The Greatest Fear of a Grieving Parent

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What is your greatest fear? What is it for you — that thing that gives you shudders just to think of it? Thunderstorms? Dogs, snakes, spiders? Heights or maybe confined places? Perhaps it is something psychological like public speaking, failure or being alone. Most of us are afraid of death. Everyone has something they fear in varying degrees — even Chuck Norris.

Your list of fears might be long or it might be short.

While I don’t love snakes, I know my greatest fear is being eaten by a shark. What are the odds, right? I go to the beach one week out of the year and stay in the surf. Oh, I wade out and play. But I always I keep a wary eye on the horizon and make sure there is at least one person bobbing between me and the deep blue. I call him “chum” and he is my harbinger. When the shark pack pulls him under, I figure I’ll have enough warning to swim to safety.

As a child of the 1970s, I blame “Jaws.” Sharks didn’t exist for me before then. I am not sure if I had yet visited a beach when I saw the movie. In my young mind, the Florida coast became full of 25-foot man-eaters that could beach themselves for the right meal. A boy doesn’t just get over that. Yes, sharks are my biggest fear.

At least, they used to be my greatest fear.

As grieving parents, my wife and I are now living out the greatest fear of many: the fear of losing a child. Except when at the beach, I am an eternal optimist. I never in my wildest dreams thought this would happen to us. This sort of thing happens to other people and we are the type who rally to support them. Even when my daughter Kylie was diagnosed with cancer and the prognosis hovered at 30 percent, I didn’t waiver in my belief that we would win. I wish I could take my chances with a shark instead, because I can avoid saltwater and remove any possibility of attack. Unfortunately, we fell on the wrong side of the percentage, and the resulting grief is much like a shark. It is cold, unpredictable and unrelenting at times. It uses triggers but doesn’t require them. It sets traps, lies in wait and springs at inopportune and random times. Losing a child is something to be feared.

At one point, we sat down and listed the things we lost when Kylie died. We lost joy, sweetness, hugs, our peacemaker. We lost patience, enthusiasm and energy. Our artist is gone. A lovely soprano and incredible actress has left the stage. We no longer have an affiliation with our beloved school — it was stripped from us early. We lost potential… seemingly unlimited potential. We lost a great deal — yet I find I don’t fear most types of loss much anymore.

In fact, I don’t think I fear much of anything. I still have a healthy respect for the killers of the deep, but even death has a strange allure because my baby will be waiting there.

You know what I do fear?

I fear you’ll forget her.

I fear her image will get fuzzy and fade away.

fuzzy photo of girl in green sweater
Mark’s daughter Kylie

And that is what I believe is the greatest fear of anyone who has lost a child: that he or she will be forgotten. We fear that because their lives were cut short, they won’t matter enough for anyone to remember. Our children didn’t live to accomplish what they were supposed to accomplish — the things that would make them memorable. So how will the world ever mark their short time here on Earth?

That is why so many foundations and charities are created in children’s names. It is why songs, poems and books are written in their honor. In the great search for the meaning of a life cut short, we parents yearn for another soul to share our mission to remember.

Do you remember Kylie? Do you have another friend who has lost a child? I can’t speak for them, but I love hearing stories about her — things I didn’t know before. Not only does it tell me she was special to that person, it lets me know that someone else is helping to keep her flame from being extinguished… that I’m not alone in this awful vacuum. I just want to know that even though she left her potential unfulfilled, her life mattered.

So here is my point and my charge. If you know a bereaved parent, tell them you remember. It doesn’t have to be much. Just something that will let them know they aren’t the lone bearer of the candle.

Someone saw a play recently and went out of their way to tell me, “Kylie would have loved that!” I later saw a friend of hers who told me how Kylie had made up a pretend brother in second grade. Both were small gestures, yet meant the world to me. They know… they remember… she’s with them, too. Her life had meaning to more than just me because here memory remains clear to someone else.

Our fears may not be the same, but we all fear something. You can quite possibly allay another’s greatest fear today by assuring them their child will not be forgotten. It may not seem like much, but it may keep them above water for one more day.

