My Living Miracle

“We have to operate. One of your vertebrae is severing your spinal cord in half; and if you don’t have surgery, you will continue going paralyzed, or die.”

My parents hearts sank as they listened to an answer the were not prepared for. An answer which explained why my mother was losing sensation in her body. An answer that would ultimately cause more fear and questions, and would take us all on a journey that we didn’t yet know existed.

“Is this surgery safe? Will I stop going paralyzed? Will I live? How long is recovery? Will I still be able to work? What will happen to our daughter if I die? Will this happen to our daughter, too?”

“Honestly, we don’t know…”

Question after question flooded my parents minds as the doctors tried very calmly to answer. For two years, mom had endured multiple tests to determine why she was losing feeling in her body, and why everyday tasks were becoming increasingly difficult for her to complete. A few months before this conversation with the doctors, mom and I had both been diagnosed with a rare form of Muscular Dystrophy which caused numbness and weakness in our arms and legs, and was causing our fingers to curl in a way that we had to hold them straight in order to be extended; and would later plague the lives of my own children. It confused our care team because the EMG's, biopsies, MRI's, and a multitude of other tests came back normal, but clearly something was wrong. They finally diagnosed us with Charcot Marie Tooth Disease II because it was the closest to the symptoms we were experiencing. My mom had also previously been diagnosed with cervical arthritis in her spine and another type of arthritis in every joint, as well as a degenerative disc and bone disease, most likely as a result of a fall she experienced off of a 25ft. high obstacle course wall in the ARMY before I was born. As my parents drove home, they agonized over how, and what to tell me, of this news. Being nine years old, they wanted to tell me the truth, but not scare me.

“Nicole, I have to have surgery. The doctors have to cut into my back and fix the bones in it. I will have to be in the hospital, though we don’t know for how long, and we don’t know exactly what to expect or how long it will take to heal.” As my mother told me this news, she had tears streaming down her face.

“You and I will have to help mommy through this. Family is the most important thing, and we have to stick together.”, my father said solemnly while holding mom’s hand in one of his, and mine in the other.

“Of course I will help.” I told them, not knowing what was to come.

Two months later, in March of 1991, mom was packing to go to the hospital. My dad had told his job that he needed the day off because my mom was having surgery, and they told him he’d be fired if he wasn’t there. So, dad quit his job and was helping mom get ready for the hospital. Mom worked as a hotel housekeeper until the day before her surgery, but was not going to be able to go back after surgery. Now, my mom was having surgery and neither of my parents had a job. If not for my aunt and uncle we would most likely have been homeless at some point during this, but since we were living with them, thankfully that was one less concern for my parents. Mom had surgery, in which they fused her neck from C2-C7 (all of the vertebrae that makes up your neck). Because of the way they had to lay her to get where they needed to do the surgery, the nerves on her entire left side were damaged, and to this day she cannot lift her left arm without raising it with the other hand; nor does she have full feeling in it.

Two days after surgery the nurses were trying to get mom ready for mine and my dad’s visit. It was Easter Sunday, and mom wanted to look pretty. She got a washcloth bath because she hadn’t showered since Friday morning before surgery. After, the nurse tried to help mom brush her hair, and as the brush went through, a large clump of hair fell into the nurse's hands.

“Mrs…., I’m so sorry, I didn’t do this!” the nurse told her in a panicked voice.

“What, what happened?” mom asked.

The nurse showed her hands to mom and mom gasped. The doctors had to shave her head to cut where they needed to, but left the loose hair there, and never mentioned it to her. Mom was upset, but still wanted to look nice for our visit. When dad and I got there, I was scared because I’d never seen her like that. I was allowed to get up on the bed with her, but I had to be very careful because of the surgery. Mom was in the hospital for four days and when she came back home, she had to wear a neck brace for a very long time, and of course she had to get a proper haircut. Dad and I helped her with anything she needed, but overall, recovery seemed to go well.

