Steps for Noel

My feet were burning, the sweat started to drip into my eyes and my throat was as dry as a desert; but I didn’t even care. No pain or discomfort that I was in could compare with the overwhelming feeling of triumph I felt as we entered into the stadium of hundreds of cheering fans. I don’t even know how I picked up the pace after I had just ran 6 miles straight, not something I do often or well ever. I can’t even begin to explain the amount of adrenaline you get as you push your disbailed daughter in an adaptive stroller through a race. As you pass people all you hear are encouraging words-

 “You’ve got it Mama!” “Great job girls, you're both so strong!” “Keep it up!”

 It’s as though with every encouraging word my pace got faster. What began on that race is something so close to my heart, a little thing called “Steps for Noel.”

Earlier that summer my heart broke when Noel told me that her goal in life was to walk again. How do you look a determined eleven year old in the eyes and crush her goal of walking? And I mean walking? That’s something we all take for granted. But unfortunately Noel, diagnosed with Muscular Dystrophy, lost her ability to walk at 4 years old. Now at eleven I knew from the degeneration of her disease walking was no longer possible. 

I promised to her in that moment we could figure out what we could do. That’s when I had the idea of running.  We started running races together as a family. We signed up for our first 5K in August 2018. We pushed Noel and our two other young kiddos in strollers as our older kiddos ran alongside us. We took turns pushing each stroller. From that first race we were hooked. 

I decided to sign our family up for a Labor Day 10K. Ready or not we were going to run our longest race yet. This is one of those awesome community races where there is something new on every corner. You can hear the saxophone, and trumpet as you run up on a perfect jazz ensemble on the corner. Or see a whole family dressed up in their family halloween costumes, having a bright yellow minion give you knuckles when you're running a race is quite the experience. There was even a group of college kids who set up a shot stand. Run-through-Jello-shots apparently is a thing! Don’t worry we didn’t drink and run! 

We were on about mile 4 when the mid morning chill started to fade into the late September heat. That's when my eleven year old son looked up and me and said, “Mom I just can’t do it any more, my feet hurt so bad.” I looked down at him and said, “Buddy,  we’re not running for ourselves, we’re running for Noel; we’re taking the steps she’s never taken.” 

With that realization vocalized tears started pouring down my face. Yes that’s what we were doing. We were taking Steps for Noel. That’s why I felt so much pride and triumph as we pushed her into the stadium, we had just taken so many Steps for Noel. 

After that race I began to wonder, just how many steps does the average eleven year old take in their life. We calculated how many steps Noel would have taken at that point in her life I came up with 43 Million Steps. Dang. All of us together who had just run that 10K only had about 40 thousand steps. This was a huge goal!  That’s when I realized we couldn’t do it alone, we needed help. So we invited family and friends to join us to take “Steps for Noel.” 

We reached out through Facebook and let everyone know what our goal was. Before long we had people from all over taking steps for Noel. Friends would send us pictures at the tops of glorious mountains peaks, sandy sun drenched beaches and even a desolate rainy bridge in Prague. It was absolutely amazing to have so many people join us and pledge to take deliberate steps for a girl who was no longer able to step on her own. 

Every week we would have a celebration as we did a video revealing the total steps accumulated for that week. Each week we got to dance and celebrate hundreds of thousands of steps from all over the world! It was all very exciting. Noel always loved the dance party reveals!

However, I was a little worried that at the rate we were going with accuamplacting steps it would take us years to achieve the goal. LIttle did I know that the story of Noel was getting around to so many. One night in the mail we received a rustic plaque made of an oak tree. Etched on the front in red letters was the word “Believe” and with over 40 signatures. On the back it read: “Noel our company took 127,105,047 steps for you!” 

One hundred twenty seven million one hundred five thousand forty seven steps…

What?

 The word of Noel and what we were doing spread to this company and they decided to do a step challenge in her honor. We surpassed our goal by 72 million steps! I cried when I told Noel and she just beamed! It’s like she knew that people would do this for her. This whole story and experience can be summed up by an unknown quote:

“I run because I can and when I get tired, I remember those who can’t run, what they would give to have this simple gift I take for granted, and I run harder for them.” 

Foreboding Joy, Dress Rehearsing Tragedy, Waiting for the other Shoe to Drop…

No matter how much I wanted to fully enjoy our time on the boat, the hot sun, the water splashing in our faces; I couldn’t fully. Not even the blasting county music, the coconut smelling sun tan lotion and the ice cold beverage in my had could put all my fears at ease. I wanted to be fully engaged and having fun with my family but I couldn’t get the images out of my mind. It was like I was somehow dress rehearsing a tragedy happening. I kept imagining my youngest son slipping on the dock and falling in the water. I had to tell the kids a 1,000 times to sit down in the boat because I thought they might bump their heads on something and get a broken nose. I constantly kept my eyes on the lake in case there was a boat my husband didn’t see that was barreling towards us. These constant fears kept me from relaxing… it’s like I was constantly thinking about the worse case scenario. 

Why? Why was I always waiting for the other shoe to fall? I always prided my self on being a fun-loving, easy-going, carefree person so how come I couldn’t just enjoy the time on the boat with my family? This feeling of expecting the worst actually trickled into every part of my life. I’ve only recently begun to realize why. I actually didn’t know that what I was feeling could even be put into words. I just thought I was becoming more controlling. It wasn’t until I read the words “Forboding Joy” in Brene Browns book Daring Greatly that I finally had words to describe what I was feeling. I had to do some soul searching to find out when I began to live in a state too afraid to truly feel joy. 

