Tuesday, November 28, 2017

The Wyatt's Stars Story

The Janeway Children's Hospital is very close to my heart, and I know that it is near and dear to many of you who read this blog as well. Last year, while doing my Christmas shopping, I discovered Wyatt's Stars ornaments - a fundraiser for the Janeway, and a beautiful memorial to a precious baby boy. I started my collection then, excited to add another meaningful decoration to our tree - a tree that already holds so many beautiful memories. Nestled between layers of wooden beads and strings of white lights are reminders of places and people and magical moments that we never want to forget. I didn't know Wyatt or his family, but I knew that his stars belonged on our tree.

Wyatt's father, Jimmy shares The Wyatt's Stars Story below:

The Wyatt’s Stars Story

Five years sounds like such a long time. When you begin something, when you build a plan that reaches that far, what you’re really doing is taking the first step in a journey with only a dream for a destination. You have a vague idea of where you want to be and a fragile web of thoughts and hopes and maybes that might get you there. What you do not have is any true idea, for all your vision, where the journey will really take you. The by-ways, the sidetracks, the roundabouts, all the million moments between here and there and everything they can contain.

As we move into the fifth and final year of the Wyatt’s Stars Project, I feel the undeniable pull of the path we’ve taken and I cannot help but look back, through all that it has been and where it all began.

Wyatt James Lane was our Little Star, from the moment he burst into our lives – early, in distress, and in the midst of an already turbulent time of grief and change in our family. His arrival was a flurry of cold, bright fear, desperate, furious, frenetic activity and an inconceivable blending of heartache and hope, despair and determination.

He was a fighter from the start. We could do little but sit by and watch as he struggled, survived and conquered. We brought him home, amidst even more family grief and turmoil. He was our bright spot, silver and shining and hopeful, the Little Star of our unimaginable confluence of dark and scary stories. He was our happy ending.

Or so we believed, I believed.

It was not to be. We spent two months in blissful ignorance, trying to accept - to come to terms - with all that had happened, to learn to heal. We spent another 2 months in willful denial – me more than anyone else – before Wyatt ended up at the Janeway Children’s Hospital in St. John’s again.

His home for the first three weeks of his life once again became his home. Again, we found ourselves sitting by, in that same twilight of powerless uncertainty, able to do nothing but watch as he fought for his life under the dedicated, devoted care of his expert medical team.

It is strange to use the word brave for one so little, so young, but it is one of the words that everyone had for Wyatt. Throughout all his struggles, his bright, ever-present smile captivated and buoyed the hearts of everyone who met him. His medical team, hospital staff, volunteers and visitors all commented on his strength, his joyous perseverance and the hope they had for him.

It was a hope we all shared but Wyatt, our Little Star, was sicker than anyone knew. On December 17th 2012, a week before Christmas, after 33 days at the Janeway, he passed away. He was six months old.

Our Little Star’s light had burned out, our happy ending gone. Our family, near and far, was shattered, and our community mourned with us, as did his Janeway team. For such a little boy, in such a short time, he had touched many lives and found a home in many hearts.

The days, weeks and months following were a blur of grief-stricken survival. Putting one foot in front of the other, doing the bare minimum needed to get by, to get our older twin boys through, to figure out what life was supposed to be now.

In June of 2013, Yvonne and I were watching the Janeway Telethon. It was an emotional experience. The Janeway would always be a part of us from now on, and the Telethon had a very special association for us. Wyatt’s first days at the Janeway had been during the running of the 2012 Telethon, when it had still been held at the hospital itself. It was running when Yvonne first arrived from Corner Brook after Wyatt had been air lifted to St. John’s. During her first visit to see him, we passed through the backstage area to get to the elevator that would take us to the Neonatal Intensive Care Unit.

We sat and we watched. We saw children and families going through ordeals like we, ourselves, had. We saw people celebrate the wonders that the Janeway had worked, and others return to remember those children that they had lost. We felt for all of them and we felt our own loss even more.