In 1997 mom decided it was time to start working again. She got a job as a mail clerk in a local law firm, and spent her days sorting through papers, climbing up and down ladders, walking to deliver and collect files, and much more. She really enjoyed her job, and more importantly being able to connect with people outside of our house again. She loved being a mother and wife, but she wanted to serve others, too, and this job gave her that fulfillment…until one day she started hearing cracking in her neck. She was afraid the fusion had come loose so she contacted her doctor, who immediately made room for her to come in as quickly as possible. The fusion had in fact come apart, and they explained it to mom that she had been living with an “internal decapitation.” Her skull was practically just sitting on top of her spine which was causing her spine to bend the wrong way. She was going paralyzed again, and had to have another surgery. This time, they would fuse her from the base of her skull to the middle of her back (C1-T7), using bone from her hip to aid in the fusion. In order to hold her spine and skull together long enough to heal, she had to be put in a halo, which is a heavy piece of equipment that sat on her shoulders and had four rods, held into her skull with metal screws. Mom had to be in the rehab facility for 19 days in order to learn how to stand, walk, sit, get in and out of bed with this heavy metal contraption that became a part of her. Soon after surgery, her boss, the main owner of the worker’s comp law firm came to visit her.

“Hello, how are you?”

“Well, I’m relearning how to do everything, but I’ll be back to work as soon as I can.”

“No, I’m afraid you won’t be.”

“Sir, you’re firing me?” my mother said with tears in her eyes, feeling her sense of purpose leaving once again.

“No, I’m not firing you. You work hard, and are one of the best employees I have. But honestly, we have clients who have faced less than you and have been on permanent disability for years. I am putting you on permanent disability because I don’t want to risk any further damage to you.”

He and mom visited for a while longer, then he left. I think it was at this moment that mom realized what all she had been through, that she would never work again, and the journey in which we all had ahead of us. Dad and I visited her on a regular basis (which included bringing her flowers and cards for Mother’s Day this time, instead of Easter), partially because we wanted to see her, and partially because we, too, had to learn. We had to learn how to help mom with her every day tasks, how to care for her, how to bathe her, and to ensure that we were mentally okay with doing all of these things. This was a time before mental health really became a prominent focus, so mine and dad’s thought was immediately, “Why wouldn’t we do this? She needs us and this is what we have to do, for her.” It never was a question to us in taking care of her, in any way she needed us. Thankfully, this surgery was at the end of my school year, so I was able to spend the majority of time with her and she wasn’t left alone very often.

Before she came home, we had a hospital bed put in the living room so she could sleep as peacefully as possible, as well as a “permanent" port-a-potty in the kitchen so she could use the bathroom. As much as she strived to do everything she could, she was unable to walk up and down the stairs, and even the two steps to get into the house was almost too much. We had to hold on to her in order for her to walk up and down the steps, let alone the 14 very steep and narrow steps to get to the upper level of our house.

Some of the tasks we helped her with were standing with her while she used the bathroom to make sure she didn’t fall and wiped her if she needed it, helped sit her up and lay her down, helped her get dressed, cleaned the screws twice a day with alcohol and water so they didn’t scab over and become infected, and tried to keep her as comfortable as possible. One of the hardest parts of mom being in the halo, was bathing her and washing her hair. We would try to washcloth bathe her and wipe her down whenever we possibly could. Twice a week she would get a really good washcloth bath when we washed her hair. We had to be careful while washing her hair because we couldn’t let the halo get wet or move it around too much. Under the chest plate, they used lamb’s wool to cushion it against her skin, and we found out the first time we tried to wash her hair that she was actually allergic to the material they used, and it affected her most when it was wet. We would put towels all around the chest plate to keep her dry. We then used a cup to pour water over her hair, as her head lay over a crate. We would gently scrub soap onto her head and carefully poured more water to get the soap out. We then had to blot dry her hair as much as we possibly could then brush it, again taking care not to hit the screws or rods of the halo. Before removing the towels we would wash her thoroughly with soap and water, dry her off completely, remove the towels, then get her dressed. This process took about two hours each time from start to finish.

