Canuck Place moms are the strongest moms we know.
This Mother’s Day, Canuck Place shares the story of Kerena Letcher, one of the strongest moms we know. Her son, Heston, has a terminal illness called Sanfilippo Syndrome. He has been on the Canuck Place program for over 6 years. Kerena and her husband are also parents to four other boys, two teenagers and younger twins.
We asked Kerena about her journey through motherhood and how she has navigated her life with her five children. Her words are filled with strength, love, compassion and honesty.
What is it like being Heston’s mom?
“Being Heston’s mom is like being given a role that you always feel unqualified for. It is sort of like having one child, figuring out all the things that work, thinking you are prepared and know what to do, only to have that second child and realize none of the tricks you learned for your first will work for your second. With Heston, his needs and abilities are constantly changing so we have to continually adjust and figure out how to accommodate new needs, the loss of various abilities, all while focusing on giving him the best quality of life possible.
Most mothers would say that as a job, being a mother is one of the hardest and most rewarding things you ever do. For a mom of a special needs child, both of these things are true, but each one is magnified. I have both teenage children and younger children. I know that some of the most intense times a parent goes through is when you have a newborn baby- a child that requires feeding, toileting, and cannot verbally express their wishes, needs or ailments. Now imagine having all of those responsibilities for the lifetime of your child. No toilet training, learning to eat on their own, no buckling themselves into the vehicle. And when they are sick or hurt, they do not have the ability to tell you where it hurts. I know as a mom of developmentally typical children I could not wait for the day they could do many of these things independently. I love having conversations with them, teaching them, watching them learn, grow and develop their own personalities. With Heston it sort of feels like you are stuck in the baby stage in many ways, except that baby continues to grow and becomes more and more difficult to maneuver and care for. Many of the things that make the role of a mother difficult are 100 times more difficult when you have a child with special needs.
And that takes me to the rewards of being a mother. When we view the role of a mother as being a gift it is no different for that of a special needs mom- in fact it can be exemplified. Being Heston’s mom is truly a privilege. It is having a front row seat to watching this precious soul bring joy and comfort to kids and adults alike. It is having a daily reminder of what things are important in life- a continual shift in perspective. Many things that once seemed important become frivolous, and life takes on a new depth. I have often felt that before I had Heston I lived my life in black and white, and now it is in colour. I experience things more deeply, constantly faced with hardship and the anticipation of grief. But on the other end of the spectrum I have found I experience joy to a greater degree than before. Things that I previously took for granted are now deeply appreciated. For example, when my older boys were young I simply assumed they would learn to run, talk, write and create so while I enjoyed these milestones they were always expected. Now that I have had a child who has never reached these milestones, experiencing these same stages with my younger boys has taken on a whole new meaning. Nothing is just expected anymore, each milestone is a celebrated gift and I experience so much joy and gratitude for and through them.
Heston’s needs are not the only thing that makes him special. His lack of understanding means he doesn’t become anxious or worried as his mental development is similar to that of a 9 month old. He doesn’t judge, criticize or belittle. He simply accepts each person as they are. He is never fake, allowing every smile and laugh to be truly genuine. He is gentle and a lover of touch, allowing cuddle times with him to be both special for us and helpful to him. He has the most beautiful, deep eyes that you can lose yourself in. When he locks eyes with you, there is something amazing that takes place-it is as if you are gifted with a moment that is part of a spiritual world that normally you cannot access, but somehow he holds the key.”
Can you tell us about the day Heston was diagnosed?
