Wendy Avery

I can’t believe that I know someone who went to space and orbited the earth. (Watch here: https://www.youtube.com/watch?v=3pv01sSq44w )

Hayley Arceneaux is a childhood cancer survivor who is now a Physician’s Assistant at St. Jude Children’s Research Hospital.  The first time I was introduced to Hayley was in a DVD that was sent to me about 20 years ago when I was raising money for St. Jude by holding a trike-a-thon fundraiser in my job as a preschool director. In the video called “Welcome to My St. Jude”, Hayley walks through the hospital and gives a tour from her perspective. 

She was just a little girl. Nick was still several years away from getting cancer.

A lot has happened since then.

We met in person years later as we sat across from each other at dinner with mutual friends during one of my many trips to St. Jude. I said to the now-grown-up-version of Hayley “I think I know you from somewhere.” Then I realized that she was the little girl I had seen in that video years before. 

Small world.

Netflix released a 5 episode series called “Countdown: Inspiration4 Mission to Space”. In the first episode we are introduced to Hayley and her journey with childhood cancer. Hayley’s mom, Colleen, recounts walking through the door of St. Jude for the first time…

“Hayley and I flew to Memphis. I walked in and they had the reception desk. And I said ‘I’m here. My daughter is Hayl…’ and I just burst into tears. I couldn’t even finish saying her name. And I remember, I just kind of stepped back and trying to compose myself, and I feel these arms around me. And it was the receptionist, Miss Penny, and she whispered in my ear, she said ‘It’s gonna be ok. It’s gonna be ok. You’re part of the St. Jude family now. We’re going to take care of her, and we’re gonna take care of you, too.’”

As I listened to Colleen’s words, my mind flashed back to that cold, Wednesday night at 8pm on December, 14 2005 when Nick and I walked through those very same doors. We received the same love and care from our new St. Jude family in those first moments, throughout Nick’s treatment, until Nick’s last breath, and even now 15 years later.

Once a St. Jude family, always a St. Jude family.

I can’t help but think of Hayley’s mom and what she must have felt in the moments leading up to the launch of the rocket ship that held her little girl. I wonder if she was holding her breath. Because I sure was.

In fact, I felt like I had been holding my breath from the days leading up to the launch all the way until the Dragon spacecraft holding the Inspiration4 crew splashed down safely off of the Florida coast.

IT’S OK THAT YOU’RE NOT OK

One of the strange symptoms I had during early grief after Nick’s death was a feeling like I couldn’t breathe, especially when I had to talk. It actually felt like someone had their hands squeezed around my neck. It was hard to get words out. 

In her excellent book “It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand”, Megan Devine says this:

“We often think of grief as primarily emotional, but grief is a full-body, full-mind experience. You’re not just missing the one you’ve lost; your entire physiological system is reacting, too. Studies in neurobiology show that losing someone close to us changes our biochemistry: there are actual physical reasons for your insomnia, your exhaustion, and your racing heart. Respiration, heart rate, and nervous system responses are all partially regulated by close contact with familiar people and animals; these brain functions are all deeply affected when you’ve lost someone close.

Grief affects the appetite, digestion, blood pressure, heart rate, respiration, muscle fatigue, and sleep–basically everything. If it’s in the body, grief affects it.

In addition to physical effects, cognitive changes, memory loss, confusion, and shortened attention spans are all common in early grief. Some effects even last for years–and that’s perfectly normal.

It’s true on so many levels: losing someone changes you.”

Yes, it is true. Losing Nick changed me. I can never be the person I was before I experienced the death of my child. That’s not necessarily good or bad. It just is.

I remember the final days of Nick’s treatment protocol when he was in remission and everything was going well. We were getting ready to head back home to Ohio after living in Memphis, Tennessee for close to 6 months.

I had changed.

I had been living among sickness and cancer, suffering and death every single day while the rest of the outside world kept on living their lives going to work, and school, and the movies, and Starbucks, and Walmart. ALL of the friends I had been living with had a child with cancer or another catastrophic disease.

When Nick died, it was harder than ever to return home. How could I even have a conversation with someone else?  My son was dead. I was not bringing him home this time. There was nothing else to talk about.

When I left with Nick 8 months earlier to start treatment at St. Jude everyone had cheered us on.

“The neighborhood waved, and said

(Wendy), be brave, and you’re gonna be fine

And maybe it’s me

But it all seems like lifetimes ago

So what do I say to these faces that I used to know?

‘Hey, I’m home?’”   (Breathe – In the Heights https://www.youtube.com/watch?v=5l9UK3yQTfA )

I didn’t know how to go back home and jump back onto that speeding merry-go-round of life that had been going on without me. It was hard to breathe.

I felt guilty. I had failed. I am Nick’s mom and I was supposed to make things better. This wasn’t what I had planned. And I hated my new reality. 

REALITY, HOPE, AND A LITTLE INSPIRATION

Reality has been pretty awful for all of us these past few years. There are so many difficult things happening in the world right now. All of the anger, hate, confusion, sickness, separation, and so much death is overwhelming.

This is why the Inspiration4 mission was so important at this very time in history. We all needed them to succeed. We all needed to watch them come home healthy and happy. We all needed to see the world, OUR world, from the cupola of the Dragon spacecraft.  And when we see it from that vantage point then we can begin to see that we are one people, one crew, orbiting the sun over and over again on this big blue marble that we all call home.

The Inspiration4 had four seats on the Dragon spacecraft, each seat representing a different pillar Leadership, Hope, Generosity, and Prosperity.