And we all should stay above the tide, because I know what is lurking down below…

girl wearing green sweater
Mark’s daughter Kylie

Follow this journey on Life in Porting by Mark Myers.

The Mighty is asking its readers the following: Describe a memory with a loved one you didn’t realize you’d held so dear until after they’d passed away. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Grieving Parents Find Sweet Note From Their Late Son

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Leland Shoemake, from Pike County, Georgia, passed away on Friday, September 25, Fox 59 reported. The 6-year-old had been receiving treatment at Children’s Healthcare of Atlanta for an infection from an amoeba called Balamuthia mandrillaris.

 

After his death, his parents Tim and Amber Shoemake returned home to pick out clothes for him to be buried in, according to a post on the Prayers for Leland Facebook page. On the kitchen table in their home, they found a note from their late son. The note said, “Still with you. Thank you Mom and Dad. Love. Good day.”

 

This is Amber. This will be my only post on here for awhile. I was over protective of Leland and tried my best to keep...

Posted by Prayers for Leland on Monday, September 28, 2015

 

He was the light of our life and the center of this family,” Amber Shoemake wrote. “When Tim and I came home for the first time to get him clothes to be buried in, this is the note we found from him on the table in the living room. We have no idea when he wrote it but you can tell he was always a special child. We will love you forever Leland. Sleep tight and don’t let the bed bugs bite.”

Read Amber Shoemake’s full post here or visit the family’s GoFundMe page to make a donation. 

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365 Days After You Lose a Loved One

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In the last 365 days, we have faced and surmounted a litany of firsts — from big ticket items like holidays, birthdays and anniversaries to smaller hurdles like the first time my mom had to zip up her own dress or the night I absentmindedly called my dad’s phone and heard it ringing in my own desk.

Today is the last first. The first anniversary of his death.

In some ways, it feels like just yesterday he was standing in my kitchen, and in others, it feels like I have aged a lifetime in these 365 days. A year is so short but the days are so long.

I remember every detail about that day — what I was wearing, what I made the boys for dinner, the smell of sand and salt lingering in their hair as I kissed them goodnight, the text I was about to send when I heard my mom yell, the way he looked lying on the ground, the moment I had to choose between being a daughter and being a mother.

My son had had heard the screaming, the calls for 911, the frantic thumping of feet up the stairs, and he called out for me — a guttural cry that came from a fear so deep it could form no words. And I had to choose. Left or right. My father or my son.

I hesitated for a fraction of a second, trapped in the space between childhood and motherhood, before I knew where I had to be. You might think I made the wrong choice. But until you have stood in a hallway yourself and had to choose between the man you came from and the boy who came from you, you have no idea.

Our job — our instinct — is to protect the people we love from unbearable pain whatever the cost. I could not protect my mother, my brother, my husband — they had seen it, touched it, felt it. But I still had a chance with Jack. I felt a desperate need to shield him, even if for just one more minute.

So I lay in bed, listening to the muffled voices of the paramedics, with my body wrapped tightly around my sobbing, panicked child, and I told him everything was going to be OK. It wasn’t a lie because in my heart I still had the hope of the little girl who had danced on her father’s feet and fallen asleep on his chest. The little girl who believed in Santa Claus and fairy tale endings. The little girl whose father had always fixed her problems and soothed her hurts. Surely he would do it again. As I whispered in Jack’s ear, I wasn’t just reassuring my son. I was reassuring the little girl that was still inside me.

It is human nature I suppose to ask yourself in these moments, “Why me? Why him?” But if you think about — if you really think about it — we never ask, “Why me?” in the midst of great fortune or happiness. Just as we accept the blessings and graces that life bestows upon us without question then, too, we must accept the heartbreak.

In my 39 years, I thought I was a grown up many times over. The first time my parents let me have wine with dinner. Getting my first real paycheck. Getting married. Buying a house. Becoming a mother. But I was wrong.

The moment you grow up is the moment you realize that beautiful things happen and terrible things happen. And sometimes they are one in the same.

Today is just a day. I will miss him no more or no less than I did yesterday. When the clock strikes midnight, there will be no magic wand that erases our grief or fills the void. Nor would I want there to be. There is no expiration date on grief. Grief, after all, is just a measure of the vastness of our love. Grief never really ends because love never ends.

