The Miracle of Volunteers: part 1, Sandy, UT

Many people assume that because Mark is confined to a wheelchair he’s paralyzed—but, he’s not. Mark has a traumatic brain injury and was comatose for three months. He has damage throughout his brain but the most severe damage was to the brainstem, which is the region of the brain that connects the cerebrum with the spinal cord. The brainstem coordinates motor control signals sent from the brain to the body, so, although he has feeling in his legs and feet, he has a hard time controlling them. It’s not that he has forgotten how to walk or talk—he just can’t coordinate the signals sent from the brain to the body.

Years ago, experts believed that changes in the brain were only possible within the first few years of a traumatic brain injury. But research has shown that the brain is capable of altering existing pathways and even creating new ones. Our motivation for Mark’s continued exercises has come from the hope and understanding that his brain will create new pathways or improve the existing pathways so that he can regain control over his body. This has been our driving force for twenty-two years.

When I brought Mark home from the hospital, eight months after the car accident, he only had a few abilities. He could breathe on his own, and could eat finger foods. Using utensils was hard to do because he didn’t have the coordination. His speech was impaired, and swallowing was difficult for him. He didn’t have much control over his arms, hands, and had no control over his legs and feet.

In my article title, If Insurance Denies—Make an Appeal, I explained our battle to keep therapy going after Mark returned home. I made a total of four appeals to the insurance company. In three out of those four appeals, the insurance did continue therapy, but decreased the amount of time with each appeal.

Being in our thirties, we had youthful energy on our side. We hoped for more improvement, and we were determined and not afraid to work for more improvement. Needless to say, we were devastated when the fourth appeal was denied.

We had been at Western Rehab for more than eighteen months—it literally had become our second home. By then we knew every therapist there and appreciated their work. They had a lot of time invested in Mark and truly cared about his progress.

Part of Mark’s physical therapy was done in the pool. Western Rehab had a lounge chair which hoisted Mark in and out of the water. Wearing a life jacket he could do much more in the pool with the buoyancy of the water. Since it took two people to work with Mark, I became the pool partner with the therapist, Tawnya.  Mark could move his arms more freely, kick his feet and could even walk with a walker in the warm water. We became good friends with Tawnya over the many months of working together. When therapy was coming to an end she suggested I find friends to come and help me with Mark’s exercises during their “open plunge time” for just a minimal fee.  Tawnya, assured me that she would be there to oversee the group during this time, so she could continue to encourage and make suggestions of exercises we could work on.

I asked a couple of neighbors to help me with Mark in the pool. The news quickly traveled in our Sandy, UT, neighborhood and before I knew it, we had several neighbors volunteering their time to help. Mark continued to progress as we worked on swimming and walking in the water. We went at least twice a week, and over a four-year time frame, there were more than a dozen people who came to help us. Each one had a specific day in a month and spent more than an hour with us in the warm water, seemingly cheerful and grateful for the experience. Most were men who came to help, but there were a couple of women also. This continued until we moved to our new home in Draper, UT.

We were the luckiest couple I knew to have such wonderful friends to help and support us. We were so grateful that Western Rehab was so close to our Sandy home and allowed us to use the pool and other exercise equipment also. This made it possible for a determined Mark to continue exercising for five years after the accident.

In 1996 we built a new home with my parents which fit our needs better—but it was so difficult to leave our beloved neighbors and friends of sixteen years in Sandy. They had truly helped us get through a very difficult time.

Next Sunday Story: The Miracle of Volunteers: part 2, featuring Draper, UT volunteers

Family Makes Any Place Home

We wanted a baby for three years before our first child, Christopher, was born. Three years doesn’t seem long now, but at the time, it was forever. I was so thrilled and excited to become a mother, I didn’t dare complain about the sickness or discomfort it caused. I couldn’t understand how any woman could complain. It’s a miracle and privilege to be a vessel in bringing another person into the world.

Katie and Christopher, Easter 1986

I was astonished when seven months later I was pregnant again. Regretfully, I did complain about the sickness and discomfort the second go round. That doesn’t mean I love our second child, Katie Mae, any less. I’m truly grateful for her life and understand the wisdom in her quick arrival to our family. Honestly, she brought so much sunshine to us, and Christopher would have been lost without her.

It was difficult having two kids in diapers and it felt like they always needed help with everything at the same time. It was physically draining.

There was a few times I said to Mark, “These kids are driving me crazy. They talk to me at the same time and always need me.”

Mark jokingly replied, “What’s the problem? You have two ears, two hands and two feet.”

I smile about that now, but I’m sure I didn’t at the time.  It must be the reason I only have two kids. I ran out of ears, hands and feet.

He also tried to bring solace by telling me having two kids so close together had benefits. “We’ll get the toddler, or physically challenging years over, before entering the emotional challenging years of teens.”

It didn’t bring much comfort then, and was especially hard when they both left home within a year of each other. They were both anxious to start their independent life with college and work at the age of eighteen. All of the sudden we were empty nesters. It was hard when they came to us so close together, but even harder when they both moved out. Those eighteen years seemed to have past in a flash.

I wouldn’t trade the hardships. The children have brought so much joy to our lives and they have been great friends. They had each other to comfort when they were scared. They entertained each other, at home, vacation, and many months of nightly visits at the hospital. Sure they fought sometimes like siblings do, but they did chores together as well as played together, and most of the time they loved each other!