Hope can mean something different for every person. What is it that you hope for? A new job? Time with friends? For the cancer to be gone? For the depression to lift?

This was Hayley’s seat. She represents the hope of survival for every child going through cancer treatment and the hope that just maybe one day, we will find a cure for childhood cancer so that NO child would die in the dawn of life.

The Inspiration4 has helped to bring that hope a little closer to reality by raising well over $200 million for St. Jude through their 3 day mission to space! 

A good leader creates an inspiring vision of the future then motivates and inspires people to engage with that vision. Jared Isaacman certainly filled the leadership seat well.

I am forever thankful for this man’s heart and his vision to help find a cure for childhood cancer.

Dr. Sian Proctor sat in the seat representing prosperity. We often think of this word in terms of having a lot of money but it is so much more than that. Can someone with no money ever be considered prosperous?

“Blessed are the poor in spirit, for theirs is the kingdom of heaven.

Blessed are those who mourn, for they will be comforted.

Blessed are the meek, for they will inherit the earth.

Blessed are those who hunger and thirst for righteousness, for they will be filled.

Blessed are the merciful, for they will be shown mercy.

Blessed are the pure in heart, for they will see God.  

Blessed are the peacemakers, for they will be called children of God.

Blessed are those who are persecuted because of righteousness, for theirs is the kingdom of heaven.

Blessed are you when people insult you, persecute you and falsely say all kinds of evil against you because of me. 

Rejoice and be glad, because great is your reward in heaven.”  ~Jesus

Now THAT is true prosperity.

Finally, Chris Sembroski sat in the seat of generosity. Donating money to St. Jude put Chris’ name in a drawing for this final spot on the Inspiration4 crew. 

St. Jude relies on the generosity of Chris and so many others. Why should you support St. Jude? Here are just a few reasons…

St. Jude doctors are working every day to find cures. Treatments invented at St. Jude have helped push the overall childhood cancer survival rate from 20% to 80% since their doors opened in 1962.

Support means that our St. Jude families never receive a bill from St. Jude for treatment, travel, housing or food — because all a family should worry about is helping their child live.

I often get this question… “Why should I support a hospital in Memphis, Tennessee when I have a local children’s hospital where I live?” 

My answer: Please support your local children’s hospital! Also know that St. Jude is helping many more kids than just the ones who go to St. Jude for treatment. St. Jude freely shares the discoveries it makes, which means doctors and scientists worldwide can use that knowledge to save thousands more children.

I can bet that your local children’s hospital treats kids diagnosed with cancer with treatment protocols that were developed at St. Jude.

Worldwide, more than 90% of children with cancer live in low- and middle-income countries. Too many of those children lack access to adequate diagnosis and treatment. Most of them will die from their diseases.

That statistic is about to change.

In the past few years, St. Jude has launched an ambitious initiative to improve access to care to children with cancer and life-threatening blood diseases in every corner of the world, and to develop plans to enhance its quality and provide better options for cure.

A donation to St. Jude greatly helps St. Jude families, families who live in your community, and families around the world. 

This is why I believe in the work of St. Jude Children’s Research Hospital. 

And this is why I am committing to biking 150 miles in the month of September. And why I set a lofty fundraising goal of $15,000…$1,000 for every year that Nick has been gone.

Click the link below or on “Donate Now” at the top of this page to access my fundraising page and to keep up with my progress.

https://www.facebook.com/donate/393371508823026/

One of my favorite parts about biking on our metroparks bikeway is when I come up on someone who is going slower than me and I have to pass them. I get to shout out “On your left!” so they have a heads up that I’m coming and will stay to the right so we don’t collide.

Now, before you think I am a fast rider, these “slower” people I’m referring to are dog walkers, joggers, and the occasional octogenarian biker. Slow and steady wins the race!

In the Marvel Cinematic Universe (MCU), the first time that Steve Rogers (aka: Captain America) and Sam Wilson (aka: Falcon) meet is in the 2014 movie “Captain America: The Winter Soldier” when they are both running laps around the Lincoln Memorial Reflecting Pool.

Since Captain America is a super soldier, he laps Sam over and over again. Every time he passes he says “On your left.” Sam gets so tired of being outrun that on Cap’s approach he starts yelling “Don’t say it! Don’t you say it!”

“On your left!”

Throughout the movie franchise, that phrase becomes so much more as the friendship between Steve and Sam evolves.

Steve wakes up in the hospital with Sam by his side. Steve sees him and says “On your left”…meaning “Hey, I’m still here with you.”

Then in the climactic ending of the 2019 film, “Avengers: Endgame”, Sam has been snapped out of existence for the past 5 years along with half of all life on earth. As Steve, and the few Avengers left, attempt to undo what the bad guy, Thanos, has done he hears a voice he hasn’t heard in half a decade… 

“Hey, Cap, do you read me? Cap, it’s Sam. Can you hear me? On your left.”

Sam comes in through the portal on Cap’s left, after having been one of the missing for 5 years, and they fight side by side to defeat their enemy. 

On his left. 

I Get By With a Little Help From My Friends

My big sister, Judy, was the best. 

When I was a little girl, I wanted to be her when I grew up. She enjoyed being with me even though I was 12 years younger. She took me and my younger sibs to the movies and rollerskating. She had us over on Friday nights for sleepovers after she got married. She also drove a 1965 powder blue mustang and wore huge bell bottom pants with platform shoes! She was the coolest person I knew. 

