Sometimes it’s hard to feel happy. I’m going through one of those times when life seems overwhelming and I’m not sure how we’ll get past the next six weeks. I just have to remind myself that judging from past experience everything will work out as it should. I found this YouTube video and I love how the senior citizens show us just how “happy” is done. It made me smile and I hope it does you too.
I hope you have a happy and carefree day!
Everyone enjoys celebrating birthdays and wedding anniversaries, but the date of an unhappy event makes it a tough day. April 27th is always that kind of day for me because it’s the anniversary of our car accident, which dramatically changed our life’s journey. I’ve learned grief doesn’t magically end after a certain period of time. Even twenty-four years later, the date and other reminders still bring back the sting of loss. Possibly it may always hurt, although with time the pain does lessen.
Usually, I plan a trip around this time of year. It gives me something to look forward to, but details of an upcoming hernia operation made a vacation impossible right now. When I’m feeling low I try to count my blessings, so I’ve set my sights on writing a positive blog article tonight to lift my spirits.
I’m glad Mark and I survived the accident which could have taken both of our lives. I’m grateful our children weren’t with us when it happened. At the young ages of seven and eight they appeared to be more resilient and accepting of our new life style than they might have been if they were teenagers at the time. Their childlike belief that all would be well kept us fighting and working towards their expectations.
I’m thankful the accident happened before we moved instead of after. I’m grateful for the advice and insight to stop the sale of our home. This unfamiliar road would have been so much harder had we been attempting to get settled in a new house while seeking new friendships. I appreciate the love and support we felt from our Sandy neighborhood. The benefits of Mark returning home to a familiar place surrounded by familiar people proved to be immeasurable, especially with his short-term memory problem. There were unexpected advantages to his memory issues as well, such as not recalling the pain and length of time in rehabilitation.
I’m grateful Mark regained consciousness after three months of being comatose. We are blessed he remembered the most valuable things in life—faith, family and friends. He retained his quick-wit and continues to enjoy making people laugh. He is fun to be with and works hard to accomplish things which use to come easy. His example of patience, endurance and the constant expression of appreciation encourages me to do and be better. He reminds me that bringing joy to others brings joy to self. He teaches me what’s most important in life and encourages me not to worry about all the other stuff.
I’m appreciative of the wonderful people we have met since our accident and their examples. They are my mentors who give me strength, courage and faith that I can succeed in my caregiving endeavors. I’m grateful for those who have shared a part of their stories as guest authors on Uniting Caregivers.
I’m delighted we live in a wheelchair-equipped home with amenities which simplify our life and weren’t even invented many years ago. I’m fortunate to have a brother with the knowledge to draw plans and a father and more brothers who had the skills to build our home and make those plans a reality. We’re fortunate to share our home with my parents who are willing to help in every way they can. Our home provides comfort and conveniences, which make our life more enjoyable.
I’m lucky to have wonderful friends who love and encourage us. Some of whom made our move to Draper easy. They welcomed and helped us feel comfortable right from the start. We moved five years after the accident and we’re still adjusting to a different way of life. Their friendship, love and support assisted us in making our new pathway bright. Our move came just at the right time and location for which we’re so grateful.
I’m privileged to have loving parents and siblings who have always been generous with love and service. We’re blessed they all live close by and we can call on any of them at any time. If possible and needed they would come at a moment’s notice to assist in any way they could. We enjoy doing things together besides loving one another.
I’m fortunate to have the acceptance and love of Mark’s family and although they all live in other states, we know of their concern and care for us. I’m thankful for cell phones, FaceTime, email and social media, which make the distance much closer and keeps us connected.
I’m blessed to be a part of a large, extended family where cousins, aunts, uncles, nieces and nephews are connected and involved in our lives. We love and appreciate our relationship with each one and I’m grateful for their love and loyalty to family.
Looking at all these blessings we have received I realize our life has turned out just as it should for our own personal growth. Our journey took an unthinkable turn on April 27,1991, one I did not expect nor could have prepared for. However, there is joy in this journey and at the top of the mountain there is a beautiful view.
I’ve seen and felt a lot of sorrow lately. A beloved aunt Joy, is suffering with Alzheimer’s. My cousin, Larry, had a brain aneurysm and is struggling to recover. My love goes out to them, their spouses, children and grandchildren. On top of all this, I am reminded that on Monday it will be twenty-four years since our car accident. Life is hard and I suppose it was meant to be. Fortunately, happiness can still be found along the way. Our lives bring the tests we need in order to learn and grow.
