence organized in tidy piles lining the walls of the master bedroom. All too familiar with the discriminatory structure that society created, I teased out strategies to overcome it: access to the school building, access to the classroom, access to the curriculum, access to technology, access to an education, access even to the playground. There were multi-year battles, lawsuits, investigations. This was my “normal” few even knew about but many benefitted from.

This didn’t stem from some twisted need of mine to be needed or, like a Chinese acrobat, to impress others by the number of plates I could simultaneously spin. No, I recognized that others were in pain over the mistreatment of their children – the children who could not speak or advocate for themselves – and I could absolutely relate because I was suffering and in pain, too.

In part, maybe I was hopeful I could collect a group of likeminded individuals who would fight along with me, create an army of advocates of sorts. Wrong. I only got pushed to the front. And when I looked back? Rather than being shoulder-to-shoulder or back-to-back with anyone, they were gone, but for a choice few (and I do mean few). Instead, I was surrounded by a multitude of “benefactors,” along with a slew of disinterested and apathetic individuals.

Maybe I just wanted a piece of what others around me had, those without a child with “special needs”: a sense of community, a sense of belonging to a bigger group called “society” rather than one identified by acronyms for a diagnosis or disability: DS, CP, VI, ASD, DD, ADD/ADHD, ED.

It seemed so simple, so just.

But “simplicity” wasn’t simple. And justice was a mirage.

Over many years of wear and tear, I began to feel the very fabric of my being deteriorating, thread after thread individually yanked, leaving weak spots and, in some instances, holes. My reserve was waning, and I knew it. But the demands were unrelenting.

With very little left for myself, I finally recognized that I wasn’t living my “authentic life.” “Systems advocacy” – replicable change – was digging furiously in sand: Turn your back in one direction only for it to collapse in another. It was stifling and I was slowly being suffocated.

Creating, something, anything, was the only thing that sustained me: authoring a book, writing an article, designing software or specialized fonts, preparing a workshop or presentation. Solving problems. Designing solutions. That is what kept me going.

But there came a tragic point when circumstances made even that all but impossible. As if a bystander of my own life, I watched as the riptide washed me out to sea. And, this time, I could not find my way back.

It was the toxic exposure at the high school that did it, that made one daughter deathly ill and left another with a chronic illness. Then there was the seven-year-long lawsuit that followed, my brain serving as a virtual Rolodex of information maintaining the story and the evidence. Two trips to Washington, DC came next, first to speak, second to participate in trying to effect change. But that was another one of those awful “digging in sand” experiences.

And then our oldest daughter had a stroke on September 8, 2017. It was not just a run-of-the-mill stroke but a devastating one, the paralysis/feeding tube/wheelchair/inpatient rehab kind of stroke. I had been down a similar path with her almost thirty years before. And here we were again, facing a horrible, gut-wrenching ordeal with a likely challenged outcome.

I was tested as even minimally adequate medical care was not provided for “my community,” the “diagnosed,” the “acronyms.” I was smart enough and, after all these years, well-seasoned enough to know to immediately request her medical record. I knew what I was looking for: It would be similar to what had previously lined the master bedroom walls, decades earlier.

And there it was. It wasn’t just a “feeling” of ableism or discrimination. It was there, in her chart in black and white. And, as a result, the medical community had nearly killed her…again.

It was completely and utterly devastating, trust-shattering for the umpteenth time.

And then one night, a few months later, I went to bed with an excruciating, unrelenting headache. Nauseated and in pain, I stayed in bed the entire next day. Knowing I could not remain bedridden, I finally got up, pushing through an entire week without medical attention or a diagnosis, all the while living with a subdural hematoma, a dangerous bleed on my brain.

The one thing I recognized was that the pain was extraordinary. What I did not recognize was that the inability to respond to my own pain might kill me.

It scares me to think what I endured, that it was necessary for me to be superhuman: Soccer mom on steroids, donning the cape and brass knuckles with a trash can by her bedside.

It still scares me.

Now I was facing brain surgery, recognizing the possibility of potentially catastrophic complications, simultaneously coming to terms with the fact that the actuarial table with my name on it may have finally run out.