When Judy was 24 she had her first baby, a boy she named Michael Christopher. And I became an aunt for the first time at the age of 12.

Within hours, doctors knew something was wrong. Mike was taken by ambulance to Akron Children’s Hospital and in the first few days of his life he was diagnosed with Cystic Fibrosis. In 1974, the average life expectancy of a baby born with CF was 12 years old.

Mike was in and out of the hospital as he grew up. Judy worked full time and all of her “vacation time” was spent in the hospital with Mike. When Mike was 14 years old he became a big brother when Judy gave birth to her second son, Anthony, who was born with cerebral palsy.

Mike’s illness continued to progress and in 1998, he needed a double lung transplant. Even though he did well for several years, Mike’s body eventually rejected the lungs and my 25 year old, kind, hilarious, fun-loving nephew died on September 26, 2000.

So when Nick died 5 years and 11 months after Mike, Judy never actually said the words “on your left” but that’s where she always was. On my left. She had my back. She was the one person who really understood and listened through the dark days of early grief.

At a time when grief support did not exist at St. Jude Children’s Research Hospital, I had grief support from my big sis.

And then she died.

Several years into my work as a St. Jude Parent Adviser, I co-authored an article that was published in the Journal of Pain and Symptom Management, titled “Empowering Bereaved Parents Through the Development of a Comprehensive Bereavement Program”.

At the end of this article, I shared part of Judy’s story:

“Eight months after my son Nick died of cancer, my sister Judy died suddenly. She had been living as a bereaved mom for 7 years after her son Mike died from complications of Cystic Fibrosis (CF). Our family supported Judy in the best way that we knew how but, until I lost Nick, I couldn’t fully understand the depth of her grief. Judy was a single mom with 2 boys, one with CF and the other with cerebral palsy. Her life struggles set her up for complicated grief after Mike died and that is exactly what happened. When Judy was found dead in her home of an apparent heart attack, it was also discovered that over the past year of her life she had been living as a hoarder. Many times people become hoarders because they have experienced so much loss that they no longer can get rid of anything. 

None of us knew. 

In that moment, standing in Judy’s living room, I made a conscious decision that I would not end up the same way.

My sister is the reason why I became involved in the development of our bereavement program at St. Jude. I am determined to do whatever it takes to ensure that as few people as possible end up like Judy. If we are doing the best that we can to support our bereaved families, we are helping them to not only live, but also eventually thrive again. Using bereaved parents as a part of that supportive process makes it even more meaningful as no one can understand what it feels like to lose a child except for another parent who has lost a child.

As our bereavement program grows and develops even further, I am hopeful that the things we have learned along the way might also be helpful to other institutions around the world as we strive together to bring hope and healing to bereaved families everywhere.”

You can read the full text of the article here:

https://www.jpsmjournal.com/article/S0885-3924(16)31201-5/fulltext

No One is Alone

Just last evening I had a zoom meeting with a children’s hospital in Australia. I have been meeting with this team for several years as they have worked to develop their own parent support program. 

Last night’s meeting was a continued conversation I’ve been having with bereaved dad, Wayne, who has been an instrumental part of getting this program off the ground in Australia. He wanted to talk about his very first bereaved parent mentoring encounter that happened just yesterday.

He told me how hard and how beautiful it was. I always call it “the worst best thing” that I do. We chatted about what it is like to hear those nightmare stories that other parents have lived when we have lived them ourselves. And how necessary it is for us to listen and bear witness to the pain of others like ourselves.

Wayne asked me what my first parent mentor encounter was like. It happened very organically and wasn’t really official since we were still in the pilot phase of our Parent Mentor program and hadn’t added the bereaved portion yet.

I was at St. Jude for meetings. My son, Josh, had gone with me on this particular trip. We met up with Nick’s doctor outside of the cafeteria just to catch up. As we sat there chatting, Nick’s doctor got a text. He looked at me and asked if I could come to the clinic area with him. He wanted to introduce me to a mom whose 3 year old daughter had died just 3 days before. This family could not find the strength to go home to face family and friends and plan a funeral for their baby.

When we got back to the leukemia clinic, the place where Nick and I spent so much of our time, I saw a young mom and dad with 3 little children standing and talking with the clinic staff. If I had not known the story I would not have thought their daughter had just died.

We approached them and Nick’s doctor introduced me…”This is Wendy Avery. Her son Nick was a patient of mine. He died a few years ago.” This mom stopped everything and looked in my eyes. Then she grabbed me, held on, and began weeping. I had not yet said a word. 

But at that moment, she knew that I knew.

All I could tell her was this: “I know how hard it is to go home. I remember. And it will be one of the hardest things you ever have to do. But you can do it. I am living proof that you can do it.”

They went home the next morning.

All I did was let that mom know that she was not alone. Today, she mentors other moms who are in the early days of grief.

There is a beautiful song toward the end of the musical “Into the Woods”. (Listen here: https://www.youtube.com/watch?v=unVTf5_p_1A ) 

Four people have been thrown together in the worst of situations. All have experienced the death of someone they love and are feeling completely alone. In that moment of aloneness they find family in each other and in their shared losses.

“Mother cannot guide you

Now you’re on your own

Only me beside you

Still, you’re not alone

No one is alone. Truly

No one is alone

Someone is on your side

No one is alone”

This is why I believe in the work of St. Jude Children’s Research Hospital. 

They are saving the lives of children around the world with cancer and other catastrophic diseases every single day.

