Carl the Kidney Donation and the unification of two families

It is with pleasure that I introduce my guest blogger and my dear Mom, Leslie Dewald. She has agreed to share what I believe to be a very important journey. Please, take some time to visit, The Kidney Foundation of Canada. I have witnessed and been a part of the journey and have seen first hand how our families lives can change because of a living donor, my Mom. 

I can often be critical of our medical system but I am the first to say that in this situation the care was above and beyond what I could have imagined. I am grateful to the team of medical professionals for the care that they gave to my Mom, to Dale and to our families. I learned so much from the medical team and was never left unsure of my Mom's care or medical situation.  I hope that this blog will help us continue what is a very important conversation around living donors in Canada. Imagine a world where we donate our beautiful organs to one another as though we would to our closest family. After all, are we not all family when we get right down to it?

My Kidney Journey

My journey began in November 2013 during a pleasant  conversation with Lesley Parker. The Parker’s, Lesley and Tom are a wonderful couple that I got to know through my mother. They lived in the same condominium complex as mom and would drive her to church. Mom’s health was deteriorating quickly and Lesley was my eyes and ears when I could not be there. She would often take dinner down to mom and was always so kind and compassionate. As time went on she became my sounding board and my shoulder to cry on as my mom’s time on earth was slipping away. I felt as though I had known the Parker’s for years.

We decided to move mom into a seniors home as she was no longer able to care for herself. This was a stressful time but as I think back on it I am reminded of a funny story. Mom had lost her licence and we had taken her keys away. She was a clever and resourceful old gal and she found a spare set of keys and continued to drive unbeknownst to us. It was Lesley who caught her one day coming back from Safeway and made the call to me that, “Mary was still driving”. Needless to say the next move was to get the car sold, much to my mother’s chagrin. Lesley always had my Mom's best interests at heart. She watched over her when I could not be there. Her little driving escapade confirmed that we needed to move her. We decided that it was time to sell her condo. As though it were fate the Parker’s shared that they loved her place and Lesley and I agreed on a deal over the phone so that they could buy it…we referred to it as a “gentlewoman’s agreement”. 

As Mom's heath deteriorated, The Parker’s grew in my heart and soul, the more I got to know them the more I loved them. Mom passed away on August 19, 2013. Following her passing Lesley and I kept in touch with phone calls. As we chatted about family and life last November she mentioned that her son Dale was now back on the transplant list as another potential donor had been disqualified. Dale has had kidney disease for almost fifteen years and been on dialysis for two years. Dale is a single father raising two children, working full time and going to dialysis three times a week for five hours each visit. I asked Lesley what his blood type was and she replied it was O; same as mine. It was if a locked door just blew open in my face. I almost said, “I have a kidney for him” thank goodness common sense prevailed. The thought would not leave my mind, it was persistent…but now what? I spoke to both Laurie and Eryn about how I felt. They advised that this was a huge decision and to give it very careful thought. 

My reasons were many; I’m doing this for a family that matters to me; I’m doing this because as a mother I can only imagine the pain to watch your child suffer like this; I’m doing this because my mother died of kidney failure and I’m doing this because it was truly meant to be. I knew beyond a shadow of a doubt that I was the person to give Dale Parker a kidney. I firmly believe that Dale and I knew each other and made this arrangement a long time ago…in another existence. The next step was to approach the Parker’s with my intentions. I called Lesley and told her what I wanted to do and why. To say she was shocked would be an understatement but she would make the initial call to The Living Donor Program to find out what needed to happen next. 

Thus began my journey starting with pages and pages of questions. I kept track of all of my questions and had a chance to ask them when I met with the Living Donor team. I met the surgeon, the social worker and Teresa, coordinator of the team. The testing was time consuming and very extensive and at times somewhat painful. My goodness they knew me inside out and upside down. It is for sure the best medical I have had and will ever have. Bottom line is I’m one healthy old gal. It was about half way through the testing that Dale and I first spoke. I imagine he was somewhat sceptical, he didn't know me and had been disappointed many times before. We met for lunch and I immediately felt comfortable with him. Dale calls it like it is, he can be blunt and doesn't candy coat anything. He’s tough but I think that is how he has survived what life has thrown his way. 

