A Blessing in Disguise

There is always plenty of work to do and the holiday season is no exception. Thanksgiving dinner was wonderful, but a lot of work. After hours of preparation, there’s the cleanup. What about Christmas? There’s more preparation for parties, dinners, decorations, shopping for gifts and all of this is done after employment hours. Sometimes I wonder why we do so much. Work can be stressful, strenuous and difficult. During those times I’ve dreamed of a genie (pun intended) granting my wish for less work and more play. In my youth, I also loved to watch the fantasy comedy sitcom, Bewitched. I’ve thought how awesome it would be to have the magical ability to accomplish anything with a twitch of my nose, clap of my hands, or a snap of my finger and thumb, eliminating all the hard work.

Have you ever thought of work as a blessing? Usually I think of it as the means to provide for the necessities of life. Without work, how do you pay for, prepare for, or participate in recreational activities and vacation time? Everything takes work, including the fun times.

I didn’t realize the worth of work until after our car accident, which made it impossible for Mark to continue in the electrical career he was schooled and trained in. He dedicated twelve years to the trade and was successful, reaching the highest level as a master electrician. After eighteen months of rehab, he was anxious to get back to work. Realizing he wouldn’t be able to work as an electrician while in a wheelchair, he asked every day what he should do with his life. He said he needed to be productive to have self-worth and wanted a purpose for life. Work provides purpose.

It was hard to imagine what he could do or that any other kind of work could bring him the fulfilment the electrical field did. I tried to convince him that rehab was his job. His focus should be regaining his physical and speech abilities so that he could go back to work as an electrician. Two years passed and he continued with his rehab, having eye surgery to fix his double vision and two surgeries on his feet to correct the foot drop, which made it difficult for him to stand. He continued to ask often when he could go back to work. I hadn’t realized before how important work is for making life worthwhile. Sometimes we don’t appreciate what we have or what we can do until it’s no longer available.

We volunteered at our children’s elementary school twice a week, reading with the kids or helping with math and spelling. Mark enjoyed the kids, but sometimes they couldn’t understand him because of his speech impairment. Children are so honest and they would ask him often what happened to him or why he couldn’t walk or talk. These comments appeared to bother me more than Mark, who is accepting and understanding of others curiosity. I wanted to protect him and our own two children, wondering what questions and comments they had to endure. I was worried our children might become discouraged or uncomfortable with our circumstances so I thought it would be best if we volunteer elsewhere.

After checking into options with our church, Mark was able to do some volunteer work at the Bishop’s Storehouse posting food orders in the computer twice a week. He also went to my brother-in-law’s family music store to stamp their logo on their sheet music at Day Murray Music. He enjoyed and appreciated the opportunity to go to these places and volunteering his time, but he wanted to financially contribute to our family needs.

The next year brought two more surgeries to fix Mark’s hip joints, which were filled with calcium, making it impossible for him to bend at 90 degrees. With his sight still set on getting back to work, I heard Mark often rehearsing electrical codes or terms so he wouldn’t forget them. He wanted me to pay the fee to keep his Master’s License current, but he was willing and wanting to do any kind of work until he got back on his feet. I had a hard time envisioning him finding any kind of employment because he was dependent on me for most tasks of daily living such as dressing, transferring in/out of the wheelchair and transportation, but wanting to support his goals, we pursued Vocational Rehab.

Mark at work desk at Discover Card

The male crew in the mail room

He went through an intense week of testing. His I.Q. score was higher than normal, but his physical skills were low. The program helped place him in a part-time job at Discover Card. He did computer work recording P.I.N.’s (personal identification numbers) and enjoyed that job for eight years until they closed down the mail center. This was the appointed area for all the eight employees with special needs. They worked together with one supervisor who was trained to oversee and help each individual accomplish their job. Most of the special needs employees sorted the mail to the various departments and delivered them there. Mark worked on the computer, but because he needed help getting to and from the Paratransit bus to his desk, the restroom, lunchroom plus make sure he was stocked with the paperwork needed for his computer entries, his work desk was located in the mail room. He couldn’t do this job without the help of the supervisor. The group of special needs employees were devastated when they were replaced by equipment which sorted and delivered the mail to the various departments in 2004.

2004 Discover Card mail room crew

What do we do now? I knew it would be hard to find a job where Mark would be safe and get the help he needed to accomplish work tasks. I also knew he wouldn’t be satisfied being at home every day without work. I learned the importance of work and realize its worth is so much more than the monetary value. Work brings happiness.

Work is a blessing in disguise. We may curse it and wish we had less of it to do. I no longer dream of a genie to lighten the work load, but rather one who could help us find work for Mark. It would be nice if I could twitch my nose, clap my hands, or snap my finger and thumb and make a job appear.

