Sharon Perfetti – Page 2 – The Stories Between

Stay In Touch

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. Written just 3 months before her passing, the topic and wisdom of this article is especially poignant.

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!!

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.

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!!

What I Learned from Alice: Myths and Misconceptions about the Five Stages of Grieving

Over the past 30 years, the work of Elizabeth Kubler Ross and the Five Stages of Grief have been widely misunderstood and misapplied. Her five stages outlined as denial, anger, bargaining, depression and acceptance are often interpreted as benchmarks we need to “work through,” hurdles to clear, or goals to accomplish. Sadly this goal-oriented approach has caused many people to believe they can measure their “progress” through grief while undergoing the painful ups and downs of raw emotions. But too often, these expectations lead to guilt and shame if that “progress” fails us somehow.

As if grief itself wasn’t difficult enough, many people have actually judged themselves for not going through their grief the “right” way. And worse, many people have mistakenly believed that if they successfully” worked through” all five stages, then they should have “gotten over” their grief. But the truth is, we never completely “get over” grief, even though we do somehow learn to live with loss.

In short, grief is a very unique and individual experience. Some of us might stay in denial for 10 years as we plow through one crisis after another, and find out later that we are going through the “old” anger or depression from a loss decades ago. And this is okay—the way it has worked best for our life’s circumstances. Should we judge ourselves for not being able to grieve the “right” way just because we aren’t ready to face the powerful emotions of this process?

In my work as a rehabilitation counselor for 20 years, I particularly remember one person, Alice, in 1994 who taught me a profound lesson about grief and death. Oddly enough, I learned the most about grief from a 65 year old dying woman who had no time left for grieving. Indeed, Alice was given two months to live after a huge fast-growing tumor was found right next to her heart. I was her counselor at a hospital, and it was my job to somehow (according to the request of her physicians) help her with her “anticipatory grief.” Her daughter was already grieving, and welcomed my offers of comfort and acknowledgement of her mother’s horrific situation. But Alice’s daughter warned me, “She’s not facing it, she is totally refusing to face it.”

When I stepped into Alice’s room to say hello and introduce my services as a counselor, Alice snapped, “Don’t you dare talk to me about (she hissed sarcastically) my feelings—I just want to have a few good weeks—so don’t spoil it. In fact, you can just forget about me unless you can make me laugh or keep me entertained! That’s all I want.”

I was blown away, but I wore my professional smile and empathically nodded. Of course, inside my calculating brain I was “diagnosing” her stage of grief as denial bordering on anger. Yes, sure, I could just humor her and play the game, so she could get to trust me, but hopefully, at some point, I could help her “grief process.”

Over the next few days, with the help of a chaplain who played a guitar and sang folk songs, I joined in the singing and clapping and observed Alice fully engaged and “entertained.” Her daughter hovered around the bed, pretending to be happy with the chaplain, looking back at me for signs of “Now it’s time for you to talk to my mother…” But I never did that “talk” with her. Instead, we laughed, sang, got goofy, watched stupid reality shows, swooned over David Duchovny on the X-Files, ate ice cream, painted toe nails, read Peanuts comics. Alice died just one hour after her last X-Files episode.

I was shocked, but I marveled at Alice’s amazing sense of what she needed before she died. I believe Alice knew, deep down in her bones, and in her soul, that her time left on earth was utterly too short to do any “grieving.” I was amazed at Alice’s strength and certainty that she must “entertain” herself right up to her last breath. I am so glad I listened to her, and followed her lead to do the “right” thing by her standards! Fortunately, her daughter was also heartened that her mother was comfortable, and had a voice in her care for her final weeks. And to be honest, to this day, when I am with any other person facing grief or destruction, devastation, or death, I let them show me how to join them in their own way of coping.

We all have a unique, personal wisdom that guides us, often coming from our body sense, our gut, our instincts. The five stages of grief might not apply to someone with just a few weeks left to live. The five stages of grief might not apply to a 10 year old who lost his father after losing his friend a month before that. Or to a 30 year old woman raising two kids on her own with three jobs. We all go through the stages unevenly, and not even in the “right” order. It might be denial, then depression, then anger and not reaching acceptance for three decades. But all the while, every day we are handling each curve ball of unpredictable life events coming our way, in our own way.

Thank you, Alice, for teaching me to step into the present moment, out of my expectations of your grieving process, to the realities of your grief without time to grieve. Yes, Alice, you “worked through” your denial stage very brilliantly. Denial is a beautiful thing, I’ve discovered, and if I ever have to leave my life as quickly as you did, I hope I can enjoy it as much.

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.