I was staring down my own mortality.

But I had trained myself well. Alert and in intensive care, I appeared calm and resolute. I’m told I made it look “okay,” easy, just as I felt it necessary for all these years with my daughter, protecting everyone but myself.

There is no explanation for why I had a brain bleed. No trauma. No risk factors. Nothing. That scares me, too. Without recognizing and identifying a cause, how can I create a different outcome?

Or was there an explanation? Could sustained or acute stress, a spike in blood pressure, have been the culprit? The truth is, I don’t know, but that possibility has been neither ruled out nor discounted.

On the first brain MRI, an older spot “lit up” on the other hemisphere. That spot has remained unchanged on a more recent MRI and is thought to have also been caused by a brain bleed.

I now remember that headache, that excruciating thunder clap headache, following my presentation in Washington, DC. I remember the moment when the executive director of a national nursing association walked up to speak with me the day after my presentation. She was the only person to ask, “How are your girls now?” Overwhelmed that someone cared, I answered, “Not well.” That was the moment. I remember grabbing the top of my head while talking with her, questioning whether I should walk away to dial 911. But I remained composed and didn’t ask for help then either.

Now with the subdural hematoma and subsequent craniotomy, I ran all the years through my mind as I thought I might die: what I had stood for, what I had fought for, and what I had endured. I couldn’t help but think of what I could have done with my life under different circumstances and the things I could have become.

But those missed opportunities were not due to the circumstance of my child’s disability. No, I finally got it. They were due to the disability of our society.

I have always struggled to understand why society has unnecessarily made our existence so difficult, deliberately constructing walls that I and others have had to climb over and, in some instances, tear down. Politicians and the public can pat themselves on the back, passing sham laws deliberately designed with no intent for legitimate and sustained enforcement. Or in the case of toxins in schools, they pass no laws at all.

Like I said before, justice was a mirage.

But it didn’t matter anymore as I was fighting for my life. And I still am. I have finally accepted the fact that I am not immortal, that the cape and the brass knuckles must come off or my daughter will most assuredly outlive me.

And, after all these years, I know one thing with absolute certainty: In my absence, our disabled society will neither properly care for nor assure my child’s safety.

That is sobering.

Am I convinced that this social construct is not by oversight but by design? You bet I am.

I wish I understood why we actively and passively participate in a society, all of us, that screams “right to birth” and yet ignores “right to life”: my daughter’s, mine, my family’s, and countless others.

To my dying breath, I will not understand. I can’t. I won’t.

Can you?

In Hope of Space to Write

I haven’t “written” with pen and paper in years. I admire people who can, as their thoughts are expressed through the graceful movements of their hands. I’ve long since given up on that method. Having written almost exclusively using technology – from book to software manuals to letters to blog posts – I wholly accept that I function better with the opportunity to move words and lines of text around a page with copy & paste, insert, and delete. What can I say? While some writers literally embrace their journal and favorite pen, I embrace my keyboard shortcuts.

In the last 15 months, I have been left to improvise. Ever since my oldest daughter Ashley’s stroke, my days have been extraordinarily full. And I’ve slept in the same room with her, first in a chair in the hospital, then in a hospital bed in rehab, and now on a twin-sized bed beside hers at home. To be honest, more often than not, I’m not really sleeping much at all. I worry. I ponder. I read. And I “write.” More accurately, I “hunt and peck” my thoughts and emotions, memories and stories, using the Notes app and a single finger on the keyboard of my smartphone.

I’ve got it down to a bit of an art form, ducking under covers so that the soft glow of my phone doesn’t wake her. When she stirs – or most often whispers “hi” – I quickly drop my phone face-down on the mattress and pretend slumber until she falls back to sleep. If sleep hasn’t overtaken me while waiting, I’ll peck out a few more lines before finally succumbing to fatigue or a dearth of cogent thoughts.

But my smartphone makes a habit of ridiculing me, reminding me how foolish I am for my inability to sleep, tracking hours of phone usage, and the frequency of my disturbed sleep patterns from a tiny device strapped to my arm. It doesn’t dispense style points for my creative way of writing. It only knows to reinforce the fact that insomnia begets smartphone usage, and smartphone usage begets insomnia.