 And they are saving the lives of the families left behind after a child dies. Not just here but around the globe.

On your left. Someone is on your side. No one is alone.

I am committing to biking 150 miles in the month of September and have set a lofty fundraising goal of $15,000…$1,000 for every year that Nick has been gone.

I have accumulated 35.65 miles in Week One! Come back here next week to check on my progress.

Please donate any amount you can and share this blog with others to help me get the word out.

Click the link below or on “Donate Now” at the top of this page to access my fundraising page.

https://www.facebook.com/donate/393371508823026/

I cannot tell you how many times I have watched “Hamilton” on Disney+. Honestly, I have lost count. And when I’m not watching “Hamilton” you will probably find me singing along to the soundtrack. The song “Who Lives, Who Dies, Who Tells Your Story” says this:

“And when you’re gone, who remembers your name?

Who keeps your flame?

Who tells your story?”

On August 25, we marked the 15 year anniversary of Nick’s death. It always feels weird to call it an “anniversary” like it should be celebrated or something. It feels more fitting to say it has been 15 years since the worst nightmare of my entire life. If you have ever buried a child, you know that it is.

This year hit me hard as I thought about the fact that Nick has been gone almost longer than we had him here with us. That reality is very hard to take.

When a child dies, it often happens that a parent will look for ways to continue their child’s legacy. To continue to tell their story. 

I didn’t have to look for it…Nick’s legacy found me when I was asked to become a parent adviser for St. Jude Children’s Research Hospital 12 years ago, the very place where Nick was treated, where he and I lived, and where he died. The very place that, back in 2006, had no grief support for the families of kids who died. 

I very reluctantly agreed to be a parent adviser. To be honest, I didn’t want to do it. It was my husband who said “Don’t give them an answer right now. Let’s wait and pray. I think that there is more for you to do there.” So I eventually said yes thinking I would do this thing for a year or two…and here we are.

I am so grateful that in the years since Nick’s death, I have been able to work with Dr. Justin Baker, who I first met as a Fellow at Nick’s bedside in the last days of his life, to create an end of life and bereavement support program at St. Jude. In the past decade we have even been able to help other children’s hospitals across the country and around the world to start their own grief support programs for families whose children have died.

I have had meetings with people in Australia, Bolivia, Africa, Israel, and too many other places here in the US and around the world to count.

Recently I was introduced by our St. Jude bereavement coordinator in this way…

“Wendy is the mother of Nick who was also a patient at St. Jude.  Nick passed away in 2006 at the age of 15 and has an amazing legacy.  He is the reason we have a bereavement program at St. Jude.”

Legacy.

“What is a legacy? It’s planting seeds in a garden you never get to see.” (Hamilton)

Nick planted seeds in a garden he would not see in this life. I get to water and tend and watch as the fruits of his suffering grow into a beautiful garden that reaches the lives of many. 

When Life Throws You a Plot Twist

If you have read this blog before you know that 5 years ago I ran 13.1 miles in honor of my son’s life and to raise money for St. Jude. (If this is your first time reading this blog, please see previous posts.)

I am a horrible fundraiser. I hate asking for money even if it’s for a really good reason. When I signed up for the half marathon, I pledged to raise $2,500. Somehow I miraculously raised over $12,000! I still can’t believe that actually happened.

It was my intention to mark this 15 year anniversary of Nick’s death with an epic “ride across the state” on my bike via the Ohio to Erie Trail, a bike trail starting in Cleveland and ending 326 miles southwest in Cincinnati.  https://www.ohiotoerietrail.org/plan-your-trip/  My husband was going to join me. We were going to ride the trail, stay in AirBNB’s along the way, and I would attempt to raise $15,000, ($1,000 for each year that Nick has been gone) to continue the great work of St. Jude in his memory. I would blog during the training, the preparation, and the actual ride.

In spring of 2020, I started training for this adventure. During a time of COVID-19, masks, social distancing, and isolation, it was a most freeing feeling to ride my bike alone for miles with the wind in my face. Some days I ran but mostly I biked. I was surprised at how quickly I was able to add miles with each ride and I began to get excited about biking across the state. I bought trail maps and we began looking for AirBNB’s along the route. 

Then one day, about 6 months into serious biking, I decided to take a quick ride on my lunch break (like so many, I have been working remotely from home since covid hit). Since I only had a 30 minute window, I quickly changed my clothes, jumped on my bike, and started out on the streets of my neighborhood. I normally rode on the bike path that is close to my house but not this day. 

About halfway through my ride, I suddenly came across a divot in the road. Because of the location and my inability to see it until I was literally on top of it, I had no choice but to ride over it. This caused a huge jolt. I held on and thankfully didn’t wipe out on the pavement. I felt fine and continued on but in the days to follow, I would slowly find out that I was not OK.

The next day I felt tightness in my lower back and an aching feeling in my left hip but it wasn’t bad, just annoying. By the end of that week, I started to feel numbness in my left foot which quickly turned into numbness in my entire left leg…for 4 solid months! It was so bad that I experienced “foot drop” and could not raise the front part of my left foot. It was difficult to walk. I had much trouble sleeping because of the pain in my hip. And I definitely could not ride my bike.

Yep. Big plot twist.

Doctors diagnosed me with sacroiliac joint dysfunction which means that my left SI joint had essentially been knocked out of place by my encounter with the hole in the road and was pressing on the nerve that runs through that joint causing numbness and weakness. 