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

Golden Honey, Silver Lining

In 2008, my garden was decimated by a small twister that took out over 30 trees. One of the trees, a stately black walnut, was home to a colony of feral bees. The trunk had been ripped in to several pieces, and the intricately constructed combs were in disarray. A beekeeping friend, Jon, attempted to rescue the colony, with the intention of hiving it somewhere on the property. His best efforts to find the queen and move her with her courtiers were thwarted: it appears she died on impact leaving the colony to dwindle and, already weakened, to die. Unable to save the colony, Jon removed big clumps of comb and our children sat around the increasingly sticky kitchen table squeezing pounds of oozing honey into a bowl. We bottled the honey and it is the best I have ever tasted.

This brush with bees inspired me to become a beekeeper myself. It was not a straightforward path: first, the night course I was to take was cancelled, another to be offered in the spring. When spring came I could not take the course as I was a little preoccupied with a very sick son, Gregory, being treated at Johns Hopkins for Stage IV Lymphoma. Eventually, however, Gregory made a recovery and returned to school.

Another spring came round, and the bee keeping course was offered again: I signed up immediately. Coincidentally, my children’s third grade teacher, Rosie, took the course too. She had been Gregory’s teacher when he became sick, and took a particular interest in his sister, Alessandra, when she joined her class a couple of years later. She has an excitement and enthusiasm that is almost childlike, certainly infectious and, on April 19th, 2015 Rosie and I successfully hived our very own colony of bees, and have tended our “girls” this year with increasing fascination and affection for these extraordinary creatures. In addition to co-parenting several thousand 6 legged delights, we have become fast friends, working together more and more smoothly as we open up the bee hive, examine each frame of comb for eggs, pollen and honey.

Rosie’s family has health challenges of its own, and we can speak to each other about our experiences in a kind of shorthand, a waggle dance of sorts. Having that implicit understanding of each others day to day difficulties, the exhaustion of continuing to function with as much grace and gratitude as can be mustered, having that inner knowledge, it takes the weight off our shoulders, if only for an hour or so. Having borne witness to how painful, frightening and fragile life can be ensures that Rosie and I are not great dwellers on the unhappy and we both tend to look for the joy in life, even on days when it is particularly elusive.

This beekeeping business helps us in that endeavor, watching these industrious, collaborative insects drawing out their beautiful comb, hexagon by hexagon, filling it with pink, yellow, even blue-ish pollen, storing honey to nourish the tribe in the depths of winter, keeping house, spic and span, each with a defined job to do, carried out efficiently, coherently, elegantly. I find myself talking to my bees when I am near their hive, or if they are working next to me in the garden foraging for nectar and pollen, their legs and abdomens liberally dusted with the good stuff. When we break open the hive and disturb their good offices, they fly up and around us and it is not fearful, but provokes a feeling of great warmth as we are enveloped in their thrumming cloud.

As Rosie and I continue our journey of care for family members with a chronic illness, on an often bumpy and rocky road with unexpected twists and turns, we have found a happy place, one we occupy together in empathetic companionship, striving to find the good, the pure, and the joy in life with our girls, our bees.

Laura Leach was born in England but currently lives in Baltimore. She is a horticulturist, a fundraiser, and freelance writer. She is married to Paul and is blessed with two children, Gregory, now 13, and Alessandra who is 10.

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

February: The Month I Love to Hate.

February sits smack dab in the middle of winter, when the skies are grey, the trees are bare and it’s cold outside. You go to work when it’s dark and come home when it’s dark. No neighbors are outside to chat with, the kids are bored inside and although the days are short, they seem to drag on and on….

Every year for the past 15 years, I brace myself for the arrival of February. Chelsea, my beloved daughter, passed away on February 10, 2001. It was only 15 days before her 10th birthday. So every year, in February, I celebrate her life, and mark her death. You would think that after 15 years it would get easier. Some years have been easier than others, but when you lose a child, the heartbreak never truly goes away. Yes, you learn to live with it. You learn to smile and laugh again. There is even joy to be found, but when thoughts drift to her, it’s just…hard. Would it be different had she died in the spring? I doubt it, but mid-winter only exacerbates the emotion that is as grey as the sky.

What should I do on February 10th? Some years I’ve taken off work, stayed under the covers and wished it would all go away. Pity parties don’t help, but sometimes the tears just fall regardless of how hard you try to not let them. Other years, I try to celebrate her life, remembering the good times and how sweet she was. I can look at pictures and watch home movies, but still the tears…. Sometimes we’ve gone on an adventure she would have enjoyed. Another year I was on a business trip and was so busy that I didn’t remember until I wrote the date. I almost panicked. It made me feel like a terrible mother. Then my own mother called to check on me and I broke down into a million pieces.