Wyatt had been with us for such a short time. The pain of his absence was unbearable and it was matched by the rapid-growing fear that, outside our immediate family, he would be forgotten.

We needed something. A way to remember him, to help others remember that he was here. He was ours and he was real and he made an immeasurable impact on our lives. We needed something to do with all that love and energy that was supposed to be his.

It was then that we decided that we had to do something. A project of some sort for the Janeway. An effort, in honour and memory of Wyatt, that could help other children receive the same excellence in care, the same gentle thoughtfulness and compassion that he did. That other families could be afforded the same hope we had, and maybe, just maybe, a better outcome.

That’s where it all started. That spark was all we needed. The idea came together quickly, from his story, our circumstances and one of our own traditions.

Every year, Yvonne and I bought a special ornament for our Christmas tree and marked it with the year. It was always something significant for us for that year, with elements, shapes and symbols that meant something to us. Wyatt – our Little Star – had passed so close to Christmas that the choice was clear. A Christmas ornament that included stars and other components that spoke to his story. Something that could be a fundraiser for the Janeway and a tangible memorial to Wyatt.

From there, the Wyatt’s Stars project was born. Not a one time effort – our grief, our love, needed more than that. We settled on a 5-year project. A plan for a series of five ornaments, all based around the same elements, but growing and changing each year, just as Wyatt would have done.

The main elements of the ornaments were an easy choice. Each of them special to us and steeped in meaning:

- Teddy Bears: A source of comfort for children and a symbol closely associated with the Janeway.
- Angel Wings: A memorial to our angel children who could not stay with us longer and a tribute to the medical angels – doctors, nurses and medical teams – who work with such tireless compassion to care for our sick children.
- Stars: Wyatt was our Little Star, and stars represent hope and guidance – both for medical teams and families, when children are sick. Stars are also associated with Christmas, so close to when he passed. Each year the ornament would also feature an additional star, one for his age at each year of the project.
- The project name and year would be featured on each ornament, meaning his name would carry on.

With the elements chosen, we began working on the designs and looking for a material and means of production. With Yvonne and I working together, the designs came together quickly. For production, we turned to our own past again. For our wedding, we had obtained a number of pewter pieces – glassware with emblems, jewelry, etc. – and the workmanship was exquisite. Pewter was durable and beautiful, and we’d heard of series of pewter ornaments being commissioned.

We researched the company that our pewter items had come from – Aitken’s Pewter – and the final piece of the project fell into place. Aitken’s Pewter was a family-owned and operated company in Atlantic Canada – New Brunswick – and right there, on their website, was a brochure detailing a fundraising program they offered. We reached out to them and were contacted by the company owner, Martin Aitken.

From those initial calls, through the design rendering process, packaging, production and all the other details – big and small – the Wyatt’s Stars pewter ornament series came to life.

In those early days, we couldn’t possibly have known where the project would take us. How successful the project would be, all of the people we would meet, the volunteers, the supporters, the personal and heartfelt stories from people with their own connections to the Janeway or who were touched by his story.

With the final year of the project upon us, it is almost unbelievable that we have come this far. That the years have slipped by so quickly and so much has happened. We’ve raised over $30,000 for the Janeway Cardiology department, and we’re hoping for a very successful final year. We’ve received so much support and met so many people, friends and acquaintances that will stay with us long years after the project has ended. Wyatt’s name, and the project, will be featured on a new Wall of Miracles at the Janeway recognizing lifetime donations over $25,000. His name and thousands of stars in his memory hang on Christmas trees every year, including our own, and even in windows, cars and other places throughout the whole year.

It is humbling, heart wrenching and comforting, all at the same time, to know that long after the project itself has ended, Wyatt’s story and a legacy of hope and help for others in his name will continue on.

JKL – October 2017

This is such a wonderful project, and a beautiful tribute to your son, Wyatt. Yvonne and Jimmy, you are to be commended for your dedication to the Janeway, and for raising much-needed funds for the Pediatric Cardiology department. Your son will never be forgotten, for he lives on in the hearts of many. 