When I started to think I realized I had felt this way every day for the last 5 years;  I had been waiting for the other shoe to drop. And not just in the small areas of life like my two younger kiddos banging their heads together on the boat. In the really big areas like losing my middle daughter Noel, to the very serious medical condition of muscular dystrophy. I guess I have been waiting for the other shoe to drop ever since Macie and Beau, my two youngest, were born. They were born after Noel’s worst hospitalization ever. 

Noel had been to the hospital countless times in her then 7 years of life. When you know the cleaning ladies at the hospital its safe to say that you’ve met regular status. Her last admission was like non before. Most other admissions started with dark days of unanswered questions, inconclusive tests and hours and hours of waiting. But then there would be a small improvement, a slight glimmer of hope. The doctors would preform a new procedure, give her a different medication or a new medical device. She would start making progress and things would take a turn for the better. The last admission was all together different. 

It started off with Noel having a dreaded blood infection; a staph infection in her blood to be specific. Getting a blood infection was always a present risk we faced with her because she had been feed intravenously for months. To make a long story short Noel had always had extensive feeding issues which is what most commonly landed us in the hospital. 

She had a central line, which like an IV with direct access to her heart. Over the past few years I had become an expert at drawing up vials of vitamins and medicine to add to her bag of TPN; a carful concoction of glucose and fat used to feed a person through their veins. We ended up in the hospital all the time. Any time Noel would spike a fever above 99 degrees Fahrenheit we would trek back to the hospital; I would find myself back to my little blue recliner and she would be placed on IV antibiotics for 48 hours. Every time before this that was the course of treatment because her labs never grew anything in her blood. 

But this time was different from the beginning. When the blood culture came back with something it surprised and worried me. She had never actually grown something in her blood so I didn’t know what to expect. Over the next serval days and weeks she just kept getting worse and worse. Her fevers spiked to over 104 degrees Fahrenheit. When a fever is that dangerously high it can be life threatening. She would lay on a cooling pad around the clock trying to get her body temperature down. She was also on round the clock doses of Tylenol and ibuprofen that barely even took the edge off. 

The infection in her blood became so aggressive it put her into a state of septic shock. Septic shock is a life-threatening, the body stops being able to fight the infection and starts to shut down. Her poor little body was so sick and so tired. Her body then went into a state called DIC and it basically means she was so sick that her blood couldn’t even coagulate anymore. There was no glimmer of hope and she was not getting better. 

Things really took a turn for the worst when a nurse brought in a DNR for me to sign. A DNR, if you’re not familiar is a Do Not Resuscitate order. It is given to family members to sign when the thought is that the loved one will not survive. I held that piece of paper in disbelief. This wasn’t really happening; was it? Was I really being forced to make this decision? Tears started to trickle down my face and I began to shake with emotion. 

No this can’t be it. I thought I was going to have leave that hospital without Noel. I thought I was going to have to face one of my deepest fears, losing my daughter. This was something I painfully had thought about as I watched others families battle in the hospital. My question was always “how do you leave the hospital without your child?” When, when do you ever pick yourself up and walk away. How, how can you muster the strength to put one foot in front of the other and walk down the hall, through the lobby and to your car without your child? The mere thought of leaving the hospital without Noel terrified me. I didn’t know how I would make it if I lost her. 

My deepest fear wasn’t realized that admission. After a few more weeks, serval procedures and a blood transfusion later, Noel was on the road to recovery. When I finally left that that admission with Noel, I never wanted to look back. I was almost in disbelief that I got to leave with her. 

But that’s when it began. I feel like I left running and haven’t stopped since. Only do I know why. I know the feeling of being meet with my deepest fear. So from that point on I realized I couldn’t fully feel joy because I know what the opposite looked like, felt like and sounded like. There has always been this sense of looking over my shoulder or waiting for that other shoe to drop. Knowing at any moment I could find myself right back there at her bedside and holding that piece of paper. And somehow in some self protection attempt I started not letting myself experience joy for the fear of realizing my deepest fear. If I didn’t let the good moments get to good, then if I ended up back in the hospital it wouldn’t be that bad. 

I’ve come to realize this feeling of foreboding joy is something anyone can feel. But I wonder if those of us who have come face to face with real tragedy and real worst case scenario have an even harder time of overcoming the fording joy? I wonder if it’s even harder to be present and truly experience joy. If this is you and you relate to these traumas and emotions I have hope for you. We can start to experience true joy again. The first thing we must do is to notice it. If we don’t know it’s there we cant work through it. We then need to take the time and find out where it came from. Get curious and really pursue where these emotions came from. 

Next and probably one of the hardest is we have to come face to face with that fear and maybe even grieve it. Grief is a process and not a one stop fix. The next  thing is to battle with gratitude. Fear and gratefulness really can’t coexist. When the feeling of dress rehearsing tragedy starts to bubble up, let gratefulness bubble up even more. Start naming things you are grateful for. Feel your feet in your shoes, breath in and be truly thankful for the moment you are in without comparing it to another moment. It’s going to be a process so give yourself grace, you didn’t get her overnight and you won’t overcome it overnight. But slowly you will be able to truly experience joy once more.  

TinaB