Writing Shalebug's eulogy was a testament to powering through writer's block. I had the devil of a time trying to edit my precious child's life into a five minute testimonial. But I managed. And I am better for it. I have thought about it and decided to share it with you, dear internet. Why? Because I want the world to know the boy who was known as the Bug.
It went something like this:
Some of you may wonder why I'’m doing his tribute. Why we never passed this task on to one of Shalebug's many friends or relatives. But those of you who know me know that for so long I was Shalebug's face, his shadow, his words and interpreter; it just seems fitting to continue for one final journey.
Bug was born on Jan 04, 2001. He was diagnosed with agenesis of the corpus callosum, Moebius Syndrome, bilateral club feet, etc... I could go on and on because the little guy had a lot of fancy letters and labels after his name. Those labels meant he couldn'’t smile or frown or blink. He didn'’t eat, but he loved to taste. He couldn'’t talk, but he never was quiet. He fought to breathe, to sit, to walk. It was almost a year before we recognised the sound he was making was a giggle.
But these labels did not define who he was. Instead, they were the chains that tried to hold him back. It took Bruce and I both some time before we realised that Shalebug would not be bound by the limits others had placed upon him, and to understand he would reach his milestones in his own time.
Like everyone else, Shalebug was the sum of his whole, not just his struggles. Bug endured a lot of pain and heartache just to simply be. He was in the hospital for three long months at the beginning of his life and we made many more visits through out the years. He had countless operations and procedures. He was poked, prodded and examined more than a body should ever have to be. He developed an instant distrust of any one who came to sit in front of him in a small room. Shalebug's paediatrician, once told me Bug would eventually outgrow the crying he did whenever the big guy would walk in the room. But our Shalebug was stubborn. For as much as I loved seeing the big guy, Bug just never did.
Boo and I want you all to know the boy who never smiled. We understand how hard it was for people to know him when it seemed Shalebug was not interested or far away. Many tears I have shed because he never talked, never said "“I love you Mommy."
So I stand before you to tell you about the boy we knew. The boy who loved his bubbles. Who loved to watch his sister and brother rough house and then giggle with delight when they would drag him around with them. The same boy who would open and shut doors and cupboards until I thought I would lose my mind. In his last year he started music lessons at school. One of my favorite memories will always be him pounding on the piano like a little Liberace.
Our son was stubborn yet gentle. He loved to give everyone kisses but you had better be prepared to be slimed by him. He finally learned to hug about a month ago, and he just figured out how to wave bye-bye on command. He would hi-five any one who asked. He took his first steps at the end of May and since then we couldn'’t slow him down. On his last day he was being particularly stubborn in the Camrose Superstore. The little Bug wouldn'’t move, so busy was he examining the raisin bags in the aisle. To get him motivated (and to speed the boy up) we raced to "“On your mark, get set, GO!!" And off he went.
Shalebug was my hero and his father'’s hero. His spirit was strong and kind and gentle. We used to joke around that he was our easiest child yet. You didn'’t have to worry about him talking back and you could just plug him in when he needed to be fed. But he wasn'’t our easiest child. He was the one who brought me to my knees before God and made me see the light. He strengthened our family with the bonds of his love. He brought Boo and me closer and formed his siblings into better people. He blessed the lives of everyone who had the opportunity to know and love him.
We learned from his struggles what it meant to appreciate our health and our bodies. Everything we take for granted: speech, breathing, eating, walking, even bowel movements. For him it was always a struggle.
Shalebug taught us patience and understanding. He showed me how to see everyone, even the invisible. He has taught me there is always a reason and I can learn from anything even the tragedies of life.
So your brother and sister, father and I would like to thank you, my little moonbeam, our Bug, for being here and enriching our lives so very much. As we watch Fric and Frac grow into the people they are meant to be, we will know they are who they are because of you. And we will always remember your love.
So the next time you are drinking a Starbucks, I ask that you stop and think about my coffee-loving little boy. Remember, he was never our burden, but only ever our blessing.