Monthly Archives: November 2013
A Season to Reach Out to Others
Recently I read this post on facebook—”It’s important to remember that not everyone is surrounded by large wonderful families. Some of us have problems during the holidays and sometimes are overcome with great sadness when we remember the loved ones who are not with us. And, many people have no one to spend these times with and are besieged by loneliness. We all need caring thoughts and loving prayer right now.”
It is a good reminder— there are people who need our prayers, support and friendship. Those who have family problems, health struggles, job issues, worries of all kinds. It is always good to know that someone cares and understands. Whenever possible, reach out to those who would benefit from an invitation to dinner, or some other activity.
Every family situation is different. Some family members and friends may not even enjoy a gathering and prefer alone time — but it is important they know they are remembered and included especially around the holidays. We have all felt to some degree rejection and have been offended at times. None of us are perfect and none of us have perfect families or friends. This is the season to forgive one another.
One of my most memorable Thanksgiving’s is when I missed our extended family dinner to serve with my son at the homeless shelter. It was Christopher’s idea and I went along with it because I wanted to be supportive of his noble idea. It turned out to be a very good experience for both of us.
Nobody is immune to hardships, loneliness and grief. Let’s reach out to those around us. As we do so, our own burdens will be lightened. As we focus on giving service and sharing with others, our love and blessings grow. When we appreciate what we do have, the things we don’t become less important.
Life with Ricky
Written by, Judy Coon
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.
Your Attitude
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Think About a Thank You
Recently I received a thank you card from a friend. The card was unexpected because I hadn’t given her a gift and it wasn’t a holiday. A thank you card for a friendship we share. This card made my day and as it sits on my desk, it brings a smile to my face and reminds me daily of all the people in my life I am thankful for. Do I tell them often enough how much I love and appreciate them? Do these important individuals know how grateful I am for their friendship and their influence in my life?
I’m thinking about a “Thank You!” Is it possible to say it too much?
I have a great mother-in-law, Wanda Wilson, who I appreciate for the way she raised her son and credit her for many of Mark’s wonderful characteristics. She lives in the state of Washington, so we don’t get to see her often but we are grateful for cell phones and email which allow us to keep in contact with her. We appreciate the love and support she continues to give us.
I appreciate my cute sisters-in-law, Karen and Jerrie. Mark adores his sisters who are ten and eleven years younger. They also live in other states, but we always enjoy our visits with them. We are also grateful for their husbands, Mark Ray and Jon Stevenson. They are so fun to be with. Thank you for your love and support.
My biggest blessing is Mark. I appreciate him even more since I almost lost him twenty-two years ago in a car accident. He was a hard worker before the accident, providing for our family. After the accident he continued to work hard at getting better. Even though he can no longer do electrical work, he still works hard at ACS (Ability Choice Services) doing assembly work. I am grateful for those who assist him at ACS. Mark is a joy to live with. I am so thankful for his life, friendship, humor and the great example he is to everyone he meets. I am proud to be his wife.
I revere our children, Christopher and Katie Mae. I appreciate the wonderful, helpful adults they’ve grown into. I am also grateful for their companions, Jenn and Eldin. They are great bonus children.
I am indebted to my parents and siblings, their spouses, nieces and nephews, who do so much for us. Too many to name, but they know who they are. I know I can call on any one of them, any time, and anywhere. They are not only family but dear friends.
I am thankful for doctors and nurses, who have saved Mark’s life. I respect their knowledge and training and especially appreciate those who maintain the “care” in their healthcare profession.
I am grateful for the many rehab therapists who have increased Mark’s abilities over the past twenty-two years. I appreciate their willingness to work hard and think of creative ways to fire up the connection between Mark’s brain and muscles. They’re wonderful and I applaud their work. Because of them, Mark accomplishes amazing things.