My sister’s mother-in-law passed away last month and my brother’s father-in-law’s funeral is tomorrow. I am proud of Rosanne and Klint for the many years they took care of their mother, Arlette, in their home. Likewise, Don and Ruth were wonderful, thoughtful and attentive caregivers to their dad, Allen. Through their caregiving, I got to know my in-law’s parents and they enriched my life as I observed the grace they had in their health trials. I’m grateful for their example of enduring to the end.
The Test, written by Janeen Brady, has been a favorite song of mine for many years. I share it tonight with love and empathy for my wonderful family members who are going through some tough times. I love you and I’m sending hugs your way!
In writing The Value of Testing article, I gained a new perspective of the purpose and benefits of trials. Every day Mark was continually being evaluated physically, mentally and emotionally. The assessments pointed out what abilities he retained and what he needed to relearn. The information directed the doctor and therapists in helping him through the rehabilitation process. The necessary painful and difficult analysis of his capabilities often left both of us feeling discouraged and overwhelmed for what he’d lost.
During this hard time I was going through a personal examination of commitment, faith, endurance and strength. As I reflected on Mark’s and my own trials, it became clear to me that life is continually testing us. Sometimes we feel alone in our trials and wonder why we’re not getting the help we need or the answer from God. However, in the silence and loneliness, we often learn the most. As I remember, a teacher is always quiet during the test. Life is constantly teaching us something if we just pay attention. Through self-evaluation we can learn what areas we excel in and where we need to improve. A few other tips I found on life’s lessons are shown in these images.
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Illness teaches me to appreciate good health and prompts me to take better care of myself and those around me.
Suffering teaches me the importance of service and giving relief to others.
Death teaches me to be grateful for life and the love shared with others.
Grief teaches me empathy for others and helps me connect with them on a deeper level.
What lessons have you learned from life?
As Mark’s physical health stabilized and his awareness consistently improved, his daily therapy sessions became a test to find out what he remembered and what he needed to relearn. The physical therapist, Sharon, didn’t just do range of motion exercises where she did all the stretching, but now tried to teach him how to move his own body. The occupational therapist, Cheryl, and speech therapist, Kris, worked on simple math, reading and writing skills. Evident from the beginning, his long term memory was good. He remembered not only family and friends, but employers and events from his past. However, remembering what happened the day before or even just hours earlier in the day was poor. The therapist gave him a notebook and instructed him to write what he had worked on after each therapy session. In the next session, the therapist asked him about the previous therapy. When he couldn’t remember what he had done, they reminded him to check his notebook.This occurred in all six therapy sessions each day in hopes to improve his short-term memory.
The tilt table was as unpleasant as any test could be for Mark. After transferring him onto the padded table, Sharon positioned his feet so they rested on the footplate. Safety belts strapped his body to the table to ensure he wouldn’t slip off. Sticky patches (electrodes) were placed on his chest, legs and arms and were connected by wires to an electrocardiogram (ECG or EKG) machine, which monitored his heart rate. A cuff was wrapped around his arm to check his blood pressure. While pushing a control button, the table slowly moved from a horizontal to a vertical position. His heart rate and blood pressure regulated the degree Sharon would angle the table in each session. If his blood pressure dropped or there were prolonged pauses between heartbeats, she slowly returned the table to a horizontal position. It took several therapy sessions before Mark could tolerate going from lying flat to a head-up position. Once he could endure the vertical position, Sharon extended the length of time being upright from five to forty-five minutes over the next few weeks. She vigilantly monitored Mark and I always felt like he was safe. However, it appeared to me he felt unsafe, possibly confined or maybe light-headed because he despised the tilt table. When I asked him why or what was wrong, he said, agitated, “It’s just a waste of time!” While in the upright position, he often lashed out at the therapist, “Get me out of this senseless contraption,” or he’d demand I take him home.
When Cheryl and Kris gave Mark simple math problems and he correctly answered, my heart soared like a kite. He could read children’s books with little difficulty, but Mark had double vision, which made it nearly impossible to read the small print in adult books or a magazine. After reading a couple of paragraphs to him, the therapist questioned him on the content and he’d have trouble remembering what they had read. Mark seemed frustrated and/or embarrassed. My heart dropped into a dark hole as I remembered his perfect grades in college and the pride I had the previous year as he passed the ultimate test and earned his Electrical Master’s License. I wanted to give him the answers and save him from the humiliation. Other times it appeared he had the correct answer on the tip of his tongue, but the words came out wrong. Knowing he’d given the wrong answer, he struggled to find the right words to correct it. Irritated and impatient with himself, he’d say he was useless or felt inadequate. By the end of his daily therapy schedule he’d be exhausted and discouraged. It definitely was the hardest and most painful work he had ever done. The brightness of the day came at night when I’ brought the kids for a visit. They didn’t ask him trivial questions, or expect him to do hard and painful movements. They loved him unconditionally and were pleased just to see him awake and have him close to home. Every night they filled his empty cup with love and encouragement, which helped him get ready for the next day’s drain.
