In tribute to Kate – her Celebration of Life eulogy, December 12th, 2015.
Thank you all for being here this afternoon to celebrate Kate. The love and support for our daughter over the past several years, and especially these past 2 weeks, has been incredible and it is a true testament to who she was, what she shared with her community, and the impact she has had on the world.
Brian, Jack and I are honoured that you are here to share Kate with us today.
Kate did not have an easy life. She suffered from an ultra-rare form of mitochondrial disease called SIFD – sideroblastic anemia, immune deficiency, periodic fever, and developmental delay. But we didn’t know this in the early days. When Kate was a baby – we simply knew she was unwell – and as her mom, I knew early on that something was wrong.
Kate’s development was behind, she was not doing the things other babies her age should be doing. She couldn’t hear me and wasn’t responding to sound or even to my voice. And then she started getting sick. We came to call these periods of sudden acute illness as her “episodes” and in the past 8 years she had more than 40 of these episodes that were acute enough to require hospitalization or day visits for intervention at CHEO.
I became not just Kate’s mom, but her medical advocate, her medical coordinator, her nurse, her caregiver, her pharmacist, and her therapist. We were determined to find out what was wrong with her and help her, but Brian and I were also focussed on supporting her to be a little girl and to have a full life of all the things a little girl should be part of.
Kate and I spent far too much time in hospitals. Kate regularly visited more than 15 different outpatient clinics at CHEO, as well as diagnostic imaging, day surgery, and the bloodwork lab (of course).
She was a fixture there and everyone knew who she was. She was the happy little girl, who ran the hallways of CHEO. She loved heading to the cafeteria to buy her french fries and to visit her friend Linda, or to the snack shop to get her bag of chips – and pay the lady at the cash on her own like a big girl. Everyone knew Kate, and she had a smile and giggle for everyone.
She spent time on 4East, 4 West, 5East and 4 North as an inpatient. Basically every inpatient unit of the hospital.She was invited to participate in the CHEO Telethon as a featured patient story in 2012, and it was an honour for our family to share her story.
CHEO became a second home for us – and it felt like family there. We definitely had very difficult times, but in 2009 when the Complex Care Program pilot began – we finally found a safe haven for Kate amidst the chaos of so many medical specialists, emergency room visits and admissions. We are forever grateful to Kate’s complex care team, Dr.Natalie Major and our nurse Christine who took on the role of navigating Kate through her episodes and supporting her complex medical needs. They have been part of Kate’s life for close to 6 years and their devotion to Kate and willingness to listen and work in close collaboration with us saved Kate’s life more than once.
Although Kate’s life was very medically focussed, she didn’t live that way. Vanessa Waters, Itinerant Deaf Teacher, recently wrote this post on Facebook:
“Kate didn’t choose many things in her life. She certainly did not choose her disease and all that came with it. She did, however, choose how she would spend her life. She had a choice in that and she chose well.”
Kate chose to be happy and joyful every day. Even when she felt unwell it was sometimes a challenge to know how sick or in how much pain she really was. Kate didn’t feel sorry for herself, she wasn’t sad…she was brave, resilient and happy.
Many people would comment that “Kate didn’t look sick”, and only those who knew her really well could pick up on the subtle ‘tell tale’ signs that something wasn’t quite right that day. Kate wouldn’t talk about it, or let us know directly.
Many of her trusted therapists, teachers and caregivers spent years helping Kate to develop her language – as a deaf child, we taught Kate to use American Sign Language, and with her cochlear implants (or her “ears” as she called them), we also worked on teaching Kate to listen and to speak.
A skill we all worked on consistently was trying to give her the words she needed to tell us or her doctors ‘where it hurts’, but she wasn’t interested in learning that. Instead she learned to talk about the things she loved – like swimming, gymnastics, school, her friends Ani, Lucy, Myah, and Matthew, going for walks to the park, drives in her van, going to ‘the House’ (as she famously called Rogers House), her favourite songs, and her brother “Jackie”.
Kate had a rich life – last winter she learned to ski – which made me incredibly proud as I realized I am not cut out to be a dance mom. She loved to go tubing behind the boat with her friends – and was known to throw herself off of the tube on more than one occasion, bobbing in the lake while we turned the boat around to pick her up.
She spent a lot of time at the Ottawa Gymnastics Centre from a young age and was adored by her coaches and staff there. I’ll never forget watching her jump on the trampoline last fall, and sending her off to summer gymnastics camp, and thinking back to the days when we wondered if she would ever be able to walk.