Supplies of the final ornament in the series are limited, so please be sure to get yours! Email wyattsstars@gmail.com to arrange for mail order. Wyatt's Stars will be available at the North Pole Christmas Fair at the Jack Byrne Arena from December 1-3. They will also have a small number of previous years ornaments, if you are looking to complete the set! All proceeds go to the Janeway.

Saturday, November 18, 2017

Everyday Power

Have you guys been following the #EverydayPower campaign?! Each day this month, the Coalition of Persons with Disabilities Newfoundland and Labrador is sharing video and photo stories in their social media campaign, designed to raise awareness in our communities and challenge disability stereotypes. Along with photographs and collages, they will be releasing a dozen video stories throughout the campaign, each providing a short, poignant snapshot of a positive aspect of everyday life for persons with disabilities. In doing so, they’ll share their experiences, show their personal power and help build more inclusive communities.

This is Brennen's Everyday Power :

"Brennen has cerebral palsy. He is non-verbal, and uses a wheelchair for mobility. Despite his many challenges, he is a happy little boy who loves spending time outdoors. Brennen appreciates the simple things in life - the sound of moving water, the rich scent of pine trees, the changing colours of the leaves - and he teaches us to do the same"

Wednesday, November 15, 2017

Future Planning for Persons with Disabilities

As a parent of a child with a disability, it can be frightening to think about the future. I have written before about how I worry what will happen to my son when I am no longer able to care for him, when I am no longer here, or when his needs surpass my ability. It's a terrifying thought. Sure, we are managing quite well right now, but the truth is that children with disabilities grow up to be adults with disabilities, and with that comes a whole other host of challenges.

Leighton Jay is a parent of a young man with a disability. He has been a strong advocate for his son, and for individuals whose lives are affected by intellectual or developmental disabilities. He is committed to facilitating the empowerment of people who are often marginalized, and who live with significant challenges in their lives. He is passionate about enabling all people to have meaningful roles in society, exercise self-direction in their lives and develop friendships and social connections.

We were fortunate to have Dr. Leighton Jay, Global Disability Expert here in Newfoundland recently, all the way from Perth, Australia, to share his wisdom and experience with regards to future planning for persons with disabilities.

The Newfoundland and Labrador Association for Community Living and the Coalition of Persons with Disabilities NL hosted several information sessions across the province while Leighton was in town.

I attended a workshop on 'Claiming Full Citizenship for Persons with Disabilities', and another on 'Shared Responsibility'.

"When it comes to supporting a person with a disability, parents and caregivers can't always be expected to do it alone. A 'Shared Responsibility' approach looks at how individuals, families, community groups and government can all work together to make sure that people are supported and have a plan for their future."

This session also covered information on housing for persons with disabilities, supported decision making, future planning, and home supports. There were lots of thoughts expressed and ideas shared, and it was wonderful to see so many people with invested interested in the well-being of persons with disabilities coming together to support each other and to learn how we can best care for our loved ones with the resources that are available to us.

I was also happy to attend a Capacity Building Workshop, in which Leighton Jay spoke about the new Individualized Funding policy that will be implemented by the Government of Newfoundland and Labrador next year.

Individualized Funding is a new way of delivering disability supports, offering much more individual choice and focus on what the person wants or needs. Individualized Funding allows persons with disabilities to be their own boss - to have choices in who supports them, who is invited into their home, and who is (or is not) involved in their personal care. It hinges on recognizing and respecting the ability of the person to make decisions about matters which directly impact their daily life. 

"Individualized Funding recognizes that funding, services and supports should not define the individual's needs, but should respond to, and be built around them. Further, it recognizes that these needs must be identified by the individual, and not by the professionals around them. Choice and greater control by individuals over the supports and services that are part of their lives are key aspects of IF."

Individualized Funding already exists in six Canadian provinces, as well as in the United States and Australia, and it has been shown to achieve higher levels of satisfaction and enhanced inclusion for people with disabilities.  

