Guest Blog – Beads of Courage mom and Team BOC member Shawnda Sallee
|Harper Grace with her Beads of Courage.|
Somehow, I started a mini Beads of Courage movement within my running group on Facebook. I’m currently training for the 2018 Disney Princess Half Marathon, a run that has been just out of my reach on two separate occasions. But not this year. This year, no matter how I have to do it, I’ll be there … running for my sanity, running for my daughter Harper Grace, running for her “Trisomy Siblings” and for all of their lives and, finally, running for a child whose name and diagnosis I don’t know and probably never will.
The first attempt to run it and my inability to do so was caused by nothing more than the inability to get off of work. However, my second attempt was and is tied to my current attempt. In July 2016, I was in the best running shape of my life and had just signed up for the 2017 Princess Half the week before when I found out I was pregnant with Harper Grace. I didn’t even give that last point a second thought. I was a perfectly healthy and fit 30-year-old and my OB/GYN had no issues with me running it. But nothing is ever that simple in life.
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In October, we received devastating news that Harper Grace had a rare genetic condition called Trisomy 18, Edwards syndrome. Let’s just say statistics are not on a parent’s side when they first receive this diagnosis for their child in utero. It crushes your soul and everything about the person you were. It crushes you to the point of no return; it crushes you into dust, and the person that rises from the ashes will never be the same again. I went from running nearly every single day for almost a decade to refusing to even look at my running shoes. The day we received her diagnosis would be the last time I ran for over a year.
The rest of the pregnancy would be some of the hardest days of my life in terms of regret. I tried to hold onto hope, but we also didn’t want to set ourselves up for heartache so severe that it’s impossible to put into words. We didn’t do a baby shower. We didn’t decorate a nursery. Because, after all, statistics said my daughter had roughly a 90% chance of dying in utero, and if by some miracle she did make it, around a 1-5% chance of seeing her first birthday. So, we walked through the rest of the pregnancy as shells of our former selves. All of these things I regret.
I had my OB/GYN write a letter explaining the severity of my daughter’s condition and how it wasn’t safe for either of us to participate in the Half Marathon, my bucket list half marathon. I then attached it to an email and sent it in to runDisney. I was let out of the race on good faith that I would someday return to run it. But I never wanted to set foot on pavement again.
To everyone’s amazement, Harper Grace fought with all her heart, all through utero and did very well in the grand scheme of things. We knew before her birth that she would have a VSD, which is one of the most common heart defects associated with Trisomy 18. But, otherwise, she had no obvious markers. She held on strong and came into the world via emergency C-section after a failed 40-hour induction, at 11:56 pm weighing 4 lbs., 7 oz and 17 inches long.
She would spend the next 162 days at MUSC Children’s Hospital in Charleston, SC. This is where our Beads of Courage journey begins.
Harper Grace’s primary NICU nurse, Merrissa, a saint of a woman, introduced us to the program on Harper’s second or third day of life. In a very real fog of painkillers and fear, I remember what she said about the actual program and what the beads represented: how they told the child’s story, how each and every single little thing a child could possibly go through had a colorful bead that represented it. I was floored to see how many beads she had from her first couple of days of life alone: needle sticks, ventilator support, echocardiogram, x-rays, the list goes on, and there was a bead for each of them.
Then, there were the beads meant more for the parents: little hearts for parent firsts — first time holding your child, first time changing a diaper, first bath, all firsts that we had to experience on display for the entire unit to see. There were little bumpy beads representing emotionally challenging days and we have a lot of those. I suppose every day is an emotionally challenging day when you’re the parent of a child that many perceive to be incompatible with life. I knew when Merrissa told us about Beads of Courage that I would do everything within my power to keep up with them and to one day have Harper Grace’s picture taken with them.
|The bumpy bead and the small heart represent
the first time Shawnda held Harper Grace
the day after she was born.
We spent the next four months in the NICU and the NICU step-down, doing everything in our power to give Harper Grace her chance at life. We continued to collect beads and I never allowed myself to get more than three days behind on stringing them. It was amazing to see her journey stretch out in a tangible way; to see her strength and determination in physical form. I can pick out, with my eyes closed, her first surgery — the scariest day of our lives up to that point. However, our hospital journey wasn’t over.
Just as things settled out from her first surgery and we started to prepare to FINALLY take our baby girl home, her status shifted and it became painfully obvious something was off. She was in heart failure, and if we were going to fix her heart and give her her chance at life, we had a very small window and little time to act.