A smartphone isn’t the most efficient method for composition, better designed for eye strain than prose, but it’s all I’ve had for quite sometime. It does have the nifty built-in spellcheck, a dictionary, and Google. Internet searches can be a bit of a distraction, but can also serve as a handy tool for research, literally under the cover of darkness and a warm set of flannel sheets.

While my sleep patterns have still not become less disturbed, Ashley’s finally have after all these months. She often struggles to initially fall asleep but, many nights, she now sleeps through the night, or only awakens once or twice in need of my help. There’s now more of a pattern and predictability that allows me to come to terms with my sustained status: the twin bed, the insomnia, and the still overwhelming need to write.

Consequently, I’ve decided to attempt to create a new writing space, one that I might be able to escape to near her upstairs bedroom. Once she’s soundly asleep, I could write vertically rather than horizontally. Wouldn’t that be novel? (I swear I don’t go looking for puns. Somehow puns just find me.)

Being honest with myself, related to not only my physical circumstances but my emotional ones as well, gives me the opportunity to create solutions. And being honest with my thoughts and words may make my composition begin to appear on the page as “upright,” just as my frame will be sitting in a chair again.

Here’s to new spaces and new potential writing opportunities.

I’m hopeful.

And here’s to plain ol’ hope. “Where there is no vision, there is no hope.” Better yet, where there is no hope, there is no vision. And writing is, let’s face it, a hope to be seen. (And that would be a whole lot more likely if it were not from underneath the covers.)

Take that, smartphone! Your judging days may soon be over.

Gold, Shakespeare, and Civil Rights

I realize more and more as I age, and especially during these trying political times, how much we are each a product of our individual life experiences. The simple things, like the neighborhoods we grew up in, the schools we attended, the cities we’ve inhabited or traveled to, and the religious beliefs we have been exposed to, surely must have a lasting effect on our personal values.

Opportunity has affected each of us as well, whether benefiting by sheer luck, circumstance, hard work, or, more than likely, a blend of each.

And then there are those more complex life events that are not of our doing. Whether we’ve experienced food insecurity. Whether we’ve been victimized by bullies. Whether we’ve lost a friend or family member to gun violence, a drunk driver, suicide, or medical malpractice. Whether we manage chronic health issues or disability. Whether we have been sexually harassed or sexually assaulted. Whether we have endured infidelity in our marriage, or been abused, neglected, or abandoned.

Or whether we have experienced unexpected and random acts of kindness. Whether we have benefited from unconditional love or a committed relationship. Whether we have lived in a loving home with compassionate parents. Or whether we have been blessed with good health.

It’s as if shiny pieces of gold are passing in and out of a coin purse called “life,” making each of us feel “rich” or “poor.” Angry or content. Compassionate or malevolent. Emotional or dispassionate. Integrated or isolated. Included or excluded. Generous or stingy. Empathetic or indifferent.

In our time of social media, we are offered an often unsettling peek behind the curtain, a bit like a train wreck: unpleasant to look at but oddly difficult to turn away from. Seeing friends and strangers, in a sense, naked. Overtly uncaring, biting, intolerant, racist, name calling. Casually throwing around generalizations and stereotypes that can cut another like a knife.

For some, the experience can be nauseating, anxiety provoking, and enormously depressing.

But for others, fanning the flames appears invigorating, a life force, “justified.”

For me personally, it is unsettling, potentially revealing a disturbing synthesis of life experiences.

Or is it that the life experiences of others have, through no fault of their own, been “lacking?”

It causes me to reflect on periods of my own life as a victim of discrimination, segregation, and abuse of power. And I wonder how much that has shaped me. I wonder whether others have been touched by these same things, or whether they are living in an alternate reality of sorts, a safe bubble, unable to understand the disturbing sense of vulnerability experienced by others.

I wish I knew.

But I have had many life-changing experiences that have deeply affected me. A more civilized form of jungle warfare, it has no doubt altered my thinking and undermined my trust of others, and of protections afforded some by our society.

