Beyond Ronald McDonald House and Pediatric Oncology

Beyond Ronald McDonald House

And Pediatric Oncology:

Gainesville

I slept in a chair/bed the last night I slept in Gainesville thirty-one years ago. It was upholstered in plastic and folded out to a meager twin-size bed. My cover was an extra blanket from the pediatric supply closet. Next to me, my seven-year-old daughter slept in a hospital bed. She rested easy that night because she had no chemo, no IV, no medications other than the ones she took daily to prevent infections and seizures.

This past Monday evening in Gainesville, I slept in a bed, a comfortable queen-sized bed with sheets and a comforter. It was my first sleepover in a city where I’d spent far too many nights sick with fear in waiting room chairs just outside intensive care units or inside those units when I was allowed to stay by my child’s side. It was the first night I didn’t stay in Ronald McDonald House or a hotel in Gainesville. It was the first night I didn’t awake afraid of what the day might hold for my child.

I fell asleep this past Monday night to the swish, swish, swish of traffic on nearby I-75. Those sounds lulled me to sleep, rather than having my slumber interrupted by the all-night noise of a hospital floor that held children afflicted with dire diseases or conditions. The lights were off in the apartment and no one walked in the halls. No buzzers rang. No IV poles beeped, beeped, beeped for attention.

I knew when I woke Tuesday morning that I would be with family, celebrating just being together, enjoying them and myself. No assembly of medical students would circle the bed in the room, learning, questioning, speaking in quiet tones.

When I woke the next day, I knew the day would be a new day—a day when I was not afraid of being in Gainesville—a day when no life decisions would be handed down or faced.

Thirty-one years ago, on that last night in Gainesville, my heart was broken. My beautiful child was being released from the care of those doctors and nurses who did everything they could to cure her. That everything was not enough and we made our solemn journey home a few days later. We made the most difficult journey a few months later when we said goodbye to Alexa.

Until a year ago, I had not returned to Gainesville for thirty years. When I got off I-75 that first time without a medical agenda, I met my oldest daughter and my son-in-law at Kanapaha Botanical Gardens. Later, we went to lunch and then to Trader Joe’s. Other than a weekend trip to meet some friends who attended college there in the 1970s, it was the first time I had been to Gainesville for nonmedical reasons. I wasn’t sure I would know how to act.

I figured it out pretty fast. I acted just like someone who had spent an afternoon in beautiful gardens and then went to lunch and shopping with two of my favorite people. It felt odd, but I reminded myself that people come to Gainesville every day and live and work and play there and they never go to Shands Hospital or Ronald McDonald House.

Monday afternoon, when I got off I-75 at the Archer Road exit, which is the same exit for Shands, I didn’t go to Shands. I went to my granddaughter’s house. I ate dinner with my family. I had the best ice-cream I’ve ever tasted. We laughed, we talked, we shared.

Memories have a firm place in our psyches. Memories reflect and affect who we are today and how we respond to our environment. But memories don’t have to be static. They don’t have to encompass only one time and one experience. In spite of the past that often pains us, the present and the future can bring us comfort and, especially, joy if we are receptive to those things.

Nothing will ever change my memories of the time I spent in Gainesville with my Alexa, just as nothing will ever change my memories of her. But, my trip to Gainesville this week taught me that I can add to memories. I can change associations with places and times. Even in a place that once held much sadness, I can be open to and receive love, care, and joy.

God Is Everywhere in This

“God Is Everywhere in This”

One curve around the Colorado Rockies led to yet another mountain view, each one more stunning, more breathtaking than the one preceding it. Overwhelmed by the beauty of those Colorado mountains, my daughter said to me, “God is everywhere in this.”

It has become a favored phrase of mine. I try to remember it and to notice—even when I am grumpy, tired, afraid—that “God is everywhere in this.” Sometimes it is difficult to remember; other times it is not. It is easy to remember when the Epiphyllum Oxypetalum blooms.

Epiphyllum Oxypetalum flowers last only one night. But, oh, what a night. Beginning at dusk, the petals unfurl hour by hour, releasing beauty and scent beyond measure, beyond description. On those nights, I stay up late and bask in the aroma and the pure white beauty of the fleeting blossoms. And when I am really paying attention, I realize and delight in the awareness that, indeed, “God is everywhere in this.”

It's Okay When Your First Effort Fails

It’s OK for This First Draft to Be Sucky!

I’m ready to walk away from what I’m writing. And I will because I have to think a bit more before I put more words down. Right now, they don’t say what I want to say. My urge is to abandon these words and delete—or at least close—the file and be done. Maybe I’ll write another day, another time.

