Kate Drury – A Celebration of Life

 

In tribute to Kate – her Celebration of Life eulogy, December 12th, 2015.

 

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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”

Kate’ Celebration of Life Memorial

We are planning a memorial for our little girl. It will be a celebration of her life and we hope anyone who feels touched by Kate and her story will attend. 

 

Katherine (Kate) Drury
Celebration of Life Memorial
Sunday, December 13th at 4:00 p.m.
Ukrainian Hall, 1000 Byron Avenue, Ottawa, K2A 0J3

Please come and celebrate Kate’s life with us on Sunday, December 13th. In memory of Kate, we encourage you to wear something pink or purple.
Kate loved cutting out and pasting hearts. We would love it if you would bring a heart with you that you can leave behind after the memorial service.

Thank you,
Brian, Julie and Jack

 

Kate

I am sitting here this evening reflecting on an incredible outpouring of love, support and inspiration over the past 4 days from friends, family, neighbours, physicians, nurses, volunteers, teachers, therapists, coordinators who were a part of Kate’s life.

Kate died November 30th. She was 8 years old.

There are no words to express how I feel right now. Just raw emotion and a gut wrenching pain that no mom should ever experience. My daughter did not deserve this end. She deserved to live. She was a fighter, but she was also pure joy and light. Something this world desperately needs.

In the days to come you will learn more about Kate, because I will continue to write about her and celebrate her. We will have a public memorial on December 13th to celebrate her life and we are welcoming all to attend. (Details to come).

A person like Kate needs to be remembered. She 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. That will be part of her legacy, and I plan to live it for her as best I can.

 

Kate’s Mom

We Can Do Better

Let me start this post by asking this question,

When is this ok?

“There’s mounting evidence that several B.C. schools are restraining children who act out and putting them in isolation rooms” (CTVNews)

 

Are B.C. schools using isolation rooms to restrain

“parents from across the province who reported that school staff used various forms of physical restraint and seclusion against their children, many of whom have special needs” (CTVNews)

“some children were locked alone in small rooms, including closets and stairwells. The length of isolation ranged from five minutes to more than three hours” (CTVNews)

The answer for me is never. It is never ok to treat anyone like this, especially our most vulnerable and especially children.

The fact is – and I have lived it – schools have a difficult time keeping up with the needs of children who require more specialized attention than their peers. The ‘not-typical’ kids, the ‘medically fragile’, the ones who don’t fit the norm. These children don’t fit in the regular system, but they are forced in there like square pegs to round holes, and resilient as they are, they do their best work within a system that lacks the infrastructure and supports to truly educate them.

It is called ‘integration’ and it is full of IPRCs and IEPs (if and when they are used) and endless advocacy, but what it should be truly called is, ‘we’ll do what we can, but it won’t be consistent across schools, administrations or teachers, and at best it will be haphazard and you’ll have to make do’. It’s not integration, but as parents to these children we work with the schools to make it the best we can for our kids.

What is resulting from the lack of support and lack of parental engagement (in many cases)  is that children with special needs who have associated behavioural issues are not being managed properly and teachers – who for the most part are amazing and doing their best with what they have been given – are using inappropriate measures to manage these children.

It used to be frequent trips to the corridor, or principals office, but now…

Isolation rooms? Restraints? Holds?

For elementary aged school children?

REALLY

How do you think this child feels? What emotions do they have when this happens to them? A child who is already challenged and likely feeling isolated? A child who cannot regulate their emotions as a ‘typical’ child might be able to and is already distressed.

“Forms of restraint included having arms twisted behind a student’s back, being held in a chair, having wheelchair straps put around a student’s legs, and being put in wrestling holds” (CTVNews)

A nursing friend of mine, who works with psych patients, told me these measures are rarely used with adult patients. And isolation rooms are unheard of.

When did this become ok for our children. When did we all stop paying attention. When did we start the slippery slope of justifying this – no matter how frustrated we got. When did we stop asking for help, or seeking other measures.

“parents weren’t even told about the practices used on their children”

This is beyond bold, and  the part that upsets me the most personally. I know who Kate’s teachers are, I know her EA, her classroom ECE, her itinerant deaf teacher. I know the principal and assistant principal and the office staff. I am regularly at her school. But I don’t know each and every teacher personally and I know there are many adults who come in contact with Kate over the course of a school day who I am not aware of. Kate can’t tell me how her day was. She can’t tell me if a particular teacher said or did something that upset her. She can’t help me to protect her or advocate for her as a ‘typical’ child could.

Let me be clear that I trust the adults who are with her. But reading an article like this heightens my awareness and instinct to ensure I know exactly what is going on with Kate and how she is being ‘managed’ at her school. Even if I think I know – I want to be sure.

Trust is something parents of special needs children don’t have the luxury of. You have to KNOW.

This situation in BC has made that abundantly clear.

WE CAN DO BETTER.

Julie

Where Did I Go?

It’s been a couple of months since my last post on this blog.

