unconditional love – PowerchairDiaries

Sometime Around 2 A.M.

By Mark E. Smith

I don’t know what time it is? I guess it’s sometime around 2 a.m. It was mere weeks ago that I could simply roll over or sit up and look at the clock. Not anymore.

I awake several times per night like this now, in pain from not being able to roll or shift positions myself. I lay awake until the pain is unbearable, then I wake my wife. Sweetie, can you please roll me over?

Age, disability, illness and surgery has all taken its toll – and much of my physical abilities and health with it.
I suppose I should be devastated, even bitter toward it all. I’ve had to live with cerebral palsy my whole life, now this – how can life be so cruel?

Yet, I don’t feel that way at all. In fact, I feel the opposite – blessed. No, I don’t want any of this, not the debilitating illness or chronic pain or loss of abilities. But, it’s not my call. It’s aging and illness and life at play. Resenting it all wouldn’t change anything other than adding a self-defeating tail spin to my life. Acceptance is liberating.

My wife is right next to me, touching me, side-by-side. We have a king-size bed, and she insists that I somehow end up on her side no matter what. Yet, in reality, I don’t think she’d want it any other way – close, touching, reassuring, especially now, for the both of us.

Life is about change, and questioning it or resenting it over the long run only defeats us. I’m not saying taking time to acknowledge loss or express our feelings toward adverse changes isn’t normal or healthy – absolutely it is. However, there has to be an expiration date for it, or it will consume our lives more adversely than the actual changes.

I’m to the point where my pain is unbearable and I need my wife’s help rolling over. I gently awaken her, and she softly rolls me over, asking in the darkness if I need anything else?

I answer, no. My answer applies to both the immediate and my life in whole. In the silence of the night, I think about my wife and our daughters and the blessed life I have – and I recognize that I’ve never had more.

At the Heart of Special Needs

By Mark E. Smith

Annabelle was five when she came into my life. It was among my truest blessings, not just because of my own yearning to continue being a round-the-clock parent since my oldest daughter was finishing high school and going off to college, but because of the beautiful child Annabelle was. She exuded a joy and carefree zest for life that simply isn’t found in most people, even children.

Any time that we marry someone with children, it’s often said to be a “package deal,” but this union was far beyond such simple words. This was the universe bestowing me among the most precious gifts in my life – a wife and a second daughter.
We often hear of “special needs children.” In raising my oldest daughter, Emily, I always took issue with that term because every child has “special needs,” where our role as parents is to identify and meet each of our children’s needs, unique to that child. In raising Emily from birth through now graduate school, I’ve been aware of the many “special needs” she’s had along the way.

Annabelle, likewise has special needs. But, again, like all children, hers are unique. Annabelle has spina bifida and autism. She’s wicked smart and has a sense of humor that has those of us around her laughing most of the time, but she doesn’t have “typical” interpersonal interactions. There’s no I-love-you, which makes her hugging her mother or occasionally holding my hand so powerful within our hearts.

As a parent, my primary role is in working with my wife to ensure that Annabelle has everything she needs, from skilled nursing care, to a special bed, to her own play room that’s everything. Annabelle, her haven.

I didn’t realize how much Annabelle recognized me and my dedication to meeting her needs until one night in our van. Among her favorite items of engagement is her tablet, on which she watches children’s YouTube videos. She was on her tablet in our van while my wife was putting groceries in our house before we were going out again. Suddenly, Annabelle dropped her tablet in such a spot on the van floor that neither of us could seemingly get it. She was buckled in her car seat and my power chair was situated in such a way that when I backed up to get the tablet, it was under my power chair.

Annabelle became more and more upset, to a panicked degree. I realized that if I reclined my seat back, I may be able to grab the tablet. As I did so, it put me in proximity to Annabelle, and she begin patting my shoulder, repeating, “Mark! Mark! Mark!”

