Those 'Normal' Moments Become the Most Memorable When You Lose a Child

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When your child dies, you are forced into a new way of being no one would ever choose. It feels like you are suddenly stranded in a desert of pain where all you can do at first is live in the past and the memories of times when your family was whole.

We all have those big moments in life we will never forget; they are etched into our consciousness as pivotal memories. They may be glorious or devastating – sometimes they are both. I have had many devastating, sorrowful memories I will never forget, the pain will never leave me.

There are images of sorrow and pain so intense they make me cry… every… single… day. I also have many incredible, happy memories — amazing, wonderful moments in time I will hold onto forever and cherish with all my heart.

But in between, I remember days and months of glorious un-eventfulness, filled with ordinary moments. These are the ordinary moments we tend to take for granted and not give a lot of thought as we go about our busy lives. But if you really consider it, these everyday moments are the foundation of our life; we may not recall every one in vivid detail, but they make up the background of our lives and are very special.

These quiet moments help shape who we are and how we think as we navigate through life. How I treasure those ordinary family moments when we could pretend that cancer never opened its dark door.

If you knew my son well, you would probably agree he was the king of derpy faces and he had a sarcastic wit. In so many of the pictures I took of him as a teenager, at the very last minute he would make a face. I would get so mad at him for ruining all the pictures. He would just laugh mischievously and give me the perfect smile, until I tried to take another picture and then it would repeat – much to my frustration!

author's son making funny face

I have a whole series of funny face pictures he took on my phone one day to entertain himself as we made the familiar drive home from the children’s hospital after he had received outpatient chemotherapy. At the time I chastised him good-naturedly for putting 30 funny face pictures on my phone!

I never really gave much thought to these imperfect images at the time. You see, I fully intended to delete them from my phone. After my son’s death as I frantically searched through all my pictures and memories, I discovered something quite astounding. These candid, “derpy” pictures are some of my most cherished! They really show my son’s funny, zany Noah self. I see his spirit so clearly in these pictures — how he used humor to always get through the rough patches.

Who knew at the time these things would become some of my most treasured memories?

Who knows what some of your most treasured memories will be as well?

So enjoy your “normal”; treasure it and realize the significance of a kind word or gesture and of just being present when you are tired and stressed after a long day. Really notice your “normal,” and you will see how wonderful your life really is.

Life can change in an instant — cancer steals this glorious normal from too many of us. Enjoy a normal day so many people fighting this battle would give anything to have back. Life is never normal after cancer; it is learning to survive and knowing you will never, ever live the life that you want most.

So enjoy every minute, and may the derp Gods be with you…

Follow this journey on Noah’s Blue Ribbon Brigade.

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To Those Who Saved Us While We Saved Our Son

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It’s been one year, nine months and four days since our worst fears became a reality. Our 4-and-a-half-month-old little boy was diagnosed with cancer. We had just transferred to a new city miles away from our families, and within two months we got this news. Feeling alone was an understatement.

But then there was you. All of you. All I remember is after a week of being in the hospital and feeling so helpless, I created a fundraising page for CureSearch to help raise money for research. I posted it to all the social media groups I had, old and new, and this miraculous thing happened. You.

baby bradley

You didn’t even know us but started donating for a cure. You started bringing us meals that we looked forward to over fast food for the 18th night in a row. You mowed our lawn and collected our mail. You sent well wishes and kind words to lift our spirits on bad days. You came by just to get me outside that room for the first time in three weeks. You brought our son toys because he couldn’t even leave the hospital room. You sent packages that scraped us off the floor when we thought we couldn’t go on. You brought joy to the whole oncology floor with dinner and cookies. You brought coffee when you know sleep was nonexistent. You were so far away but you always let us know you were there. You… you saved our lives.

Looking back on that first year, I honestly don’t know how we spent over 125 days in that hospital room. Even when we came home for a day or two you were still there, offering groceries and meals since you knew we had nothing. Even now when things are good you still brighten our days by cheering on Bradley on his Facebook page. You made his birthdays that much more memorable since he couldn’t have big parties. And you continually shower us in love, always offer a hand, and pray with us when we are scared. You are a true hero.

I don’t know if I’ll ever be able to thank all of you enough. From the bottom of my heart I don’t think we could have gotten through all this without you. We may not have kept in touch and for that I am so sorry. But please know I will forever be grateful for your kind gestures and acts of love.