My summer was spent taking care of mom while dad worked endlessly to ensure we were able to keep our house, food, and insurance. She tried to continue giving me as normal a life as possible by playing card and board games with me, talking with me to make sure I always had everything I needed, tried to cook dinner with my help, and even ventured out to the city so we could still spend time together. Since dad was the only driver at the time, mom and I would get on the public transit bus and go downtown. People would always stare in disbelief, and even made comments about mom, which always made me mad. The one I remember the most was when a guy looked at mom and told her she should put political signs and advertisements on her halo for people to see. Usually we just looked forward and pretended not to notice, at least in front of them.

. “Why do people have to be so rude? Why is this so strange to them?” I would ask through angered tears.

“It’s okay. People don’t understand the things they don’t know, and that usually scares them.”

Despite the strange looks and comments we got, and mom being in the halo, we always tried to have a great time during our outings.

We had fallen into a routine that became easy for us, and everything was going well. Mom was supposed to have the halo on for three months, getting it off close to her birthday. However, she started having excruciating headaches so we had to take her immediately to the doctor. It turns out, the front right and back left screws fractured mom’s skull and they had to remove the halo as quickly as they could or it was going to get worse. This was something we were unprepared for, as it was a month earlier than we were expecting (it was July 2, 1998) and they whisked my grandmother and me out of the room into a waiting area as far away as they could get us because they knew what was coming next. As they began removing the screws as carefully as they could, I heard the blood curdling screams of my mother’s pain. I tried to get up to help her, but the nurses and my grandmother wouldn’t let me. They didn’t think I could handle watching mom go through this much pain. All I remember after that was trying to cover my ears and sobbing hearing mom down the hall, knowing she was completely alone and I couldn’t get to her. They put her in a hard neck brace until they could do yet another surgery to provide more support for mom’s spine.

Finally, at the end of August, mom had surgery number three. This time, instead of fusing her further, they put a metal plate and some screws around her skull and spine to hold them in place. They tried placing an IV in her wrist by stitching it to get it to stay, then in her foot after she was anesthetized. I sat with dad for this surgery, and mom started having complications, so they had her in ICU after surgery was done. We were allowed to visit, but only for a moment to give her time to rest. The next day, she was put into a regular room, and again dad and I were with her. She was in a great deal of pain, but she seemed to be in good spirits. The next day was my first day of Junior year. When I got home, I noticed dad’s car was gone, and I remember getting angry because we were supposed to go to the hospital together when I got out of school. Since this was before cell phones, I had to call the hospital. I called mom’s room number and it rang and rang, eventually connecting me to an operator.

“HI, I’m trying to reach room …”

“I’m sorry miss, but there is nobody in that room.”

“What do you mean there is nobody in that room? My mom is in that room, she was just put there yesterday. Her name is …”

“I’m sorry miss, we have nobody by that name in the hospital.”

I started crying and panicking. I didn’t know what to do. Thankfully I saw my dad’s car pull up and hung up on the operator. I stormed outside, my anger and panic now meshing together into a fear I had never known. “Where the hell is mom, what is going on?”

Then as he approached the other side of the car and opened the door, I saw mom in the front seat, said “What the hell are you doing here?”, and I lost it, sobbing uncontrollably. The doctors felt mom would do best recovering at home where she was comfortable so dad went to get her. They were trying to get home before me to surprise me, not knowing when my bus would drop me off from school. The ten or so minutes that had passed right after getting home were some of the longest I had experienced, not knowing where my parents were, or if mom had faced a downfall and gotten worse. My dad told me to watch my language as he worked to get mom out of the car. Again, we took care of her the best we knew how, but by now this was our life, so it seemed to go quickly, and she seemed to heal well.

In 2002 mom started to experience more paralysis. She was worried about what was going to happen after she had already experienced so much pain and so many surgeries. She was also scared because it took a long time to find someone who would do this next surgery. Her surgeon of the previous three surgeries had unfortunately passed away in 2000, and she had been told by many spine and neurosurgery specialists that with everything she had previously gone through, nobody in Columbus would dare touch her because they feared they couldn’t do anything to help her. Finally, she and dad went to a surgeon at the Cleveland Clinic who was known for completing difficult surgeries.

“Hello Mr. and Mrs. … I’m Dr. … I hear you are experiencing paralysis and have already had multiple spine surgeries.”

