Ryan’s Family Story: Where Are You Going?

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  

By Anita Wagner

As we walked up to the mortuary where we had viewed, touched, and seen my beautiful little boy’s body silently laying there, still, just three years ago, the place we had him cremated at, I wondered how I was going to get my brain to tell my voice to speak, to tell the person, the poor stranger at the front desk, why I was there.

Images of touching Ryan’s dead little body ran through my head, my hands ran over his fuzzy hair, his stomach was flat now, no more bloating from the chemo. No more pain. My fingers gripped his lifeless hands, my lips kissed his cold little checks that still felt so very much like him — too much like him.

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“I need some certificates,” I spit out somehow, “To fly with my son.  My son was cremated here three years ago his name is Ryan.” I placed a small square white box wrapped in cloth on the table to show her and I said, “This is Ryan’s ashes.”

She had kind eyes, and a sympathetic look instantly that made the tears well up inside of me and then the tears just fell, but I spoke, “I need to take my son’s ashes on a plane, we are traveling with his urn and a small box, this box.” She went to the filing cabinet to retrieve a small white sheet of paper.  “Aaahh, Ryan,” she said with a sad smile.  “How old was your baby?” I said Ryan was six. She looked down and then back up and said with a gentle smile, “Where are you going?”

It’s funny how some days I can plan a party, head to the beach with friends, campfires, s’mores, drinks, laughter, weekends filled with nonstop agendas, busy weekdays and nights with dinner, homework, playing taxi to my two boys, scheduling their music lessons, watching my oldest son now 15 turn into a man practically — he’s shaving now, my twelve year old dealing with all the struggles of middle school, but something never feels quiet right.  Something is always a little off. The empty feeling still has not gone away and I don’t think it ever will.

I stopped waiting.

Today I packed away some of Ryan’s things.  Sold his beloved 4X4 orange jeep power wheels.  OUCH! That hurt just about as much as I knew it would. He was not his things, and I keep telling myself that. It still hurts like hell, though, to see all that is left of all that he last touched go away! His room still is filled with all his favorite pillow pets, khung zhu toys, Legos, and far too many beads of courage, a ukulele he will never play. So many things, but it’s hard to part with them.

It was so very hard to part with Ryan.

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My family of now four is getting ready to partake on a journey. A journey of lifetime — a two month trip to Europe.  We’ve never been there, unless you count my husband’s layovers from his military deployments, but we don’t really count them. We will be headed to Ireland, France, Italy, Spain, Germany…the most important part of the trip is Germany.

It will almost be Christmas time there when we arrive in late November to Bavaria. Years ago I showed Ryan and my other two sons pictures on the web of Bavaria’s Christmas market. Like something out of a movie. Beautiful Christmas lights dazzled, people filled the market which was covered in bright white Christmas snow, and Ryan began to cry. Not sobbing, but tears streamed down his cheeks and I said “Why are you crying?” He responded, “Because it is so beautiful that I just want to go there,” as he wiped tears from is cheeks.

Well now you will Ryan, now you will, as I wipe the tears from mine.

My family of now four will spread the little white box of Ryan’s ashes in all the beautiful places he will never go to while my mom watches Ryan’s urn, his ashes all that remain of his body. Sometimes life doesn’t go as we planned and sometimes you just have to take a deep breath, and “just keep swimming.”

This is it.  This is what we’ve got and I’m going to give it my all and make the best damn life and memories I can because I am living for Ryan now too.  We all are. We are all living for Ryan now, and he will go wherever we go . . . always.

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Poem by Robert Frost

 

Sonya’s Story: Princess Maeve and the Dragon

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  

Illustrated and Written By Sonya Keith

“Princess Maeve and the Dragon” is an illustrated children’s e-book drawn and conceived by Sonya to help the children in her life better understand cancer treatments after a friend was diagnosed.  Sonya writes, “Our family friend, Makenzie, has just started chemo. Although at 26 she is not a child, her niece Maeve is two years old. I wrote this story for Darla (my 3 year old) and Maeve to explain why Makenzie will be feeling, looking, and maybe acting differently.  I was hoping it would be a good introduction to a topic I’ve never had to cover with the kids. When my mom died of cancer the kids were all infants and I somehow escaped having to explain all of this.”