This moment was profound because she doesn’t address anyone by name, so her addressing me directly in her moment of desperation was both heartbreaking, as she was so upset, and breathtaking because she was reaching out to me for help.

Fortunately, I scooped up the tablet and handed it to her, crisis ended.

Annabelle’s father will rightfully always be such. However, being acknowledged as her “Mark” in her time of need was among the most heartfelt moments of my life. Indeed, there’s nothing more poignant as a parent than being there to meet our child’s “special need.”

Nights Like the Minetta Tavern

By Mark E. Smith

When I was a child, my stepfather could do no wrong in my eyes. I idolized him, not just as a father figure, but as who a man should be.

Yet, as I overlooked then but realized as I grew older, he was deeply flawed. He was an alcoholic and his relationship with my mother was as mutually as unhealthy as it gets – constant drinking, domestic violence, suicide threats and attempts, drunk driving, and on and on.

However, much as when I was a child, I now, in mid-life, deeply value who he was in the best ways, what he gave me, and most of all, what he taught me.

I recently had dinner at the Minetta Tavern in Greenwich Village. It opened in the 1930s and has since been where men like Paul have gone for decades to celebrate life. The mahogany bar, white tablecloths, and red upholstered booths are timeless. It’s easy to imagine its famous past patrons hanging out there – Earnest Hemingway, Dylan Thomas, and e. e. cummings, to name a few – drinking, smoking, and eating, boisterous.

As I sat with my family and friends at a table in the middle of the Tavern, I drifted off from our own decadent meal and storytelling to thinking of Paul. I gazed at the signed, black-and-white pictures of old-time prizefighters on the walls, and was reminded of growing up watching boxing with Paul. Then, there was the Hemingway connection, who, in many ways, Paul embodied – bearded, smoking pipes and unfiltered cigarettes, playing dice at bars, drinking straight whiskey by the glass full, while discussing larger-than-life adventures.

Paul raised me in that spirit, creating larger-than-life memories. He took me to a bullfight in Mexico, offshore fishing in California, game hunting in Nevada. Then there were our trips to Hawaii and Spain. It was all spectacular and, in looking back, always hinged on the cusp of disaster, often fueled by alcohol – that’s how men like Hemingway and Paul lived. And, I, as a boy with severe cerebral palsy, was along for the wild ride.

I was infatuated with it all – not just in the adventurous life, but in Paul embracing me fully as his son, profoundly affecting me after having been all but abandoned by my biological father.

But, there still was that dark side. When you grow up with a Hemingway or a Paul as a father, you witness that which no child should witness: the insanity of a drunk. As I grew into my 20s and 30s, this juxtaposition became increasingly evident. Is a great man who’s deeply flawed truly great? I struggled with this question into early adulthood.

Eventually, Paul lost virtually everything, and he moved into my house, sleeping on our couch. He came home drunk night after night, and I was torn between him, as the father I’d always loved, and the health of my young family being negatively impacted by his behavior. I saw the amazing man I’d grown up with also be that man with my toddler daughter – that is, an amazing grandfather. But, the drinking was then beyond unacceptable to me.

The dilemma was seemingly solved when I moved across the country and we agreed to let Paul remain in our old house for at least a year, till I sold it, my brother watching over him to a degree. That distance gave me time and space to understand Paul’s complexities and the complexities of my emotions.

Paul later visited us annually, and although he still drank and his potential was forever faded, he never stopped loving me or gushing with pride in who I’d become, right till his death. And, my love for him likewise never wavered. There’s no better gift a father can give his son than acceptance, and that remains life-inspiring for me.

I returned to the conversation at our table, looking at my wife and youngest daughter – both of whom radiated the energy of the room – and I realized that what Paul taught me was that we don’t need to be perfect to make a profound difference in the lives of those we love. We just need to love, and that can be enough.

I finished my single glass of wine, admitting that I can’t hold my liquor like Paul, but in other ways, I’m every bit the man he raised me to be: I, with my family, making memories at the Minetta Tavern.