February 13, 2022
Natalie's First Year of Recovery... A Mother's Perspective
On the evening of February 21, 2021, my husband, Jim, and I received the phone call no parent wants to hear… “I hit a tree and I can’t move my legs. I’m so scared. It hurts to breath. Am I going to be paralyzed?” Our 17-year-old daughter, Natalie, frantically said this over and over again on the phone. Jim quickly drove off to the local sled riding hill as he tried to calm Natalie over the phone. One of my other children called me on speaker phone while I stayed home: all I could do was cry and pace the floor as I listened to Natalie repeat over and over again those same few cries of fear. There is nothing worse than hearing what’s happening but being incapable to do anything. I couldn’t hold her hand and tell her it was okay but I was grateful for one of my sons at the scene of the accident who was able to do that for us. The ambulance rushed in and transported her on the same sled that took Natalie for her final ride down the hill.
Due to COVID restrictions, Jim wasn’t allowed on the ambulance. He followed closely behind to the hospital. By this time, I had sent texts to our family and church friends, asking everyone to pray. Once at the hospital, a cat scan confirmed our worst fear: Natalie had sustained catastrophic damage to her spinal cord and broke her back. The attending ER doctor told Jim that she would likely never walk again. Before her emergency surgery, I was permitted to come to the hospital to see Natalie. As I rushed to the hospital, I wondered how I would be able to face my baby girl when I could hardly keep myself together? My heart beat through my chest and I felt I could barely keep an anxiety attack at bay. But I had to be strong. I kissed Natalie and told her how sorry I was that this happened and assured her that we had so many people praying. I paced the waiting room all night as we waited for Natalie’s doctors to perform and complete her surgery.
We later found out that Natalie had additionally suffered six broken ribs and a partially collapsed right lung. I couldn’t help but think: “All of this from sled riding?” How quickly life can change! Over the next few days, we watched as Natalie gradually improved and, although she was paralyzed from the chest down, we hoped for some feeling to return in her lower extremities. We touched Natalie’s feet and legs, hoping that she would feel something and that this incomprehensible reality wouldn’t be her future.
Our concerns quickly shifted three days later when Natalie’s health took an alarming turn for the worse and she suddenly was unable to breathe. Doctors and nurses flooded her room, quickly intubated her and realized that this wasn’t enough to stabilize her breathing. They ended up bagging her—manually pumping air into her lungs—for four hours to ensure she received the oxygen she needed. However, this life-saving act caused her left lung to also partially collapse. During this time, the doctor came out to the waiting room to let us know that Natalie may not make it. He explained that they had no idea what happened but were 95% sure she had a blood clot.
The doctor permitted us to see Natalie for a few moments: unsure if this was the last time we would see her, it felt like an invitation to say goodbye. Some 20 doctors and nurses watched as we came close. No one could prepare us to see Natalie as she laid in the bed, unconscious. It seemed her head was about half the size bigger than it was the night before, she had tubes coming out of her mouth to help her breath, in her nose, and even more wires and tubes covering her chest and arms. The monitor reading threatened that she didn’t have long to live. My heart ached and my tears began to well-up as I looked at my baby girl. She was unaware of our presence: We whispered our love to Natalie and pleaded with her to fight for her life. I’ve suffered much loss in my life, but nothing was as heart wrenching as this.
Natalie wasn’t stable enough for a cat scan so they went straight to radiology in search of a blood clot. Hours passed as we prayed fervently with years of memories with Natalie flashing through our minds. How could I lose my daughter? I felt like we were in a nightmare that wouldn’t end. Her youth leader and a few of our brothers and friends waited with us. The distraction was nice and I felt God was carrying us in the palm of His hand: this was a feeling we would experience again and again over the next few weeks.
Later that day, Natalie became more stable but definitely had not come out of the woods. It would be a long time before we could breathe easy, knowing that she would make it. The doctors never found the blood clot and all other possible tests and diagnosis turned up negative. A senior physician walked in the next day, hands on his hips, as he shook his head in confusion and said, “I have no idea what happened. I guess we’ll never know”. When Jim and I heard this, it confirmed to us that God had heard our prayers and healed her from whatever had happened that day.