Finally, after months and months of testing it was approved, we were a match! Surgery was booked for December 18, 2014.

I had the final donor match and blood tests done about a week before just to confirm all was as it should be. Teresa asked me how I was feeling and I had to admit that there was some sadness. I felt that I was saying goodbye to a good friend…my left kidney. It had treated me well for 61 years and now it was going to a “new home". I was not concerned for myself, my biggest concern was for Dale and what if the kidney didn't work? My kidney affectionately became known as “Carl", a name I had given a sock monkey that the girls gave me for good luck. 

It is hard to explain the anticipation that overcomes the body and mind as you wait for a surgery like this. It is quite surreal. Eryn drove me to the hospital on the 17th  but first we stopped at the Parker’s for an LDS Priesthood blessing. I believe all prayer is good and I’ll take all I can get. I had much support from family and friends and I never second guessed my decision. 

When I met Dale at the hospital he handed me a gift, it was a lovely energy light and crystal snowflake. The light continues to burn 24hrs a day in my window to remind me of my journey. The crystal snowflake hangs in my kitchen, it will forever be with me.

The morning of the 18th the girls arrived at 6:55am to ride with me to the surgical waiting area. We met the surgeons and the nurses, I was asked several times if this was what I wanted to do. Dale was brought in and his bed placed beside mine. We were both calm as we knew from here on in we were in the hands of this amazing medical team and whatever higher power we each believed in. We got an excellent picture of us both just minutes before I was rolled away. I remember grabbing Dale’s foot as I went by, it was a good luck squeeze.

Laurie and Eryn said they both started to cry as they left the room. They said it was a helpless feeling waiting for someone you love in surgery. The only thing they could do was wait. At 11:45 the surgeon called Eryn to say “she is out of surgery and everything went well”. Eryn asked about Dale and the surgeon said he was still in surgery but he thought it was going well. The surgeon said the next 24 hours are critical but he assured Eryn that in all the surgeries he’d done there had never been a serious issue post op for the donor.

Laurie and Eryn arrived at the hospital to find Lesley and Tina, Dale’s friend waiting in the hall. They wanted to know how I was doing and the best news was the kidney was working for Dale!  The girls saw me on a stretcher in the hallway and the girls leaned over my bed and said, “Mom, it’s working…his new kidney is working”. I was heavily sedated but I’ll never forget those words, all I could do was cry. This is what it was all about and it was music to my ears. I took a deep breath and said, “that’s all I’ve been thinking about”. Later Dale told me that the surgeons said the kidney was trying to work before they had it completely hooked up…now that’s one dedicated little kidney!

I remember my shoulder hurting so much after the surgery,  it felt like hot daggers. Apparently that is the side effect of the carbon dioxide that they use to fill the abdominal cavity during surgery. Some ice packs and good drugs took care of that little issue.

Lesley and Tom came into the room to say Dale was out of recovery and doing well. Eryn said the expression on their faces was unlike anything she had seen before. There was relief, joy and just pure love. As Eryn was heading out of the unit that evening she bumped into Dale’s brother, Adam in the elevator. Adam had tears in his eyes and said to her, “I do not have the words to thank your Mom and your family for what she has done for our family. We will forever be connected to your family”.

Later that evening Lesley came in to visit me and said, “I gave him his first chance at life and you gave him his second”. From one mother to another mother, I so understand. I felt my mother’s support and love throughout this entire process. It was she who was encouraging and pushing me forward to complete this journey. Without her this never would have been part of my history.

My grand kids had all done wonderful art pieces that I had hanging on my wall in the hospital. I would look at them constantly and I felt so much love and support from those little kids.