“Yes, and I don’t know what to do. Doctors back home have already told me due to the difficult nature of my case, they won’t touch me.”

“Well, I’m sure I can help. Let’s get you set up. Surgery should take no more than six hours.”, he told them, almost arrogantly.

“With all due respect, sir, you don’t know my body and I’m sure it will take much longer.”, my mother said defiantly.

“Ma’am, this is my profession, and I’m sure I know how to do my job much better than you. I will set aside six hours for your surgery.”

“We’ll see.”, mom said furiously, and she and dad walked out of the room. This would be the only interaction they had before the day of surgery.

When it came time for surgery, we had to pack up and head out a day early since we would be traveling more than two hours and mom’s surgery was set to be the first of the day. We had to be at the hospital at 5am for surgery to start at 6am. By the time we got to the hotel Sunday night, practically everything was closed, so we had to pick a local restaurant that happened to be open 24 hours for dinner. None of us were very hungry, because we had been down this road before, but somehow this one felt different. I had prayer stones that dad and I both carried, and mom had one in her pants pocket in the locker. We did everything we could to stay calm, and to try and sleep that night, but we were all very nervous.

The next morning, we tiredly drove to the hospital to get ready. They took mom back to prepare her for pre-op. In trying to get an IV started, they blew multiple veins. Finally they were able to get an IV started enough to get the anesthesia started, but would have to change the location of the IV as this vein would also blow. They had to put the IV in her jugular vein which I’d never seen before. Dad and I went to the waiting room and waited, and waited… and waited. We saw many people come into the waiting room, and talked to them to pass the time. We saw many of these same people leave the waiting room when their name was called to indicate their loved one was finished with surgery. Dad slept, I walked around outside or went to the cafeteria for another coffee. Dad asked the receptionist for any information many times, and were always told the same thing, “She’s still in surgery, the doctor will call when he’s done and that’s all we know right now.” Mom has a very distinctive whistle, and at one point I heard this whistle from across the room and dad told me it was impossible, until a while later he heard her whistle, and looked around as I had earlier. We both had a very bad feeling about this, but didn’t know what it was. Finally, at 11:30pm we decided to go back to the hotel because they couldn’t tell us anything, and we were exhausted. As we were walking to the car, the hospital paged us back to the waiting area. We dashed back and they told us surgery was done, but we couldn’t see her until the next day when she was awake. At least we knew she was safe, and that surgery was complete. We went to the hotel and slept the best we could.

The next day we went back to the hospital and spoke with the surgeon. He told us surgery was quite difficult and they had a great deal of unexpected things happen. Because of the three previous surgeries, they had to go in through the front and remove the previous plates and screws, sew her up, flip her over, go through the back to insert more rods and screws, sew her up again, flip her back over and go through the front to finalize the surgery. Dad only cared about seeing her and knowing she was alright. The doctor’s voice became grim, and he then proceeded.

“I do have to tell you that we faced even more difficulty than that. She died while on the operating table, twice. Once at 1:34pm, and once at 6:12pm (the exact times that we both heard her whistle). We were able to revive her both times, but we have her in a medically induced coma until we know that her body will stabilize itself.” She would tell us later that she remembers this as a dream, and that she tried in her dream to get to us, and came out to the waiting room and whistled at us.

“May we please see her?” my dad asked through tears, this would be the second time I’d seen him cry.

“Of course, but I must tell you she is a bit swollen because of the medicine.”

‘A bit swollen’ was an understatement. Mom was so swollen that her face was flat and had no definition. I told dad, and her later, that she looked like a “mommy balloon.” It was hard to see her like that, especially after having just heard she’d died twice. We stayed for about half an hour, but the nurses said we wouldn’t be able to stay longer because she couldn’t hear us anyway. They promised they would call when she awoke, and we could come back then. As hard as it was to see her, it was even harder to leave. We made the drudgingly slow drive home, not knowing what to expect.

When we got home, dad called the hospital, as he would many times each day until they gave us any news. Finally, they called us Friday around 3pm to say she was awake and ready to see us. We got off the phone and immediately made the two hour trip back up to the hospital. When we arrived, she was angry in a way I’d never seen before.