I used to struggle with terrible depression in the winter. One doctor diagnosed me with SAD: Season Affective Disorder. He suggested I try light therapy. I diagnosed myself with SAD, but I was just that, ‘sad.’

Then, there’s February 25th, Chelsea’s birthday. This year she would be turning 25. That’s hard to imagine… This day is a little easier. We always get a cake, sing happy birthday, then write messages on balloons and let them go. I love to see what Ethan and Charlotte, (my son and daughter who came after Chelsea passed away) say and write to her. They never knew her, but she is every bit a sister to them as Ashley, my oldest daughter. They talk about her like they did know her. Hopefully, because we all have talked about her so much over the years that they feel like they do. I love when they ask questions about her.

Now, when the holidays are over, and we round the corner into the new year, I see it in the distance. I know it’s coming and I try not to fear or dread it. It’s a time to remember Chelsea and celebrate the life she lived. I don’t make any definite plans as to what I’ll do or how I’ll feel, because every year is different. Awareness and acceptance of my feelings is what has made the difference. It’s okay to feel sadness and even pain, because even though it hurts, it is healing. The most important thing is to let yourself feel – all of it – the good, the bad and the ugly. Grief is a process and there is no time limit. It really never actually ends.

The best part is that after February is over, spring arrives. A renewal and rebirth of life. The trees bloom and the sun comes out and life is new all over again. I take a deep breath and know it’s going to be okay. My joy and hope is in knowing that I’ll see her again one day. So, until then, I will remember her with a smile, (and most likely a tear) and live my life to the fullest, experiencing as much joy as I can along the way.

Sally Hanshew is married and has four children. She enjoys baking, camping, reading and most of all spending time with her family.

Circling Back: Revisiting People and Places from the Past

Some of the most fascinating stories spring from revisiting our past, rediscovering the people and places that influenced us when we were young. I am keenly interested in listening to stories from people who have recently traveled back to a special, beloved place that has reawakened and heartened their spirits. For my column, Circling Back, I’m looking forward to hearing the wondrous adventures of people who took precious time out to return to important parts of their lives, even decades later. What did you learn? Were there surprises and changes you had no idea would appear? What were the resolutions or lessons of your visit? These are the meaningful messages I would love to learn and to share with readers.

I aim to interview people about their circling back stories. Sometimes I will present their experiences as a Q&A, and other times, it might be conveyed as a story or article. One thing for sure, they are all true and heartfelt accounts of taking brave journeys, sometimes amid great uncertainty and fear, and finding how revisiting people or places in person on can heal our lives. When we travel back to see a person or a place, we step into a realm of possibilities that didn’t even exist in our first two or three decades of life. Stepping back to the landmarks of our lives that call us for closure or rediscovery, we willingly open our hearts and minds to learning and growing, a courageous and beautiful human experience. Hopefully those of us who have made the effort to travel back on a personal quest to a reunion, or to beloved place, or a resolution of a mystery, or simply an adventure in rediscovery, have all enjoyed worthwhile and valuable experiences. And even for those who embarked on a less enjoyable adventure, I hope at least, wisdom and insight were gained.

For starters, I’d like to share my circling back story about going to Maine every spring. I moved to Boston recently after 13 years of working, writing and hiking in Maine as a nature-loving, quiet, mystic of sorts. For all those years, following my passion for great blue herons, I wandered to their watery sanctuaries in marshy, mossy coves where I disappeared behind birch trees, enthralled, sitting on rocks, reflecting on their heron ways. Amazed at their patience, their stillness, their waiting, their elegance, never chasing anything, just watching until the perfect opportunity arose, I learned from herons the fine art of timing. They darted for their catch so effortlessly. I lost myself in the world of herons, egrets, ospreys, ducks, geese, and ocean waves, until the spray of a rogue wave splashed me out of my trance, calling me back to the present moment.

Every May, once the herons and ospreys have returned to Maine, I drive northwards to witness their arrival. I marvel at the long migrations these birds have endured, and how they land at exactly the same tree or rock after thousands of miles of travel. Everyone has a landing place, a nest, a community.

And after my long ocean hikes, filled with the joy of witnessing my beloved birds returning to their northern homes, I meet up with my human friends, returning to our annual gathering at a favorite spot called Gritties Pub in Freeport. We indulge in fried haddock and chips, lobster rolls, sweet potato fries, or cheese-smothered chili, along with delightful golden beer. We catch up with a year’s worth of stories of perseverance, mostly concerning money, hardship, and our righteous accomplishments. We talk late into the night, even after leaving Gritties, landing at a table in a friend’s kitchen eating re-heated leftovers, gleaning from our stories our discoveries, victories, and takeaways. It feels so good to be a regular returning visitor, all ears, all ready to learn and engage in a year’s worth of each other’s struggles, to help make sense out of our lives. Friendship just doesn’t get any better than this.