Kate loved the water. We spent many afternoons at the JCC, our neighbourhood pool. Kate would walk straight to the edge and jump in – often into the deep end – fearless. She was so confident in herself that she would swim back to the surface – often she swam down instead of up. We never discouraged her, but instead followed her lead. I think she gave more than one lifeguard or swimming instructor a heart attack as she jumped in and sank, waiting for someone to pull her back to the surface by the straps of her bathing suit. Jumping off docks, jumping off diving boards, careening down waterslides…and even cliff jumping (or being thrown off the cliff). Kate embraced it all. If the other kids were doing it, she wanted to be doing it to. She just needed a little support to get there.
Kate was so proud to attend school and loved being with the other kids. We are so grateful for the support from her days at Westboro Preschool; her first day at school at Broadview where she strode into the school yard with her big brother Jack; and her short year in the Deaf and Hard of Hearing Program at Vincent Massey Public School.
School days were short for Kate, as her body was often exhausted. She would come home after her half day and often be asleep in the van when she was dropped off. Many times, I would be called to the school to pick Kate up – or I would call in the morning to let them know Kate wasn’t up for school that day.
While Kate found many skills difficult, she was keenly interested in learning and eager to be taught. She often surprised us with the skills she picked up – especially when she started to speak french while we were in Montreal these last 9 months, proudly signing ‘thank you’ to her doctors and nurses and then repeating ‘merci’ in french.
Kate loved many things: Dora, Curious George, princesses – especially Cinderella; her birthday, or “Happy Day” – which could have been everyday if it was up to Kate; singing – and sitting on her Dad’s lap in the office watching endless episodes of The Voice (…it’s a singing competition). Kate loved the grocery store, and helping to pick out tomatoes (I hate tomatoes). She loved going for rides with her dad in his truck or in her van. She loved to sit in our front window and watch the kids walk to school. She liked going to Jack’s hockey games, though she never watched and someone always had to chase her around the rink. She liked neighbourhood parties with our friends, and dancing – and she came to especially like Santa. He would have been a huge hit this year.
We often said that people underestimated Kate – what she understood, what she was trying to express, and what she was capable of – but Kate never underestimated herself.
Kate’s brother Jack was and still is an amazing big brother. Jack grew up with an unwell sister – he didn’t know anything different. There were many demands placed on him over the past 8 years, and the last 9 months have been very difficult. But he has never been frustrated or resentful of Kate. He has supported her in anything she has done, and has always been by her side. One of my favourite memories is of Jack hauling his sister on her toboggan around the field across the street. Encouraged by her giggles and requests of “more – more”. Pulling her behind his bike in her chariot – being gentle with the bumps. Cuddling with her on the couch, while they watched Dora’s Christmas – at anytime of the year. Teaching her fist pumps and gently ‘wrestling’ with her – and tolerating her hair pulling and biting. Jack has always been a kind and empathic boy. He said to us that after Kate passed “Kate will always be with us.”, and I know that is true – especially for him. She has left a huge imprint on his heart.
The last 10 months of Kate’s life have been incredibly challenging. She spent most of her time at the Centre Hospitalier Universitaire Ste.Justine, in Montreal in protective isolation following her bone marrow transplant. It sounds gloomy and lonely, but it really wasn’t for Kate. It was hard on our family, but Kate made her days fun. We spent endless hours making pasta out of play dough, playing ‘groceries’, endless puzzles, playing with stickers and cutting out hearts. When Kate could leave her room there were moments of playtime in the hallways in a little orange car from the playroom, or riding around on a ‘big wheel’ trike. Over the summer, we would leave the hospital for afternoon walks outdoors, exploring the surrounding neighbourhoods and parks.
Kate loved her doctors and nurses at Ste.Justine. She had name signs for her bone marrow transplant doctors and enjoyed teaching “Dr.D” and “Dr.B” and Dr.Teira and Dr.Cellot how to sign.
She was silly with her nurses and full of hugs and giggles. And they loved her back.
Kate would cheer and clap when a mini-wheelchair or gurney would arrive to pick her up for yet another x-ray, or ultra-sound…or a trip to install another PICC line. And she would wave at her ‘fans’ at the nursing station as we wheeled her past. She matured and grew over those 9 months – and everyone remarked on how much little Kate had grown over the time she spent there. L’amour et le soutien de notre équipe de Ste.Justine avaient un rôle énorme dans ce que et nous serons éternellement reconnaissants pour le soin qu’ils ont pris de Kate.
Kate had many friends and champions. She had a smile and giggle for everyone and had a way of making everyone feel like they were the most important person in the world to her. She definitely had her favourites:
- Tall-Steve who would be silly with her. Take her for impromptu walks. Let her drive the boat from his lap. And help her to ‘cliff-jump’ by hauling her up a rock face on the Big Rideau and throwing her off into the lake below.