I have a vague recollection of how I felt a few decades ago, before so many disturbing events landed in my life. I recall feeling calmer, safer, more self-assured.

But my child’s civil rights, and therefore mine, have been threatened on multiple occasions, over decades. It has changed me.

Your child’s civil rights have likely never been at risk.

Your child has likely never been told they cannot attend their neighborhood school two streets from home. Rather, they needed to be bussed to a different school miles away. Mine has.

You have likely never been concerned about your child’s access to something as simple as a public school playground, a medical building, a restroom, or the opportunity to participate in a school holiday program. I have.

You have likely never been subpoenaed, multiple times, while trying to stop segregation and discrimination, or health-harming practices, for your child and others in a public school district. I have.

You have likely never had altered documents used by your child’s public school to deny them an education. I have.

You have likely never had to “afford” tens of thousands of dollars in legal fees to defend the rights that others take for granted. I have.

You have likely never been the prevailing party in a court case appealed to a state’s supreme court in an effort by your public school district to wear down, intimidate, and empty your pockets. I have.

You have likely never had an agency of the government suggest institutionalizing your child. I have.

Maybe you have never seen this level of deceit and corruption? Malevolence? Disregard for the life of another? I have.

“You are an alchemist; make gold of that.”

I have. But it has been at a price.

I am white. I am an American citizen.

So is my child.

But my child is disabled. My life experiences tell me that shouldn’t matter. Nor does skin color, nor age, nor religious affiliation, nor sexual orientation.

It must be that alternate reality that some live in. I have no other explanation.

“I am not what I am,” some would proclaim. Or are you?

We all need to frequently peer into our life’s purse to be sure it is gold that we have mined, rather than fool’s gold, an essentially worthless mineral.

“Foul cankering rust the hidden treasure frets, but gold that’s put to use more gold begets.”

Beware of “shiny objects.” Appearances can be deceiving.

“All that glitters is not gold.”

Better Mullet than Dead!

It’s a little fuzzy. My head, that is. Not the word recall or short-term memory kind of fuzzy. That, thankfully, has all but resolved. No, I’m talking about my hair. It’s now gotten to that awkward place since half of it was shaved off for my brain surgery. It’s sticking straight up like a cheap shag rug. Like a baby orangutan. Do you get the picture? I know, it’s not a good look.

I have an honest-to-goodness cowlick!

At dinner the other night, I guess I hadn’t done a very good job managing my hair before sitting down at the table. Daughter Megan had an accepting but curious look on her face. Daughter Wendy almost immediately turned her face away from me, her hand rising to her mouth. Maybe a delicate burp? Nope! I could see her shoulders rhythmically rising and falling. She was laughing!

“Mom, Mom! From this side you look like you have a mullet!”

Oh, my gosh, she just broke my achy breaky heart!

Just kidding. I can still laugh at myself.

I recently saw my hair during the sports segment of the local news. I felt kind of famous! If you want my hair, tell your stylist you want “a full-on Mike Gundy.” I have a “half Mike Gundy.” And if you don’t live in Oklahoma, or you don’t know who Mike Gundy is, be sure to look him up. He’s Billy Ray Cyrus with an OSU visor.

I don’t have anyone’s support on this, but I’ve seriously considered shaving the other side of my head. I’ve asked my son-in-law if he wants to join me. His hair is cut with a razor and he says I’m likely a No. 9. Who knew? I’d rather be a 10 but a 9 isn’t too shabby!

So, I look like a college football head coach and I’m a 9. That’s okay. Even if I have a mullet of sorts, at least I didn’t die with a shaved head!

Oh, and did I mention I have a freaking cowlick??

#WhyIDidntReport: Speaking Truth to Power

It was the summer of 1972. We moved from a condo in a new city our family had lived in for a year to a house in a new neighborhood.

The summer started off busy with street football and hanging out. The new neighborhood was teeming with kids in an age range around mine. It was a refreshing change from the summer before when I had had an abundance of babysitting jobs but no friends.

I was 15 years old.

The guy who now lived next door to me was, shall we say, creepy. He barely spoke and had an unsettling stare. He was apparently the youngest son of older parents we seldom saw. A “late in life” kid, his brothers were already grown, married, and gone.