They say it takes a village to raise a child. In our case, it took this amazing community we became a part of. Thank you for saving us, and for saving our son.

The Mighty is asking its readers the following: Write a thank you letter to someone you realize you don’t thank enough. Check out our Submit a Story page for more about our submission guidelines.

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When I Said the 'Wrong' Thing to a Cancer Patient's Parent

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It was just before Christmas and my son was in the hospital for a suspected virus. A local church was holding a gift bazaar in a conference room of the hospital so all the kids who were hospitalized at Christmas time could pick gifts for their family members and have them wrapped. I stood in the wrapping line and struck up a conversation with the woman next to me. We swapped stories of why our children were in the hospital. She told me her daughter was a cancer patient and that she had been in the hospital three weeks out of every month since spring.

I gasped, “Oh my gosh, that’s awful, I’m so sorry!”

The woman looked stricken. I realized too late my dramatic reaction was like an assault to her. In a bitter irony, not even a month later it was my child on the oncology floor fighting cancer. I learned then a whole list of well-meaning phrases that don’t always sit well with parents of sick kids.

Here are some of the phrases that struck a nerve:

  • This too shall pass.
  • God won’t give you more than you can handle.
  • You’re so strong.
  • I could never do what you’re doing.
  • My cousin (or aunt or other distant relative) had that same thing.
  • I know how you feel.
  • He’s so lucky to have you as his parents.
  • Is this terminal?
  • I’m worried about you.
  • You look tired.
  • Have you tried essential oils (or marijuana or alternative medicine)?

What to say instead:

  • Do you want company?
  • Could I bring you coffee or a snack?
  • I can give you a break if you need a nap.
  • I can listen if you want to talk, but you don’t have to if you don’t want to.
  • What can I pray for?
  • We care about you all.
  • Can I bring you a meal?
  • I can help with ___ (be specific).

It’s easy to stick your foot in your mouth and say the wrong thing, so don’t beat yourself up if you don’t get it right. The really important thing is to be there for them and give support throughout the duration of the illness.

Lead image via Thinkstock.

The Mighty is asking the following: What’s one phrase you wish people would stop saying about your (or a loved one’s) disability, disease or mental illness? Check out our Submit a Story page for more about our submission guidelines.

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It Broke My Heart When I Didn't Recognize My Daughter's Best Friends

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“Hello, Mr. Myers,” she said with a beautiful smile.

Startled, I replied in kind. She stood before me in anticipation while I watched the sun peak through her golden hair. Searching for something to say, I told her that I liked her dress.

“Thank you. When we went to the store, I made sure it had some yellow in it,” she beamed as she twirled slightly to let the flow of the dress boast its color.

“Kylie would love that,” I answered.

“I thought so, too. Well, I’ll see you later,” she said as she bounded off toward her friends.

I watched her rush off until she was engulfed in a sea of young women all flaunting perfectly-styled hair, manicured nails and the prettiest dresses their closets could produce. The boys – awkward in their ties – stood off to the side bucking horns, pretending not to be fascinated with their more delicate classmates. At 14, I could see the beginnings of the magnetic pull they would deny as long as possible, then succumb to as if they ever had a choice.

I watched the group laugh and tussle beside the still pond until called inside by someone in charge. As they moved, I stood transfixed on the scene of this place and these children. It was so natural and right, yet a weight deep inside of me told me something was missing.

My golden-haired friend waved at me and beckoned me to follow.

“You comin’?” she called (In the South we tend to be forgiving of the lack of a closing “G” – especially when it rolls through the lips of a pretty girl).

I raised my arm. “Yes, I’m coming.”

I needed to go in. After all, I was soon to be called to the podium to speak. I was there during this graduation week to thank her friends for how well they loved Kylie during her sickness. I should be in my seat waiting for my cue. But I couldn’t bring myself to budge. My mind reeled, and my feet were frozen to the promenade beneath me because I had no idea who she was.

mark and kyle
Photo by Cindi Fortmann Photography

I should have known her instantly. She was one of Kylie’s classmates and a friend since the first grade. There was a glint of recognition. I’m sure she had been in my car on field trips and in the classroom when I taught enrichment days. I knew she had been to my house for birthday parties. Still, her name escaped me — a fact that rocked me to my core. It means I’m forgetting.

