Saturday, February 13, 2010

Robin's Journey

A part of me died with my sister when she passed away. This is literally true; she had one of my kidneys. Her compassion for others, her love of family and friends, and her courage through adversity are ingrained in my memory, and provide an example of how life should be lived to its fullest.

Robin was born on September 13, 1954. She was 6 years younger that me and, as I recall, we weren’t the closest of sisters growing up. The stages of our lives didn’t mesh; when I was in high school, she was still in grade school. The years where special interests develop, grow, and become important were too separated by our age difference.

When we were young, I remember that she was a picky eater, and was skinny. I have a vision of her always being left at the dinner table when the rest of us had been excused, because she refused to eat something on her plate, usually the green beans. My brother Matt remembers that she would spread her peas out on her plate so it looked like she actually ate some.

I found an autobiography she wrote in the third grade. In that essay, she said her hobby was shell collecting. In the late 50’s to early 60’s, our family had a beach cabin where we spent time in the summers. It must have been there that she acquired her shell collecting interest.

In this third grade essay, she also stated that she was going to be a teacher, because her father was a teacher. She said she would like to teach first grade so she could help children learn to read, write and “learn numbers”. I also noticed she signed her name Robyn, with a “y”. She was making a statement even at that age.

It wasn’t until I went away to college that we became friends. It took time for both of us to grow up into our “sister” relationship.

In 1963, my father started a summer sports camp for boys that was located in the Oregon coast range. The whole family moved there each summer to work at the camp. My job was in the mess hall, helping in the kitchen, washing dishes, setting tables, and cleaning up. When I went on to college, that job was passed on to my sister and some of her friends.

Ann was one of those friends. During several of their high school summers, Ann worked in the kitchen with Robin. They were both in to sewing, and, as Ann says, “had their own sewing camp while the boys had their sports camp.” They would run down to the mess hall to set up for breakfast, help serve it, clean up, and then hurry back to their room to sew until lunchtime. She remembers they bonded as friends during those summers, sewing together, and designing pants, skirts, and jackets for the upcoming school year. Ann remembers Robin as loving and kind, compassionate and talented. She says Robin was positive about learning, and loved her family deeply. She gave friendship and gentle laughter to all she met, and saw the best in every person.

Robin graduated from high school in 1972 and attended Oregon State University to major in home economics and teaching in 1972-1973. During that time she lived in a dorm on the same floor with Ann and Susan, Ann’s roommate. The pictures of that time showed they had great camaraderie and great times together. Susan remembers Robin as a tiny and kind girl who spent dorm “down-time” in a cozy robe with enormous rollers in her hair. Susan also remembers that Robin coughed a lot during spring term that year. This was when she caught strep throat. She was treated at the college infirmary, but the strep organism was doing damage during that time, unbeknownst to anyone.

I remember Robin’s call to me during the summer after her first year at college. I was working in Portland, and living in an apartment in town. She called to ask me to come by where she was working to look at her legs. She said they were swollen and bothering her, and she wanted to know what to do. I vividly recall my shock at seeing how badly swollen her legs and feet were, and my panic of trying to decide what to do.

I called my parents, who were out at the sports camp, and they immediately returned home. This began the many hospitalizations and treatments to attempt to save her kidneys, and to combat the damage the strep organism had done. In the end, it won, and she lost the function of both kidneys, which required dialysis three times a week to keep her alive. The year was 1974. She was back at home with my parents, whose lives became totally involved in her treatment and care.

But through this trauma, she maintained the most positive outlook, and kept her eyes set on goals for the future. Her love of children kept her teaching dream alive. Her passion for sewing was her outlet for the disappointment this setback caused. She was only 20 years old; she wanted to live a full life.

By 1976, she had settled into a routine of outpatient dialysis three times a week at OHSU hospital in Portland. She got a job at Nordstroms in the shoe department, and was feeling well enough to move into an apartment with a couple of her friends from college. Susan’s memory of this time was of Robin leaving for dialysis looking wan and energy-less, and coming home with all of her color back. She also remembers her habit of eating French fries after her treatments.

In 1976, she became a special project of the dialysis nurses. They had someone they wanted her to meet. Mike was also a dialysis patient at OHSU. He had begun dialysis in 1974, from kidney failure due to a hereditary problem. He had finished his degree at Portland State University in health education, and was an administrative trainee at the Portland VA Hospital. The nurses gave Mike her phone number, and their first date was on Valentines Day.