Without getting into my own personal frustrations with the way community support services are currently delivered here in our province, I will just say that there are issues. The main problem, for me, is that the application is financially based, not needs based. For us, this means that even though my child has a severe and permanent disabling condition, we have never qualified for any type of support or service offered under the Government of Newfoundland and Labrador's Community Supports Program (CSP).

I voiced my concerns at this meeting, and while I was in a unique situation around the table, I know that I am not unique in the community. There are many families like mine who have children with complex disabilities, children who are medically fragile, and who require 24 hour care. We know many families who are struggling to meet the needs of their children - trying to balance the doctors appointments with work, school, therapies, family life, home programs, medications, equipment needs, sleepless nights, hospital stays, reports and meetings and all of the other extras that come along with their child's condition. There are extra and significant costs in caring for a loved one with a disability. The financial burden is great, and the physical and emotional demands can be exhausting. Caregiver stress and burnout is a real thing and it could be prevented if families were offered some form of support - whether it be respite care, financial assistance for medical equipment, or another intervention service. 

As parents, we all desperately want to do the right things for our children, and we try our absolute hardest but sometimes we need help. They weren't lying about it taking a village. We are not meant to do this on our own.

I am excited that people are talking about these important issues. There are some wonderful components to the new Individualized Funding policy, but there is no plan to change the application process or the qualification requirements, so while I am happy to have been part of the discussion, it is unfortunate that the outcomes will likely not affect working families like mine.

It was a pleasure to meet Dr. Leighton Jay, and to have had the opportunity to learn from him over a number of days. He has great ideas with regards to future planning for persons with disabilities, and he lives what he speaks. His experience and advice about helping to pave the way for a brighter future for children like mine is invaluable. Knowing there are new opportunities opening up for people with disabilities certainly gives me hope and empowers me going forward as I advocate for my son to have the best life possible. That is my dream for each of my children - simply, the best life possible.

To assist with future planning, the Newfoundland and Labrador Association for Community Living is offering a two-part webcast series for families on 'Creating Financial Security for Persons with Disabilities'.
Part One: The Registered Disability Savings Plan (RDSP) - Wednesday, November 29 at 7:30 p.m. NST 
Part Two: Financial & Estate Planning - Tuesday, December 4 at 7:30 p.m. NST
To register, click HERE!

Sunday, November 5, 2017

F-Words Survey


You guys! Exciting things are happening!

I have written several times now about my involvement with the 'F-Words' research with CanChild Centre for Childhood Disability Research. (See HERE and HERE).

Our goal has been to address the knowledge needs of families with children with disabilities and to support the uptake of the F-words concepts in children's health care.

The 'F-words' we're talking about are Function, Family, Fitness, Fun, Friends, and Future.

There has been a very positive response to the F-words concepts, and it is exciting to see that they are being incorporated into therapy planning by both clinicians and families all over the world.
We have recently created a Knowledge Hub, where people can go to learn about and share ideas for moving the F-words into practice.

There are six main sections in the Knowledge Hub: 1) The F-words Homepage; 2) ICF Resources; 3) F-words Footprint; 4) Family & Clinician Voices; 5) F-words Tools; and 6) F-words Research Team.

In order to ensure that the Knowledge Hub is meeting the needs of stakeholders, we are conducting a pilot evaluation. After exploring the Knowledge Hub, we hope you will share your feedback with us by completing a brief and anonymous survey.

You can access the survey HERE.

A new video was also created to bring awareness to the 'F-words'. That video has been entered into the CIHR Institute of Human Development, Child and Youth Health (IHDCYH) Video Talks Competition, and is now in the running to access funding for our research. We just need to get a few more 'likes'.

I encourage you all to click here to watch the video and give it a thumbs up!

On behalf of the 'F-words' in Childhood Disability Research Team, we greatly appreciate your time and support! Thank you!!

-Julie B

Wednesday, November 1, 2017

Halloween Recap

I'm a day late but I wanted to wish you all a Happy Halloween!

