Celebrating Life – The Stories Between

Walden Pond Forever: A Conversation with Barbara Olson

by Val Walker

Barbara Olson, MSW, LICSW, is a nature photographer and docent at Henry David Thoreau Farm. She recently retired from her position as Dialysis Social Worker at Massachusetts General Hospital.

I met Barbara in Concord, Massachusetts, on a bright October day at a friendly café on a quaint, bustling main street. Enjoying my bowl of butternut squash chili at the counter on my lunch break, I noticed a woman about my age smiling at me. In seconds, we were chatting about Concord, Walden Pond, and Thoreau’s writings. Barbara was pleased to tell me she was a docent at Henry David Thoreau’s famous farm nearby, even though she lived closer to Boston and worked full time as a social worker at Mass General Hospital. On weekends she was a birdwatcher, photographer, history buff, hiker, explorer—so much more than a social worker.

What struck me about our conversation was her joyous dedication to this historic town, her love of Walden Pond and the writings of Thoreau. Her warm, genuine contentment radiated from her sense of place, sense of belonging, and sense of discovery, and invigorated me just listening to her story. I’d recently moved to the Boston area, and was already doubting why I’d moved here after my disappointment with a new job.

But I found a message in Barbara’s story.

Though a native of Michigan, Barbara had made Massachusetts her home in the ways that nourished her independent spirit and zest for learning and exploring. Clearly, from her story, it heartened me to hear it was not about our jobs, but about loving where we live.

Within a year, we became friends. (Yes, I did stay in Massachusetts.) I invited her for an interview not only because I’d been so touched by her story of how Walden Pond had inspired her, but I was intrigued that she had never burned out during her decades of social work with people in pain and distress. Barbara had overcome compassion fatigue, big city fatigue, and even world fatigue by making Walden Pond her sanctuary—her own, private paradise.

What first attracted you to Walden Pond?

Barbara: I’d heard about the historic significance of Walden Pond (actually a lake and the deepest in Massachusetts), but at first, I really just wanted a place to swim outdoors. That was 30 years ago! Going there most weekends all these years, swimming in the mornings alone, I developed a deep relationship with the pond itself, the wildlife of the pond, and the surrounding woods.

How does a visit to Walden Pond restore you?

Barbara: As a full-time clinical social worker at Mass General Hospital, my quiet times at Walden Pond on weekends have been essential to keeping my life in balance. Even before I step into the pond for my morning swim, I’ll sit on a rock at the pond’s edge, and get oriented to my surroundings. Before I do anything, I need to settle in, to be still, to watch the birds, and listen to their calls. Though I’ve only been a birder for a few years, I find recognizing and appreciating bird songs brings another dimension to the wooded surroundings, and definitely pulls me away from the chatter in my head.

After taking my time sitting on the rock, I step slowly into the pond. Not only is the deep water cool and refreshing, but by swimming leisurely around the edges of the pond, watching the fish, turtles, and dragonflies, I can empty my mind, and be present to life right in front of me. The turquoise, blue and green colors of the water, the sunlight dancing through the trees and reflecting on the pond, the vibrant birdsong, the wide open sky above me—all give me a sense of peace. There is nothing quite like being in the moment, your mind open and attentive to the natural world around you. I can feel my thoughts slowing down, my mind calming and clearing.

This weekend routine has been a form of respite that helped me transition from my busy world of “doing” and into the quiet of nature. As a care provider for patients and their families, I know I needed to make time to nourish myself as well. This year I retired from my long-time position at the hospital. Now I have even more time for enjoying and observing the outdoors. My relationship continues to deepen and grow with Walden Pond and with nature in general.

Have you always liked swimming and being by water?

Barbara: Yes, that’s true. I grew up in Michigan, near Elizabeth Lake, in Waterford Township. During my childhood years, I swam almost every day of the summer. It was so easy to walk or ride my bike to the lake. My happiest memories are about the simple pleasures of a rainstorm. I would throw on my bathing suit, run outside in the rain and hurry to watch the water rushing through the culverts of the road. The neighborhood kids and I would try to float sticks and other objects on the racing waters, and marvel at how they would speed through the culverts and off into little streams.

Another memory is how I loved butterflies! I could spend hours just watching them hopping from dandelion to dandelion in my backyard. At one point I tried to capture them in jars so I could study them, but I soon learned how this was not good for them, and gave that up.