With the help of my chiropractor and massage therapist they were able to get that joint back into place after 4 months of working on it. Gradually feeling came back in my leg, then my foot, and the foot drop has been about 90% resolved.

I had every intention of slowly restarting my training and making our bike trip a reality when my 89 year old mother-in-law had some sudden health issues and was no longer able to live on her own. She moved in with us at the end of April 2021.

The Rest is Still Unwritten

I had resigned myself to just letting this year pass without some sort of event or fundraiser when I happened to see a Facebook post by one of my friends who is a doctor at St. Jude. She is participating in a “150 Mile Cycle for Childhood Cancer”. 

What is with the number 15 anyway? 

Thinking this must not be a coincidence, I checked it out then immediately signed up.

So…I will be riding my bike a total of 150 miles during the month of September, Childhood Cancer Awareness Month. I will be raising money that will help continue the great work of St. Jude Children’s Research Hospital to save the lives of kids with cancer and also save the lives of family members who are left behind when a child dies.

I have set a lofty fundraising goal of $15,000. $100 for each mile I ride but more importantly $1,000 for each year that Nick has been gone.

I have no idea what will happen as I take on this 150 mile biking adventure. The rest of that story, like the rest of the days we each have ahead of us, are still unwritten. 

Sometimes the story includes running a half marathon or biking across the state. 

Sometimes it means spending time with my beautiful grandchildren or teaching kid’s church or caring for another person who is in need.

And sometimes it simply means getting out of bed in the morning determined to find a way to live purposefully after burying your child.

No matter what the unwritten pages of this next month hold for me, I am inviting you along on the journey. Be a part of the adventure. Come back here every week to see what happens next. Donate any amount you can. And please share this journey with your friends and family so that we can reach this goal together.

https://www.facebook.com/donate/393371508823026/

It has been 33 days since the St. Jude Children’s Research Hospital Half Marathon.

I really did intend to write my post-race day blog before today. But with a birthday in the family every 6 days in December, then Christmas, then New Year’s…life happens.

However, since the first blog entry announcing my intention to run the half marathon was written on the 10^th anniversary of Nick’s death, it seems fitting that my last blog entry is being written today, on the 26th anniversary of Nick’s birth.

 

First let me say this about the race…I set my original fundraising goal at $2,500.  If you have been following this blog you will know that I had to keep increasing that goal because of the generosity of so many of you.

Donations came in from my kids, my siblings, my in-laws, nieces, nephews, cousins, 2^nd cousins, and cousins-in-law.

Old family friends from my childhood;

friends from the church I grew up in, the church I used to attend, and the church I go to now;

friends from childhood and the children of my friends from childhood;

friends from junior high, senior high, and marching band days.

St. Jude social workers, volunteer coordinators, doctors, and psychologists.

Co-workers past and present, corporations, and complete strangers.

Because of all of you, together we raised $12,025 that goes directly to helping kids with cancer and their families all over the world!

I am amazed and speechless…

 

ON YOUR MARK, GET SET…

Yes, this is a real picture of the starting line. I don’t know what I was expecting but this was crazy! 23,000 people strong!

Every 90 seconds, another corral of people was let out of the gate. As one group left, the rest of us moved forward waiting for our turn to go. We could hear every countdown for every group ahead of us and as we moved closer everyone got more focused.

During this time I noticed a young mom on my left. She was holding a huge poster board sized picture on a pole. The picture was of a little girl maybe 2 or 3 years old.

As we moved forward, countdown on, and next to be let out of the gate, I touched her arm and asked who the girl was.

“It’s my daughter, Natalie. She died 4 months ago.”

I held her hand and responded, “Natalie is beautiful. My son, Nick, also died of cancer 10 years ago.”

This complete stranger reached over, embraced me, and kissed me on the cheek as our countdown continued. Five seconds later, we were off.

 

LET US RUN WITH PERSEVERANCE THE RACE MARKED OUT FOR US

The course ran through downtown Memphis, down jazzy Beale Street, along the great Mississippi, through the St. Jude campus, past the Target House, out of town to the Memphis Zoo, taking a turn to the west past Sun Studios and toward our final destination…Autozone Park.

I never thought about the fact that I had 13.1 miles ahead of me. I just put one foot in front of the other. I was determined to finish. That’s it.

 

If I wrote about all of the remarkable things that happened along the way, this blog post would become a novel. Instead, let me tell you about 3 things that I was not expecting.

First of all, as I ran through the St. Jude campus at miles 5 and 6, I was really ok. I thought that it would be an emotionally difficult thing to do but it wasn’t.  Instead, as I approached the Target House at mile 8 (St. Jude long term housing for patients and families) I could not breathe.  This is where Nick and I had lived for 6 months while he was in treatment at St. Jude. Even though I have visited the Target House many times since Nick’s death, memories came flooding back like a tidal wave and I had to stop on the road at the front gate for a minute before I could move on.

  

Entering the St. Jude Campus                                Our home…Target House

 

Another thing that surprised me was the huge number of people lining the streets, hanging off bridges, and cheering from balconies. I cannot say how many high fives were given to me along the way.  Too many to count.  And even though I had my earbuds in, music playing, I could hear them all shouting encouraging words.

“You got this!”

“You’re doing great!”

“You’re almost there!”

“Keep running for Nick!”

People were actually reading my shirt and yelling out Nick’s name. That was pretty awesome.

 

The third thing that surprised me was the number of people who ran alongside me to ask about my shirt. I guess no one else was running with 93 ribbons sewn onto their shirt. (See pictures of my race day shirt in the November 28 blog entry “Carry On”).