It is amazing what a couple of years does at that age. While Kylie is frozen at 12, the rest of her friends have blossomed to 14 and are all a head taller since I last saw them.

kylie's classmates
Photo by Cindi Fortmann Photography

I will never know what Kylie would have looked like at this age. Cancer stole those years from us. It stole height, growth, maturity. It mercilessly took graduation, blessing dinner, a celebratory leap into the murky pond and a rising high-schooler with an unlimited future. Cancer is a ravenous thief.

And now I wonder, what else will it steal? She is relegated to pictures, videos and memories. Will it steal those? I am now 48, and she lived only a quarter of my life. Swaths of my past are but faint glimpses buried in the deep recesses of my feeble mind. Please! I beg! Let me remember her. Don’t let me forget the sparkle of her eye or the titter of her giggle. Let me hear her voice clearly until I hear nothing at all.

I feel like a victim held at gunpoint, only I’m not begging for my life – you can have that. Just please don’t take her out of my head. I want to savor each morsel. I want to remember her — every bit of her. I don’t want to forget a thing.

Aging is a tragic cruelty, and memory loss is part and parcel to it. But I fear this isn’t loss. No, I feel like my insatiable enemy isn’t done with me and is taking more piece by piece. Hasn’t this thief stolen enough? Please, leave me the little I have. Don’t wipe her from my mind.

Yet I have forgotten the delicate face of her friend and I am utterly terrified of what cancer will steal next…

The Mighty, in partnership with Fuck Cancer, is asking the following: What do you wish you had found on Google when you were first diagnosed? Find out how to email us a story submission here.

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What I Wish I'd Told Everyone After My Daughter's Cancer Diagnosis

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Dear Friends, Family, Neighbors, Acquaintances and the Community:

My child has been diagnosed with cancer. We’ll be in the hospital for months during treatment. Away from home.

I know this news has shocked and upset you, but please don’t cry on my shoulder as I am unable to support you. Cry with me but not to me.

Roanne Barnes Hautapu's daughter

We appreciate your thoughts even if I don’t reply to your texts, emails or messages. Answers to questions are hard to form in my mind, but I might manage a yes, no or thanks.

Until we set up a social media portal to make news updates to you all, we’ll filter information through a designated person at home, who will then, in turn, forward it on to you.

Yes, you can fundraise for us even if I say no. I have no concept of the financial hardships ahead of us.

Think for me as my brain will be mush. Go ahead and empty our fridge at home. Turn off the hot water. Mow our lawns. Collect our mail. These things won’t cross my mind. I will be in shock.

Want to visit in three hours, three days, three weeks or three months’ time? Do it. Make plans. Come and see us. But as time will lose all meaning, I won’t be able to commit to availability until “the moment.”

I’ll be tired. Bone-achingly, mind-blowing tired. I’ll appreciate your presence even if I’m not up to talking much. Perhaps you might offer to sit with my child. Perhaps I might take you up on it, so I can I leave the hospital for some fresh air, a shower, sleep, a break.

Although an adult is expected to be with my child at all times on the ward, parents aren’t provided any meals. I’ll be hungry. Receiving your nutritious baking, ready-made meals and fresh fruit will be a blessing. Oh, and a good caramel latte would not go amiss.

That was a sad story about your hairdresser’s cousin’s neighbor’s sister who had a totally different cancer than my child. And died. But no, no, no. Absolutely inappropriate.

Please don’t think of me as rude or ungrateful if I don’t personally or publicly thank you for your well-thought-out gift, letter or card you sent to us. I can have faith in your altruism if you can have faith in the postal system.

A hug or your silent company will be of more value than a thousand meaningless words or forced conversation.

I will have limited access to sleep, time, peace, head space, food, technology, Wi-Fi. Thank you for your understanding and support and love.

From a Parent of a Child Newly Diagnosed With Cancer

Follow this journey on Facebook at Quinn’s Quest.

The Mighty, in partnership with Fuck Cancer, is asking the following: What was one thing you thought immediately after your diagnosis that you completely changed your mind about? Find out how to email us a story submission here.

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Why I Quit the Company I Founded To Go Full-Time Against Child Cancer

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ezra standing on scale at hospital
Ezra

Our firstborn son Ezra died in 2010. He’d been diagnosed with cancer on the 400th day of his life and lived exactly 800 days. Ezra battled cancer half his life. He smiled through most of it. He was funny, curious and compassionate. He flirted with strangers. He learned to walk and talk in hospitals.

