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 

Letter Nineteen 

 January 16th 2008

Chip, 

You are the best nurse I have ever had. When you came on shift last night things were so intense with Noel. They couldn’t get her breathing settings right, they couldn’t get an IV placed and her labs were all over the place. I was so scared and overwhelmed. The room was full of so many people and so much commotion. I was about in tears from all the emotion and stress, I had been up for 36 hours by the time I met you. You came in the room with so much peace and clam. Before you even said anything to me I knew you were a great nurse but how you interacted with Noel. You spoke straight to her and acknowledge her even though there was so much going on. By the time everyone left the room it looked like a tornado had gone through. There was equipment, and supplies scattered everywhere. Then you came through like a Tasmania devil of organization rather than destruction. You tidied everything up. You made the room feel so warm and inviting. You gave Noel a bath, bundled her up and basically put a bow on her. She looked so snug and content. In-spite of her having a breathing machine covering her face you made her look as comfortable as possible. My mamas heart was so full looking at my baby going through so much and in so much turmoil; and yet she looked so comforted and so well taken care of. It’s a real gift to be able to walk into a room and uplift it by your spirit. I appreciate you so much and the care that you’re not only taking care of Noel but in turn taking care of me. Thank you, 

Tina 

Letter Eighteen

January 14th, 2008

Carol, 

The scariest thing just happened. It was 4 in the afternoon and I feel asleep for like 30 minutes I was in the deepest sleep ever because I don’t think I’ve slept in 3 days. It’s so hard to sleep in a hospital. People are in and out of the room every couple of hours. Not to mention the insistent alarms of Noel’s. She has a pulse ox that measures her oxygen level, and monitors for her heart rate and breathing. They never actually pick up correctly so there always going off. 

Well in this sleep I felt like I was out of my body or something, it’s probably from complete exhaustion. But then what brought me back was the alarm going off nonstop. It took me a second to actually come to and when I did it said Noel’s Oxygen was 62. I jumped up and ran over to her half thinking that the monitor fell off. When I got to her she was blue. The monitor was working, but Noel’s lungs weren’t. I yelled out the door to have a nurse come quick. 

That’s when the whirlwind began and didn’t end until 3 AM. In minutes there were at least 15 people in Noel’s small little Hospital room. Nurses were trying to place IV’s and trying to draw labs. Respiratory therapists were in the room discussing what would be best for her. They fit her for a bi-pap, a mask that goes over her nose in order to push air into her lungs. Shortly a ventilator showed up in her room. Pulmonologist came in to consult. Seriously I saw more people in about 15 minutes than I had all day. I was so worried and scared as more people showed up and more equipment showed up.  

Then the decision was made to transfer Noel to the Pediatric Intensive Care unit at about 9:00PM. She had been on the bi-pap for several hours but she was not improving, she was actually getting worse. All of blood work was showing that she was building up more CO2 and working harder to breath. 

I was so panicked as I quickly packed all my stuff preparing to head down to ICU. Noel has never been in ICU so I had no idea what to expect. When we got downstairs to the ICU it was like we were in another hospital. The rooms were twice as big and full of windows. Clear glass sliding doors replaced the regular privacy doors on the main floor. Every patient in the ICU has only one nurse and they sit right outside of their room in order to keep a close monitor on the patient. I felt like I entered a whole new world. 

Everything felt more serious and intense down here. I could tell from my surrounding that Noel must not being doing good to have been transferred down here. I feel so unsure and uncertain right now. This is all new to me. And poor Noel, she is working so hard to breath. Her poor little body is so fatigued and so worn out. I’m sitting on the little bench in her room as I write this. I still can’t sleep and now it’s because I’m full on adrenal and uncertainty. I don’t know what’s coming next. 

Tina 

Letter Seventeen

January 10th, 2008

Heather, 

Hey Friend how are you? I feel like I’m always writing people with bad news and I hate that. I guess this is the chapter of my life that is the hardest with the most trials. I sure hope the next chapter is full of happy experiences and ponies! lol. But I use writing as my therapy as I navigate this crazy ride Noel and I are on.

The last few months have been uneventful, I suppose. She has been eating fairly well. She doesn’t throw up anymore so that’s good news. Thanksgiving was spent with her dads family and Christmas with mine. Nothing big has happened with Noel’s health until now. 

We came to my parents house last weekend to participate in an MDA Muscle walk. I was happy to meet some other families who have children with conditions similar to Noel’s. Sadly we never made it to the walk that was suppose to take place on Saturday morning. Instead I had to bring Noel down to Children’s Hospital. 

I knew she needed some oxygen at least. She started looking a little dusky and was working hard to breath. Then she got really lethargic and could barely stay awake. These were all signs that she needed oxygen so I knew I had to take her in. When I started packing an overnight bag my mom asked me what I was doing, “Doesn’t she only need oxygen Tina?” “Mom,” I said, “ you can never be to prepared for a trip to the hospital with a kiddo like Noel.”