And I remember naively forming bird nests from fresh cut grass after my Dad had mowed the lawn, with the hopes that a bird would come and roost. I love the imagination of a child, which sadly as adults we tend to lose.

I was an only child until age 11, when my parents adopted my sister. In those earlier years, playing by myself, I hardly ever felt alone, as my relationship with nature was so strong. It was pure joy to grow up by a lake. I’m grateful for having these experiences as a core part of myself—the oldest part of me—my way of feeling joy.

Has your passion for Walden Pond led you to new networks and interests in the Concord area?

Barbara: Because I enjoyed the wildlife there so much, I developed my calling as a nature photographer over the years. I’m pleased to say that my Walden Pond calendars and cards are sold at retail outlets and historic landmarks in Concord. It’s not surprising that I also grew to appreciate the works of Henry David Thoreau. Four years ago, I became a docent at the Thoreau Farm, and once a month I serve as a tour guide. I meet wonderful people from all around the world who have been inspired by his writings.

Thoreau Farm, Concord, Massachusetts

What a beautiful connection with this place you have, Barbara. Walden Pond started out as just a place to go for a swim, and 30 years later, it’s become a core part of who you are. Do you want to add anything about your special relationship to Walden Pond?

Barbara: Yes, I have a story that sums up how I got the message that Walden Pond was the right place for me. It’s one of those synchronistic, or Kismet experiences when you just “get it.” Here it is:

One day, near Valentine’s Day in February, after a snowstorm, I walked to a ridge and took pictures of a glorious sunset glowing over the wide, frozen pond. Later at home, I was curious to see how the pictures of the winter sunset turned out, and I immediately uploaded the photos to my computer. Only then did I notice the enormous large letters etched in the snow blanketing the pond. The letters spelled “I love you.”

I could hardly believe it. Someone with their boots had meticulously carved out these words for their beloved as a Valentine’s Day message—but I sensed that Walden Pond itself was also saying “I love you” back to me! It was so heartening to see these words sparkling on the snow in the brilliant sunset. It felt like a special Walden Pond Valentine for me!

Wow, Barbara, now that’s a sign if there ever was one! I love it when we know in our bones just how precious a place can be, real Heaven on earth. Thank you so much for telling me what Walden Pond means to you. I think I’m going to read Thoreau’s Walden Pond all over again.

Barbara: Thank you for letting me share my stories with you!

Resources for Further Reading

Walden Pond State Reservation

Thoreau Farm: Birthplace of Henry David Thoreau

For More about Barbara Olson’s Photography

2017 Walden Pond/Concord Calendar by Barbara Olson

Greeting cards of Walden Pond and other nature cards by Barbara Olson

Val Walker, MS, is the author of The Art of Comforting: What to Say and Do for People in Distress(Penguin, 2010), and a Nautilus Book Award Gold Medalist in 2011. The Art of Comforting was listed as recommended reading by the Boston Public Health Commission’s Guide for Survivors of the Marathon Bombing. Val’s articles have appeared in Whole Living Magazine, AARP Bulletin, Coping with Cancer Magazine, and other national publications. Formerly a rehabilitation counselor, she now works as an activities specialist leading groups for seniors with Alzheimer’s, and other groups with disabilities. To learn more about Val you can visit her website, The Art of Comforting.

Cancerversary

Editor’s Note: We are always amazed at the resilience and positive approach that so many families living with cancer are able to adopt. How a potentially fatal diagnosis can be turned into a Silver Lining in their life and one they end up being grateful to have endured. We feel these stories can serve as inspiration no matter what your struggle might be.

Today is the cancerversary. Four years ago today the doctors came to Sophia’s hospital room to check in with us. We were waiting for their visit. Sophia had been brought in the night before, the cause of her illness yet to be determined. We were prepared to hear that she’d had a reaction to medication she’d been taking a few weeks earlier. Nothing prepared us for what was said next, “Why don’t you come with us to the conference room.” We were told Sophia had acute lymphoblastic leukemia and that she would begin treatment right away. It was a lot to take in and honestly the first week was a bit of a blur. What I do remember very clearly was the love and support we received – it seemed as if each day brought a new blessing.

Our friends and family went into overdrive. My sister was by my side every day with soy lattes, bistro boxes and laughs. Sophia was showered with gifts from family, friends and people we didn’t even know. Her name was added to prayer lists in Catholic, Episcopal, Methodist, Lutheran, Jewish and non-denominational churches and synagogues. The support truly helped us get through the difficult times.

