Katherine Carol Irene Drury was 8 years old when she died. She was a beautiful green/blue eyed girl with soft blond hair, an impish grin that crinkled her nose, and a wonderful giggle. She liked princesses, Dora, Curious George, puzzles, play dough, singing, friends, school, chips, french fries, pasta, boating, pools, sledding, gymnastics and beaches. She loved to be outdoors. She hated ‘pokes’ for IVs or bloodwork. She was curious and made friends with everyone. She loved her van and doing any assortment of errands. She was deaf and had cochlear implants. She learned to speak and had sign language as well.

She was frequently sick and often at CHEO. She inspired doctors, nurses, researchers, the mitochondrial disease and SIFD community, her friends, family, neighbours, community, and people across the world.

She was a trailblazer when all she should have been was a child. Even in her death, people are still learning to be better because of her. 

Kate died November 30th, 2015 at 10 p.m.

I have no more words to describe what happened in those final days. I have shared what I can, sobbing as I wrote those 5 essays. So hard to write them.

I loved my daughter with all my heart. I still love her with all my soul. Brian and I are devastated at her loss. It feels surreal. Jack is speechless and extremely personal about his grief. ‘Ruined’ is how I describe myself. I often look at the calendar and think, one more day, week, month, year without her. I wonder about how long until I am with her again. I struggle every moment for composure. I work hard at putting one foot in front of the other.

Our lives are quiet, filled with too many hours. Kate took up so much space and energy. The void she has left cannot be filled, we have not been able to adjust. Her laughter, giggles, physical needs, medical needs, took up so much time and emotional space for all three of us.

I wake every morning and open her door and whisper the words, “Good morning dolly”. I close her door in the evening (at her bedtime) and sign “Good night Kate-O”. Her space is unchanged, her smell lingers, her room is a sanctuary for her spirit.

I talk to her. The conversations happen spontaneously and feel so real. She signs and speaks to me. “Miss you”, “Love you”, “Come”, “Jack”, “Papa”…”Sad”. They are her short sentences that have so much meaning.

I reply back to her; “Oh baby-girl, I miss you too”, “Yes dolly, I love you”, “I will come Kate-O, soon” (and she signs back “soon”), “Yes, Jack – Jack misses you too”, “Papa loves you”…”Yes, Kate-O, mama is sad. I miss you.” I feel she is confused about what happened and the veil of separation that exists between us. We are so close we can almost touch. She is happy and safe, but waiting for me.
And then, I feel some relief. I love when she comes to me. I love when I can feel her arms wrap around my neck, “Sq-eeez”, she says. Or when she visits with a beautiful sunrise of pink and purple. Or when she kisses my cheek and giggles. Or grabs my face in her hands and puts her face so close to mine. It feels real, there is a physical sensation, her presence is so strong and powerful.

She visits others, and those accounts of “Kate visits”, feel so real and are so beautiful. I am glad she is spreading her love.

Kate was a very unique child and spirit. Yes, I was her greatest champion and advocate, but I cannot take credit for what a force she was in this world. She was a gift that I was entrusted with.

Her death was a tragedy. It should not have happened and I will never forgive myself for the decision we took. I feared her disease taking her life unexpectedly. I wanted to help her live a full life and one that might have been less difficult. I became convinced this was the best choice to realize that. I could never have imagined this would be the end of Kate’s life, or been prepared for the circumstances leading up to her death. I had so much more to do with her, and she had so much more to share with all of us. She deserved so much more.

Thank you for your beautiful tributes today. Pictures, posts, messages…they are truly touching and I will read every one.

Julie