It’s a good thing I packed that bag. We waited in a room in the Emergency Room for 13 hours! When a room finally opened up it was 3 in the morning.  They have Noel on 2 liters of oxygen which is the most she’s ever been on. They also started monitoring her carbon dioxide levels and they said they were dangerously high. So the plan is to keep her on oxygen while we wait for the cultures to come back to see if she’s sick. So for now I’m sitting in a little Blue Chair in room 604 of the hospital while we wait. 

I hope you’re doing alright, hopefully the next letter I send you will be about happy times, after Noel’s back home. 

Love you Friend, 

Tina 

Letter Sixteen

October, 15, 2017

Veronica, 

Finally there is hope! Someone finally heard me out and realized that Noel never got a Nissan when they first placed her g-tube. I went to see the specialist at Children’s Hospital and they finally listened to me. A Nissian is where they change the the function of the valve in the esophagus. It takes it from a two way valve- where food can go down and come back up; into a one way valve so that only food can go down and nothing can come back up. I don’t know why this procedure wasn’t done originally because in most cases when they place a g-tube they also do this procedure. The good news is they didn’t do it for Noel, so this is probably why she’s been having all her feeding issues. So the good news is she is scheduled to have this procedure next week right here at our local hospital; we don’t have to travel!

Update: 

So the procedure is done and Noel is resting. But, unfortunately we are not at our local hospital, we are at Children’s Hospital again. I am so mad and frustrated. I had talked with the surgeon, who was suppose to do Noel’s proceed back home, at length about her muscle disease and making sure that he and his staff would be able to adequately care for Noel. He kept reassuring me, almost to the point where he was getting annoyed, that everything would be fine. I was just extra concerned because every procedure she’s had at children’s they were extra cautious with Noel. So the morning of the surgery we are in the pre-op room and the anesthesiologist comes in and says, “I don’t feel comfortable putting Noel under anesthesia. I just found out about her this morning.” He said he had never worked on someone with the diagnosis of Muscular Dystrophy and there could be serve complications putting her under. He said, “if she was my daughter I wouldn’t want me to preform this surgery.”

I was so mad. This is exactly what I was trying to avoid and what I was trying to communicate to the surgeon about; but he wouldn’t listen to me. After the anesthesiologist left the surgeon came back in the room with his “tail between his legs.” He knew that he had been disrespectful to me and that now he was in the wrong. I couldn’t even make eye contact with him. Not only was I so mad that he didn’t take the time to really listen to me, but now Noel wasn’t getting the procedure that she needed so bad. It is so hard to try to advocate for your child to a Doctor who thinks they know everything and that your some uniformed parent. I get so discouraged dealing with this. I didn’t even sleep the night before because having your little 11 month old go into surgery is terrifying and it was all for nothing. 

So thankfully children’s hospital was abled to fit her in yesterday! I’m so thankful that she finally has this procedure done. It means that she’ll finally stop throwing up all of her food and she’ll finally be able to eat and gain weight! It was also nice that Noel was one of the first patients to be seen at the new Children’s Hospital. Its a brand new state of the art building, so if we have to be in the hospital this is a great one to be at. We’re hopefully going to get discharged later today or tomorrow which means we may be able to make it to your bbq this weekend after all!  I could really use some time relaxing and hanging out with friends after the week I’ve had!

Love you friend, 

Tina

Letter Fifteen

August 18th, 2007 

Cassandra,

I’m so frustrated and so exhausted. Noel is 8 months old and her feeding issues have only been getting worse. It’s been such an emotionally and physically demanding job. I have to pump every three hours, in order to give Noel breast milk into her tube feeding. After I do that I get Noel’s tube feeding ready which includes fortifying my breast milk with extra formula so that she’s getting more calories than just breast milk alone.

By the time I get her tube feeding hooked up and going it’s already been an hour long process. The food takes about an hour to get done. Then, not even 15 minutes later Noel throws up half, if not all of the food I just gave her! After cleaning it up I basically start the whole process over. It’s exhausting and all consuming.  I’ve tried everything I could think and everything the doctors have told me to help her not throw up. But nothing works!

The doctors have told me I lay her down after she eats, that doesn’t work. Then they say sit her up at a 45 degree angle, that doesn’t work. Last time they told me to trying feeding her when she’s sitting up, even that didn’t work. No matter what I do she ends up throwing up everywhere. 

It’s so challenging and frustrating. I can’t even take her to the store let alone to someone’s house because I don’t want to have to clean up the mess in public. I feel stuck and trapped in my house. No matter what I tell the doctors they don’t have any other options for me. I am so discouraged right now. And I just don’t know what else to do. We are suppose to see a specialist next week so maybe they will have the answers?? I sure hope so because this is so difficult. Thanks for letting me vent. 

Tina