They say a family trauma has the potential to break a family apart. Sophia’s cancer had the opposite effect on us. The five of us became even closer. Our time together became incredibly important. We adopted mindfulness as a way of being in the moment and cherishing each other. Even today, we try to have dinner together every single night, working around sports schedules. Some nights it’s diner at 4:30, some nights it’s 7:30. But we sit together in gratitude and share the best or funniest thing that happened to us that day.

For a while, we would categorize our lives as BC (before cancer) and AD (after diagnosis) as if we had lived two very different lifetimes. The first being a time of innocence and joy, the second being reality. Remembering an event or date we’d say, “That was about one month BC” or “That must have been about 3 months AD judging by her hair.” We don’t do much of that anymore. The whole cancer diagnosis seems to have been woven into our family timeline so tightly that there no longer seems to be a before and after – only a continuing story.

I love our story and I’m fairly certain each one of us, even Sophia, would agree- we wouldn’t change a thing. On this fourth cancerversary, we will celebrate our many blessings, grateful for each other and all those that are a part of our lives. There may also be some ice cream involved.

Jane McCaul is an Area General Manager for Chesapeake Hospitality. She manages two Baltimore-area Hackerman-Patz Houses which accommodate patients and family members of patients undergoing treatment at local hospitals. Jane lives in Baltimore with her husband John, their 3 children Christina, Jack and Sophia and their dog Ginger. After 3 1/2 years of treatment Sophia will be entering middle school in the fall – happy and healthy. She is very active participating in sports year-round (field hockey, basketball and lacrosse) but her favorite activity of all is playing in the ocean. She recently got a new surf board that she can’t wait to try!

Back From Vacation, Back To Work

Below is a reprinted blog post penned by Kylee Webster in July of 2013 on her blog, The Dancing Queen. Over the next few weeks we will be reprinting her posts to highlight the resilience and positive spirit of those facing even the most devastating of life’s challenges.

We all know that feeling that we get when we return home from a LONG, RELAXING, and fun-filled vacation and we realize that the vacation is over and the next day we have to go back to work. For most of us, this is never a good feeling. Well today I myself return to work after my own four month, fun-filled vacation. Type of work: cancer patient. Place of employment: infusion center at a hospital.

I last finished cancer treatment in the beginning of February 2013. Shortly after, I met with my medical oncologist in the beginning of March 2013 for a CT scan to check and see if the operation and treatment had worked. Well it did! On March 1, 2013 I was told that there was No Evidence of Disease in my body and my oncologist told me that he would not have to see me again for three months for a repeat CT scan. Three months?! What was I supposed to do with myself for three whole months with no treatment, no surgeries, and no doctors appointments to go too.

It took a few days for the good news to settle in. I was in shock. After all of these months, I was finally cancer free and I was going to get a vacation from cancer. After the initial shock began to wear off, I began planning. Planning trips with my family and friends. Making up for the time lost when the cancer was controlling my life.

And traveling I did!! I lived life like a gypsy and I loved every second of it. I will be honest. My cancer was always in the back of my mind. I thought about it everyday. But I only allowed it for just a short second or minute. And then I would stop myself before it consumed me. Because if I didn’t stop the thoughts, that meant the cancer was still winning and ain’t nobody got time for that!

After many weeks of living life to its fullest, my three month appointment check-up seemed to be here in the blink of an eye. On June 7, 2013, four words changed everything…”The cancer is back.” Back in my lungs. And back with a vengeance. After a few expressed profanities and a few tears shed from myself, I then looked at my oncologist and said, “Ok. What’s the plan?” Which brings me to today. I will be starting a clinical trial that will hopefully include the miracle cocktail that stabilizes, shrinks, or kills this cancer. So today I rejoin my battle against sarcoma cancer.

But let me be clear. Cancer does not define me. I am a daughter, a sister, an aunt/godmother, a granddaughter, a niece, a cousin, and a friend. These are the roles that most importantly define me. But if I am going to be honest with both myself and with all of you, I must include another role in my life…cancer survivor.

Yes I am a cancer fighter, but I am also a cancer survivor. I remember when I was first diagnosed with cancer I met a fellow cancer survivor and she told me that you are a considered a cancer survivor on the day that you are
diagnosed. So today I will fight, but I will also survive!

Kylee Webster was born on May 15, 1979. Passionate about helping others, Kylee earned both bachelor and master’s degrees in psychology from Towson University, and went on to pursue a career as a drug addiction counselor in Harford County, with focus on adolescent therapies.

