‘Kerri, get a grip!’ the doctor said. I could only take Tylenol after surgery. I was sure I was going to die.’: Woman with arthrogryposis muscle disorder says ‘nothing is impossible with a fighter’s soul’

“I was born with a muscle disorder called arthrogryposis. My life has been quite the miracle and surprise. To understand it all, we have to start with when my mother was pregnant with me. She was actually pregnant with twins. She didn’t know at the time, but her uterus was oddly shaped and my twin had pushed me up and around a corner. It was a tight squeeze and I didn’t have room to move or develop the strength in my legs and a little bit in my shoulders. I was curled up and didn’t really move in utero at all.

At 6 months pregnant, my mom had a miscarriage and lost my twin. The doctors didn’t realize it was a twin pregnancy at the time. They didn’t realize I was still there. They sent my mom home to deal with the loss of her baby and to heal. At this time, I was still not moving around so my mom couldn’t physically feel I was there. But she had a ‘gut feeling.’ She went to the doctor saying she still felt pregnant. They sent her home, saying it was all part of the feeling of loss. My mom started having dreams of a little girl in a wheelchair. She knew she was still pregnant and knew it wasn’t going to be the average situation. She went to her doctor again and expressed her concerns and the feelings she had been having. At this point, the doctor did an ultrasound and there I was! He was surprised, of course. There weren’t any tests at the time to figure out anything was wrong with me. Even though I wasn’t moving much, they were taking the wait-and-see approach.

I was born on August 30th, in Santa Clara, CA. My mom went into labor with me 3 days before I was born. When she went to be checked, she was only in labor on one side. They told her it was false labor and sent her home. She was feeling contractions for those 3 days and finally went back to be checked again. They did a stress test and at that time, decided to do an emergency c-section. They could tell something was wrong. My mom said when they held me up, I looked like a pretzel. My body was completely twisted. They rushed me out of the room. My mom wasn’t able to hold me for a few hours. It was at this time they started discussing ‘options’ with her. They told her I wouldn’t be able to do much. They said I would be better off if my parents decided to sign me over to the state. They encouraged them by saying it will be hard to raise such a severely disabled daughter and it wasn’t their fault. My mom immediately asked to be transferred to another hospital.

The next morning, we were both transferred to Stanford Hospital. It was at this hospital I was diagnosed and began the first of 15 muscular-skeletal surgeries. We met Dr. Gamble, who would become my orthopedic surgeon. I also began physical therapy on my arms to stretch them out. They were stuck in such a way I couldn’t use them much until after a lot of moving and exercise. I was fitted for wrist braces to help them maintain proper position.

We were met with a lot of people’s opinions and negativity. People kept telling my mom she was pushing me too hard. But my mom knew what was good for me. She knew I was capable and with extra work, I would be able to do more with my life. She would put my toys on one side of the room and me on the other. It would take a long time, but I would wiggle, crawl, scoot, and flop my body to the toys. It was a lot of work, but worth it. My mom would let me play for a bit and then she would move the toys again to the other side of the room and the work would start all over again. She encouraged my natural tendency to be stubborn and focused that energy to help me learn I could accomplish anything I wanted.

When I was 8 years old, I was sent to a specialist in LA for special reconstructive surgery. They had decided to do surgery on my hips, knees, and ankles all at the same time. By this point, we had also learned I am allergic to almost all narcotics. The only thing I could use to help with pain after surgery was Tylenol. Because part of the goal was to get me fitted for leg braces after this surgery, I was not casted. I woke up with my legs wrapped up to protect incisions, but I was able to feel the pain of every sneeze, cough, laugh, or cry. It was a crazy amount of pain. At 8 years old, I felt like I was going to die. I was screaming and crying. I was inconsolable. Nurses couldn’t calm me, my family couldn’t calm me, and I couldn’t seem to focus on anything but the pain.

My surgeon came to check on me and could see I was beside myself. I will never forget him grabbing my face so I was eye to eye with him. He startled me by saying sternly, ‘Kerri, get a grip!’ For some reason, it hit me hard enough I stopped screaming and just looked at him. He then said, ‘I cannot make the pain go away. You are allergic to all the medicine that will do that. So you can sit here and scream or you can put a smile on your face and use your mind to get past the pain.’ It was probably the first time I considered I myself had the power to get through the pain. It took a lot of practice, but I tried to focus on smiling every time I wanted to scream. Of course, as a young child, I still had my moments of freak out. But I started to notice the pain increased with screaming. It caused way more pain to scream and cry than it did to smile and focus on the pain. But every time I started to cry, I could hear his voice in my head, ‘Get a grip!’ Even now as an adult, I can hear it when I am going through something difficult.

As a baby, the doctors didn’t think I would be able to do much of anything. Now, I am a mom to an amazing daughter, I have traveled all over the world, I work a full-time job, and I have a degree from a prestigious university. I have lived a very full, independent life.

I am grateful my parents didn’t listen to the opinion of one doctor who didn’t have hope. I am grateful they nourished my stubborn spirit. I am grateful that adapting has always been a way of life in my family. ‘I can’t’ and ‘You can’t’ were not phrases used in our home. I was taught to give it a try or to find a way. It shaped me and it has shaped the way I am raising my daughter.

Being a single mother is probably the biggest adapting journey I have had. I was nervous because I had never seen another mom in a wheelchair and I didn’t know how to do it! I am grateful for that voice in my head during motherhood, ‘Get a grip, Kerri!’ reminding me I have an incredible power in my mind to figure out all the situations I come up against. I have so many more adventures to have and so much more to learn how to do. Nothing is impossible with a fighter’s soul and a positive attitude.”

This story was submitted to Love What Matters by Kerri Knudson. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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