“Why the hell did you leave me while I was in surgery? I thought you were staying with me.”

“We didn’t leave while you were in surgery. We stayed the entire time and waited right here at the hospital with you.”

“Then what took you so long to get here? The nurses said you’d be right up. Why did you go back to Columbus?”

“Because we had to get back to work. It’s Friday, your surgery was Monday and lasted 17 and a half hours.”

Mom didn’t believe us and asked to see a calendar. When she realized we were right, she started crying and asked what happened, so we told her everything. As angry as she was, was as calm as she became. Partially because she realized we would never have left her, partially because she realized how dangerous this surgery was, and how close we came to losing each other. When the doctor came in to see her, he smiled, but not in the smug way as when they first met; this time in a humble way that can only come from an experience like this. When she was released from the hospital, we couldn’t bring her immediately home, but rather to a nursing home for rehabilitation until she was strong enough to be home by herself. We were able to bring her home for a few hours, but had to take her back, which was always more than difficult for dad. As always, we all persevered through, she came home, and everything was back to our normal.

One year after she had her fourth surgery, she had to have surgery on her vocal cords. They had become paralyzed during that last spine surgery and her voice was raspy, at best. The doctors told her if her voice didn’t return to normal within one year, then they could do surgery, but not before. They put an implant vocal box in and said whatever her voice was one year after that surgery, is what her voice would always be. They also warned that even if her voice came back, she could potentially lose it again as her vocal cords, and the implant box aged. It would be another year before I heard my mom’s voice again. We were at our 4th of July firework show, and mom was able to sing the “Star Spangled Banner “. She used to love singing, and this was the first I’d heard HER voice in two years, during one of my favorite holidays even. I cried. It was so beautiful. Now, her voice is definitely very raspy, and she has to tell people she is not sick, nor is she angry because the louder she has to talk for people to hear, the raspier and angrier she sounds. I still hear remnants of her voice, but we’ve now all gotten used to the raspiness that always remains.

It has been almost 18 years since mom’s last spine surgery, and she is still here. She has had two full knee replacements, a pacemaker/defibrillator inserted, has been hospitalized several times for pneumonia and Congestive Heart Failure, has fallen down the stairs and punctured her spinal cord with her spine, has had consistent migraines since 2010, and is going paralyzed again (but refuses another surgery). She has had all of these things, and more, but still she continues. She still cares for the house, cooks, cleans, drives (very cautiously and when dad lets her), and takes care of dad. She has survived long enough to see her grandchildren and first great grandchild begin their lives. She is still one of my greatest supporters, having attended all of my high school and college events, and now watches as I, myself am a wife, mother, and successful business owner.

My family has been through much, which I was resentful of for a long time because I didn’t have a “normal childhood" (what is normal anyway?), but it is how I learned to care for others in a way that exceeds expectations. I learned to have empathy for those who face things that I do not understand, and to ask if I wish to understand. I learned patience through pain and perseverance. I learned how to love deeply, and that family is one of the strongest bonds a person can have; but time is the most important gift of all. I learned that faith and fear go hand in hand; and trust in the unknown can have dire consequences, but also amazing results. I learned that hard work and pushing through gets us further in life than people think we will go. I learned that life is bigger than myself. I learned that experts don’t always have the right answers, that we know ourselves better than anyone else, and that we must be advocates of our own lives. I learned that everyone has a story to share, and when we listen to or observe those around us, we can impact each others' lives. I learned that life doesn’t always go as planned, but at each moment we have a choice to become victimized or make it better, and that life is truly what we make it. I learned how to look adversity in the eyes and smile or dance knowing I’ve got this no matter what. I learned that my parents did the best they were able to do, and gave me everything they possibly could, mostly their love. I learned that I am strong and have been an inspiration to others through our story. I learned to embrace the life we’ve been given. I learned to truly live, moment by moment. I learned gratitude in everything and take nothing for granted. Mine and my parents lives have not been easy, but what I’ve learned most, is that life, and the people in them, is always worth more than we can imagine.