Within a week of finding out she was in heart failure, we left the comfort of the NICU team we had grown to love and consider family, for the very intense Pediatric Cardiac Intensive Care Unit. Within three days of transferring there, Harper Grace was on the operating table, on bypass, with her tiny little 4-month-old chest split wide open. She would code three times post repair, two of those times right in front of her dad and me.
I’ll never be able to explain what it’s like watching your child be resuscitated right before your eyes: her tiny little chest being crushed by grown men in order to save her life; the sound of someone, whose face I cannot remember, saying the words “clear” as they shocked her heart back into rhythm. But I can point out the beads that represent each of those things. I can tell you what those beads mean — every single one of them. And, while I may not be able to put into words their importance to us, what matters is that I know and her daddy knows.
I can say without shame that I sobbed uncontrollably at her bedside later that evening as I strung those beads. I would hold them in my hands for hours, rubbing them, thanking God that I had those beads to string rather than the bereavement bead in their place. She was alive and each of those beads showed it. Are they hard to look at sometimes? Yes. But the best part about them is that, after those incredibly hard days, those “emotionally challenging days,” comes another day’s worth of beads, and another, and another. It shows her LIFE — that she is here, completely compatible with life, fighting the good fight.
By the time we were discharged from the hospital, we were enrolled in three different programs through Beads of Courage: NICU, Cardiac, and Chronic Illness, and had over 1,000 beads on her strand.
|The lightning bolt represents when Harper Grace
had to be defibrillated shortly after heart surgery.
When it became obvious that she was going to come home, something inside of me sparked. It was very dim at first, but grew brighter each day. I was missing running. With all the stress that comes along with a medically-complex child and an extended hospital stay, I knew I needed to do something for myself, something I loved.
Prior to her birth, and even in the early months of her life, I thought I would never run again. I hated the idea of leaving her side, even for a second, and I hated the people who pushed me to get out even more. What kind of parent leaves their child in a hospital bed? It seemed so incredibly selfish to me, but when all of her cardiac drama was in full swing, I knew they were right and I knew I had to find something to relieve the stress.
I talked with my husband one night on the way home from the hospital about running the Disney Princess Half Marathon. It would give me the push to get out on the pavement and start training again. And I was shocked that, for the first time in a year, I didn’t loathe the idea of lacing my sneakers back up.
The idea gave me butterflies. So, I registered, and slowly started hitting the road again. It was sporadic at best for the first couple of months, because having a medically-complex child at home is HARD. There are triple or quadruple the amount of doctors’ appointments, therapies and meetings with case managers than the average child has.
There would be entire weeks where I would go without running because I was so exhausted. I needed motivation from fellow runners, and I found it in the form of a private Facebook group specifically for those who would be running one of the races during the Disney Princess Half Marathon weekend.
I sat back for a week or two and tried to get in a training run here and there, until the day I was compelled by others to share my running journey and specifically why I was running this half marathon. I shared with these women (and a few men) the story and journey of my Harper Grace, and the response was overwhelming. They fell in love with her and her will to live. They became one of my sources of motivation. Several of them reached out to me to tell me their experience with Trisomy 18, some of them having lost siblings or their own children to the genetic condition, and our story gave them hope for the future of children like Harper Grace. I found myself looking forward to sharing my progress and training runs with them.
|The husky bead, carried in the Iditarod, was given
to Harper Grace to acknowledge an Act of Courage.
Then, one day, as I was stringing Harper’s first Beads in the Mail order, I stopped to look back at her journey, her story, written in this nearly 30-foot strand of beads, picking out important ones, and two of them stuck out to me. They were beads that were given to us to represent “Acts of Courage” and had been carried in the Carry a Bead program. The first was in the shape of an Alaskan Husky’s head, and had been carried in an Alaskan Iditarod race. It was given to us on the day of Harper’s first surgery. It was amazing to think about the many miles this bead traveled with the musher and sled dog team! The dedication, the strength and the endurance needed to keep going. It was a perfect representation of my daughter.
The second was a bead that had been carried all the way to India to the Taj Mahal. The person who carried it sent a picture of the bead in his hand outstretched with the Taj Mahal in the background. The picture is absolutely breathtaking. With it he wrote a note that reads: “The Taj Mahal is one of the great wonders of the world. It took patience, strength, and perseverance to build. YOU have these things too.”
|This bead, carried all the way to the Taj Mahal,
was given to Harper Grace in the hospital.