There was also one older guy in the neighborhood a few doors down. He was a recent high school graduate, living at home and working as a car mechanic at a nearby gas station. He was amused by the creepy guy’s antics and egged him on. And I’m sure the creepy guy obliged to please the older dude.

Hanging out with others on our street was very short-lived for me. I can’t remember how soon after we had moved in that it ended. Maybe only days, maybe a couple of weeks. But I remember why.

It was a night that a small group gathered in the older dude’s den to hang out and watch television. Everything was fine until someone inexplicably turned off the lights. I felt someone’s fist violently thrust between my legs. I screamed. The lights went back on, and the older dude and the creepy guy were laughing. I bolted and never went back.

It didn’t end there. But I don’t remember when it exactly started. Creepy guy attended the all-boys high school of my comparable all-girls high school. He rode a different school bus and, too often, his bus arrived at the same time or slightly ahead of mine. When it did, he sprinted from his bus to arrive at his house before I passed. His garage door was raised as he stood inside, eyes covered with his hand, pants dropped, exposing himself to me.

I had no choice but to walk by his garage to reach my house right next door. I knew to look straight ahead. Garage door up? Straight ahead. Straight ahead. Quick pace, house keys ready. Eyes straight ahead.

Scared to death it might escalate, I quickly locked myself in our unoccupied house and did not go back out.

It didn’t end until probably two years later when my father and uncle finally went after him. He had exposed himself to someone other than me on my sister’s wedding day. They never found him but it must have scared him because it stopped.

I had been traumatized once that night, and every day I stepped off my school bus, not knowing whether he had made it home before me, terrified whether his garage door would already be up.

I can’t explain why he was creepy, why he exposed himself, or why it was not handled sooner. I told. But I know I never said a word at the time to anyone about the incident in the den. I handled it. I changed. I hid.

But I can promise you, if this guy were nominated for a powerful position that is intended to represent and enforce the exceptional values of our nation, I would come forward. All these years later. Without a doubt. I would speak truth to power.

I am no longer 15 years old.

And I am no longer willing to hide. Or to look straight ahead and quicken my pace. It’s time to slow things down and speak our truths. And by doing so, maybe we will help someone else speak theirs. And then another. And another.

And then maybe we can have an honest conversation about ourselves.

Because there is just too much damn silence from the wrong people.

First Year Anniversary: Paper

It was a day like any other day that started off with promise and ended in tragedy. It’s been a year tonight since Ashley’s stroke. And I have still not sat down to have a good cry. Why? If I let myself collapse as far down as I need to go to reach the depth of the pain, I would be using valuable time digging myself back out of that very deep hole. That’s time I have not had and do not have.

This year has been sad. Really sad. It has been painful to watch Ashley trying to process what has happened to her body with no ability to share, to curse, to sign, to unload her depression.

It has been hard to push her in therapy, to reason with her, to find ways to motivate her to do what her body cannot yet do or does not want to do, encouraging her spirit to not give up on her broken dreams.

It has been physically exhausting: sleepless nights, interrupted rest, transfers, diapering, toileting, lifting, positioning, propping, percussing, feeding, bathing, dressing, pushing, pulling.

And it’s been emotionally exhausting. Writing on my phone since “day one” to help me cope, I look back to find words like “When Doctors Lie.” That is when it all comes rushing back. (There is a 2-year statute of limitations. Trust me. We are keenly aware.)

One year anniversaries are celebrated in paper: discharge summaries, medication and therapy prescriptions, emergency room charts, hospitalization records, medical negligence letters, accessible van bills of sale (yes, plural), dysphagia management instructions, feeding tube care instructions, DHS appeal documents, checks to our attorney, shower chair assembly instructions, wheelchair parts receipts, more wheelchair parts receipts, pool hydraulic lift operating manual, power chair brochures, and lots of Medicare and private insurance explanation of benefits statements.

But life goes on. With public bathrooms we cannot fit in. With parking lots violating the ADA without any van accessible spots. With ableism. And stares. And isolation.

Yes, life goes on. Save the tears for another day. We are down but we are not out.