Cillian Ethan Barrows (July 26th, 2009- June 6th, 2012)
Today was little Cillian’s Memorial Service to celebrate his beautiful life. A tree was planted in his memory at the Royal Botanical Gardens in Burlington, ON. next to his great grand-dad’s tree. It’s hard for me to describe with words how much this little boy meant to me so I just wanted to share a couple photos of him and take a moment to remember his incredible smile, his bright blue eyes, and his brave little heart.
I remember the very first day I knew about his existence, he was just a little fetus barely the size of a peanut shell. I remember telling his mother, “I’ll love him forever” and I promise I’ll stay true to my word until my very last breath. The day he was born, I dropped what I was doing and rushed to McMaster Hospital. I remember holding him for the very first time, running my fingers across his tiny little red hairs, and nicknamed him “Fuzzy Peach” because his head felt like a peach. I remember thinking, how could something so tiny fill my heart up with so much joy that it felt like it could burst? Within seconds of being in his presence, he touched my heart and my world changed.
Shortly after his 1st birthday, Cillian was diagnosed with a terminal case of Mitochondrial Disease called Leigh’s Disease. I remember that dreadful winter evening when his mother called me. I was speechless. I didn’t know anything about this disease and I couldn’t understand why it was happening. I still don’t understand. Why did someone so small, so pure, and so innocent deserve such a terrible fate? I didn’t know what to do. But I knew that I had to do something. I had promised to always love him and always be there, I wasn’t about to break my promise now. He would never have to fight this battle on his own. I’m so glad that he can finally stop fighting now, but as long as I’m still living, I’m going to be on the front line, fighting his battle for him. It doesn’t end here.
Millions of things have inspired me to do the things that I do, but Cillian was the reason behind all of it. He gave meaning to my projects. It’s ironic that the little boy who suffered from Mitochondrial Disease, a genetic disorder characterized by a mutation in the mitochondria, causing energy deficits, was the power house behind everything that I do today. He is the reason that I wake up each day telling myself, “Today I am going to do something that will make a difference in the lives of children and families suffering from Mitochondrial Disease.” I only wish that I could have given to Cillian a fraction of what he gave to me. Physically, his energy stores were deficient, but spiritually, he had the energy of an entire power plant. He was dying, but he was bursting with life and love and hope. It breaks my heart that such a perfect little angel had to be taken away from his mama and his loved ones, but he truly was an angel, and angels aren’t meant to live on Earth. I am so thankful for every moment that I got to share with Cillian, even if it feels like it was never enough. He is finally in peace now with his best buddy, Diego, getting up to all sorts of adventures. And every time that the sun shines, it is like Cillian’s laughter warming up the earth. And after the rain, when a rainbow stretches across the sky, it is like Cillian’s arms reaching down to embrace the earth.
Cillian Ethan Barrows, I promised to love you forever, and I’ll keep that promise whether you are by my side or smiling down on me from the skies above. You fought your part of the battle, now it’s our turn to fight the rest of it. Rest now, sweet angel. You were such a blessing.