“Tell me about your shirt. Are those the names of donors?”

I would take out an earbud and answer… “Nick is my son. He died at St. Jude 10 years ago after battling cancer for 8 months. The names on the ribbons are other kids who I have gotten to know along the way. The yellow ribbons are the ones who have survived.  The white ribbons are those who have died. I am carrying each of them with me today.”

Some of those who asked would grab my hand for a few moments and walk beside me. All would leave me with tears in their eyes promising to remember Nick as they crossed the finish line.

 

THE FINISH LINE

As I approached mile marker 12, I thought about how close I was yet how far I still felt from the finish line. One foot in front of the other.

When I started the race, I set my phone to play my race day playlist on a random shuffle (some of the songs on that playlist I have shared with you in previous blog entries). The songs did not play in any order and I didn’t know what was coming next.

A short distance into mile 12, a new song began to play. It would “randomly” be the song that ended my race.

I beg of you to pause reading right now and click the link below to listen to what I heard as I crossed the finish line.

https://www.youtube.com/watch?v=GKMjEvF2Fkw

Lay your head down tonight
Take a rest from the fight
Don’t try to figure it out
Just listen to what I’m whispering to your heart
‘Cause I know this is not
Anything like you thought
The story of your life was gonna be
And it feels like the end has started closing in on you
But it’s just not true
There’s so much of the story that’s still yet to unfold

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
You’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding

God’s plan from the start
For this world and your heart
Has been to show His glory and His grace
Forever revealing the depth and the beauty of
His unfailing Love
And the story has only begun

And this is going to be a glorious unfolding
Just you wait and see and you will be amazed
We’ve just got to believe the story is so far from over
So hold on to every promise God has made to us
And watch this glorious unfolding

We were made to run through fields of forever
Singing songs to our Savior and King
So let us remember this life we’re living
Is just the beginning of the beginning

Of this glorious unfolding
We will watch and see and we will be amazed
If we just keep on believing the story is so far from over
And hold on to every promise God has made to us
We’ll see the glorious unfolding

Just watch and see
This is just the beginning of the beginning

            

I crossed the finish line straight to my waiting husband and cried like a baby. We did it!

 

 

LIFE AND DEATH

We flew home to Ohio late on the day of the race. We had to get home to celebrate the 1^st birthday of our grandson, Micah, the next day.

I thought for sure that our legs would be cramping up on the flights but that didn’t happen. Walking through the airports was a bit rough and we must’ve looked like a couple of 90 years olds!

It was great to be back home with our kids and grandkids. At the same time it was extremely surreal and hard to believe that we had finished a half-marathon just 24 hours before.

After the last few emotionally and physically challenging days it was such a joy to watch my grandson destroy his birthday cake and open presents.

After the cleanup, we went home to our still packed suitcases. I took a shower and finally dropped into bed exhausted. About a half hour into some movie that I wasn’t paying attention to, I heard my cell phone beep…a text. It was my best friend, Lori…

“Sorry to be the bearer of bad news but Jeff just passed away. He was unresponsive at home and they rushed him to the hospital with no good news.”

Jeff is Lori’s brother and a lifelong friend of our family. And exactly one week after I had finished the half marathon, I sat at the funeral of a dear friend.

 

I know this is not
Anything like you thought
The story of your life was gonna be…

 

With every breath we teeter on the edge of life and death.

 

So let us remember this life we’re living
Is just the beginning of the beginning…

 

Each of us will either make it through the day or we won’t.

 

If we just keep on believing the story is so far from over
And hold on to every promise God has made to us
We’ll see the glorious unfolding…

 

Run the race. Finish well.

 

A huge shout out and much gratefulness to every one of you amazing people who donated. (Names are in alphabetical order)

Shawna Ammon

Shirley Auxter

Josh, Carissa, and Ellie Avery

Ken and Jan Avery

Luke Avery

Travis and Libby Avery

The Ball Corporation

Kaylyn Bass

The Bernstein Family

Rachele Black

Bud and Ruth Ann Briggs

Myrle Briggs

Robert Briggs

Jen Brooks

Ethan and Amanda Brownlee

Jay, Alisha, Avery, and Micah Brownlee

Bonnie Cable

Claudia Carrell

Valarie Casey

Lisa Clark

Lorie Craig

Kim DeBlasio

Jake DeHaan

Jill and Jeff DeHaan

Bea and Bob Donato

The Elliott Family

Barbara Faires

Martin Fauss

Bud Fiffick

Greg and Tina Frary

Beth Fredrickson

MaryAnn Graff

Nancy Halliday

Cynthia Henry

Judith Hicks

Leslie Hodgkinson

Homecare with Heart (Stephen Jones, Dottie McLean & John Roberts)

Penny Huffman

Todd and Julie Johnson

Vickilee Johnson

Sandy Kalmeyer

Karen Kaufman

Erica Kaye

Dee and Jo Ellen Kelly

Harry and Cathy Kimes

Arlene Klepfer

Jim and Betsy LaRiccia

Dallas Lehman

Cindy Lomeli

Stephanie Maiorca-Notman

Paul and Kimmy Mallin

The Maurice Family

Holly McMorrow

Beth Meadows

Karma Minkewicz

Cheryl Mohl

Tom Newman

Amy O’Brien

Sherry Oravitz

Lynn Parm

Lee Ann Briggs Potts

Deanna Pylypiak

Jimmy and Kelsey Riggi

Megan Roemer

Rebecca Ruffner

Tracy Sabol

Brin Schaechtel

Seville UMC

Joel and Susie Shields

Christy Simo

Lori Smith

Tracy Kraus Smith

Bob and Debbie Stauffer

Rick and Daneen Stauffer

Charlotte Wilson Stedman

Ginny Sullivan

Jan Szari

Greg Trent

Lori Tolliver

Wally and Beth Valantine

Tamra Leohr Weimer

Carol Willson

Karen Yoho

And 11 anonymous people…you know who you are…thank you from the bottom of my heart.