- Shawnee her gymnastics coach who tirelessly chased her around the gym and made Kate feel like the most accomplished gymnast by lifting her and supporting her on balance beams, bars, rings and trampolines.
- Kara her caregiver who took Kate on endless shopping excursions and adventures – grabbing a box of french fries or chips along the way.
- Sunita who helped her develop such a strong friendship with her daughter Anika. Who would be silly with her when her mom was tired. And who taught her how to do the ‘can-can’.
- Stephanie who I credit with teaching Kate to say “Love You” – mostly because she wanted to hear Kate say it to her every time she left after one of her Montreal visits.
- Her friend Kat from Rogers House who Kate adored. Kat made her feel special and loved and was ready to entertain Kate with endless crafts, salad making and big bubbles baths during her weekend stays at ‘the House’.
- Kelly, her auditory verbal therapist at CHEO – who worked so patiently with Kate over 5 years and whom Kate adored. Acquiring language wasn’t easy for Kate. It was hard work disguised as play, and Kelly guided Kate into the world of sound, but also supported her in communicating with ASL.
- And her ‘Grandy’ and ‘Bana’ who played the ultimate grandparent role in supporting Kate during her hospitalization, while being silly and fun and surprising her with endless “Happy Day” gifts.
And what I realize in beginning this list is that it is endless. Many of you have fond memories of Kate, and when you take a moment to reflect on them, I will bet they make you smile.
Kate loved everyone and she was loved back. Fiercely. That was her gift to others. She made people smile and brought them joy. She made everyone feel like they were her favourite person. Even in her most difficult moments, she would often be able to find a smile.
The decision to undertake a bone marrow transplant to treat Kate’s disease was not an easy one. Her brother, Jack was her perfect match, something that was rare – and Jack never hesitated to be his sisters bone marrow donor. He was brave and loved his sister unconditionally. It was an impossible decision for Brian and I, and as Brian said, the only perfect outcome would have been Kate surviving the bone marrow transplant and enjoying a healthier and longer life.
Kate’s BMT resulted in multiple complications, and though she was strong and she fought hard, in the end Kate’s body was tired. In the 6 1/2 months of her initial hospitalization in Montreal, Kate never asked for home. She accepted where she was and seemed as focused as we were on getting better. When she finally did come home in September, she amazed us all by rallying and improving – but something changed in the last few weeks. Our Kate was quieter and seemed tired. She continued to shine, but she had started to ask for home more and always wanted Brian and I close. “Come” she would say to us, even when we were standing right next to her.
We were faced with a very difficult decision when Kate’s graft versus host disease recurred again two weeks ago. We asked to bring Kate home while we tried to face yet another impossible choice – whether to undertake a very difficult treatment for the GVHD or whether to let Kate be supported palliatively. In the end, Kate decided. She took the burden of that decision from us. Her condition had quickly deteriorated and she made it clear that she wanted to come home. And we are so grateful that we could do that for her.
Kate spent her last few days supported by family and friends who loved her. She was never alone – someone always had her hand – there was someone with her to keep vigil at all times. Brian, Jack and I slept in her tiny room – crowded on the floor, and I in her bed. We nursed her, and comforted her, Brian slept with his hand clasped in hers.
And though she had incredible support at the end of her life – in the last moments it was just our perfect little family gathered together with Kate. Just the four of us – telling stories, sharing funny videos, laughing at Kate’s unforgettable belly laugh. We played “Fight Song” for her – and we cried – and we told her how much she was loved – that she would never be alone – that we would ALWAYS be with her. The terrible pain we felt in those moments was our wise Kate, taking a piece of our hearts with her. She knew we wanted to be with her always and our smart little girl took a part of us on her journey.
Kate’s life has had an enduring impact. She brought international communities of medical specialists and researchers together. The discovery of her rare disease and how it has been managed and treated has literally changed the lives for other children and families here at home and around the world.
What an incredible and beautiful legacy for a little girl.
I will miss her every day of my life. Her loss is an unimaginable pain.
I will miss her 2-arm squeezes, her “I lub you’s”, and her butterfly kisses on my cheek. I will miss her signing “good-morning”, her fine blonde hair, sparkly t-shirts, and her famous belly-laugh.
A person like Kate needs to be remembered. She has literally changed the lives of others for the better. She was the embodiment of what is right with this world and what we should all strive for; courage, strength, joy and a love for life and others before anything else.
That will be part of her legacy, and I plan to live it for her as best I can.
I am so honoured to be Kate’s mom.
“Goodbye my dolly”