Share a Sweet Reward

BIAU Family Award

BIAU Family Award

Why is it so hard to accept a compliment or recognition? It always makes me feel uncomfortable and awkward. I never know how to respond, so I usually just say “thank you” and change the subject as quickly as possible. Then I hope the giving person realizes how much it means to me.

I recognize that no matter the accomplishment, I didn’t earn it on my own. Without God, family and friends, I am nothing.

Maybe, self-consciously I’m worried that if I take it in and enjoy it, like any sweet dessert, I may become over indulgent. Like when I take a bite of a brownie, I think I’ve died and gone to heaven. The gratification is instant but the satisfaction doesn’t last. It was so good, I need another. Most desserts have the same effect on me.

I had a deliciously sweet experience last week at the Brain Injury Alliance of Utah Annual Family and Professional Conference. During lunch time, I received the Family Award. Mark Fox, a therapist who worked with my Mark twenty-two years ago, presented me the beautiful plaque. I was honored and so surprised.

When I look at the plaque, I think of all our family members and friends who have given much of their time to help and support us.  They also deserve this plaque. It bears my name, but I see theirs in it too.

Our thoughtful daughter, Katie, realized this as well. She threw a surprise dinner celebration for us and honored family members and volunteers who come and help Mark with exercises. Most of them were there. They are the wind beneath our wings.

photoTo all caregivers I personally know: I understand your unconditional love and the necessary attention to those in your care that seems to go unrecognized most days. I feel your exhaustion for the endless care, and worry. I know you sacrifice your time, putting their needs before your own. I share this plaque with you.

I can think of dozens I know who deserve this plaque. We give devotion and dedicated service, not for recognition but because we love unconditionally.  However, the recognition is sweet and gratifying, and the satisfaction will be lasting. I am honored and want to share this sweet award with you.

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.

Our House On a Hill

What I’ve learned from our house on a hill:

  • It’s dangerous for a person in a wheelchair to live on a hill.
  • A smart dog makes a big difference.
  • A caring and fast acting neighbor is essential.

I’m not sure if you’d call our home a ranch style or rambler house. The urban dictionary states: “Rambler, a one-story house with a basement. Not to be confused with a ranch, a one-story house without a basement.” We technically don’t have a basement, but my parents do live in the lower level of our home with a separate entrance and garage. How did we accomplish this? We live on a steep hill. From the top of the hill, where our entrance is, you don’t see the lower entrance.  My brother, Mick designed our complete wheelchair accessible home and we built it in 1996. We love our home and have enjoyed this living arrangement with my parents for nearly eighteen years.

Fortunately, we live on a close-knit street, not because of the distance between our homes, but the closeness of our friendship. Our home and the one across the street are the first homes on the cul-de-sac.  Two homes on each side of the road are located as you go down the hill, with one home at the end of the road. Each home is on a one acre lot. Most of our neighbors are the original homeowner and were all built within a couple of years of our home.

My mother fell the other day and injured her collar bone. I was downstairs checking on her and according to Mark, who was left upstairs, I took too long for the checkup. He was convinced that there was a party going on downstairs and he was determined not to miss out.

Mark headed out the door, down the driveway and ready to go down the steep hill in his manual wheelchair. Cooper, the neighbor’s smart dog down and across the street, spotted Mark and barked up a storm. Alerting his owners to the disaster that was about to happen. Our dear friend and neighbor, Stephanie, bolted up the hill and saved Mark from a tragedy by helping him down the hill.

I wish I could say this was the first time she had done this, but the truth is, she’s had a previous adventure and her son, Josh, had the experience once over the past ten years.

Unfortunately, there was an additional time when Mark got down the hill and made it to my parents’ driveway, and then tipped over as he tried to turn in.  Luckily, our next door neighbor, Kent, heard Mark calling out for help. Mark always wears his wheelchair seat-belt so when he tipped over he did not leave the chair. Kent had a miserable time getting Mark and the wheelchair upright on our steep incline. He did not dare leave Mark in this precarious position to get help. Kent worried a car might come down the hill and not see Mark lying in the road until it was too late. It took Kent some time, but he was blessed with extra strength and finally got Mark and the wheelchair upright. Mark promised never to do that again and I’m sure he wouldn’t have done it on Saturday if he had a better memory.

I try to be a good neighbor, but with these kinds of adventures, the best neighbor scale can never be leveled. We are so fortunate to have wonderful neighbors who look out for our best interest. I’m so sorry for the scare, and I can’t thank them enough for their care! 

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.

Caregiver’s Syndrome

I have caregiver’s syndrome: I can make appointments and take Mark to the doctor more easily than I can do it for myself. My excuses are: I spend too many hours in the doctor’s office as it is; my issues are not serious; I’ll go later when things settle down. The truth is “trigger” thumb is not as serious as blood clots. However, it’s uncomfortable as well as somewhat debilitating. After trying creams and a thumb-support brace prescribed by my primary care physician seven months ago, I was convinced that only surgery would fix my problem.

