When Kristen Grace McCaig was born we all knew she was special. Her dark brown eyes soaked in the world with a curious sparkle. Sadly at a day old, she began a pattern that would continue for the next twelve years of her life. That pattern of countless trips to the hospital and doctors offices with bizarre ailments resulted in only confusion and concern but no diagnoses. Day 1 it was blood in the stool. Age 6 months to 18 months it was “failure to thrive.” She was tested for everything under the sun but no one could figure out why she was so small. At age four they told us she would not reach five feet tall as they continued to poke and test her for every genetic disorder imaginable.
At age seven she could not draw a straight line and writing her own name was an agonizing experience. She was diagnosed with visual motor integration dysfunction which is basically a fancy way of saying she could not write well. There was a kind of disconnect between her mind and her hands but no one could explain why. While she was excelling academically, she continued to fight her body. In PE, she was the slowest child and her PE teacher noticed motor planning issues in her inability to string activities together like the other children.
At age twelve things got even scarier when she started falling. One minute she was sitting on a stool talking to me, the next she landed on the ground with no idea as to how she fell. She started to zigzag as she walked across the road. She lost the ability to go up stairs without holding the railing. It was as if her legs were not communicating with the rest of her body. Next she began to notice numbness in her feet with all this culminating in her inability to walk unaided. In the six weeks it took to get in to see a neurologist, she went from an occasional fall to requiring assistance to walk. Then in one week she went from needing minor assistance to needing a walker and almost complete paralysis in one side of her body and no one could figure out what was causing all her issues.
She went through cat scans, MRI’s, a whole new round of genetic screening, but the EMG was the worst part. They stuck needles into her body and shocked her muscles repeatedly as she screamed for them to stop. It was the most difficult hour of my life as I tried to calm her and assure both her and myself that it was a necessary procedure. Thankfully it was this procedure that pinpointed the issue beyond a shadow of a doubt: a severe kyphosis in her neck. A kyphosis is basically a bending in the spine that causes a compression of the spinal column. However, it was not until the night before the surgery to repair her spine that the doctors discovered the cause of the kyphosis and I believe her twelve year battle with her body. It appears that when Kristen was born, the portion of the bone surrounding her upper vertebrae was missing. That bone loss over time caused her head to drop and ultimately compressed her spine resulting in paralysis.
In late August 2008, the doctors performed a bi-lateral fusion with a posterior lamindectomy and halo placement which is medical talk for the placement of medal rods and pins that now hold Kristen’s head up and a brace that was screwed into her forehead and scalp to hold it all in place while it healed over a three month period. While she has minor limitations in her head movement, and scars where the halo brace was screwed into her forehead, we are happy to report that she has made a full recovery. She will never win any races and her days of jumping on trampolines are over but she can walk and tonight, she will dance.
As she and her friends put on make-up and dress for the Tomahawk Creek Middle School dance, I can’t help but praise God for my daughters miraculous healing. She never complained, she never said “why me” or “it’s not fair.” She simply took every obstacle she has faced in her short life in stride and found joy in the things she could do, like reading Harry Potter books, caring for her cats or hanging out with friends. I pray someday, I am as mature and as content as my twelve year old. She truly is my hero.
One street over my dear friend Sharon Dresher and her son Rob are also preparing for the same 8th grade dance. Rob’s story is still unfolding. After a complication with a surgical procedure, Rob experienced damage to his spinal column which has resulted in paralysis from the waist down. Rob will be dancing tonight in a wheelchair but his spirit will soar right alongside the rest of his classmates. Like Kristen, Rob and so many other children who bear the burden of physical impairments, seem to be touched with a special dose of grace that inspires us all.
In my work with the impoverished in our city, I often quote Matthew 25:37-40
37“Then the righteous will answer him, ‘Lord, when did we see you hungry and feed you, or thirsty and give you something to drink? 38When did we see you a stranger and invite you in, or needing clothes and clothe you? 39When did we see you sick or in prison and go to visit you?’
40“The King will reply, ‘I tell you the truth, whatever you did for one of the least of these brothers of mine, you did for me.’
I have written on the Preferential Option for the Poor on our Unity Works site and how God’s grace is present in miraculous ways with those who suffer economic hardships, but I think this passage gives us a foundation for extending that understanding. Here we learn that Christ is present in a miraculous way with those who are hungry, alone, in need, imprisoned and sick. As I reflect on my journey with Kristen and my friend Sharon and her son Rob, I believe that I have witnessed this supernatural connection with Christ not only with the impoverished but those who are sick and suffer physically. I saw it this week in my friend Beth Grogan as she prepares for chemo therapy to treat her breast cancer, or my friend Ron Smith who is going through radiation for his cancer. Despite the physical hardships they are all facing, there was a peace that passes all understanding. God’s favor seems to rest on them in a mysterious way. Some, like Kristen, will receive physical healing and others will continue to endure the hardship of physical limitations while others lose their lives to their illness, but they all have experienced Christ presence in a way that those of us who have been blessed with physical health will never understand.
While I wish I could wave a magic wand and go back in time and grant my daughter a healthy spine and save her from the pain and suffering she has endured, I would never change the person she has become through this process. She may not be as light on her feet as the other girls at the dance but she was aptly named “Kristen Grace” and she will forever be my hero.