I received beautiful flowers from the Parkers and lovely cards from my friends, it all mattered. My little granddaughter Lara asked her Mom “how do they clean the kidney?”. Kids are amazing for their honesty  and untainted view of the world. A couple of days later I had the privilege of meeting Taylor, Dale’s daughter. She popped her little head around the corner of my hospital room. She had a darling Christmas sweater on and a ribbon in her hair, she stood quietly in the doorway just looking at us. She slowly made her way into the room and then said, “I’m Dale’s daughter and I wanted to tell you how grateful I am. This will change our lives forever”. Moments later Lesley and Michael, Dale’s son came in. Michael looked at me and said, “thank you for what you have done”. Eryn said she cannot imagine what those kids have been though. She said it was hard to watch me in the hospital but this was only a few days and I would get better. Those kids have watched their dad’s health deteriorate and have seen him go to dialysis three times a week for hours each time; then come home completely exhausted with no end in sight, and continue to work full time and parent full time. The next day Taylor brought me a beautiful scarf that she had knit for me and a wonderful letter. She expressed her appreciation and her relief now that her dad has a new lease on life. I will forever cherish the scarf and the letter from that dear little girl.

I was released from the hospital on the Monday three days before Christmas. I left there and came home with Claire and Lindsey to care for me for a couple of days. They were a great help making me little plates of food and tea. I’m one lucky Nan to have grandkids like that. Well, this is my story, from the beginning that November day in 2013 to the final gifting of my kidney in December 2014 to this man and his very special family. 

-Leslie 

It's my opinion and I am entitled to it…or am I?

I sent this article to a friend of mine today after a long and fabulous discussion about our society and this need to steer clear of  'controversial topics'. My friend, to be fair to her I will call her Sue, was recently with a group of colleagues after work having drinks when the discussion turned to the leadership race within with the Alberta PC party. One of her colleagues said, yeah I am staying out of this one, you know how Joe gets when we disagree with his political point of view.  Sue was disappointed that a group of professional adults would not have a discussion about politics. Sue and I talk politics all the time, we talk about pretty much anything and often disagree but we always enjoy our conversations and sometimes we even learn a thing or two from each other (mostly me learning from her!). She asked me why I thought people behaved like this, Sue asked me if this was a Canadian thing, Sue is from the States.

Maybe it is a Canadian thing but really I think it is a human nature thing or rather deficit. We like to be right and somewhere along the line (school and parents drop the ball here?)we are taught that we are all entitled to our opinions. We are often not taught or we don't learn that our opinions should be informed and based on thought, facts and maybe, even some controversial discussions. This led Sue and I to a conversation about emotional maturity and how this interacts with how people respond to political/controversial/sensitive topics and how we in turn react to people when they become heated/defensive around the 'fierce conversation' at hand. Sue said to me, "some people are just unkind and self absorbed". Yes, indeed some people are just unkind and sadly too many are self absorbed but more likely I think they are probably dealing with their own stuff and just trying to make it through the best they know how and I think most people are truly scared of having their opinions challenged. Far too many people just do not seem to have the tools or skills to really think about their own thinking and to think about why they say what they say, what they believe and the things they do or don't do. For our democracy to function as a democracy isn't it essential that we share our informed thinking and that we seek to understand where others are coming from?

I think the greatest gift we can give our children is to teach them to engage in thoughtful, compassionate and wise conversations. Challenge them when they say, "but I feel this way because, or I think this because" or the favourite one, "I can think what I want". Our kids don't get enough practice engaging in thoughtful and informed discussion; discussion that even if it gets heated will remain respectful and will end with people being heard particularly when there is not agreement. I love this quote by Harlan Ellison, “You are not entitled to your opinion. You are entitled to your informed opinion. No one is entitled to be ignorant.” 

To the Moms who need a little strength tonight—you are thought of and loved

Mother's Day is one of my favourite days of the year. I love the hand made gifts created by my kids; the gifts are scattered throughout my home hanging on my walls and placed on my desk, grounding me in memories and love. These treasures nourish my soul when it feels a little depleted.  I am blessed and tomorrow I get to celebrate how fortunate I am to be a mother to four amazing young people. What a joy and privilege it is to be a part of their journey on this earth. 

I love mother's day because I get to celebrate my mother and there is much to celebrate and be thankful for. I celebrate her for her strength and for her constant striving. It is only now, as a Mom myself that I appreciate the strength that she found after losing our Dad and having three little ones to raise, on her own. I think about you Mom as I tuck my six year old in tonight and I snuggle next to him and appreciate that his little world is pretty perfect right now. I was only six when Dad died and my world changed forever. So much of what is shared between two parents was forever placed in your two hands and you have carried the weight so well Mom; I can only imagine how heavy the load was at times. I now understand the sadness and fear that you must have felt and yet you got up every morning and made it through each day with us. Thank you. 