Mark was anxious to come home and nearly every night he’d make a comment like: “You need to take me home with you.” or “This is not a good place to be, please get me out of here.” Another night he said,“You need to take me far away from here. They ask silly questions.” One night he recited our home address and told me specifically, “That’s where you need to take me!” I was happy he remembered our address. I understood his longing to be home, to return to familiar surroundings and a normal way of life. I had the exact same yearning. Our house didn’t feel like home without him, but I silently worried about the future. How long would we have to deal with this new way of life? When would Mark be able to come home? How could we speed up this rehabilitation program? My biggest question: What changes did I need to make to improve this situation?
Learning how to transfer Mark in and out of his chair was the first answer that came to mind. It took two aids to do that. Could I learn to do it by myself? I went to the hospital library and checked out a how-to-video on transferring. That night I watched it and the next morning I told Sharon I wanted to learn how to transfer Mark. She demonstrated how she positioned her feet in front of Mark’s, pressing her knees on his legs. Her arms stretched over his shoulders with her hands reached under his arms. Using her body leverage she pulled him forward and up towards the chair and then set him down gently. I felt confident and anxious to try it, so I did and to my relief, I didn’t drop him. From then on we no longer had to wait for the aides to help Mark, which made us one step closer to getting him home.
This quote reminds me of Evey. Her great attitude is so inspiring. I believe it’s the driving force which helps her accomplish the things she does. She lives with a rod along her spine that has to be expanded every couple of months. Every movement must be difficult and uncomfortable. Yet she smiles and is not a complainer. She’s happy and enjoyable to be around. Thank you, Evey, for the lessons you teach me. One of my favorites is the one I used for the Thought for Today: “The only disability in life is a bad attitude.”
Cally Johnson recently shared on Facebook this picture of Evey’s MAGEC rods along with this comment: “This helps me keep perspective on what I think my real problems are. This technology will never cease to amaze me and the fact that Evey smiles and is as happy as can be makes her my personal hero.”
We can all learn from Evey’s attitude! Thanks Cally for giving me permission share.
What thoughts can you share today?
Imagine Credit: tobyamidornutrition.com
I loved the analogy in Evey’s Story Update by Cally Johnson, when she stated, “We continue to learn that our caregiving journey is a marathon and not a sprint.” The quote reminds me that often caregiving is a long run which tests endurance, rather than running full speed over a short distance. It’s easy to feel overwhelmed by the enormous responsibility. A single life is busy enough, but add the care of another person and you may be dashing at full speed to doctor’s appointments, therapy and taking care of whatever other necessities they may have. How do we take care of all these responsibilities without exhaustion?
A few ideas I’ve come up with while thinking of Cally and Nate’s caregiving example:
What other tips do you have for the daily or weekly scurry to the finish line?
Cally and Nate Johnson are neighbors and good friends of ours. They are excellent caregivers to all four children while their youngest daughter, Evey, has an extremely rare genetic disorder known as Koolen-de Vries Syndrome. Their example gives me strength and encourages me to do better. I’m inspired by them and appreciate their friendship. Our circumstances are completely different, but we share the same concern, love and responsibility for another individual with special needs. Cally was my first guest author on October 27, 2013 and she updated us on Evey’s Story on July 20, 2014. I hope they will continue to give us updates every few months. Evey’s progression is astounding.
Special needs children, and adults for that matter, are simply amazing! Their drive to survive and their determination to accomplish things which we do with little effort or thought motivates me to be more grateful for my health, strength and abilities.
Caregivers are wonderful and the ones they care for wouldn’t do nearly as well without their love and support. The tenderness I see and feel between a caregiver and the person with special needs uplifts me. Cally and Evey’s love for one another is so evident. Watch the videos below and you’ll see and feel it too.
Written by Cally Johnson
Since we last updated on Evey, we have had several exciting developments. As we’ve previously mentioned, Evey’s scoliosis requires her to have two titanium rods in her back that have to be surgically expanded every few months. However, just recently the FDA finally approved a magnetic titanium rod that would allow them to grow Evey’s spine without surgery. Last November the doctors switched out Evey’s old titanium rods with the new magnetic rods and now she’s able to get them expanded above the skin with a 30 second procedure in-office. She’s one of the first 100 people to receive this device in the United States and is participating in many research studies because of this. It is quite an exciting time and we are so grateful for modern technology which has enabled us to avoid frequent surgeries.
