Kate Drury – One Year

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 

10 Comments

  1. Julie,

    This was incredibly hard to read so I cannot imagine how hard it was to write. It is so beautiful, and raw, and open. Thank you for being willing to share it. You are so amazing, all of you.

    Reply

  2. Thank you for sharing your story. Kate has made her mark on my heart, via your posts. Simply sending you as much love as I can muster – pure, sincere, unabashed.

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  3. I honour your courage in writing this – I am so moved by all that you have doné and Kate’s bright light of a life – we are with you on this next part of the journey as well. You did all that you could and much more. All of you. Hugs on this day and forward.

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  4. Dearest Julie,

    I am thinking of your darling girl today and of you, Jack and Brian. I cannot believe one year has already passed since I attended Kate’s Celebration of Life last year. Your five essays touched my heart and soul more than I can possibly put into words. “Thank you” does not seem adequate when I try to express my gratitude for allowing us to enter such an intimate and sacred space … Your unimaginable courage in writing these tributes to Kate is both humbling and inspiring. I met your Kate and will always remember her as the most incredible blend of pixie dust, true grit, joie-de-vivre and flat-out determination. To meet Kate once was to remember her for a lifetime. I have her “Fight Song” on my running playlist and it will always be there to inspire me to push harder, give more, and to be courageous and kind – like Kate.

    Sending blessings to you and your family, especially today.

    Carole xo

    Reply

  5. Dear Julie,

    I felt every word… you are an amazing woman. I think of Kate often than you know. I still talk about her. She has touched my heart in so many ways and will be forever in it and always. I miss her hugs too, Julie.

    I hope and pray for more strength and courage for you to keep on going. You truly are one of a kind!

    Love always,
    Katherine (cheo blood lab)

    PS
    Kate, see you later, aligator! I love and miss you lots and lots!!!

    Reply

    1. Katherine, it is so nice to hear from you. Kate really did not like bloodwork (who does?), but we would always ask, and wait for you and that made a big difference.
      Miss seeing you.
      I hope you and your family – Jack – are well.

      Take care – and thank you.

      Reply

  6. You are such a strong person, your words have touched my heart so deeply. I started reading your posts this past weekend and I have been sending big hugs and warm energy your way all this week. You are an inspiration!!

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  7. Julie, thank you for sharing this. As always, you remain in our hearts and minds, especially at this difficult time. You, Brian and Jack are wonderful people who will never be alone; not ever truly apart from beautiful, amazing Kate, nor from your friends and family who love you. We are all blessed to know you. Our hope is for you to forgive yourself and for you to heal, with time. The extremely difficult decision you made was based on all the advice and facts you had before you and was made with love. No child could ask for more than everything you have done, every step of the way. You all deserved so much more. We send our love and best wishes to you all,

    Morgan and Cathy

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  8. I am struggling to find words because you have written your family’s story so beautifully, so eloquently. I am grateful you shared this intensely personal story so we can all share some part of Kate’s life. I hugged my kids tightly. A reminder of how lucky I am.
    Julie you have taken your pain and led a movement that has changed the world. I am honored to have met you.

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  9. Dear Julie, thank you for re-sharing this deeply personal account of your loving daughter’s journey and family’s experience in the healthcare system. It makes me feel so angry at times for what you all had to endure. Particularly no care services over the weekend. This is so wrong in so many ways. Julie you have moved so many by sharing your experience and now transforming this into your life’s work. Your daughter was such an incredible gift and the love of such a beautiful family through this tragic series of events is so incredible that words cannot do it justice. Blessings to you and your family.

    Reply

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