5 DAYS UNTIL RACE DAY!

(The purpose of this 16-week blog is to shine the light on childhood cancer by sharing our family’s personal experience as I prepare to run my first ever half marathon and raise money to help children with cancer and their families.  Be a part of the story! Donate here: http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2078389&pg=personal&fr_id=59186  then share with your family and friends.)

 

In just five days, I will be running 13.1 miles.

When I decided to sign up for the St. Jude Memphis Half Marathon back in May, I knew it would be challenging for this 54 year old, non-running grandma.  I have battled through wake-you-up-in-the-middle-of-the-night-pain, wicked shin splints, and serious doubt.

The reason that I decided to run in the first place was for my son, Nick.  It has been an entire decade since he left us for Heaven and I wanted to do something meaningful to remember and honor his life.  Raising money to support childhood cancer treatment and research was just the way to do that.

I figured it would be emotional training for this specific half marathon but I had no idea that I would spend many times running in tears. Not because of pain but because I miss my boy or I want my mom or I remember so many other children who have suffered.

 

I WILL CARRY YOU

Sometimes I wonder why I know so many children who have died.  The weight of their memories is not something that I take lightly. Some I have known in this life.  Some I was not able to meet this side of Heaven but have come to know well through their surviving family members. Each one of them has had a part to play in making me into the person that I have become.

Several months ago, I wondered if there was a way, on race day, that I could remember all of these dear children along with the ones who have survived.  I decided that I would create a race day t-shirt and on that shirt I would sew ribbons, white for those now gone and gold for the survivors. Each ribbon would bear the name of that specific person who has personally impacted my life.

Just yesterday I finished sewing the last of 93 ribbons onto my shirt. (You can see most of those names in the September 1 blog titled “Superheroes”.)

Aside from the physical training that I have had to do over the past 6 months, there was this other side to the preparations that took no physical effort at all. In fact, it only required me to sit still and think. And as I carefully sewed each name onto my shirt, I saw their faces and remembered.  I gave thanks to God for those who have survived. I mourned again for those who have not. Many times a vivid memory came to mind. Sometimes I could hear their laughter.

 

DO YOU FEEL THE WEIGHT OF THE WORLD?

  

This shirt does not weigh much at all and yet it carries the weight of the world…countless moments, weeks, and years of sickness, suffering, and sometimes profound loss for each name represented and for their families. The loss may not even be death itself but the loss of a limb or the loss of a future dream or the loss of that “before cancer” innocence.

In just five days, I will be running 13.1 miles.

I will be privileged to carry each of these dear ones with me.

A song was written for a family who lost their infant daughter. This song, “I Will Carry You” by Selah, is song #63 on my Race Day Playlist.  The lyrics remind me of the calling on my life to carry my own son’s legacy through the years to come.

I will carry you while your heart beats here. Long beyond the empty cradle through the coming years, I will carry you all my life and I will praise the One Who’s chosen me to carry you.

Please listen to this song (link below) and consider donating to the St. Jude Memphis Half Marathon so together we can carry the burden and find a cure for childhood cancer.

https://www.youtube.com/watch?v=FlDUkp1Ts8A

There were photographs I wanted to take
Things I wanted to show you
Sing sweet lullabies, wipe your teary eyes
Who could love you like this?

People say that I am brave but I’m not
Truth is I’m barely hanging on
But there’s a greater story
Written long before me
Because He loves you like this

So I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All my life
And I will praise the One Who’s chosen me
To carry you

Such a short time
Such a long road
All this madness but I know
That the silence
Has brought me to His voice
And He says…

I’ve shown him photographs of time beginning
Walked him through the parted seas
Angel lullabies, no more teary eyes
Who could love him like this?

I will carry you
While your heart beats here
Long beyond the empty cradle
Through the coming years
I will carry you
All your life
And I will praise the One Who’s chosen me
To carry you

 

Be part of The Story!  Donate here…

If you are unable to donate financially, please consider passing along this message to others who can.  Thank you!

http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2078389&pg=personal&fr_id=59186

 

Many of you who are reading this most likely know our Backstory, or at least part of it.  If you don’t and would like to know more details of Nick’s story, you can visit his CaringBridge site here…

https://www.caringbridge.org/visit/nickavery

30 DAYS UNTIL RACE DAY!

(The purpose of this 16-week blog is to shine the light on childhood cancer by sharing our family’s personal experience as I prepare to run my first ever half marathon and raise money to help children with cancer and their families.  Be a part of the story! Donate here: http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2078389&pg=personal&fr_id=59186  then share with your family and friends.)

 

When a friend of mine (who is a runner) found out that I had signed up for the half marathon, he said with much enthusiasm “We were made to run!”  Again, he’s a runner.  And evidently doesn’t know me well at all.

I didn’t get the same response from the people who have known me my entire life…

My best friend of 53 years keeps saying, “It sounds so weird when you talk about race day!”