On Tuesday I’ll share with you tips on how we found work for Mark.

Happy Thanksgiving

Evey’s Story

Knowing other caregivers and their stories gives me strength and encourages me to do better. I enjoy my connection and the inspiration I get from each one. Our circumstances may be different but we share the same concern, love and responsibility for another individual with special needs. I want to share some of these amazing stories on my Sunday posts. My first guest authors are Nate and Cally Johnson.

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.

When she was born, it was clear that there were aspects of her that were unique.  Her look was not typical, some physical characteristics were cause for concern, and, she neither woke nor ate…nor cried.  But, despite all this – she seemed calm, peaceful, and content.  She didn’t show any signs of pain, and she didn’t seem to complain.

After a difficult first month of trouble breathing and eating, and waking up only rarely, we received the official diagnosis of her rare condition.

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.

Evey requires constant care and attention.  She receives all of her food through a feeding tube, which begins in her stomach, and deposits food directly into her intestines.  She has had several surgeries to fix her many physical malformations, and will need dozens more throughout her lifetime.

If we had a nickel for every time someone asked us: “How do you do it?” – we would have quite a few dollars, and, we would like to use those dollars for some cupcakes on the days we really need them.  So cupcakes, donuts, and ice cream are a lot of the answer to how we do it.

We give to Evey, because she gives us so much in return.  When we have sleepless night after sleepless night, she smiles at us and we immediately feel her giant spirit, and it feeds our tired souls.  When she requires lengthy hospital stays, we watch all those medical professionals fall in love with her and feed off her joy and happiness.  She always radiates warmth and is never bitter at what life has dealt her.  Beyond that – we’re constantly crossing paths with people whose family members are in even more dire circumstances than ours and Evey’s: people whose family members and friends have never come home from the hospital, requiring constant care; families whose children and friends have come and gone in what seems like the blink of an eye.  For all the challenges and exhaustion, just having Evey with us is a constant reminder of how blessed we are.  And, we are fortunate to be surrounded by family and friends who lift and strengthen us – so, we can make it, for however long the journey.

She is strong, so we are strong.  She is happy, so we are happy.  She never complains, so, why should we?”

Thank you Nate and Cally for sharing your inspiring story.

Tender Mercy

Mark usually wakes up happy, but the morning of April 16, 2013 he was beaming.

“Good morning,” I said.

“I just had a rush come over my whole body, and I feel all better,” Mark said excitedly.

“Great. How do you feel better?”

“My muscles feel better and I think they’ll co-operate with my brain now. Watch,” Mark said as he moved his leg, bending his right knee, and straightening it. He tried to repeat the same movement with his left knee. It did bend but not as easily as his right knee. The left leg always gives him the hardest time in responding to his brain commands. He was trying hard to imitate the walking motion while lying on his back.

Encouraging him, I said, “That’s wonderful Mark.”

I must admit, I was a little disappointed. His demeanor and confidence made me believe that he was “all better.” It had been 22 years since the car accident and when he lost total control of his body. He’s worked hard to gain every ability, starting with waking up, breathing on his own, swallowing, talking, moving in his arms and hands. He’s determined that someday he’ll have control over his legs too.

He was thrilled.  His ultimate goal was about to be reached. In that moment he felt “all better.” Those feelings he’d never related to me before.

Wouldn’t it be magnificent if it happened, just like that? I believe it could, if God willed it. But it was not His plan. Not for that day anyway.

That evening, I was helping Mark with a shower and he said to me, “This morning I felt a rush come over my body.”

Mark did not remember he had told me, so I reminded him that he had.

“Good,” he said. I wanted to make sure you knew, because I think my recovery will be faster now.”

“Did the rush go from your head to your toes or was it all at once over your whole body?”

“It was all at once, all over my body and it lasted a minute or so.” He remembered it vividly.

Then he smiled and teasingly or excitedly said, “I may even get my hair back, won’t that be great, if I regained it all . . . to my perfected Celestial state!”

“Not yet.” I said. “I prefer to keep you here with me on earth.”

Then I felt a little selfish and wondered if he was ready to move on. Seeking conformation, I asked, “Wouldn’t you prefer to stay here with me?”

“Of course I would,” Mark replied.

Sometimes I wonder if Mark lives for me. I’d love for him to be free from his frustrations and inabilities. But he inspires me and so many others. His spirit is strong. He is full of hope and faith, and works hard to accomplish every task. He is thoughtful of others. He appreciates everything he has and the help he receives. These are good reasons to love him and to hang on to him as long as I can.

This experience brought much joy to Mark and I was grateful that he was able to remember it throughout that whole day.