Kylee was diagnosed with sarcoma in September 2011. She underwent more than 15 rounds of chemotherapy, more than 30 rounds of radiation and several major surgeries. Throughout her treatment, she amazed every person who knew her or met her. She was brave. She was courageous. She kept a smile on her face and never let her fighting spirit and attitude waver. She began documenting her journey with a blog titled “My Dance Through Cancer” and showed the world that in addition to all of her other talents, she was a fine writer too.

After battling her disease for over two years, Kylee earned her angel wings in October 2013. Kylee’s Dancing Angels was established to give something special to sarcoma patients, while keeping Kylee’s memory and spirit alive.

For more information on Kylee’s life and her Foundation and to donate to their upcoming Fundraiser: Kylee’s Dancing Angels website, Kylee’s Dancing Angels Facebook page, Kylee Webster’s Stories Between page.

Stay In Touch

A couple of weeks ago, a friend from high school that I had been pretty close with back in the good ole days of Fallston High School (Go Cougars!!), reached out to me. He expressed kind words about my strength and prayers over what I was going through. But he also said something else. He said that he felt bad that he had not reached out sooner to me during all of these years that had passed and that he was sorry that he had let such a good friendship go.

I cried when I read his words. Because I realized that that I was just as guilty as letting HIS friendship go. As it happens to so many of us, we often lose touch with certain friends from high school and college that during those years that we spend with these particular people we spend so many countless hours creating such awesome memories with them.

Let’s face it. In today’s technological world, you can basically locate anyone from your past. Especially if they have a Facebook or Twitter account. So reach out to these friends from your past. Because these are people that in some point in your life were important to you. So why shouldn’t they be important now? And be a part of your life now? These are people that you laughed with, shared secrets with, and created memories with.

I am sure that you can sit there right now and think of at least five friends from high school or college that when you think of them and the times that you spent with them a smile comes to your face or even a chuckle escapes your lips because you recall some type of funny story or shenanigan involving them. So WHY NOT find them now?? WHY NOT reach out to them now?? If you need to, stalk them on Facebook until you build up the nerve to actually contact them. But do something. Because life is too short not to have special people in your life. And because you may be surprised to learn that they were also thinking or smiling about you! Carpe diem people!!

Happy Anniversary?

Below is a reprinted blog post penned by Kylee Webster in September of 2013 on her blog, The Dancing Queen. Over the next few weeks we will be reprinting her posts to highlight the resilience and positive spirit of those facing even the most devastating of life’s challenges.

Happy Anniversary to me!! That’s right. It was two years ago today that the three little words of “you have cancer,” forever changed my life. So today I celebrate!! This statement may confuse you and many of you may be thinking that I have finally lost it. But don’t lose faith in me just yet;)

Last week I received the difficult news that the treatment that I have been on for the past two months isn’t working and that my cancer had progressed. Not exactly the news I was hoping for. Unfortunately this wasn’t the first time that I received news like this. I have had setbacks before. Typically I deal with it in one of two ways. I either shut myself in my room away from everyone and cry until there are no tears left. The longest I ever allowed this to go on was for three days. Then the tears just stop and I come out of it. Ready to rejoin society and ready to rejoin my fight. OR the procrastinator in me comes out and I act like I received no bad news. I guess I just go numb. I act like I am FINE (worst word ever) and figure that i will deal with the bad news later. I am calm. I am rational.

But then it happens. And I have no control over when and where it happens. I explode. Or implode. And breakdown in a mixture of anger and tears. I have my moment of temporary insanity and then as quickly as it happens it is over. And I am back to myself, ready for the next battle. So this past time that I received the bad news I took on the latter role. I did not shed a tear or curse out loud. Instead I got in my car and drove over to see my nephew, whom my mom was baby-sitting that day.

Let me just take a minute to tell you about my nephew. He just recently turned four and is obsessed with superheroes. His smile. His laughter. His hugs and kisses. And even the way that he says my name. All of these things just take all of the bad away. While I am with him there is no cancer. He has been my shining light through all of this and I look forward to the day in which I am able to explain to him how HE was Aunt Kylee’s superhero. So when I arrived to see my nephew, he greeted me with a big smile and hug and the simple words, “Let’s play Aunt Kylee.” A few simple hours with him was just what I needed. But the whole time I could feel the nervous looks from my mother because she knew IT was coming. She knew I was going to breakdown. She just didn’t know when.