Breathing was a continual challenge for Natalie. By this point, Natalie had been extubated and required only a nasal cannula. I never saw a chest sink so low just for shallow breaths: although Natalie had chest tubes for both lungs to help them work properly, the broken ribs and injured lungs made breathing a challenge. It was difficult for her to cough to clear her lungs, but her weak coughs weren’t productive.
About two weeks after the accident, we learned Natalie needed surgery again. Natalie’s right lung wasn’t draining properly because her body created a wall in her chest cavity which made breathing very difficult. Natalie’s white cell counts were up as well, which was an indicator of an infection. She spent about 10 days with constant fevers that could hardly be managed by medication. Natalie was unable to sleep during this time and could only take short 15-30 minute naps. It’s not easy sleeping in the ICU but even more so when you’re afraid to fall asleep because you’re concerned, you’ll wake up unable to breathe again. Watching Natalie suffer was very painful and I pray I never have to witness it again with anyone I love.
The night before surgery, Natalie shared, with tears in her eyes, that she hoped she wouldn’t wake up from the surgery. She said she’d been so positive only to be let down time and time again. My momma’s heart broke once again for her: She had been so strong and positive; I was so proud of her. She never complained once, she shared her concerns and feelings, she let us know what she needed. But what do you say when your daughter tells you she hopes she doesn’t make it? What do you say when you stand over her bed for weeks, watching her suffer? What do you say when she says how lonely she feels because no one understands what this feels like? Her entire future was one big unknown: Natalie would likely never walk again, never have control of her bowels and bladder. What does that mean to a 17-year-old who, just weeks before enjoyed the freedom of driving, attending a career center and working a job? Natalie had involuntarily returned to an infantile stage; in need of so much care and assistance. We were grateful that Natalie could use her hands and arms and her brain function was completely normal but it wasn’t enough. And still the nagging question persisted… “All of this from sled riding?”
The next few weeks, Natalie suffered a lot which was hard to watch. We cried with her, and watching her rising anxiety at times was almost more than I could bear. Jim and I spent morning to evening at Natalie’s bedside, trying our best to answer her questions and provide comfort in any way we could, then would return home once Grandma showed up so we could be with our other kids and sleep. There were times we felt at peace and full of faith, and there were times that we felt such despair, some of which depended upon the emotional and physical state Natalie was in as well as the amount of sleep we got the night before. The nights were hard: waking up and suddenly realizing that it wasn’t a nightmare was hard. Coming to this realization daily was like reliving the grief over and over again. But through it all, we constantly felt like we were in the palm of God’s hands. He continually reminded me that He was in control, that He loved Natalie more than we ever could, and that we only need focus on one day at a time, no more.
Moving Natalie down the street to the rehab center brought new challenges: we no longer had the familiarity of the staff that lovingly cared for Natalie, a place that we really felt cared for. We began to see what Natalie could (and couldn’t) do. Natalie now had to rely 100% on her arms, shoulders and upper chest and back muscles. She didn’t have core muscles and her legs were nothing more than excess weight. Natalie learned to lift and move her legs, to balance her body, sitting up without her core muscles. Therapy was hard and improvements slow, but she pushed through three hours of therapy every day to gain her freedom back. It was hard watching Natalie have to fight to lift her legs and fall over herself as she learned to keep her balance with no core muscle. I wanted to cry seeing her have her diapers changed and learning at such a young age how to perform self-catheterization to drain her bladder. My heart broke for her, for all she lost, for all we lost.
We soon discovered that insurance wouldn’t cover the amount Natalie would need in the months and years ahead: we had never considered the unique needs of a paraplegic. With her return home approaching, we had only three weeks to purchase a vehicle Natalie could transfer into, a ramp to get into our home, an adjustable bed, and complete a major bedroom and bathroom renovation. This didn’t even include all the equipment Natalie needed, some of which wouldn’t be paid for by insurance. More than the financial cost, Natalie, Jim and I felt a loss regarding her freedoms and our newfound responsibilities which would keep us tied closely together for her care: Natalie no longer had privacy to go to the bathroom, shower or change her clothes.