We learned a lot from Ezra, like you can dance and laugh through cancer. We learned the pain from some losses never goes away; it just moves from your skin to your bones. We learned childhood cancer is not yet beaten. Incredible, strong, fragile families are also learning this every day.

Five years ago — a month after Ezra died — my wife Robyn and I started Because of Ezra, a 501(c)(3) nonprofit with a goal of finding and funding a cure for neuroblastoma and other childhood cancers. It has grown, giving more than $700,000 to support patient-affecting childhood cancer research, including the first ever national clinical study approved for all incurable childhood cancers, and trials of a drug called DFMO which we hope is stopping relapse (more than half of kids who beat neuroblastoma go on to relapse — and currently no known cure exists for relapsed neuroblastoma). The results are promising.

Largely though, we have been working on Because of Ezra out of our margin. Robyn is a full-time mom, and our stubborn and joyful son Charley (born a premature twin; his brother Price died at one week old) has medical issues. I had a couple of tech companies I co-founded, which took most of my time.

As I’ve spent these six years living in the childhood cancer world, meeting the families and children, the researchers and clinicians… I’ve fallen terribly in love. Childhood cancer is a crushing, inspiring world to live in. Daily, we are reminded of Ezra and our loss, and simultaneously built up as we meet more and more families facing and beating neuroblastoma. We are blanketed in loss, knit together by strength people should never have to know they own, and we stand at the front of a war, trumpeting a battle cry.

closeup of ezra

I’ve loved technology since I was young and have had a ton of fun (and some success) building companies in that space, but my heart was being pulled strongly toward continuing Ezra’s fight, and that of so many other kids we’ve met since he died. I spent 2015 wrestling with the thought of going full-time with Because of Ezra. I had the conversation with Robyn many times, as well as a few people I respect in the childhood cancer world.

ezra playing in the pool One of those conversations was with a gentleman who lost his daughter to neuroblastoma and who has since with his wife (and team) raised more than $100 million toward beating childhood cancer. Over coffee, I asked him how it was moving full-time to a nonprofit. He told me it had been a big change, but they’d never looked back — that he and his wife knew they had to push this and ran full into it. The conversation resonated with me. I had another conversation with a friend doing similar work, and his words were even stronger: “If I wasn’t clear — please allow me to state it now: Do this full-time.”

And so, starting the first week of 2016, I am. Beating childhood cancer is my main goal now. And, surrounded by a powerful group of parents, kids, advocates, supporters, scientists, and clinical doctors, we will achieve this goal.

Because of Ezra has massive plans. We are working with the NMTRC and Dell on funding and advancing promising personalized medicine research. We are funding and pushing forward a drug called DFMO with very few side effects, which we hope is stopping relapse in kids with neuroblastoma. We pay attention to the entire neuroblastoma research landscape and maintain relationships with other passionate groups who are doing our type of work.

We are going to beat childhood cancer.

Robyn told me, when proofing this post, Ezra was all the parts of me she loved. To know his name has some small attachment to the work we’re doing, affecting so many kids who are fighting childhood cancer now… it’s a bittersweet feeling. And really, though we started this because of Ezra, we continue it because of so very many children.

Because of ___ Logo
Our Because of _____ program recognizes we fight in many more names than Ezra’s.

I’d love your help. We’ve built an incredible network with Because of Ezra and the many people involved in furthering our mission. As I dive full-time into this, we’ll need even more help to make our goals a reality. Please, reach out to me at [email protected] to partner with us. We have big, audacious things we’d like to do  —  and the right support and partners will make them happen. Whether you’re a parent needing to connect to someone or know what treatments are available, or maybe wanting to partner with us through our Because of _____ program, or a corporate partner looking for a charity to align with, or a volunteer wanting to help… there are many opportunities, and we need your help. Let’s continue to be an ever-growing fist in the face of childhood cancer.

picture of ezra with words "curing cancer for kids"

If you’d like to be a part of the work being done to cure childhood cancer, we welcome your involvement. If you are a parent seeking information on clinical trials we help to fund (or anyone with a comment), you can reach us at becauseofezra.org/contact. You can support Because of Ezra financially at becauseofezra.org/give. Because of Ezra, Inc is a 501(c)(3) tax-exempt organization with the Internal Revenue Service. Our EIN is 27–4013571. This article was originally published on my personal blog.

The Mighty, in partnership with Fuck Cancer, is asking the following: What do you wish you had found on Google when you were first diagnosed? Find out how to email us a story submission here.

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