Robin and Mike announced their engagement at their dialysis center on Dec 31, 1976. They proved love can blossom any time there are two people who want to be together. They married on September 10, 1977. Their plans included a honeymoon in Hawaii, and they made the necessary arrangements for dialysis treatments there. Their wedding was beautiful; she wore a gorgeous wedding dress that mom made with her help. The bridesmaid dresses were handmade also. I still have her wedding dress and my bridesmaid dress. Their honeymoon was delayed for a couple of weeks as they both got food poisoning, and needed to wait until they were stronger to make the trip. They made two trips to Hawaii in their married life.

Their romance made several of the local and statewide newspapers. In these articles, Mike and Robin stated they wanted to buy a house, and hoped to have children. They planned to adopt. They purchased their home in 1980, and settled into a routine of work during the day and dialysis treatments in the evenings three times a week. Robin could be found working in the garden of their new home, sewing, or volunteering at a local grade school. Mike worked full time as a medical claims insurance adjuster. They both enjoyed jogging, and exercised at home when they were not working out at the local YMCA. They said it kept them fit, and counteracted the stress that built up from dialysis.

Mike said “It’s just a state of mind – if you want to be ill and feel that way, go ahead. But if you want to look at the world each day as another little challenge, that’s the best way to do it. It’s not really a handicap. It’s something we have to do, and can’t take a vacation from.”

Some of Robin’s quotes will help you understand her courage and positive attitude:

“People expect you to be real sickly, but I don’t have time to bother with being sick. I have too much to do in this lifetime of mine.”

“We think of it (dialysis) as a part time job”.

“We have gained an appreciation of life and how precious time is. We appreciate the simpler things now”.

“Family support and setting small goals, such as running and exercising, helped me get over the initial difficulty of being on hemodialysis.”

“I can think of a lot of things that could be much worse”.

They confined vacations to weekend jaunts. Robin canned peaches, pears, and cherries. She also made and canned applesauce. She had stacks of fabric for the “next” projects and sewed many cute and fun things for bazaars and Christmas sales.

In 1984, Mike and Robin began home dialysis. They set up a room in their house with two recliner chairs, and had two dialysis machines, on loan from Good Samaritan Hospital, that were set up in front of the TV. They were among the 550 people in Oregon at that time on dialysis, with 153 of them in their own home. (The United States Renal Data System shows Oregon had 2471 people on hemodialysis with 23 of them on home dialysis by 2007.) Rose, a trained dialysis technician set up and monitored their machines, and monitored their blood pressure, and their progress. Robin’s run was 4 hours, Mikes was 6 hours. They read, napped, and watched TV or “OD’d on movies”.

Mike and Robin were determined to adopt a child, and worked with the Holt Adoption Agency. In 1985, their prayers were answered with the arrival of Nicholas, just a few months old, from South Korea. I remember being at the airport when the Holt staff arrived with several children. I also remember the brilliant smile on Robins face when Nicholas was placed in her arms; she was complete.

In 1987, she and I began discussing the option of a kidney transplant. Mike had had two previous unsuccessful transplants and was not planning to undergo another. Robin had wanted to wait until the success rate for transplants was greater than 50%. We decided to be tested for transplant compatibility. It took many months to undergo the tests needed, but we were finally told I was a compatible match for her.

We underwent the operations for the transplant on March 15, 1988. It was an intense day for our parents - two of their children were undergoing surgery at the same time. We recovered in the same room, and I remember seeing the result of my kidney working in her; the bag at her bedside was filling with urine. It made us both cry. She was on her way to a dialysis-free life. We both recovered well.

She had bouts of rejection and was on a number of anti-rejection medications. But, she no longer needed to be hooked up to a dialysis machine. That lasted for about 11 months. Her body finally did reject the transplanted kidney. To this day, I wonder if we were truly a match. She had to restart dialysis, and was planning to resume home dialysis to be with Nicholas in the evenings.

March 15, 1989, one year to the date of the transplant, Robin had a stroke while in the shower, and drowned in the bathtub. This day will be implanted on my soul for the rest of my life. The grief our family experienced was overwhelming. Mike was completely devastated. Nicholas remembers very little of his childhood with Robin, but he does remember that morning his mother died.