Tonight I think about the Mom's who are tucking a blanket snuggly around a wee one and as they wrap their arms around them they wonder if there will be enough food on the table tomorrow morning or if they will have enough money to pay for the school field trip that everyone is going on. I think of the Mom whose child is ill—the pain and the fear that must run through your veins when your baby is sick and you cannot heal them, it makes my heart ache. I wonder how you do it? Your little ones feel such love and strength even if you feel as though you cannot do it anymore. 

Tonight as I lay with my son I think of these Mom's and hope that you all know that you are appreciated. Your children will be strong and resilient because you strive and learn from each failure and each set back. Your children will appreciate what it means to work hard and care for others because they see you work two jobs and they know what it means to save and to appreciate every dollar earned. Your children will give back to their community because they see you volunteer and they know that you are loved by others for your heart work and not for the money that others flash around. You are loved and you are helping to nurture and build a stronger, more compassionate society. 

Thank you to the Moms who try to lighten the load for another Mom who may be struggling. Thank you for choosing not to judge but to love and offer an ear and compassion. YOU do make a difference and you are loved. 

Happy Mother's Day~ 

Have a heart that never hardens, and a temper that never tires, and a touch that never hurts." ~~Charles Dickens

My Millennial Baby

My Millennial Baby

Thirteen years ago, a little bundle of hope, joy and sweetness entered my life. I remember holding you in my arms and feeling more love than I could ever have thought possible. Today, Friday December 13, 2013 you turn 13 years old and I look at you and feel a new kind of love. My love for you has grown so deep over these past thirteen years as I have watched you blossom into this beautiful young lady. I remember September 11, 2001, you were sitting in your high chair as I fed you apple sauce. The images on the tv of planes crashing into the towers as I slipped a spoonful of apple sauce into your little mouth are still scorched in my memory. I remember the conversations at gatherings of war and weapons of mass destruction as you played with toys at my feet. You were so small yet already had such huge responsibility resting on your shoulders. You entered this beautiful world, at the right time, this I am most certain. I remember writing a journal entry after 911, the topics; questions and curiosity. There were so many good people asking thoughtful questions about the why’s and the what’s next and the bigger picture of 911, war, conflict and peace keeping. How could I, a novice, a new Mom ensure that I fostered a sense of wonder, curiosity, reflection and compassion in you? How would I protect you and teach you to think of others, be humble, learn from failure, take risks, dream big and always, always strive. 

I know now, that you my dear girl, you came with these qualities. I have, and I will always do my very best to nurture all of the beauty, talent and love that I see so abundant in you. It is you however who teaches me how to be more compassionate, how to LOL without care, how to dance to music that just begs you to move and how to listen more than I talk. You remind me daily by your own resilience and your humble nature that when I fail, which as a parent I do often, I must get right back out there! You show me, daily, with your hugs at night and smiles when you walk through the door, that your love is unconditional. I want all children and all people to feel such love.  

In the last thirteen years we have seen war’s, natural and man made disasters, political embarrassment in our own Country and many, many others. In thirteen years we have also seen a revolutionary wave of protests, demonstrations and people who have shown us that votes and voices DO count. You my dear child were born at exactly the right time. You bring what this world so desperately needs more of; compassion, love, reflection, wise and sober thought and a true belief that we are all one on this big beautiful earth.  

So on this very special Friday, the thirteenth of December, 2013 I wish you the happiest of birthday’s and I thank you for being who you are. 

Be brave, be fierce, be compassionate, learn from failure, laugh daily,  and be kind to yourself because YOU are one special young lady!

With love and admiration always, 

Mom

Where a book can lead you...

It has been a little over a month since we proudly painted and opened the 'door' to our free little library. We named it Winifred, to honour my Gram who passed away this August. She loved books, stories, theatre and her community. I know she would have loved our little library.