Using her phone and the Picsart app, Sonya created the story of a princess who loses her hair.  Building these stories on her phone is a way that Sonya relaxes and deals with the stress of day-to-day life as a social worker and non-profit volunteer in Southern California.  You can follow Sonya at her blog, Darla’s Mom.

 

 

Will’s Story: Being Annoyed

September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  

By Joan Kelley

Will was 16 when he was diagnosed with Acute Lymphoblastic Leukemia in June of 2009. It was the day of our 20th wedding anniversary. John and I were headed out to dinner when the pediatrician called. I thought Will had mono, but the doctor knew immediately from the blood work that he had leukemia and we needed to head down to Children’s Memorial Hospital in Chicago. My anniversary card to my husband, that would later be opened at the hospital, read “The last 20 years have been more than I could dream for. I can’t wait to see what the next 20 holds.”

Little did we know what the next 20 hours would hold and how that moment would forever mark all moments in time in our family.

After sitting in the ER for about five hours, they confirmed the leukemia diagnosis before sending us up to what would become our home away from home – the oncology floor. After the doctor left, I held my breath and my tears and asked Will what he was thinking – this athlete, artist, academic, friend loving kid. He said “I’m annoyed.” That’s it…annoyed.

This 3.5 year journey was going to put the brakes on the life of a teenager – socially (hard to be your friend when you don’t know if you can go to the party because you feel crummy all the time and really your priorities are just a bit different than your peers), academically (it’s hard to take AP Physics when you might only show up one day per week but he did it.), emotionally (mood swings due to drugs and just life) and well physically (he would lose 30 lb in the first month, nausea every day, no more hair, neuropathy and the boy who used to run could watch his little brother from a chair on the sidelines)

Annoyed doesn’t quite sum it up for me but that’s who Will was – you see Will loved life and he wasn’t going to let cancer take the core of who he was. It could have all those other things, it could change his reality, but it would not change who he was.

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Fast forward ten months of weekly chemo, hospital stays, radiation, nausea, pills and pricks…and yes lots of annoyances! We felt like we had finally made it through the worst. But Will caught a series of infections his body couldn’t fight off and by the end of May we had tried everything and we had to say goodbye. Not exactly the order of things in your parenting – burying your 17 year old son, grieving with your husband and 14, 11, 8 year old children., realizing that the side effects of the very drugs that were saving his life had played into these infections. Annoyed doesn’t quite describe that, if you ask me.

Fast forward five years. Will has been gone four years now. Our oldest daughter is older than Will ever was. She has gone off to college. We are watching our other two boys grow up far too quickly. And yes we still grieve – that’s just how it is. You don’t get over it. You move through it. And you learn how to cope, you learn how to hold onto hope again, you learn how to trust God even deeper. But you still grieve and yes you are still “annoyed.”

You walk by their school pictures in the hall – three change out each year, Will’s is static and starting to look a bit faded. You still struggle and get anxious when meeting new people and they ask “so how many kids do you have?” I know the answer…but will they want to hear it? You still get mail for Will from colleges and credit cards. You still want to wake up and hope it was all a bad dream and have him walk around the corner…but it’s true…your son died.

And so because you belong to that group of ferociously courageous parents whose children have cancer – you do the hard thing and decide to not just be annoyed, but choose to live out your life remembering them well, making a difference for others – riding your bike, raising money and awareness, giving speeches, sitting with other moms who have lost their kids and crying with them because they need to tell the story to someone who gets it and sometimes doing crazy things like annual waterballoon fights with 100+ awesome people from your community because that’s how you want Will remembered – fun loving and generous and a little bit silly.

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You see, cancer did not win. He didn’t lose his battle. Will is still a survivor in my book. His life has far outlived his 17 years. Cancer didn’t define it. His story’s just not over yet this side of heaven. But this “annoyance” in Will’s life has changed all of ours and then some. Grateful for the lives of all four of my kids and praying for a day when I sit with my grandkids telling them about “Uncle Will” and hopefully them not knowing what cancer is because it’s just not an annoyance for anyone anymore!

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If you would like to support Will’s family in a bike ride for the Leukemia and Lymphoma Society – Team in Training, please join them by riding the Blood Sweat and Tears Ride in Highland Park, Illinois on Sept 28th, 2014, praying for them, or donating by going HERE to help them make a difference for other children with cancer and remember their son Will.  

More of Will’s Story can be found at his CaringBridge site HERE.