And my mother was right (as I have learned that she is always right). IT happened later that night. Complete with an angry outburst of me slamming my fist down on the kitchen table with the tears flowing. But it wasn’t anger. It was fear. Frustration. Now there have been plenty of times throughout this past two years that i have been scared. But for the first time throughout my two years of fighting this beast I was scared that I could possibly be running out of options. And I am not ready to face nor accept that. After my dramatic show I went back to my room. Leaving my family members sitting in the kitchen probably feeling as beaten up as me.

Sometimes I think that my cancer may be harder on them then it is on me. Yes I am the one with the cancer. The one that has to suffer through the physical and emotional effects of it. The one that is constantly faced with my own mortality. But I see my family and friends struggle just as much as me. Because as they have told me they feel helpless. They can’t take the cancer and pain away from me. And I know that at times some of them struggle with what to say or do for me.

But sometimes I feel just as helpless as them. I hate to see them in pain just as much as they hate to see me in pain. Sometimes I don’t know how to make them feel better about my situation. But what I do know is when we are together and having good times when we are laughing and happy I sometimes forget that I am sick. And I hope that they feel the same way. It is these moments that make me stronger and make me fight harder and I hope that maybe they get the same strength from these moments. Back to the other night. So I was going to shut the door, turn out the lights, and crawl into bed but then I thought to myself. I refuse to let this cancer get the best of me. So I went back out to the kitchen, sat back down with my family, discussed my next options and what I wanted and needed to do. Tomorrow was my appointment with my oncologist and I felt ready for it. Ready for the next option or the next step, whatever or wherever that may be.

So back to my celebrating! You may wonder what I am celebrating?? Today I celebrate the fact that I am still here. Living and breathing on this earth. Today I celebrate the fact that despite the horrible odds and statistics that I am faced with I am still here battling this disease one day at a time. Not everyday is an easy or good day but it is still a day that I am HERE and grateful for. So today think of something that you are grateful for and go out and celebrate it!!

Keep Calm and Stop Worrying

Many people know that my daughter, Juliana, has been fighting cancer since 2007. She beat it then the cancer came back in March 2011 and, again, in June 2012. She has been on two kinds of maintenance chemotherapy for months. She had some pain in her chest and leg. Just recently, we noticed her right eye began to droop. We knew something was wrong.

On Monday March 17, 2014 we took her to Sinai Hospital. The following day we found out that a cancerous tumor was wrapped around two muscles in her right eye. Surgery was scheduled for the following day.

I couldn’t believe it. The cancer attacked my baby girl for the fourth time. For days, I felt like I couldn’t move. I felt like I had a five hundred pound weight holding me down. I couldn’t even do my daily radio show. I sobbed. Once Juliana was released from the hospital my wife and I came up to our bedroom to talk and I held her as she sobbed in my arms. Not again…not cancer…again?!?!

A few days later, Juliana emailed me a little poster that said, “Keep calm and Stop Worrying.” What? Keep calm and stop worrying? Certainly, Juliana doesn’t know the severity of her situation as the doctors said there is no long term cure for her. Still, this little champion was encouraging her panic-stricken father who doesn’t want to lose his little girl to this horrible disease.

What do you do when you don’t know what to do? The easy answer is to take control over your thoughts. Is that easy? No way is it easy! By March 21, 2014 I was able to pick myself up but not until I did something that has worked in the past. I started contacting thousands of people to pray for Juliana and our family. There are some struggles that you cannot afford to carry alone. This is one of them for our family.

When you leverage what you cannot do alone with the power and strength of others the load that you’re under gets a little lighter. Too often, I have found, people do not want to reach out and say, “I need help!” This is a huge mistake! I don’t know of anyone who is wired to handle all of life’s struggles. Allowing other people to help gives people a chance to make a difference in your life.

Thousands of years ago the Biblical character Moses was in charge of a great battle. He was so tired. He was losing strength very quickly. Two of his friends, Aaron and Hur, stood beside him to encourage him and to strengthen him. Everybody needs “Aarons and Hurs” in their life.

Author Mary E. DeMuth writes, “We grow when the walls press in. We grow when life steals our control. We grow in darkness.” There are some people who have a “calling” to be such encouragers. Statistics tell me that about thirty to forty percent of the public are encouragers. They are everywhere but you will never know it until you have the courage to open up your heart to people worthy of your trust.