Last but not least, I am so appreciative for friends. They support and encourage us. Many volunteer their time to help Mark with his exercises. They don’t give up on us. They lift our spirits and help us achieve great things. These friends truly feel like brothers and sisters. We are so grateful for all they do for us.
I can’t imagine life being joyful or fulfilling without family and friends, and we wouldn’t have much of a life without the professional caregivers that assist us in our health. All are angels among us and help us get through the tough times. I’m so grateful to you all!
Pamela Clark’s Story
Written by, Pamela Clark
I don’t remember an earthshaking feeling with the diagnosis on our sweet boy. Instead, I vaguely remember his orthopedic surgeon telling us once when he was two or three years old that he had Cerebral Palsy with right sided hemiplegia. I remember thinking, “oh that’s what it’s called, I’ll have to remember that when people ask me.” It wasn’t something that defined him — just a way to explain his condition to those who asked.
However, I will never forget the day they told us about his brain hemorrhage. It was the same day they told us he would not make it and if he did he would have no quality of life, and would be a major inconvenience to our family. And on that same day they encouraged us and even pressured us to make the decision to take him off the ventilator. From that day on, we never expected much from him. Instead we gave him everything we had, increased our faith, and fought to gain hope as well as an eternal perspective.
On December 21, 2003, at 27 weeks, Stephen (named Bindy by his brother Carter) was the first born of four babies, weighing 2 lbs. 4 oz. Next, Abigail at 2 lbs., Carter at 1 lb. 15 oz. and Dillon 1 lb. 12 oz. All of the babies had a lot of problems, but we could not have been more thrilled to have our new family!
Bindy started with so little possibilities. Because of the hemorrhage, he developed hydrocephalus, requiring a shunt to divert his cerebral spinal fluid (CSF) off of his brain to keep it from accumulating and causing pressure that’s life threatening. We were constantly amazed and proud of every tiny milestone he made.
In my early twenties I worked at Primary Children’s Hospital in the Emergency Department. Ironically, I remember telling my mom, “Give me anything but a kid with a shunt. Shunts terrify me and I feel so sorry for those families who have to deal with them.”
Shunts are unpredictable. That’s what terrified me the most. I’ve always been a planner, a list maker, and never liked to be surprised. Prior to Bindy getting his first shunt, I had a conversation with Dr. Walker, the head Neurosurgeon, and asked him if there would be any possible way to avoid a shunt. He explained that they had been using an exterior ventricular drain and if the hydrocephalus could self-resolve and drain on its own, he might not need one. As it turned out his production of CSF was more than his body could naturally drain and absorb. The need for a shunt was unavoidable. As I had nervously anticipated, the shunt and the many thereafter have given us quite a wild ride.
What I would gain from being the caregiver/mother of a sweet angel boy with a shunt would be the very thing I needed in my life. I have benefited in unimaginable ways from the accelerated course I’ve been on learning empathy, compassion, forgiveness, faith, hope and absolute pure, unconditional love. Not only have I been blessed to learn these lessons, there are others in our lives who have shared our journey — they too have been blessed greatly. His sister, Abby, and brothers, Dillon and Carter, love him with all of their hearts. They’ve always felt he’s an extension of them being multiples and have also learned to put their own wants and needs aside as they help their brother.
As a family, we’re dedicated to a life of service to our angel boy, as long as we’re allowed. He is completely perfect and has taught us to be more like him. Our commitment to him has only increased through the years of many surgeries and complications.
On August 28, 2013, we were told by the neurosurgeons after six shunt revisions within a four month period that we had run out of options. Currently he is left with only high risk, exotic shunt placements, including where it is now with the shunt in the plural area in his chest. His little body is so scarred up, it is unable to absorb the CSF any longer.
Our commitment to our angel boy continues, however the course and goals have changed. Instead of focusing on rehab and pushing him to do more, we have started to focus on making him comfortable and happy. Making memories and preserving them through pictures and videos.