I’ve had a lot to write about. There has been no lack of ideas for content. I think I have just been overwhelmed with the how much I want to write about and how I want to write about it. Overwelmed. It often makes me disappear. When I don’t return phone calls, don’t listen to voice mail messages, get anxious about the size of my inbox, try to make ‘to do lists’ and then don’t get them done (as they get bigger and bigger), look around me and wonder ‘where should I start’…

Have you been there? Have you done that? (Please say yes).

I’m  a pretty organized woman/mom/caregiver/advocate/employee. I don’t get overwhelmed easily. Or at least I didn’t used to. But it seems it happens more readily the longer I live this life of searching for solid footing in a redirected life.

I’ve learned to focus and to center my attention on the important things. I’ve learned to put one foot in front of the other and to just get it done. I credit running with teaching me this and reinforcing it. Maybe I should also credit Kate. Marathon running is very much about one foot in front of the other, focus, and ignoring all distractions (the pain, the ache, the anxiety). I think caring for a special needs, medically fragile/complex child also teaches this. I can’t worry about the next moment, I have to get through ‘this’ moment. This is particularly true when Kate is not well. Get through the vomiting, change-laundry-meds-settle her…repeat. Pack for hospital – focus on what she needs, and what I need for the trip. Get through the ED (emergency department), wait patiently, move her from one arm to the other even though my arms are screaming because she is so heavy. Focus on the moment, one more moment of holding her. Get through the inevitable IV – focus on the process, coach the nurses on what works best for Kate, ensure she is positioned and held properly, control the tears that will be sure to flow – both her and I (pain, and sadness of seeing her scared and in pain).

It is endless, and because it is endless it requires focus on the next step and no further. Know the plan – know your strategy  but focus on the next step.

Boston Marathon 2013

Boston Marathon 2013

Running has helped me learn this focus.

April 15th, 2013 I ran the Boston Marathon. Running has been an amazing outlet for me. A focus that has given me an outlet. It allows me to connect with friends, push myself, to focus on something outside of my life with Kate. But on April 15th, something that has brought me such personal fulfillment and passion and sense of accomplishment, ended up being only 26 minutes of joy in my accomplisment. 26 minutes after I finished my race, the bombs went off. I don’t want to be melodramatic about the events of that day. I was safe, never at risk – nor were the friends who came to Boston to support me. We heard the bombs – we were a block away – but we saw none of the carnage and horror. When we finally realized the scope of what had happened – once arriving back to our hotel – we packed and left. We headed home to safety.

Boston shook me – there is not doubt. I was overwhelmed that week and the efficiency with which I handle my life went awry. I took a couple of days, but I recovered, Kate’s illness and her ongoing health struggles can sober a person pretty quickly. I had to get back to the task at hand. (And maybe I had to recover from the marathon just a little – my legs were a little sore).

The thing with mitochondrial disease – SIFD – is that in addition to chronic health conditions, it also affects day to day health. I can’t predict how Kate will be on any given day. Will she be happy, will she feel well, will she be able to cope with her day, will she end up in the hospital. The range is broad and wide – and unpredictable. The last couple of months with Kate have been just that. Up and down – and down – and sideways. There is no solid footing. Every day is a challenge and it requires constant shifting of priorities and focus. School calls to tell me ‘she’s not doing well’. We hand off continuously at home with a cranky, fussy, irritable 5 1/2 year old who can’t function and get through her day. We wonder what else we could be doing for her. Maybe we should monitor her diet better, maybe she’s not drinking enough, maybe she has pain, was that a fever (?), maybe the cardiac issues that are part of SIFD are affecting her, maybe her oxygen saturation is poor, is it the seizures (?)….

We simply don’t know. We only know she doesn’t feel well. And that is overwhelming.

The thing with having a special needs child who is chronically unwell is that life is never predictable  – or maybe it is more that, as a parent, you are always worried if you are doing enough. Kate has been having a hard time lately. We describe it as a ‘mild episode’, where she has symptoms that don’t require hospitalization but which affect her quality of life on an ongoing basis. So what do we do with that? There is no medication to treat Kate with to make her more comfortable or to address/correct her severe and chronic fatigue. Her mitochondrial disease – SIFD – is the cause of the ‘spells’ of fatigue that lead to irritability, poor cognitive management, poor eating, poor behaviour, regression of her ‘skills’ (as her teachers and support workers describe it). And it can last for months. And it has lasted for a couple of months now.

The problem is she’s not sick enough. These aren’t symptoms that require hospitalization, though we have tried therapeutic IV hydration – which has worked in the past. This seems to pick her up a little bit for a short period of time, but the results are short lived. Then we theorize with her physicians about what her symptoms could mean and whether or not this might be a progression in her disease – SIFD is considered progressive. It feels like a vicious circle. We are all trying our best, trying for our best, but we simply don’t have an easy answer. We don’t know what to do to help her feel better.

And here we are. And this is why I haven’t written for some time. Focussing attention elsewhere, but still wanting to share.  Thank you for waiting and for reading.

 

Julie