I put off the appointment with an orthopedic doctor for months. How could I have surgery anyway? I need my hands not only for my care, but for Mark’s as well. Who would shower, dress, and transfer him? I didn’t want to ask family or friends.

Since September, when Mark returned home from the care center, we have the benefit of home health care. I really appreciate the extra support this gives me. I wish the insurance would see it as a continual necessity. But since they don’t, if I have to have surgery, now is the time, while Mark has this benefit.

I made my appointment.

After a three-week wait to get in to the doctor, I was told a cortisone shot would most likely take care of the problem. I had it and it did. Why did I wait so long? It was almost instant relief. The thumb is still a little stiff and I can’t completely bend it yet, but it’s only been one week.  The pain is gone.

I also made an appointment for my annual checkup that was four years past due.

“Have you had your colonoscopy yet?” the doctor asked.

“No,” I said, bracing for her reprimand.

“You’re almost 5 years late. You better get that scheduled. It’s not that bad.”

“I have helped my husband through the preparation twice. It was horrible!”

She imagine about how hard that would be for a wheelchair dependent person and the hundred of rushed transfers to the commode, and then she agreed with me.

“The preparation is the worst part, then you get to nap,” she said, and suggested that next time I get Mark admitted in the hospital for the preparation.

“We can do that?” I asked.

She thought in his case we could.

After reviewing the questionnaire I had filled out just before the appointment, she looks at me and asks, “Why are you taking Flomax?”

“For my allergies,” I replied.

“Flomax is not for allergies it’s for the prostate.”

Turning red in the face I said, “Oh yeah, that’s my husband’s prescription. Mine is a nasal spray called, Flo something.”

She chuckled, “You mean Flonase.”

“Oh, yeah, that’s it.”

“You definitely have caregiver’s syndrome,” she said.

I’ll gladly take that reason over being absent-minded and resolve to pay more attention to my own health. I only have two prescriptions and I can’t remember the names of them. Mark, on-the-other-hand has several prescriptions, and those I know.

Mark’s well-being is dependent on me, therefore as a caregiver I should pay more attention to my own health so I can be well and strong.

It’s easy to say, hard to do. But I’m going to work at it.

My Secret

The summer of 2013 was the hardest since 1991. Mark was in the hospital three times for a total of thirteen days, a care center for rehab for an additional twenty days, and home healthcare for about sixty days, which is still on-going. The cause of this four-month trial is blood clots. Mark has had no previous history of blood clots, recent surgeries or injury, yet he developed multiple clots in his right lung and left leg. The doctor’s best reason is inactivity.

While Mark was at the Care Center, a therapist said to me, “You stay so positive and supportive. What is your secret?” I was taken by surprise by her question and compliment and my expression must have shown it. “No really,” she said, “I’d like to know so I can share it.”

“I don’t think I have a secret. I love my husband and want him to be the best he can be.”

I’ve thought about that conversation a lot. Ironically, the therapist didn’t know that I had a break-down several days before her question after enduring a sleepless night in the emergency room.

At the hospital, we were overwhelmed with tests and the concern of why his blood clots had grown when he’d been on blood thinner medication for several weeks. The conclusion was that he needed to be admitted in the hospital for the third time this summer. At 5:30 a.m. Mark’s nurse from emergency pushed him on the stretcher to his hospital room. Two aids moved him from the stretcher to the hospital bed. We met the doctor and nurse that would be caring for Mark. I settled in on the bench in the hospital room with a blanket and thought, great, we can now get some rest after our stressful, sleepless night in emergency.

Not so. Soon there was the shift change so we met the new staff, then a routine started. Every ten minutes a doctor dressed in green scrubs would come into the room, poke and prod, ask a couple of questions, and leave the room again. Just when I thought we could finally get some rest another doctor or nurse appears again. This routine lasted through breakfast and for several hours. Exhausted and frustrated with the situation and hospital, my head was pounding and I felt nauseated. The worry and constant interruptions with doctors and nurses had pushed me over the edge. It took a toll on Mark as well. He started having a series of seizures. The doctor said I should go home and get some rest.

“I can’t go without Mark. I worry his needs won’t be met because of his speech impairment and short term memory loss.”

He assured me that Mark would be well cared for. The thought of him being alone and confused about where he was and what was happening to him was more than I could bear. Nevertheless, I felt physically ill from exhaustion, so for the first time in twenty-two years, I left Mark alone in the hospital, adding “guilt” to my burnt out state.

As soon as I arrived home, I called my brother Steve, who doesn’t live far from the hospital. He rushed to stay with Mark until our son, Chris & his sweetie Jenn could be there. They stayed overnight and into the next day until I arrived. The following night, my daughter, Katie & her husband Eldin came and spent the night until I arrived again the following day. Family shifts were organized for the week he was hospitalized so I didn’t have to carry the stress and worry alone. I got the rest I needed to get better. I’m forever grateful for my family!

After contemplation, I realized, that’s my secret. I have a wonderful family which stands behind me and renders help whenever and wherever needed. I also have great friends and neighbors that do the same. This remarkable support group makes it possible for me to be the positive and supportive caregiver I want to be. I could not do it alone.

What is your secret?