We have been enjoying the festivities - visiting the farm and the pumpkin patch, and doing our best to keep up with all that is going on this time of year. It's been a busy couple of weeks for us (not that we are ever not busy), but it seems like there are certain times when everything happens all at once.. and this is one of those times.

We didn't go all out for Halloween this year, as far as decorations and things. We are selling our house, and it didn't seem like spider webs and tombstones would add a lot of curb appeal. I may be wrong, but I didn't want to take any chances. And it looks like I made the right call, because our house is SOLD!  It's great, and we are happy about it, but with a weird sort of jumble of feelings as well. Andrew and I really love this house, and we have spent some of our best years here, but as I've said before, we need more space and it is time to move on. We are here until the end of November, and then will be staying with my parents until our hew home is ready (Thanks Mom and Dad!!).

It is a relief to have this part of the process over with. I have to say, it was quite challenging having to pack up three children and all of their equipment every time there was a scheduled viewing. It would take me a full day to get the house ready each time, cleaning and tidying, hiding medical equipment and filling the cars with mobility devices - wheelchairs, walkers, standing frames, you name it. On top of trying to fit in all of the daily appointments and therapies and home programs for each child, it was just too much. Honestly, I just didn't have time to deal with the house stuff, so I'm glad that part is over with!

Even though we didn't go overboard with the decorations, we did go for it with the costumes!

Considering all that Brennen has been through, and how well he recovered from his spinal surgery earlier this year, we thought this costume was appropriate! What a Champ!! We also had a Super Girl, and a tiny parrot who rocked their costumes and stole all of the attention at the parties we attended.

We went to the Halloween party at Easter Seals on Sunday, which is always such a great time! I just love seeing the little ones all dressed up, and to see how they've grown from year to year. Brennen is one of the 'older kids' now, which I still find so hard to get my head around. He was always one of the youngest in his group, but he is a big boy now! Many of the older kids have moved on and outgrown the Halloween parties, and maybe Brennen only has another year or two, but for now he is still interested and still loves to be a part of the celebrations (and my Mamma heart is going to milk it for all it's worth!)

We trick-or-treated at the Janeway yesterday. Every year the staff and volunteers go over the top with the decorations, treats and costumes, creating a positive, fun environment for patients and their families. Having to spend occasions like this one in the hospital is no fun for anyone, but the Child Life Department at the Janeway ensures that the children get to experience the joy of each holiday while being away from home. Every kid deserves to have fun on Halloween, and it was wonderful to see smiles on the faces of children who are battling some pretty serious illnesses and conditions.

I have to add here that I don't have all happy memories of Halloween at the Janeway. Brennen's First Assessment Clinic day actually fell on Halloween (twelve years ago), and I spent one of the hardest days of my life in an examination room with doctors and therapists who were dressed as pirates - complete with tea leaves on their faces and hooks for hands, telling me for the first time that my child has cerebral palsy. It was bizarre, and uncomfortable, and not entirely appropriate. I have since learned that they no longer hold First Assessment Clinic on Halloween, so I am happy about that!

While trick-or-treating through the hospital yesterday, Andrew and I decided to visit the NICU with our littlest baby boy. He spent several weeks there after he was born, before he was able to come home with us, and we haven't been back there since. The nurses and neonatologist were so excited to see him again! It was an emotional moment for me to see how much love they have for our boy, and how proud they are of how far he has come. I cannot say enough about the incredible staff in our Neonatal Intensive Care Unit. They provide such high quality care to these precious little babies who fight so hard to be there. I was so happy to be able to go back and show them just how well our boy is doing! It was also a sentimental journey for me, thinking back to how this baby came into our lives. Those early days spent visiting him in the NICU changed me forever, and my memories of that time are the ones I go back to when things are rough and when life feels overwhelming. This was not ever how I imagined that our family would grow, but am I ever glad that we opened our hearts to the possibility of providing a loving home to children who need us the most. We have been through a lot, but adversity has shaped me and made me strong. It’s given me the family and life I have today, and I wouldn't trade this path for any other.

I hope you all had a Happy Halloween!!

-Julie xo