The first two months at home were hard on Natalie as she continued to realize how much her life changed and how little she could do for herself. These months were very challenging to me as I had to keep a bladder and bowel schedule, a medication schedule, help with showering, changing clothes and bedding. UTI’s tend to be a huge issue with people with spinal cord injuries and bowels which become very unpredictable. I changed the sheets almost daily and washed clothes more than ever. It was frustrating trying to understand what was going on as her body was trying to adapt as well. Spinal cord injuries are no joke! Everything from a neurogenic bladder and bowel, lack of being able to control body temperatures, potential for an Autonomic Dysreflexia response which could cause a stroke, concern for bones weakening over time, and the list goes on.
I fell asleep crying more nights than not in the early months. I woke up worrying about her through the night, wondering how she was really handling everything and pondering her future with fear. My concern for her mental and emotional needs were (and still are) just as important as her physical needs. I tried my best to be strong for her but found myself leaving her room to cry in mine because at times it was just too much to handle. I think in ways I have grieved more than her. Teenagers look at the present and not as much to the future. I think about Natalie’s self-esteem, the challenges of her regaining independence while living on her own, not being able to walk down the aisle on her wedding day, the ability to care for her children without assistance and what this injury will do to her body years from now. And then I remember my own advice to her: just take it one day at a time.
Day after day, I grew more tired with feelings that this was all just too hard, but I couldn’t give up. My husband went back to work and I bore the brunt of responsibility for Natalie. There were constant therapy sessions, doctor’s appointments and phone calls to advocate for Natalie’s needs. I worried (and still do) if I pushed Natalie too much, if I should research more and missed something beneficial. I searched the internet for stories of hope, of therapies that would work, of anything that could help Natalie. As we regained some control of her bathroom issues and as Natalie became more confident in her own care and independence, life began to get easier for all of us.
We have busy days filled with water and land therapy, a standing frame to keep her bones strong, a bike which uses electrodes to move her muscles and stretching, balance and weight exercises. Natalie doesn’t do these things with excitement but she knows they are best for her and does them anyway. She knows we have to do all we can in her first year, which is the most likely time to see improvement. We cry less, worry less and have found a new rhythm to life; not a life we’d ever wish upon our worst enemy but it’s our life and it is what it is. I continue to pray that God would heal Natalie and cause her brain to communicate with her nerves but I also prepare myself and Natalie that this may be life as we know it. I have been so proud of the brave, strong, funny young lady that she is. I couldn’t love her more!
Some days are more challenging than others. Our family had a season pass to the local amusement park. I didn’t want it to go to waste and figured Natalie and I could at least enjoy being in a different environment, watch some shows and go on a few rides that wouldn’t risk shifting the screws and bolts in her upper back. Unfortunately, the day didn’t go as planned; the shows were all closed for the rest of the summer, Natalie didn’t want any attention drawn to her by being lifted on the few rides she was permitted to go on, and we found out that due to her paralysis—and despite a doctor’s approval; the majority of rides would not allow a paralyzed person to ride. This put Natalie in a deep sadness: only a year ago, Natalie ran from rollercoaster to rollercoaster and couldn’t get enough! Seeing her learn that she will never ride again (without a miracle) was yet another devastating loss. It was a hard day for me as well. As I was in the bathroom assisting her, I thought to myself as I had many times, “Is this really our life?” I did everything in my power to hold back the tears. As best as I tried, I think she still saw my red eyes as a few tears ran down my cheeks. She stayed strong and quiet, yet terribly dismayed. I walked her around the park in her wheelchair observing all of the teen girls enjoying the day with friends while I pushed my 17-year-old daughter in a wheelchair. Days like these were when she really used to appreciate her independence. My heart broke for her. My heart selfishly broke for me, all the dreams I had for her, and all of the freedoms we both once appreciated. Our family’s lives are forever changed because of that one evening on the hill.