We all love to read in this family; Sandra Boynton, Dr. Seuss, Margaret Atwood, Chris Hedges, ah and my sons favorite, Mr. Robert Munsch and Alligator Baby (I may slip that one in the library, sigh!). The real excitement for this library is the chance to share our love of reading with our community and to have them share their love of reading with us. As soon as it was up I was snapping pictures, tweeting, face-booking and doing everything I could to spread the word. We have neighbours coming by the house to see the library and to drop off books. We met people who live only 6 doors down and yet we had never met until now, we have been here eight years.  A few days ago I came home to find a young girl, about 10 looking through the library. She looked disapoointed. I got out of my car and walked over to her as she was walking away. "Hey, did you find a book", she turned and walked back towards me "no, there was nothing new this week but I will check again in a few days". I learned that she comes every week, usually on a Friday. Sometimes she leaves a book, one that she has journeyed through already and wants to leave for another to enjoy and sometimes she just likes to see what new books have arrived. She even knows how many books are there! 

In late August I bumped into one of my neighbours and she asked me if I felt a free little library was really needed in a neighbourhood like ours. I was speechless. She continued, "don't get me wrong I think it's adorable but do you really think it is needed in a community like Sundance? I wouldn't think kids here need free books".  I was saddened by her comments and assumptions. There is no wrong or right community to share books and to encourage a place where people can gather. This little library has warmed my heart and has helped me connect with my community. 

This little library has done so much more than simply provide a place to share books. It has reinvigorated my love for this community, one that I distanced myself from for some time. Who knows, maybe the neighbour who was a little dubious about Winifred might even take a peak and share a story with me. I am hopeful. 

 "we read to know we are not alone"C.S. Lewis

A room with a view

I lay back on the lazy boy chair next to Gram, with my hand on hers and close my eyes. The chair leans  all the way back and I position it to the same height as Gram's bed, right next to me. I can hear the creek outside of her window, it is peaceful and reassuring. I imagine that it flows beyond where I or anyone on this earth can see, perhaps a path for Gram and others.  Up until a few days ago, Gram would look outside and say, "it's so still, nothing is moving, it's so still". Often there was a breeze and I could see the tall grass in the fields outside swaying gently and the daisies and potentilla would quietly dance with the breeze; to her it was still.  On a clear day if I look west I can see the mountains. It is breathtakingly beautiful. I cannot imagine a more lovely place to transition from this world to beyond. 

It has been a week since Gram was moved here. When we arrived at the hospice the nurse got us all settled and smiled at Gram and said, "welcome home".  For a few days Gram had enough energy to drink a small smoothie in a day and to stay awake long enough to have a conversation. She would smile at the little kids when we brought them in for a visit and then drift back to sleep. With the help of the nurses we could move her into a wheel chair and take her for a walk outside making our way around the creek and through the garden,  we could even sneak a raspberry or saskatoon berry for her. The past two days have left her still, like the stillness she sees outside. She cannot drink anymore and has no energy to open her eyes. She knows we are here, I know that she knows. 

Her breathing has changed, it is heavy and slow. Her color is gone, I have not seen anyone so pale. I notice that her eyes are unable to close completely now. For the past week we have managed to have her off all drugs, she needed nothing but our company, some water and a few sips of smoothie. Over  the past few days we have watched as she grimaces when she is moved, her slight body no longer able to handle this without a little pain relief. The nurses here are tender and caring. They brush her hair, hold her hand and treat her with such kindness. She has said many times this week, "I am fortunate". Today it is I who feels fortunate. The past few weeks, sitting with her has brought my family closer than I could have imagined. We have held each other while the other cries and then switched over, allowing the other to be strong while we each take our turn to feel and to let go. I have had conversations with my mother that I don't know if we would ever have had if not for this time together. I have laughed and cried with my sister as we remember our funny Gram stories. I have watched, first hand, a little frail 87 year old woman fight to stay alive. Her will has amazed even the medical staff. 

I have wondered over the past two days, why are you holding on Gram? Your body is shutting down but still you hang on. Today however I see her surrender. I know that we don't have long before she follows the creeks path beyond. I look out her window today and smile at her room with a view. One of Gram's favourite movies was, A room with a view. My mother and Aunt watched it years ago at Gram's recommendation and said they could hardly stay awake! Now it's my turn.

