Two years ago today Sacha earned his wings. He would be proud of the way the community has rallied after his passing to create a special place where children like him, with limited abilities, will be able to play side by side with everyone else. Rest in peace sweet boy, your legacy will live on in the smiles of all the children who will soon enjoy Sacha’s Park - Where Everyone Can Play.
Sacha’s Eulogy which was read by his father, Jason Chenier, at his memorial service:
Sacha Chenier December 2nd 2002 - June 9th 2014
I stand before you today, honoured to have been chosen to father a precious child such as Sacha. His medical challenges at birth seemed overwhelming. There were many times we were told to there was no future and no hope… to let him go. Quite simply, how could Sacha possibly have a good quality of life with all of the issues he faced? A child who will never walk, never see, never speak. A child who would need assistance for the most basic tasks. Really, what value did a life like his have?
I am here to tell you today, that the past eleven wonderful years with Sacha have shown me a lot about what is truly important, when we discuss quality of life. When I look back at Sacha’s time with us and think again about the whole subject, I see it now with a new perspective: if a person on his deathbed were to reflect on his life for the last time, would they think to themselves “I’m so glad I learned to walk, or talk, or ride a bike, or any other ability related skill? Or, would they be thinking instead “I’m so grateful for my wonderful family and friends and all the great times we spent together”? It’s really these thoughts about relationships and experiences that should more accurately be used as the measuring stick of what is REAL quality of life. A person’ quality of life should not be judged on what they could or couldn’t do, but rather on the how much joy their experiences and relationships brought them. Looking at it from this perspective I can say with confidence that Sacha had a very high quality of life. His experiences were many and for his entire life he was surrounded by love. The love of his mother and father in our care for him and constant encouragement to not be held back from enjoying life by his limitations. The love of his brother Sebastien who adored him and was always so proud of his little buddy. The love of his grandparents, uncles, aunts and extended family who thought of him often despite the geographical distances that divided them. The love of the David family who helped with his care by taking him into their home for a few hours each week and loving him like he was their own. The love of April MacDonald, who worked with him at our house by assisting us with his daily care and spending countless hours cuddling him in his room. The love of his school workers, who helped him strive towards his educational goals. The love of his friends and classmates who showered him with affection and saw past his disabilities.
Sacha’s journey was never an easy one. He struggled to do even the most basic of things. Yet, in spite of his struggles, Sacha was always happy, always smiling. His joy was obvious in the beautiful sounds he would sing and his contagious laughter. There is no doubt in my mind that Sacha was happy…truly happy. His life was one surrounded on a daily basis by love, and he offered an equal amount of love in return. Although he could not say the words, the love he had was evident in his excitement at being around those who showed him love and kindness. He would squeal with delight, and dance a jig with his little feet.
From the very start we refused to let Sacha’s limitations become an impediment to his ability to enjoy life to its fullest. His every milestone, no matter how little, was celebrated with great pride, as we knew how hard he had to work to achieve the things he did. Birthdays and holidays were always big over the top events, as we were never certain how many more we would have with him. In his short time with us, Sacha had many amazing adventures. He traveled the seas with the Disney Cruise Line. His travels took him to many places throughout Canada, the United States, Mexico, and Columbia. He got up close and hands on with the whales at Marineland, rode several rides at Walt Disney World, swam in the ocean, and attended sporting events. On a trip to the hockey hall of fame, he got to live every Canadian boys dream of putting his hands on Lord Stanley’s Cup. While in Mexico he swam with dolphins and found great joy in the sonar songs they sang to him.