This was given to us the day we left the NICU and transitioned to the Cardiac ICU in preparation for Harper’s heart repair. His words were so true, as Harper’s recovery was much longer than most. We had to be patient and give Harper the time she needed to recover before she was ready to go home.
So, as I sat there with her beads in my hand, and her sleeping on her blanket at my feet, it dawned on me, kind of like one of those AH HAA! moments. This half marathon, for me, was a huge step towards taking back a part of myself that I thought I had lost many months ago. It represented strength that I thought I had lost, and I was running in honor of my daughter, whose strength never wavered. Why couldn’t I also run it in honor of another child and family going through their own version of hell?
I knew what these beads meant to my family, and I wanted so badly to give that to someone else. So, I ordered a set of beads to carry during the Half Marathon.
When the beads arrived at my house the next week, I was so excited to share with my running group what the beads meant to us and how excited I was to pay it forward to another family. I figured there would be a good response to the post, as there had been an amazing response to my previous post about Harper’s journey. But I never expected to get the response I did.
I wrote about what Beads of Courage meant to my family, and then introduced the Carry a Bead program to the group with a photo of my Carry a Bead kit. The post blew up! People were commenting AND private messaging me for more info on the program and how they, too, could carry a bead. Before I knew it, I had lost count of how many people were going to be running in one of the three races while carrying a bead. I was head-over-heels excited by the response. All I could think about was how many children and families would be receiving beads. I knew how much we loved ours and I could just see it — a child finishing her last round of chemo, receiving one of the artist-made beads in celebration, going back to her room to string it, while reading the story of the bead’s journey. I could see the mother who was sitting bedside with her 4-month-old son, who had just come out of his third heart surgery, stringing the bead on his behalf.
I knew very quickly this was going to be a movement within the group. So, a few days later, I made a new post for everyone who had ordered Carry a Bead kits to comment, so that I could keep track of everyone. I wanted to try to organize a meet-up during race weekend so that we could take a big group photo. And, yet again, to my surprise, this post blew up as well, only much bigger. The first day, I lost count at 50 individuals on that second post alone who had ordered Carry a Bead kits. To say I was moved to tears is an understatement. I even had to post a video within the comments to get my point across about how grateful I was for each and every single one of them. To them, it was just a neat idea to Carry a Bead to be given to a sick child. But, to the parent of one of those sick children, it means so much more. It means they acknowledge our child’s strength and courage. And they want to honor us as a family. It may be a small act of kindness to them, but to us, it means the world.
To date, there are over 300 comments on my post within the group from people who have signed up to Carry a Bead. Many of those people have ordered multiple kits for their entire family and crew to carry during race day. THIS IS HUGE! This means over 300 children and families are going to receive these beads. Imagine over 300 people standing together in a photo smiling with their beads, and the strength and courage they are simultaneously giving to children who are fighting for their lives.
|Beads ready to be carried!|
As I have continued to train, I have once again found my love of running, and no longer does it take everything within me to hit the pavement. I go now with excitement and drive and, this time, I’ve found a way to honor others while I do it. I will honor my daughter and her Trisomy siblings with my custom-made race costume, covered in names of children with Trisomy 18, but also in honor of a very special child, who will receive the bead I carry. I don’t know their name, age, or diagnosis, but I know that I will think of them every single day for the rest of my life.
I hope the child who receives the bead I carry will be uplifted as they look through the pictures I will send with the bead. I hope they will know that the thought of them pushed me harder in my training and gave me strength on race day.
I hope that the photo of ALL the Disney Princess Half Marathon runners shows children in the Beads of Courage Program that they are not alone in this race; that there will always be someone there to help them through.
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NOTE: The Beads of Courage Carry a Bead Program is a fundraising program that supports the mission of Beads of Courage, Inc.: to provide innovative Arts-in-Medicine programs that improve the quality of life of children coping with serious illness, their families, and the clinicians who care for them.
Each Carry a Bead kit includes 2 matched beads on a pin. Carry both beads during an intentional activity, like running, hiking, biking, or any special occasion that is meaningful to you. Send one bead back to Beads of Courage Headquarters with your signed note to be given to a child in the Beads of Courage Program. Keep the other bead and the Team BOC pewter charm as our thank-you gift for your support for children fighting serious illnesses.
We will send the bead you carry to a child on a tough treatment day to honor an Act of Courage or a treatment milestone. Each bead becomes a permanent part of a child’s Beads of Courage collection. Make all your moments matter more when you Carry a Bead to support a child coping with serious illness.