It is difficult for us to surrender and realize that we cannot control everything. We cannot set a time or predict how the story will end. It seems to go against all that this busy non stop world we live in has taught us. This journey is one that only she can control and maybe not even her? So tonight I have the movie ready to go on my laptop and I will snuggle up beside her and imagine us in Italy and England, along side Lucy Honeychurch. I let go of all expectations, worries and sadness and just be and enjoy our room with a view. 

my hand for your journey...

I don’t know that we can ever really prepare for watching and being with a loved one as they die. I have lost loved ones in my life; my Dad died when I was six, three months later his mother, my Grandma, died. There have been many to go since then but with each passing it brings a different experience; and it seems the older we get the harder it us for us to watch. Perhaps that is only our own mortality and selfishness coming in to play? 

My Gram is leaving this world now in no pain and is at home, surrounded by family and friends and wrapped in love. She is 87 years old and has lead a full and fascinating life. She is one of the strongest women I know. I have never heard the word regret leave her mouth. She has lived with intention, meaning, kindness and joy. She was a life long learner. Gram was an RN and up until a month ago or so she would tell you she still was a nurse (that was before she'd tell you to bugger off and stop tending to her); and, I love this one, she became a fitness instructor in her fifties! She used to drag us to her classes and we couldn't keep up! She is a mother, a wife, a sister, a friend and our Gram. 

I remember all of the joy and know she is in no pain, yet tonight,  I feel such sadness and helplessness as I sit at her bedside. 

My Mom called four days ago and with a shaky voice said, “I think her time is coming Eryn, things are changing”. I arrived at Gram’s care home the next day to find her curled up in her bed, looking more pale than I had ever seen and so very fragile; I was hesitant when I bent down to hug her afraid I may literally break her but so wanting to just touch her. She weighs about 90lbs now and her skin is changing by the day. Her cheeks have begun to cave in and her eyes droop when they are open. 

Doctors and staff have been preparing us for this for many months. Gram is in stage five kidney failure and we knew this day would come. Her body is shutting down. Her blood pressure is down to 75/30 at times, she drinks very little, eats nothing and has not been out of bed in four days other than to go to the bathroom. Now, that is a wonder to watch. She can barley move in bed and is asleep most of the time but still has this will and determination to get up and go to the bathroom on her own. My Mom and I tried to get her to use her walker yesterday to help with the short distance to the bathroom (about 6 feet from her room) and she pushed it away saying “oh fiddleydee to that”! Why would I think that her independence and stubbornness would change now?

We had hoped to have a palliative caregiver here with us for these last days but alas, there are no staff to be found due to ‘cuts’ and this being a long weekend. Strangely, I am grateful for that right now as our family takes shifts and I am here with her, maybe the way it is meant to be right now. The staff here at her supportive care home have been empathetic, compassionate, knowledgeable and truly outstanding. They have honoured our wish to keep her here in what has become her home since January and a place she now loves and feels comfortable and safe in. Pictures of her family surround her and she rests in her own bed, with a blue blanket with pink ties, made by my Great Grandma, gently around her little body, wrapping her in memories and love. 

The RN has been up to sit with us and tell us what to expect and sure enough, we now watch it happen. It is not her dying that has me feeling such heaviness in my heart tonight, I know it is her time and I know she is ok. It is this helplessness that I feel as I watch her. We can help with any discomfort but I cannot help her let go. Her body is dying but her mind seems to be moving in and out of two worlds right now and I cannot help her with that. 

My Uncle, her son, comes tomorrow and I wonder if this is what she waits for? She has some dementia so it is difficult to know how aware she is right now. We explain what is happening to her body and she says, “really”? I take comfort in the words of Elisabeth Kubler-Ross, who said,  “I say to people who care for people who are dying, if you really love that person and want to help them, be with them when their end comes close. Sit with them - you don't even have to talk. You don't have to do anything but really be there with them”.

So we sit and play her favorite church hymns quietly in the background letting her know that we are here, with her until the end.