“The day that Heston was diagnosed was by far the hardest day of my life. My world and everything around me seemed to come crashing down and I felt like it was going to be impossible to dig my way out of the rubble. How could I support Heston, his siblings and those around me when I could barely cope? I had twins who were just shy of turning one at the time, so I was in survival mode just in the daily care of them, all without the added mental and emotional weight of Heston’s diagnosis. My daily life seemed difficult as it was and this news came as a blow to everything I thought my future held. Sanfilippo syndrome has been described as a parent’s worst nightmare. Your child is born seemingly normal and then at around 2 to 3 years begins to decline, losing the abilities they had already gained, their brain being damaged more and more over time. You are told that it is terminal, with no treatments or a cure, and that it is best to make the most of the time you have left with your child. It has been over 6 years since Heston’s diagnosis and while over time I have become accustomed to knowing his days are limited, and I have spent these last 6 years watching him lose the ability to walk, eat, etc, I will never be ready to let him go. I still have days and moments where I am brought to my knees at the thought of losing him. No matter how much I plan to feel prepared and ready for when that time comes, I can still feel at times like I am treading water and barely keeping above the waves. I have often said that one of the hardest parts of having a terminal child is having the knowledge of that diagnosis and having to continue to live day after day, trying not to let it suffocate you. Having four other children has forced me to continue to move forward, taking it one step at a time as I know I have a responsibility to them as well. My boys have often been leaders for me in this and we have been able to find joy in so many things as a family as we navigate this journey together.
How has Canuck Place supported your family?
“Canuck Place has provided us with support in so many different areas over the years. For many years it was primarily a place of respite for us. As Heston is difficult to travel with, Canuck Place has been the primary source of a “holiday” for our family. You hear of people who had a cabin growing up that they went to for vacations, where many of their fond memories as a family were made. Canuck Place is our families’ cabin. It has been a much needed break at times from the care of Heston, all while having meals provided and a beautiful, clean place to stay. We also have so many amazing memories of activities we took part in and places we visited through the rec therapy team during our visits to Canuck Place. These are special times as a family that we will always cherish.
We also went through a period of time with Heston where Canuck Place basically saved our boy. They took him from a place where he was at rock bottom medically and physically, to a place where he once again had a good quality of life. From struggling after a major complication that almost took his life following what should have been a routine surgery to a new normal where he could once again thrive. While his recovery took months, Canuck Place followed his progress through the entire process. Their knowledge of children with complex needs allowed them to think outside the normal medical box, and they helped direct us in his recovery, getting him back to a place that we had lost hope that it was even possible to get back to.
Today, Canuck Place remains a place of respite for our family, and gives us piece of mind for any further symptom management that Heston might need as his condition deteriorates. Having access to the 24 hour nursing line is an amazing resource for us, particularly because his disease is so rare that outside of Canuck Place many medical professionals have never even heard of it. It is incredibly difficult to seek medical advice from someone who has no knowledge of what he has, so being able to call and speak with nurses and doctors who are not only familiar with Sanfilippo syndrome, but know your child personally is invaluable.
As we are in the later stages of Heston’s disease, we are looking to Canuck Place to prepare us for the possibility of end of life care for him. They continue to lead us with sensitivity and care, thinking of us as a whole family, ready to support us in what we anticipate will be the hardest thing we ever face. It is as if we are readying for battle and Canuck Place is there to help equip us, catch us when we fall and show us how to find strength to continue to live even when the battle is over.”
What does Mother’s Day mean to you?
“Mother’s Day is a day of recognition, celebration, and often for me, an excuse to rest. It is that day on the calendar that I can let my family take over some of my responsibilities and treat myself to a break.
My children have taught me that love is not always easy, but is the greatest gift we are ever given. As a mother of 5 I often feel like I don’t have the opportunity to be selfish, and that has been a blessing. I believe we are created to be givers, and that it is by giving that we live a life that is abundant and fulfilled- whether that is giving of our time, our efforts, or of our love. So often if it was left up to me my instinct would be to keep my time, efforts and love mostly to myself, but having 5 children forces me to focus those things in their direction. Through that I have been blessed, as it is through giving that we truly receive.”
What would you like to say to donors?
“So often when we give to charities we are hopeful that their impact is “as advertised”, that they are making a positive difference in their area of support and that our hard earned giving is not being wasted. To donors of Canuck Place I would say that as a mother of a child with a terminal illness, I know first hand how valuable this organization has been to our family. We often say we don’t know what we would do without Canuck Place, and I hate to even imagine how much more difficult our lives would be without their support. They have helped us make some of the most amazing memories over the years as a family, all while helping our son to maintain the best quality of life he could possibly have. How could we be anything but grateful for these two most precious gifts? All of this support is made possible by the generous donations of so many, and we are so blessed to be the recipients of this amazing generosity.”