Sacha was also quite the social butterfly. Over the years, he hung out with the likes of Mickey Mouse, Bugs Bunny, the Marvel Super Heroes, Scooby Doo, Captain Jack Sparrow, Buzz Lightyear, Bart Simpson, Curious George, Shrek, and the gang from Sesame Street, amongst others. Of course we must not forget to to mention Sacha’s favourite of them all: Batman. Early on in our journey with Sacha, his brother Sebastien, informed us that Sacha’s favourite super hero was Batman. Now, I’m not exactly sure when Sacha would have told this to his brother, but I suspect it had something to do with a certain Bat-belt that Sebastien wanted us to buy at the toy store. The concept of Sacha having a favourite superhero made us smile and was embraced from that point on and very much became part of Sacha’s little personality. As some of you may know, his father doesn’t do anything on a small scale. Sacha’s love of Batman was celebrated in birthday parties, trips to see Batman in person at Six Flags, and a Batman themed bedroom. As fate would have it, the last photo taken of Sacha was at the Children’s Hospital in Ottawa where we had gone for appointments only a few days before his passing. On our way out, who do we see but Batman himself, patrolling the parking lot in his Bat-mobile There was no way that we could leave without a photo.
A question that I asked myself early was: Why Does God create severely handicapped children? I came across an explanation from Rabbi Arron Moss at one point that helped clarify this question in my mind. I’d like to share it with you: Every birth is a gamble. A soul enters the world innocent and pure. But it may not stay that way. This world is a maze of diverging pathways, both good and evil, and the choice is ours which way we go. Once a soul enters a body, it is free and therefore vulnerable to corruption. While acts of good elevate the soul, every act of evil makes a blemish on the soul. Some souls are so lofty, it simply isn’t worth the gamble. These souls are too precious to risk being compromised by life in a body. They are too high to come down to this world. But the other option, not to be sent down at all, to never reach this world, would mean that we would miss out on meeting these holy and lofty souls and hearing their message. So, these souls do come down. But in order to be protected from the potential evils of an earthly existence, they are sent down into a body that will not compromise their holiness. They enter this world in a form that is above sin, above evil. From a purely physical perspective we call them “disabled” or “handicapped”; from the perspective of the soul they are protected. They will never sin. Their sojourn in this world is often brief, and in terms of this world may seem sad. But they have retained their purity. And they have fulfilled their mission. These special souls remind us that true love doesn’t need a reason. We often love others for what they give us – we love our children because they are cute,smart, and high achievers; we love our spouse for the pleasure and contentment they give us; we love our parents because they care for us. This is love, but it is not pure. When a child is born that will never achieve worldly success, cannot provide the usual source of pride for his parents, all extraneous reasons to love him fall away and what’s left is the purest love that there can be. These children are lovable not because of what they do for you, and not because of what they will one day become, but simply because they are. These pure souls remind us what love should be. Only such a pure and holy soul can elicit such a pure and holy emotion. We can only stand in awe of them…. and we can only thank them, forgiving us a glimpse of what true love really means.
Being around Sacha changed me a great deal as a person. He was the best example of how we should all strive to be. A true example of a soul at its purest. A true angel. I feel honoured that he chose to spend his time here with us. Sacha was a teacher. The lessons that he left all of us who know him are as follows:
From Sacha, whose fist was never be raised in anger, may we learn a gentle touch towards those around us. From Sacha, whose voice never uttered a hateful word, may we learn to speak kindly to each others. From Sacha, whose first smile was a rare and precious gem, may we learn to give smiles freely to the people we meet from day to day. From Sacha, whose arms struggled to reach and cuddle, may we learn to embrace each other easily and frequently. From Sacha, whose eyes strained to see our faces, may we learn to see the beauty in all of God’s creation. From Sacha, who’s heart was full of pure unconditional love, may we learn to love each other in the same manner. From Sacha, whose body did not work perfectly, may we learn that life is beautiful, even when it’s not perfect.
Although our love for Sacha can’t change his passing, no matter how hard death tries it can’t separate people from love, nor our memories. Today we say goodbye to our precious little Sacha ….but not to his pure and loving spirit, which will continue to live in every smile brought on by his memory and in the hearts of all who loved him. Rest in peace my sweet boy. We love you to the moon and back.
Help support Sacha’s Park by making a donation at: gofundme.com/everyonecanplay