Christopher was eight years old and Katie had just turned seven a couple of weeks before the car accident. For two months I stayed at Mark’s bedside in a hospital that was sixty miles away from our home. The kids stayed at Grandma and Grandpa’s, or an aunt and uncle’s house. I will be forever grateful for parents and siblings who lived close by and were willing and able to have the kids stay with them. I appreciate the nieces and nephews who included our kids in their activities. No matter whose house they stayed at they felt welcomed and at home.

I was living in a nightmare. There was family and friends that made it bearable, but my heart was broken with Mark’s condition and the separation from our kids. I wanted to be with them, but knew I couldn’t leave Mark’s bedside. He was in a coma and so critical that he could’ve left us at any time. I hated that I wasn’t there to take care of our kids, and depended on family to do so. At the same time, I was deeply grateful I had family who were willing and able to give them all the loving care they needed.

Children are resilient. I’m sure they felt some disadvantages, but they never complained and always seemed happy no matter whose house they were at. Years later, when Katie reflected on the experience, she said, “Chris was my home.”

Mark with Christopher and Katie 1991
Just a few days after waking from his coma.

Family truly does make a place a home. I learned that when Mark was stable enough to transport by ambulance to Western Rehab which was located close to our Sandy, Utah home. I took the kids to visit Mark every evening for six months. We’d have dinner with him and do homework. When we were all together, Western Rehab felt like home.

I appreciate all those who opened up their house and made our kids feel at home. That includes some very good neighbors and friends who watched after the kids for many months, while I was with Mark in rehab during the day.

It sounds strange, but I really miss those careworn years.  I don’t miss the stress, just the sweet kids — and now when they come to our house for a visit — it really feels like home!

Life with Ricky

Written by, Judy Coon

Ricky Cromar

Ricky Lee Cromar, who is my older brother and the second of seven kids, was born May 17, 1949, with down syndrome and autism.  It was my parent’s choice to keep and raise him rather than put him in an institution, which was customary at that time.

There arose many challenges, especially in the beginning. Ricky was incredibly stubborn as a young child, so to teach him anything was very difficult.  It took my dad, until he was four years old, to get him to feed himself. It wasn’t that he couldn’t do it, he just wouldn’t.  Even simple things like asking Ricky to go wash his hands, he would absolutely refuse.  My mom learned early on that if she went up to Ricky and gave him a hug and told him that she loved him, and then asked him to do things, he would do them without any resistance.

My parents insisted that Ricky be treated like the rest of us kids.  If we had to do chores, so did he. If we did dishes, so did he.  It took longer to teach him, but when he learned his responsibilities, he was very consistent and willing to do them.

We were also taught, as kids, not to leave him out of our games that we would play.  We were to include him and patiently teach him so he could play with us.  Ricky’s mental capacity never surpassed a three or four year old, he was full of love and always tried to do his best at whatever he did. He loved to make others happy and he was such a blessing to have him in our home.

When my parents passed away, Ricky came to live with my husband and me and our three kids. He had stayed with us many times, so there wasn’t much of an adjustment.  While he was with us, he had the opportunity to overcome a lot of his fears.  One of which was flying on an airplane. In 2003, my husband, Layne and I were asked to go to Hawaii for a couple of years and start up a new warehouse for the company we were working for. Knowing of Ricky’s fear and stubbornness I asked George, our oldest son, go to the airport with me to help me out with Ricky since Layne had to fly out a week earlier. George and I were able to get Ricky up to the gate but once there, he absolutely refused to go another step.  After trying everything we could, I said a silent prayer. Just then one of the airline employees came up to Ricky with a wheelchair and asked him if he would like to go for a fun ride. He smiled and sat down in the wheelchair and he pushed him on to the plane.

Over time, Ricky learned to trust me. And with that trust, Layne and I were able to get Ricky to go on boats and trains and to go to new places. His fears started to diminish and he enjoyed more things.

When we moved back from Hawaii, Ricky’s health was slowly starting to decline, so I started taking him to work with me.  He had his own desk in my office and the company would pay him to shred papers and other small jobs.  Everyone knew him and loved him and they would always walk away with a smile on their face after they visited with him.  Ricky had the ability to touch the lives of other people and make them feel happier.

His health continued to decline and Ricky faced many new fears without much resistance. He started having seizures and other problems that he couldn’t understand.  But he seemed to have a relationship with God that he could understand.  There wasn’t anything that I could do or say that would comfort him, but he was indeed, receiving peace and comfort and was able to go through whatever came his way.

Ricky passed away October 9, 2011, and just before his passing, he was extremely happy and excited about something.  The spirit that he brought into our home was amazing and it was quite an adjustment not to have him with us anymore. Even though there were many trials and sacrifices made, he was never, ever a burden and the blessings he brought into our home far out-weighed whatever trials there were. We feel very lucky to have had him in our lives and the lessons we learned from him will always be with us.

Thank you Judy for sharing your story. What a wonderful sister you are and brother-in-law Layne is. Ricky was a lucky man to have been surrounded by your family’s love. Also, you were a great next door neighbor to us for sixteen years when we lived in Sandy, UT. You and Layne have the biggest hearts and we love you both. We appreciate your example and help with our two kids.They always loved being at your house.