Nicholas stayed with my mom and dad so Mike could continue to work and have dialysis treatments, then he moved to my brother Matt, his wife Debbie, and their young daughter Natalie’s home. Mike visited Nicholas on weekends when he could, and they took trips to the zoo or the beach. Mike’s health suffered, and he passed away a year later.

One day, around the age of 5, Nicholas was playing in the sand at the beach with my parents. They had been talking about Robin and Mike. He looked up at his grandfather and said, “I wish God had a telephone.” Dad took a picture of him playing in the sand that day, and framed it with that quote. I think we all felt that way. It took the words of a child to express it so simply.

Matt and Debbie adopted Nicholas in March of 1991. By then they had added another son Drew, born in 1990. Nicholas flourished in that setting with his new family. Through their nurturing, Nicholas is now a young adult, and at age 25, has God in his heart, and talks with Him daily, without a telephone.

At the memorial service, her friend Jan summed up Robin’s recipe for life: “She took love and loyalty, mixed it thoroughly with faith. She blended it with tenderness and kindness and understanding. She added friendship and hope. Sprinkled all those with laughter. Baked it with sunshine and served a generous helping to all who knew her.”  Robin touched the lives of every person she came in contact with in her short life. Her friends admired her courage and determination, her quiet and compassionate manner, and her enthusiasm for life. Her family loved her dearly, and misses her greatly.

Copyright Parrot-Writes 2010


  1. Great job Sunshine! Thx for sharing :)

  2. That was beautiful, Linda! I'm wiping tears out of my eyes as I type. I wish I could have met Robin. xoxoxo Paula

  3. What a beautiful tribute to your sister and to your whole family!

  4. Thank you for your kind words. I am so glad I have finished this - it has been therapeutic!

  5. I'll comment when I'm done sobbing...
    This is beautiful, you have done your sister and your entire family proud. Thank you for sharing Robin's journey with us. It sounds like she's touched a lot of lives and you can add mine to the list.

  6. Thank you Dayner. Just look at what Shaddy started with her "brothers and sisters" prompt. I wanted to write this tribute for the family and especially Nicholas. It was truely an emotional "journey".

  7. PW you have touched us all with this story. Not only by the love and compassion you have shown for your family by telling your sisters story, but also by having invited us along on this journey.

    It must have taken a measured amount of strength for you to write this tribute. I'm sure it goes without saying that there were moments that stabbed at my heart.

  8. I've been walking aroung kind of lost the last two days. I wonder if that's a normal reaction after finishing something so emotional.

  9. Parrot, this is so lovely and beautiful tribute to your sister. It's very sad, but has so much and I'm glad Nicholas has a supportive and loving family.

    You should consider sending this to perhaps a kidney failure organization or something...

  10. Thanks Kathan I actually called the National Kidney Foundation, Oregon chapter, to ask for some statistics, They said I could send them 2 or 3 paragraphs. Yikes - quite a challenge, but I may try it. Thanks for reading my work of love.

  11. Let us know if it gets published!!

  12. Yes, I think it's a normal reaction to feel lost after writing something that strikes so deeply at your core. You've had to live through it again to write it, though I'm sure you do that on a daily basis.

    But I'm glad you wrote it -- for all of us. Thank you.

  13. Parrot: I just read your story about your sister, Robin. Thank you for steering me over here by your comment on my blog.

    Congratulations! Robins's Journey is going to be published! Hurray! Hurray!

    I'm very happy for you and proud to be a friend. You did a beautiful job of telling of the long, hard journey Robin and all those around here traveled so valiantly.

    You gave a part of yourself to your sister when you donated a kidney. You gifted Robin with another year of the life she so cherished. Now, via Transplant Chronicles, the beauty of her life will live on for other families who are having similar struggles.

    You truly deserve to have "Robin's Journey" published. I'm certain that Robin feels once again the never-ending love that you have displayed.

    Congratulations again,

  14. Thank you Shaddy. This was a heartfelt journey for me to delve back into my memory about this time. I know I learned what grieving is. I was so lucky to have a wonderful and supportive family.
    The editor asked me to downsize this to 800 words, so I had to delete some parts of it for the publication. But the orignial stands proudly with all its words here. Thanks again for your comments. I truely appreciate them.