When I told my siblings that I had signed up for the half marathon, their immediate and very appropriate response was “WHHHAAAAATTTT???!!!” 

I still don’t think that my sister-in-law believed it because a few weeks later at a family gathering she asked, “So, you’re running a half marathon?”  Then she started laughing hysterically.

Yeah…

I’m pretty sure that I was NOT made to run…anywhere…for any reason.

 

RUNNING THE RACE WITH PURPOSE

I love telling the story of Amos Muzyad Yakhoob Kairouz.

Amos was one of ten children born in Detroit, Michigan to parents who were very poor and struggling Lebanese immigrants. After moving the family to Toledo, Ohio, Amos’ father sold hardware – nails, needles, thread, rope – on consignment off the back of a horse-drawn carriage to the farms in Ohio just to make ends meet.

Amos’ daughter says “dad told us that in his neighborhood nobody ever went to a doctor. My grandmother had her 10 babies without a doctor; Dad was delivered by a horse doctor! Children in the neighborhood died from influenza, and one died from an infection by a rodent bite. My father’s baby brother lost an eye in a rubber band accident. I don’t think my dad ever forgot the injustice of all that. He always felt that every child had a birthright to good health care.”

As Amos grew into adulthood and married, he decided to pursue his love of acting. He was not at all successful and in 1937 his wife, pregnant with their first child, told him that he needed to get a job that would pay the bills.

Feeling hopeless and scared, Amos went to church to pray.  In those moments, he made a promise to God. He asked God to help him find his way in life and that if He did, Amos would one day build a shrine. Knowing that he would need $70 to pay the soon coming hospital bill for the birth of his child, Amos took seven of the last 10 dollars out of his pocket and put it into the offering plate.

Shortly after that, Amos got called to do a commercial for a singing toothbrush. The pay was $75. This was his sign. And that commercial was the beginning of the long and successful career of Danny Thomas.

Danny not only went on to become a very popular actor in his time, he also produced such shows such as The Andy Griffith Show and The Dick Van Dyke Show.

Time passed and Danny remembered the promise he had made in church so many years earlier. He decided that he would build a hospital to care for children with hopeless diseases and began to get his friends involved in raising money and spreading the word. He would name this place St. Jude after the saint of hopeless causes. It would be a place that not only cared for the sickest of children but it would also be a place of research and treatment that would focus on finding out why these children were getting sick in the first place.

Danny’s hospital, St. Jude Children’s Research Hospital, opened its doors in 1962 in a time when the overall survival rate for childhood cancer was 20%. Today, 54 years later, that survival rate stands at more than 80% overall because of the work that is done at St. Jude.

 “I believe I know why I was born, why I was put on this earth.  And I think any person who can say that is blessed.” -Danny Thomas

“I was born to build St. Jude.” -Danny Thomas (from 1987 article in Coping with Cancer)

One man, an actor with no medical background but with a passion for sick and dying children, changes the world. Danny was definitely born to build St. Jude.  Proof of the difference that one person can make when they figure out why they were put on this earth.

 

WE WERE BORN FOR THIS

Even though I have some ideas, I can’t say with confidence that I know for sure why I born.

One day while Nick was getting chemotherapy at St. Jude, I sat reading my Bible…Psalm 71 to be exact…

“For You have been my hope, Sovereign Lord, my confidence since my youth. From birth I have relied on You; You brought me forth from my mother’s womb.” (v 5-6)

“Though You have made me see troubles, many and bitter, You will restore my life again; from the depths of the earth You will again bring me up.” (v 20)

But then this…

“I have become a portent to many; but You are my strong refuge.” (v 7)

I could not stop looking at that sentence. I felt that it was speaking directly to me. But why?  And what is a portent? I wrote the sentence down and vowed to look into the meaning.

Later on that day, I found out that a portent is a sign or warning that something of future significance, possibly disastrous, is likely to happen.  So, in other words, I have become a sign (portent) to many that bad, even disasterous, things are likely to happen in life; but God is still and forever my strong refuge.

Little did I know at that time what my family would walk through in the years following.  And while I know for sure that I wasn’t born to run, I’m pretty sure that I was born to be a portent.

The reason why we were born into this particular time in history and in this particular place on the earth is different for each of us, but we are all born to run this race of life with everything we have in us, never giving up, holding out hope that a better day is coming.

Sing like it’s the last song you will ever sing.

Live like it’s the last day you will ever see.

Finish the race well. We were born for this.

 

I love song #3 from my Race Day Playlist, Born for This by Paramore. The chorus will be my anthem on race day. https://www.youtube.com/watch?v=OFxpEFb7TtE

Everybody sing, like it’s the last song you will ever sing

(Tell me, tell me do you feel the pressure now?)

Everybody live, like it’s the last day you will ever see

(Tell me, tell me do you feel the pressure now?)

Everybody sing, like it’s the last song you will ever sing

(Tell me, tell me do you feel the pressure?)

Alright, so you think you’re ready?
OK, then you say this with me, go:
WE WERE BORN FOR THIS!

 

Be part of the story!  Donate here…

If you are unable to donate financially, please consider passing along this message to others who can.  Thank you!

http://fundraising.stjude.org/site/TR/Heroes/Heroes?px=2078389&pg=personal&fr_id=59186

 

Many of you who are reading this most likely know our Backstory, or at least part of it.  If you don’t and would like to know more details of Nick’s story, you can visit his CaringBridge site here…

https://www.caringbridge.org/visit/nickavery