Author Jon Walden said, “Struggle is proof that you haven’t been conquered, that you refuse to surrender, that victory is still possible, and that you’re growing.”
You don’t have to carry your struggles alone. Please pray for Juliana Carver.
“I Believe in you!” ®

John Carver was born in Baltimore Maryland and now lives in Carroll County Maryland. John married Tammy in 1988 and after nine years of infertility began adopting children from Russia and Belarus. Today, they have six children. Their youngest daughter, Juliana, has been fighting cancer since 2007. John inspires several thousand people each week using several online tools. To sign up for his weekly email, email him at johncarver@wildblue.net or check out his website, www.johnwcarver.com

Dreaming Different Dreams

Each of us is born with an expiration date. We won’t live forever, but we like to believe, we like to hope, we’ll live long, healthy, active, interesting lives. Die old and well worn in our sleep someday, a smile curling our lips thinned from decades of laughing and singing.

That said, people are well aware that things can happen that might make for a very different type of ending. They’ll mention the You-Curb-Bus-Goodbye scenario, abstractly acknowledging anything might happen at anytime. But they don’t really think it could be them – or their spouse…mother…child…best friend. That it might be now. Or very soon. Or just plain far, far too soon.

But what if you knew? Not knew the exact date, but were pretty certain the dying with a smile on your face 80 years from now was highly unlikely. A much shorter shelf life was in store.

When it comes to children, parents’ hopes and dreams are usually only greater. With medical and social advances, we want to believe our sons and daughters will live wonderful lives that extend far past their 100th birthday.

I’ve had to teach myself to dream different dreams.

My daughter, who has developmental disabilities and verbal apraxia, also has a very rare, chronic, and progressive genetic disorder called cystinosis. Only 500 people in the U.S. have cystinosis. It can cause multiple organ failure over time, tissue damage, and muscle wasting. Just think of all that muscles do. They not only help you bench press and tango, but breathe and swallow. And organs, well, most of those are must haves to keep on living long and healthy.

My sweet, baby girl, Sierra, now 20, was in kidney failure by age six and underwent her first kidney transplant then. She developed lymphoma in her lungs when she was ten as a direct result of the immune suppressive medications she needed to take to maintain her transplanted kidney. It’s a rare type of cancer that about 1-2% of people who’ve had transplants get called Post Transplant Lymphoproliferative Disorder (PTLD). While undergoing chemotherapy to clear her body of cancer, she lost her transplanted kidney and went into kidney failure again, as well as heart failure, and on peritoneal dialysis for about fourteen hours each day. We almost lost her multiple times during those very tough eighteen months before she was finally declared clear of cancer and was able to find another compatible kidney donor.

Although my daughter is spunky and strong and a fighter, as well as loving, kind, and ridiculously cute, we have learned to accept that we will likely outlive her. Unless there is some remarkable medical breakthrough soon, her life will be distressingly abbreviated. To give her the best chance at the longest life possible, Sierra takes about thirty pills over the course of the day and puts eye drops in her eyes once every waking hour to help reduce the damage cystinosis is trying to wreak on her body, maintain her transplant, and combat the side effects of a lifetime of being heavy-duty-medication dependent. She needs to take medication every six hours, which means not having the opportunity to get a nice, eight-hour long chunk of sleep…ever.

We are thrilled with each clear annual CT scan that shows the PTLD has not returned, but, unlike many other cancer patients, Sierra will never be declared out of the woods. She’s back on the same immune suppressive medication that caused her to get cancer the first time. She has to be or her body would reject the kidney transplant she needs to stay alive. So, we think positively and keep our fingers crossed that her immune suppressed body will be suppressed enough to not attack her transplanted kidney and recognize it as foreign, but not so suppressed that it can’t fight off any cancer cells that might be trying to form.

We live every day knowing something bad could happen at any time. Her condition is chronic and progressive. Some new medical crisis will come along that, this time, she might not survive. It could happen tomorrow, or in six months, two years, or eleven years. We don’t know when, or what form it will take, but we know it will come. That’s not pessimism; it’s realism.

So, I’ve had to learn to dream differently than most parents. I don’t think about the future or agonize over things that may never be (vacations, graduations, first job, wedding, grandkids…). I don’t dwell or worry much. As my grandma used to say, I’ve learned to “not borrow trouble.” When trouble comes, I’ll deal with it, but that’s not now.