But I’m trying to encourage myself and not get caught up in the initial sucki-ness of what I’m writing. I know today’s writing is awful, but I also know I want to continue to write; therefore, I reminded myself that “It’s okay for this first draft to be sucky!” And I typed that at the top of the page. When I return from another cup of coffee, those words will encourage me to keep going rather than abandon all hope ye who type here.

It’s the rare person who excels the first time they try something. It is the rare person who excels every time they do something they think they have already mastered.

First tries might not be the best tries. We have to remind ourselves it really is okay for most of them to be sucky. The effort and the will to continue are not sucky. That effort can be harnessed to keep going and make something that is sucky into something that is valuable.

That sucky writing? I haven’t returned to it, yet. But I will because I think it might turn into something valuable.

Lean Into the Lego Tower of Life

The Leaning Tower of Lego(s)

And Life

Far too often, my life feels like a precarious Lego tower. (I don’t believe I’m alone in this.) I add blocks, I subtract blocks, I ignore blocks. As I do, my Lego tower—life—becomes more and more unstable. I once yearned for a perfect balance, one in which I exercise, pray, mediate, study, eat well, work well, everything in its place, predictable. Considering the concept of balance in more detail, I realize that balance is not what I want. A balanced life means a state of nonmovement, of being static, in one place. I don’t believe I would thrive in a boring, balanced life.

Therefore, my tower changes from day to day. I simply must watch the foundation and be aware of just how much I add to my tower or subtract from it. This one life, like the Lego tower, can hold only so much. Rather than striving for balance, I think the best choice of action is to learn to lean. Life (and Legos) will be precarious at times. Neither adding nor subtracting too much and leaning prevent many tumbles. If I do tumble, I still have a foundation, and I can build again. I don’t intend to fall, but if I do, I can get back up.

What Story Does Your Selfie Tell You?

Every Picture (Selfie) Tells a Story

What Story Does Your Selfie Tell?

I hate selfies. Strong word—hate—but I do. Every time I take one, all I can see are the wrinkles. All I see are the lines, the less-than-perfect teeth. All I see is the crepey skin on my neck and arms. I fail at selfies.

I don’t usually feel the same way about photos people take of me. In fact, I say to myself, “That’s a nice photo. I look pretty good.” I feel happier and a bit more comfortable in my own skin (wrinkled and crepey though it may be).

Not so with a selfie. I’m not sure if I sabotage it, but each time I flip that camera setting so it looks at me, I feel stymied, I feel bare, I feel old and decrepit. My smile is forced, fake. It happened again today while I was gardening, which might not have been the best time, what with all the dirt and sweat. I wanted to show a friend that it was so hot that I needed not only the very cool headband she made me, but also a cloth to sop up the sweat. I thought I might look cute in the headband, almost ninja-like with my bangs spiking above the edge. I again reminded myself of how awful I look in selfies, but I tried one anyway. Sure enough, I looked awful.

It was provident that at the time, I also was listening to a podcast interview of Leo Babauta of Zen Habits, so my psyche was primed to be a bit more aware than usual. In that awareness, I realized that my deep-seated dislike of how I look might reflect how I feel about myself, which hasn’t been great lately. In the last week, I have strayed from my course of self-care—and for me, that’s not a good thing. Of course, my selfie mirrored those feelings.

I then started thinking about other photos—favorite photos of myself. In those favorites, I like the way I look. I feel valued. I feel treasured.

I know why. Someone who loves me took each of those favorite photos. Someone who values and treasures me took those photos. That love, that value, that treasure shines through. They feel it, their photos show it, and that is what I see.

I wish I could transfer that love, value, and treasure to how I feel about myself right before I take a selfie (and to other areas of of my life). I wish I could say I’ve turned over a new selfie and that from now on, I’ll only take photos of myself when I at least feel a gentle spirit of kinship and genuine care toward myself. I am not there, yet, but after I cleaned up a bit after gardening, I took a few photos that I don’t hate. That’s a beginning. Perhaps I’ll get to the point that I love, value, and treasure myself enough to see that within me—with my own eyes. Perhaps I will even feel it within me, which is most important.

I don’t believe I’m alone in this quest, in this desire to view myself in a more loving, treasured, valued way.

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What do you see when you look in the mirror? What do you see when you look at a selfie? Can you try to love that person before you take the photo, before you look in the mirror? Can you try to reflect that love toward yourself even when no cameras or mirrors are nearby? Can you love, value, and treasure yourself?