As my dad wrote me on the eve of my departure for college, “We have not reached the end of the line, just the termination of this route. We are all changing trains, still journeying on together, destined by blood and love to cross and recross one another’s trails.”

Today is just a day. And if I’m lucky, tomorrow there will be another one. And every day is another chance to love hard. Every single moment. And if you do that, you will never have a moment of regret.

I love you, Daddy. Until our trails cross again…

Cameron Reeves Poytner the mighty.1-001

Follow this journey on Lucky Orange Pants.

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What Hospice Did for My Family in the Last Days of My Son’s Life

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Death is a taboo topic in our society. I am now six months on the other side of this topic. My beautiful son, Jai Tru, had cerebral palsy, epilepsy and traumatic brain injury; he passed away at just shy of 5 years old. It was his warrior spirit and love that kept him going.

I want you to know that every family is different, and there’s no one way of coping that fits all grieving parents who are caring for and have cared for a child with a life-limiting illness. This is our family’s experience.

Early in Jai’s adoption, my husband and I had to redefine parenthood. We couldn’t protect our son from his health issues. Our only goal was to give Jai the best quality of life. We knew that the definition of “quality” would be unclear, reliant on his needs and what we were able to provide.

The marvel in this situation was the reality of Jai’s joyful spirit. Although he was in constant pain, he never seemed to go one day without smiling. He loved when I read to him. He loved when his sisters sang and danced with him. He loved the racket of noise his brothers made. He liked to stay up late and lay on his daddy’s chest for hours. He filled our home with his contagious laughter. I’ll never know Jai’s thoughts, but our connection was powerful.

During Jai’s multiple hospitalizations, I was often perplexed about how a person could be in so much pain, yet always be ready to greet everyone with a light-up-your-world kind of smile and laughter. Oh, how I wish I could bottle and keep that laughter. The only answer I ever had was love.

When Jai was dying, I wanted him surrounded by love, warmth and family. I didn’t want him dying in the florescent-filled space of a hospital bed. I wanted Jai with us and in the place he was most at peace. The thought of him dying didn’t terrify me as much as the thought of him not being able to pass peacefully.

We believe that how many days you live on this Earth isn’t the primary measure of a life, that the quality of days is more important than the quantity. We feel hospice isn’t about end of life or death, but about adding life to days when days cannot be added to life. This is why we chose hospice.

When one of Jai’s doctors handed us a brochure for a pediatric care organization, I was relieved. I honestly didn’t know Jai would pass so quickly (about seven days later), but hospice was an amazing experience for all of us. The team seemed to understand intuitively the special needs of children. I was amazed at how ready and able they were to give support and address Jai’s and our family’s needs physically, developmentally, emotionally, psychosocially and spiritually. It was a relief to know we could reach out anytime with questions, fears and desires and receive answers that made sense and calmed us.

For our family, hospice offered a new model for how we perceive death. Hospice doesn’t preclude curative treatment, but it does require different questions to be asked and different priorities to be considered. It was a relief to focus on the quality of Jai’s existence now and provide freedom from pain and discomfort while making the most of those last moments.

Those last days, we laughed, cried and made memories. When Jai passed silently, beautifully from this world, we held him, we cried, we even smiled and made more memories. Hospice had done so much of the preparation that we were able to focus on our family, our love and things that were important and meaningful to us.

We walked together to the edge of the cliff so many times that when the final hour came, I have to say, we breathed a big sigh of relief. I suppose these are feelings a parent should never have, never acknowledge and most certainly never put down on paper. But I’ve learned to embrace parenthood with a truthfulness that appears brutal.

I didn’t really want to see my son take his last breath. I didn’t want to know life without him. Our family worked hard to give him the best possible quality of life, and we utilized hospice to give him the best quality of death. Hospice helped us realize what was important in our family and what we believed was important for Jai.

My children say that witnessing their brother’s death during that time changed their whole idea of death. They no longer look upon it as frightening and unknown. Even now, Jai’s name comes into their conversation and play time. They happily tell even strangers about their brother.