Video of Evey at her first magnetic expansion with the MAGEC rods. It was incredible. Instead of surgery every few months, we go into the office every 2 months for this simple expansion. This is life changing for us. The only bad news is her left rod is slipping/migrating off her rib and will likely need to be replaced surgically within the year. For now, she was lengthened almost a centimeter. We are so humbled and grateful for the amazing doctors and modern technology that saved our daughter’s life.
Because of fewer surgeries, Evey has been able to progress more and has learned to stand and take a few steps on her own. This has been such an exciting time for us because several doctors were not even sure if she’d ever walk on her own. It has been our goal since day one to have Evey walking before her 3rd birthday, which is May 31st.
We are so proud of all she has accomplished and continue to learn that our caregiving journey is a Marathon and not a Sprint. There continue to be highs and lows and battles to fight, but we’re feeling more seasoned and continue to be in awe at all of the goodness that surround us. There continues to be people that reach out and serve and bless us with their examples. We have learned to love and appreciate the marathon and are so grateful for all Evey has taught us. We look forward to the many lessons and blessings that will continue to come our way on Evey’s journey.
Thank you Cally for giving us an update! We are happy for Evey and your family.
Listening involves more than the use of our ears. Listening with our mind our thoughts are focused. Listening with our eyes we see their emotion. Listening with the touch of our hands show that we care. Listening with a facial expression such as a nod, smile or frown gives feedback. Listening with our heart helps us understand feelings. Having someone who cares enough to listen fully and understand you is appreciated more than one who is anxious to give advice. People don’t always need advice, but they just might ask for it after we’ve shown that we truly care by listening with more than our ears.
What are your thoughts about a good understanding?
Some days are just plain sad, leaving us feeling lonely and discouraged. On days like this it may be hard to remember that others understand the heartache we are going through. Although no two lives are the same and our experiences are all different, if we love and live we will feel pain, disappointment, despair, and distress.
This past week I’ve had a few of examples where this became evident to me. One of my special nieces wrote this and she has given me permission to share.
“I doubt there is any greater horror than being woken up in the early hours of the morning by a frantic husband yelling at you to call 911 while holding up a lifeless baby…
Two of the most common things people said to me when my baby doll passed away were, ‘The pain will fade with time’ and ‘The pain will never go away, it will always hurt’. Two very contradicting statements, but both are pretty accurate. I didn’t like either option. I didn’t want the pain to go away, but I didn’t want to feel it either.
Photo credit, Lisa Nell, 2015
Seventeen years ago today I lived that horror. Seventeen years later the pain is real, and I don’t think it hurts any less than it did that day. Time has healed my emotional wounds. I have had many blessings and many heartaches and I am grateful for all of it. To wish that horror had not happened would be to wish I hadn’t had the chance to have her be a part of my life. I will take the pain if it means I get to experience true joy. This day is always filled with mixed emotions for me. My heart was ripped from my chest, but I was taught a valuable lesson in life, love, and gratitude.”
I have never experienced the death of a child, but I do relate to “The pain will fade with time” and “The pain will never go away, it will always hurt”. I often feel both of those contradicting statements about my own life experience along with, “My heart was ripped from my chest, but I was taught a valuable lesson in life, love and gratitude.” I love you, Lisa, and appreciate you sharing your grief and happiness with us.
I have a cousin who had surgery for a brain aneurysm a few weeks ago. He has been in my thoughts and prayers constantly. His progress has been a way too familiar roller coaster ride. Last Friday, Mark and I went to see him in ICU. I wasn’t even sure they would let us in, but I had to try. I was in hopes to at least see his wife, who greeted us with a big hug.
“I’ve thought about you often since this happened,” she said. “I hate that you had to go through all this at such a young age and with small children.”
With tears in my eyes because I knew somewhat about the pain and anguish she was experiencing and knew she felt some of mine, I said, “And I hate that you have to go through this now. You are continuously in my thoughts and prayers.”
Our hearts were knitted together as our understanding of one another grew to an authentic level. This event made me appreciate how much God, family and friends help us get through the hard knocks in life. The blessing we receive from our grief is the realization that even though the incident which causes the sorrows may be different, the anguish felt is very similar. As we work through it and heal, we can more fully lift and support one another by sharing the load. True empathy not only lightens the pain, it makes those dark days brighter and more meaningful as we genuinely connect with one another.
In your grief and sorrow, what has helped you find the silver lining?
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