A Man With True Grit

Rehab1

August 2015, Mark in rehab

Here we are again at a rehab center, eleven days after surgery. Since I’ve watched Mark battle rehabilitation for more than twenty-four years, the pain is both heartbreaking and tiresome. It’s difficult not to question why it has to be so hard and painful. One of the benefits of being in a care facility is that we are surrounded by people with similar struggles. Most of the patients here are overcoming a knee or hip replacement, but a few have an even more serious struggle like bone cancer or a stroke. As I get to know each patient here, my heart goes out to them and as I watch their progression in conquering their health challenges, I rejoice. We are surrounded by people with true grit.

Mark was not a perfect candidate for a total hip replacement so he had several tests to determine whether it was a possibility. Every test revealed a new problem such as severe degenerative disc disease, osteoporosis and scoliosis of the spine and osteopenia (a precursor to osteoporosis) of the hips. The results were discouraging and overwhelming. The bone density test reveal he was a high risk for a break. What should we do and when do we give up? These two questions took months to answer.

The orthopedic surgeon gave Mark only a 50% chance of the surgery improving his condition. Mark replied, “I’ve beaten lesser odds,” and decided to go through with a total right hip replacement despite the risks. Mark’s continuing optimism and determination for betterment is one of the reasons why I love and support him so much. He’s taught me you don’t have to be a cowboy to be a man with true grit, which has become my favorite way to describe him.

If you’re old enough, you may remember John Wayne in the 1969 movie, True Grit. There was a remake in 2010, but I preferred the original western of a totally fearless, one-eyed, pot-bellied U.S. Marshal, Rooster Cogburn, who was hired by a determined young girl, Mattie Ross to find the man who murdered her father and fled with the family savings. Rooster was cantankerous and drank too much, but his shooting ability was flawless. He was known as a man with true grit.

The scene that keeps running through my head is the one where Rooster rides his horse into an open area and faces alone a gang of four outlaws he’s been tracking down for days.

One of the outlaws shouts at Rooster, “What’s your intention? Do you think one against four is a dog-fall?”

“I mean to kill you in one minute or see you hang in Fort Smith at Judge Barker’s convenience. Which one will it be?” Rooster haulers back.

“I call that bold talk for a one-eyed, fat man.”

True Grit“Fill your hands…” Rooster yells while putting the horse’s bridle reins in his mouth, drawing his rifle in one hand and his shotgun in the other as he charges towards the four men, shooting with both guns.

Despite the unlikely odds, he does take all four down.

This comparison may seem a little irreverent or uncouth, but it’s what goes through my mind as I watch Mark combat rehab. He boldly confronts each challenge using every ability he has. He fearlessly fights for improvement and gives little thought to it taking him down. He is indeed a man with true grit. However, I must add he’s much better looking than Rooster Cogburn and his language, manners and conduct are nicer too.

We all have something to overcome and having true grit helps us get through it. Right now I’m surrounded not by cowboys, but warriors with true grit and I’m particularly fond of the one I’m married to. Just like Rooster did, I believe Mark will come out the winner too.

Evey’s Story Update

Nate and Cally Johnson were my first guest authors on October 27, 2013.  Over the past nine months, their daughter, Evey, has made some remarkable improvements, along with some setbacks. I invited them to give us an update, which they so graciously accepted. The first two paragraphs are from their first article, Evey’s Story.

Written by, Cally Johnson

On May 31, 2012 our lives dramatically changed for the better. Our daughter Evey, our fourth child, was born that day with an extremely rare genetic disorder called 17q21.31 micro-deletion syndrome. It is also known as Koolen-de Vries Syndrome.

There are only 200 reported cases throughout the world of this syndrome. Essentially, Evey is missing hundreds of genes throughout her 17th chromosome, which, in turn, affects every cell in her body, and how she develops both physically and mentally.

If there’s one lesson I have learned as a caregiver it is to expect the unexpected. There’s a fine line of balancing expectations with optimism and being realistic without being pessimistic. As I watch other caregivers who are further along in their journey, I always admire the grace they exude when navigating their own specific journey.

Evey has had setbacks and major triumphs over these last twelve months. One of Evey’s major challenges is severe scoliosis.  Because of this, she has two titanium rods placed on both sides of her spine. It required extensive surgery to put them in, and she needs them surgically adjusted and expanded every 6 months as she grows until she stops growing at the age of fourteen. At that time they fuse her spine and by then she will have had more than thirty spine surgeries, not including several other surgeries she will need along the way.  Most people see this as such a daunting undertaking for a caregiver, but I’ve learned to appreciate the consistency and schedule. If only all of Evey’s life could be so well scheduled, without unexpected surprises.

Because of Evey’s scoliosis, the doctors and therapists were not sure if she would ever crawl or walk.  They’d never seen such a young patient with her complications walk or eat on their own.  I’m happy to report that over the last 3 months, Evey has learned to eat by mouth, and is no longer dependent on her feeding tube.  A few weeks after learning to eat, Evey started to bear weight and can now get herself into a standing position and she can take steps in her walker.  She has completely shocked her team of doctors and therapists.  She also completely shocked us, her parents, since we just hoped Evey would stay the happy little girl she is regardless of whether she could ever eat or walk on her own.  We were so excited that she had a spurt of development and is turning into quite the independent two-year-old.

Between these new developments, we have also had some surprising setbacks.  We learned she is losing her hearing from some growths in her ears from repeated infections.  Evey had to have ear surgeries in between spine surgeries, but we are no longer surprised by the unexpected and we had so much positive going on, we didn’t really have time to dwell on this new-found, disappointing discovery. Thankfully, with hearing aids, she’ll be able to obtain some hearing and we are now immersing the whole family in Sign Language to help Evey throughout her life.

It has been such a growing period over these last few months adjusting to Evey’s triumphs and challenges.  We are slowly learning, as caregivers, how to manage expectations and how to continue to be Evey’s biggest cheerleaders for her triumphs.  We hope as time goes on we will continue to learn how to keep disappointment at bay and to always keep the expectations optimistic.  Thankfully, we have met so many people along our journey with Evey who have shown us how to be as graceful as humanly possible in this adventure which is always unpredictable.

Thank you, Cally, for sharing your story. You are a wonderful mom and caregiver to a very special daughter!