My youngest daughter won’t allow me to say, “We lost him.” She says, “Jai isn’t lost, he’s always in your heart and my heart and the hearts of everyone who remembers him.” His joy infuses our lives, giving us the strength to carry on.

A version of this post originally appeared in Complex Child Magazine.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it [email protected] include a photo for the story, a photo of yourself and a 1-2 sentence bio.

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The Delectable Way This Cab Driver Turned Immense Grief Into the Sweetest Ride in the City

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When this New York City cab driver lost his son, he channeled his grief into a way to make his passengers smile. Now he needs your help.

Mansoor Khalid, 38, has been a cab driver since 1996. In 2010 his son was born with a congenital heart defect, according to The New York Times’ blog. Khalid would drive his cab during the day and visit his child at Montefiore Medical Center in the Bronx at night. Each time he visited, he would bring coffee and sweets to the nurses and doctors. He liked spreading positivity in an otherwise grim place, so he kept doing it until his son died in April 2012.

When he finally returned to work, he wanted to chase the feeling he got from bringing sweets to the hospital. That’s when he had the idea to turn his cab into the “Candy Cab.”

 

Khalid has since become famous for filling the back dashboard of his car with candy. Passengers are encouraged to take as much as they want.

“Everybody is depressed, stressed, New York City is not an easy life, so when New Yorkers see all the candies, chocolates, they cheer up,” Khalid told The Times. “Some people start screaming, they’re so happy.”

That’s not all. Last year Khalid dropped $4,000 to install lights and speakers to the back of the cab so passengers can plug in music and sing karaoke. He’s since acquired a vast social media following on FacebookTwitter and Instagram for people to share their rides and request pickups.

However, on Sept. 3 the Candy Cab broke down, according to “Today.” Because of debt he and his wife accumulated while paying for their son’s treatment, he can’t afford a new cab. After making the announcement on social media, many followers suggested he start a GoFundMe page to raise money for a new cab – so he did.

“I really want to continue as a Candy Cab driver and provide my dear fans, NYC visitors and riders with opportunities that are memorable and full of fun and most importantly continue the good cause (making people smile),” he writes on the donations page.

He’s offering a free ride to anyone who donates at least $100. His end goal is $50,000. He plans to use any excess funds on more candy, which he says costs him between $400 and $600 each week, according to “Today.”

You can donate to help get the Candy Cab back on the streets at Khalid’s GoFundMe page here. Watch the video below to see the cab in action.

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Heroes Finally Get the Recognition They Deserve

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Veterans with disabilities are finally getting the recognition they deserve.

On October 5, the American Veterans Disabled for Life Memorial (AVDLM) will officially be dedicated and opened in Washington, D.C. The $80-million memorial will honor the country’s four million veterans who return from service with some kind of disability, according to AVDLM’s website. In addition, the memorial will honor those who take care of these wounded heroes.

One such caregiver is Donna Joyner, who’s been helping her husband every day for the last 33 years. In a profile in The Washington Times, Joyner describes how she cares for Dennis Joyner, a triple amputee who lost both his legs and his left hand while serving in the Vietnam War. She eventually quit her job in 2008 to care for him full-time. She told the paper:

I gave up my job, the income, any pension that I would have received. I will not get as much Social Security when I get to be that age because I had to leave and take care of my husband, because my husband was totally incapacitated, and we did not want him to go to a rehab facility, because he wouldn’t get the care at a rehab facility that he would with me. That’s where the compassion comes in.

The new memorial is completely handicap accessible and features 12-foot granite walls with inscribed quotes from leaders like George Washington and Dwight D. Eisenhower, according to The New York Times. There’s a star-shaped fountain — one point for each branch of the United States military — with a flame at the center. It also features bronze statues, which blind visitors are encouraged to touch.

Screen Shot 2014-09-10 at 3.08.09 PM

The memorial is located on Capitol Hill. Donna Joyner told The Washington Times she hopes that lawmakers will see it and be reminded of the cost of war.

Check out this time lapse video of the memorial being erected:

h/t Nation Swell

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