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.