I’m so happy that I can live and work in Boston, and go to Maine seasonally for my circling back adventures. As much as I’d love to afford to go to foreign places, just the two or three hours driving north makes a world of difference in how I look at life.

Still, I dream of the day I return to Denmark to see my dear friend Claus from my first magical visit to Copenhagen at age 19, or back to Scotland to see my old friend and roommate Morna from my two years working in Edinburgh at age 21-22. The return visits with them are on my bucket list. I am so hopeful.

Cancer: Turning Adversity into Opportunity

By the time I was 16 I was a two-time cancer survivor. And I have been surprised to find that it is possible to benefit from the cancer experience.

I count myself very lucky to have lived through experiences and challenges that most of my peers cannot imagine. I have become a passionate writer and advocate for young people living through cancer treatment or cancer survivorship. Through my writing, I have chosen to be a proponent of positive attitudes and try to encourage my readers to stay positive in the midst of some very negative times.

In doing so, I have learned a lot about cancer – both my own experiences and the impact cancer can have on others. For me, I am grateful for the lessons-learned, friends made, and dreams realized thanks to those two bouts of cancer. Although it can be hard to understand this gratitude when going through it, I have come to find that cancer can impact your life in just as many positive ways as negative ones.

In my own case, there are several things that have happened in my life – several very good things – that I don’t know if I would have experienced had it not been for cancer. For starters, my cancer treatment as a toddler sparked in me a lifelong passion for helping others, and that passion that provided me with direction during the early teenage years in which many young people feel most directionless.

My cancer relapsed at 13 and, while it stole 3 years of my adolescence from me, it gave me much more. That relapse treatment provided me with a family of doctors and nurses who showed me the meaning of hope, the value of dedication to one’s work, and the wonderful impact one can have on the lives of others when you choose a career about which you are passionate. I then had the opportunity to be an honorary team captain at the Leukemia and Lymphoma Society’s Fall Ball Lacrosse Tournament. I was assigned as the honorary team captain for the Duke University women’s lacrosse team. Although I couldn’t come to the game itself, the team sent me a beautiful and thoughtful care package. When I later went to look at colleges, Duke was at the top of my list because I wanted to find a school like that where students were involved in on-campus activities that could benefit people in and around the community. No less than 5 years after that lacrosse tournament, I received my letter of acceptance from Duke University and will be graduating with honors in May.

Shortly after the LLS lacrosse tournament, I took the opportunity to share my cancer treatment journey at a fundraiser for the hospital at which I was treated. This led to 30 subsequent speaking engagements that allowed me to become a practiced public speaker and give back to hospitals and organizations dedicated to helping children with cancer. At the same time, being out of school because of my treatment led me to realize the unique needs teenagers with cancer have, and the lack of age-specific social and emotional support that they so justly deserve. That realization led me to take an independent research class in high school to research the psychology of teen oncology, a project that led me to writing my blog and eventually publishing my book for teenage and young adult cancer patients and survivors.

Writing my blog and my book allowed me to process my cancer treatment experience and deepened my passion and interest in psychology – specifically in research into and development of social support interventions for adolescents with chronic illness, to help improve their quality of life. In following that interest, I hope to pursue a PhD in pediatric health psychology and work with children, adolescents, and young adults who have cancer or other chronic illnesses.

Long story short, you can take a challenge like cancer and turn it into one or many opportunities. By maintaining a positive attitude and open mind, think about your future and use the challenging experience as leverage to achieve goals that can help to make your future the best it can be.

Clarissa Schilstra is a two-time cancer survivor. She was diagnosed with acute lymphoblastic leukemia for the first time when she was two and a half years old. She went through two and a half years of chemotherapy and survived. She led a happy and healthy life until June of 2007, when her cancer relapsed. So, she went through another two and a half years of chemotherapy, this time accompanied by radiation. She is now twenty-one years old and a senior at Duke University. Her passion is helping others cope with the ups and downs of life during and after cancer treatment. It is her goal to become a clinical psychologist after she graduates from Duke, and she would like to help improve the psychological care available to adolescents and young adults who have serious illnesses. You can read more about Clarissa on her website and blog at www.teen-cancer.com. To order a copy of her book, Riding the Cancer Coaster, click here.