By far, the first couple months home were the hardest. One of my most challenging days was a phone meeting with school representatives with the task to understand Natalie’s needs and handicaps and create an ETR and IEP. There was at least a dozen people involved in this meeting. To be completely honest, I should have been at the school for this meeting but they permitted me to stay home. During this season, I cried easily and didn’t want to cry like a baby in front of everyone. And the meeting was actually so much harder than I ever imagined it would be. The teachers, counselors, administrators, social worker, school nurse, school PT and OT were gracious and caring through it all. But as I sat over the phone and listened to the physical therapist share her observations with what Natalie can no longer do and what was challenging for her and the accommodations that were needed, I just cried. Thank God for technology that allows the phone to be muted. With every bit of strength I could muster; I would unmute and answer their questions. I doubt I fooled anyone and I could feel the sadness on their part as well. Natalie is well loved and very cared for at the Medina County Career Center. The school was (and continues to be) one of our greatest supports.
Natalie and I went to Shriners Hospital in Chicago for two weeks for in-patient therapy in July. We planned the visit so my friend and daughter could join us there for their therapy as well. Krissy and I became friends soon after Natalie’s injury and her daughter’s accident (and paralysis) was about 8 months ahead of us. Krissy was my mentor and person to text at all hours with questions and concerns. She was a godsend. I think the best therapy we experienced was Krissy and I talking and crying (well I cried) over coffee most of our days and Natalie and Asjah hanging out together like teenage girls do but with an understanding of what each other was going through. We were able to solve some medical challenges Natalie was having and she became stronger and more confident at Shriners Hospital and this definitely made life easier once home.
Natalie spent many hours of the summer and throughout the fall working extra hours to catch up on her cosmetology and academic education on top of a couple hours per day with therapy. She pushed through it in the midst of dealing with the loss and trauma. We worked hard at getting things she needed for her therapy at home and a motorized standing wheelchair so she could continue with her cosmetology education. I couldn’t be more proud of Natalie’s endurance, positive attitude and courage through this challenging year. As the months went by, Natalie was able to care more and more for herself. She fully takes care of all her bathroom/showering/dressing needs. Natalie has even begun relearning how to drive, this time with hand controls for the gas and brake. Unless you’ve lived with a paralyzed person, it’s hard to imagine how difficult the littlest activities can be. I know she’s frustrated at times and I’m sure many tears have been shed behind closed doors but she wipes the tears away and she keeps pushing forward. Here we are, just about at the one year mark. I think of how far she has come and I am amazed at her perseverance. I am so blessed to be her mother and to be on this journey of healing with her. We are both stronger today than we were pre-accident. This kind of thing changes a person forever.
My tendency is to want to hold back and protect my kids from all potential danger but I can’t do that. I have adult sons who clean gutters and install gutter guards on steep houses, boys that like to cliff dive, jump on trampolines and yes, still ride down that same hill on a sled. I know we can’t stop living. Natalie participated in an innocent activity that is usually harmless but on February 21st; everything changed. I do believe the park shirked responsibility and should have closed the hill the day before, when a 14-year-old girl on that same hill suffered a traumatic injury when a branch went through her eye, which she eventually died from. Had that hill been closed that day until the temperatures warmed and the ice melted and the park system had time to determine how the hill could be made safer, Natalie would still be running from rollercoaster to rollercoaster and jumping on a trampoline and being a host at her restaurant job. But that’s not what happened.
I don’t blame God. I know He felt our pain in the midst of it all. I’ll continue to pray for a miracle, but as we wait and if it doesn’t come in the way we hope, I’ll ask God to let us be the miracle: Let our actions and words be the miracle that God can use in this hurting world. Let us bring hope and strength to others. Life was super hard in the early months and can still be challenging at times now but life is still a blessing: We could have lost Natalie but we didn’t. And as we come closer to the one year anniversary, I feel the sorrow just a little deeper than recent months. It hurts to think how perfect those days and weeks were before the accident. This month leading to the anniversary, I think a little more about our losses and Natalie’s challenges. It’s still fairly new but it can only get better from here. We’ll be okay, Natalie will be okay. God is with us, we’re truly at peace. We are stronger than ever before and I am proud of that. I couldn’t be more proud of Natalie for the way she’s handled the painful journey she’s been on and the attitude she has chosen to take. We have hard days and joyful days, but through it all, God is with us and he ultimately brings us all of the hope, peace and joy!