Now is about finding great happiness in what is right in front of me. Now is for hugs that come as tackles and the magic of forever believing in Santa Claus. Now is for giggling hysterically over impressive burps, trips to the grocery store where Sierra picks out items that she knows her brother likes, seeing her make herself an iced chai latte in a treasured mermaid travel cup a friend gave her for her 16th birthday. It’s taking her to concerts where she dances with abandon. Right now is listening to Sierra sing karaoke and shout out random, fabulous whoops of joy just because she is.

And she is extraordinary. Perfect in her imperfection. She is now. And we treasure all of this wonderful mess that is our lives. We work to make it…enough.

Julie Ayers is a mother to two exceptional children and works for the Maryland State Department of Education. When she can shake out a free moment or two, you’ll likely find her writing, or helping co-produce the Tall Trees Concert Series at Towson Unitarian Universalist Church. Her daughter, Sierra, is a junior in high school and regularly helps collect money for various local charities by assisting at the concessions table at the Tall Trees Concerts.

P.S. Organ donation saves lives. Please consider being a donor by designating that on your driver’s license, but also consider being a live donor. It’s easier than you might think, and you could even be an excellent match for someone other than a blood relative. Our daughter joined our family through an adoption, yet my husband was a great donor for her first kidney transplant. You could be a hero like him and save a life right now! To learn more visit: www.donatelifemaryland.org. To learn more about cystinosis or make a contribution towards better care and treatment of this disorder, visit Cystinosis Research Network at www.cystinosis.org.

Tell Me a Story

If you’re reading this, we already have something in common. We’ve faced death – on our own or with people we love. We’ve fought its gravitational pull. Felt Fear pacing behind us, thuggish and thick-necked, all muscle and bluster. Either we were able to turn and walk away from the edge, or we had to let go of someone we love. Sometimes we’re asked to stand in front of it for long stretches, examining death from every angle like fallout from some distant, unknowable planet.

In the past four months, a lot has happened. My father learned he had abdominal cancer, had major surgery to remove it, and has started chemotherapy (so far, so good). I attended two funerals, one for a vibrant five year-old boy named Lee with a rare heart condition, and one for a mentor/friend named Skip who was gracious and wise. Instead of taking a planned, cross-country trip to say goodbye to our beautiful and terminally ill friend Allison, I had to settle for writing an awkward, inadequate email. I watched Alzheimer’s affect my father-in-law’s ability to enjoy the activities he loves. I contemplated a world without Bowie and Rickman and Frey. And, like you, I stood in front of my television and watched – yet again – the manifestation of violence and hatred take the lives of innocent people I will never know.

I’m sick of death and fear and cancer and heart disease and Alzheimer’s and violence and vitriol and all of the other terrible things that reach up the sides of the abyss and snake around our ankles. I want to surround myself with the opposite of these things. So I look for stories. I want to tell them, share them, go beneath the surface with the people in them. Then I want to see if I can find something in these stories that reflects something in mine. This is how I take on what scares me and that which I cannot control.

My dad was in the hospital for five-plus weeks, cared for by a team of incredible surgeons and healthcare providers. They became an extension of our family, as did the loved ones of other patients. We met a surgical resident who left a job on Wall Street to go to medical school so he could help cure people of the cancer that took his own dad’s life. One nurse – the one who let me ugly-cry on her shoulder – was a mother of toddler triplets and caretaker to two other adult relatives. A volunteer, there four days a week from 7 to 7, had recently been downsized from one of the big banks and said he was glad to finally have the time to help at the hospital. I rode the elevator with a pajama-clad, thirty-something year-old woman who had just left her six-month-old at home so she could spend the night at the hospital with her critically ill twin sister.

When my dad was recovering at our house, his friends – from high school, college, the Army, work life and current life – inquired after him regularly. Each time they’d get me on the phone, they’d tell me some new story I had never heard. I saw him through their eyes, not just my own, and they told me good, generous things that my dad had done – the sacrifices he had made – that I would never have known without them telling me.

You are never going to meet any of these people, or me, or my dad. I am never going to meet you or the people you love. It doesn’t matter. Through stories, even brief encounters that go beyond rote pleasantries, we have the privilege of knowing one another. We can remember and be remembered. What better way to put death and fear in their places than to honor what it is to be alive, to have truly lived?

Lisa Rubenson is a freelance writer living in Charlotte, NC. Her work has appeared online and in print in various publications. lisarubenson.com