I’m honored to have been chosen to stand by my sweet angels’ side through this life and we’ll miss him dearly when he’s gone. I cherish every moment we have with him and gladly continue to serve. There was never a time I said, “why us?” Of course, there were times we’ve prayed for a break—nobody deserves to watch a child suffer. But, we’re always grateful to have Bindy. He is a huge part of our family.
Thank you Pamela for sharing your inspirational story.
Christopher Reeves Hero Description
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Celebrate Life
November 12, 1955 a wonderful woman brought a sweet baby boy into this world and made it a better place. HAPPY BIRTHDAY MARK WILSON!
He’s so: Adorable, Bright, Courageous, Daring, Ethical, Fun, Gentle, Humorous, Inventive, Joyful, Kind, Loving, Miraculous, Notable, Original, Positive, Quotable, Righteous, Silly, Terrific, Unified, Valiant, Wonderful, Xtraordinary, Youthful, Zany.
Thank you, Wanda Wilson, for this special person. We’re grateful for the care and love given, and regret so many miles are between us. We love and appreciate all you do.
My Mentor
Mark and I bought our first home in March 1981 located in Sandy, Utah. It was friendly neighborhood and we felt welcomed immediately. We lived in that home for sixteen years and still keep in touch with many of our friends there. Today, I’m writing about two who influenced our lives greatly.
I don’t remember the first time I met Kay or Nolan Ellett, because they had lived in the neighborhood for many years before we moved there and they were several years older than we were. They had two boys, Jr and Bobby. At first, it didn’t seem we had much in common, but we went to the same church and I knew they were a happy and friendly family.
Mark and Nolan were both electricians by trade and had been employed by Arco Electric, however not at the same time. They had many co-workers and friends in common. Nolan joined the union and was working for Wasatch Electric. While on the job-site, one day in March, 1986, Nolan moved a board he didn’t realize was covering a hole and stepped into it, falling fifteen feet. That was the first I’d ever heard of a traumatic brain injury.
Nolan was in a coma for a few months. He was first taken to Holy Cross and then to the University of Utah Hospital. In June he was flown to a rehab center in California that specialized in head trauma. Nolan was there for six months, while Kay lived in their trailer close to the rehab center. Jr had just graduated from high school and drove Bobby as often as school and work would permit, to visit their parents in California. Kay and Nolan were back home just in time for Christmas in 1986.
Kay took Nolan everywhere. I’d see them at the grocery store, at church and all the neighborhood social events. Nolan was wheelchair dependent and had little use of his hands. Kay pushed him wherever they went and had to feed him. Nolan rarely spoke, but Kay understood his needs, they had their own way of communicating. Love radiated between them.
I admired Kay’s strength, dedication, perseverance and positive attitude. She always wore a smile. I often thought, I could never be like Kay or do what she does. As much as I respected Kay and Nolan, I felt awkward around them. They were different and I didn’t know what to say or how to act. I would acknowledge them but my interactions were brief because I was uncomfortable . . . before our accident.
After our car accident . . . five years later, Kay became my hero, and mentor. She knew everything I was feeling: my fears, frustrations, worries and hardships. And now, I understood hers and we had everything in common. Kay and Nolan visited us often in the hospital and rehab center. I visited them in their home, learning what I would need to do before bringing Mark home. She called me often to encourage and to listen. She was wise, compassionate and empathetic to our situation. She always knew just what to say.
Kay took care of Nolan with the support of her two boys for fourteen years, until the day she died of cancer in the year 2000. She was only fifty-three. I was devastated – not only for me, but for Nolan and their family.
It seemed so unfair – until Nolan joined Kay in death five months later. I’m sure those were the longest days of Nolan’s life. Their love was enduring, unconditional and so inspiring. I often imagine how jubilant their reunion was and the joy they feel now – free from physical pain and limitations.
Never in my wildest dreams did I imagine I’d be a caregiver – as Kay was. But since I am one, I try to be a caregiver – exactly as Kay was. I will be forever grateful for her example.