Saturday, December 23, 2017

Tibb's Eve Greetings

Just a quick note, on Tibb's Eve, to wish you all a very Merry Christmas, and a Happy New Year!

This past year has been a good one. We have a wonderful life, and we are enjoying every precious moment with our beautiful babies. Brennen just loves being a big brother to these two. We don't know what the future holds, but we know that our family will be their family, and our home will be their home for as long as they need us. We are pouring everything we have into these children. We're giving it all we've got - our time, our creative energy and our nurturing hearts. This Christmas, we have so much to be thankful for, and a million things to be happy about. This is us, and life is good!

It's been hard for us not to share photos of our little ones, but dressing up as Mummers was the perfect way to do it!

"Good night and good Christmas, Mummers, me dears,
Please God, we will see you next year.

Friday, December 22, 2017

'twas the Week Before Christmas

These past few weeks leading up to Christmas have been super busy. I know, I know, everyone is busy. It's nuts. It's a crazy time of year, and we are caught up in the hustle and bustle just like everybody else, but we are loving it! It has been an exercise in coordination and a true test of our planning abilities, but Andrew and I have successfully managed to get all three children to multiple Christmas events, wrote and mailed letters to Santa, and had visits with friends and family, all while building a house and keeping up with our daily medical appointments and therapies.. even if most days we were frantically running out the door, dragging coats and bags behind us, hoping we didn't forget anything! 

Christmas will be different for us this year, for several reasons. We are staying with my parents right now, until our new house is ready, and while it is wonderful to be surrounded by family, we are also surrounded by boxes. So many boxes. Man, we have a lot of stuff. We don't know where all of our things are, but we have the necessities. We didn't unpack our Christmas decorations, but we found our stockings and our Christmas jammies. Mom and Dad have a beautiful big tree that we helped to decorate, and while it wasn't the same as hanging our own bulbs and garland, there is something nice about sharing this one big tree with our family. The tree is a real balsam fir, and it's ten feet tall, so it smells like you're in a forest, but it feels like you're in Rockefeller Centre!

Here are some photos of our Christmas so far!

We attended the Janeway Rehab Children's Christmas Party, where we were happy to kick off the holidays with some of our favourite friends!

We got out for our annual Christmas brunch at Mallard Cottage.

We Celebrated the Season with Sean McCann..

and attended another special Christmas celebration at the Janeway!

We are looking forward to Christmas Eve (seriously, it's the day after tomorrow!) - tucking our children into their cozy beds at Nanny and Poppy's house, and anticipating the arrival of Santa (because surely he will know where to find us!)

Christmas is a special time of year for us - because we make it special. Right now, neither of our youngest children understand the concept of Santa, or reindeer, or presents under the tree, but they do understand the love that surrounds them and the beauty that exists in being part of a loving family. Our children know that they are loved, and that they belong, and together we are creating lasting memories of a wonderful holiday season.

Wishing you and yours a very Merry Christmas!

Monday, December 18, 2017

The Grand Unveil

On Friday, we attended The Grand Unveil of the new Rainbow Riders Therapeutic Riding Centre!

This new state-of-the-art facility has been a long time coming. I remember when Brennen first got involved with Rainbow Riders, when he was just three years old. The barn was rundown even then. The washroom was not accessible, the building was cold, and just really needed some structural upgrades.

The original barn, inherited by Rainbow Riders decades ago, was well past its useful life. They offered a wonderful program, but its demand had grown well beyond its capacity, and so, recognizing that it was not able to adequately meet the needs of its users, Rainbow Riders launched the Raise It Up campaign to raise funds to help improve its facilities.

The campaign raised 6.5 million dollars, and was successful in creating the incredible facility that now exists on Mt. Scio Road in Pippy Park. The 14 acre site houses a 16-stall barn, a large indoor arena, an Olympic-sized outdoor riding ring, riding trails, accessible washrooms, as well as an enclosed observation room and a multipurpose room.

The new facility will offer customized therapeutic horseback riding programs to children and youth with cognitive and physical disabilities. The entire barn is accessible to all, and will provide an incredible opportunity to young riders with special needs!

Julia Crocker, a participant and dear friend of ours, spoke so eloquently at the reception. She said, "I am proud to be a member of the Rainbow Riders community, and to speak to you today on behalf of all riders. For me, therapeutic riding gives me the freedom to soar through the air and leave my worries behind. I have been riding for more than seven years and I love spending time with the horses. Because of my balance, I am not able to participate in some sports, but my horse, Pearl helps me with my balance and core strength and keeps me active. I love riding! Thank you to everyone who has made this possible. This facility means greater accessibility, more opportunities, and inclusion for all. We are very proud of our new rainbow riders facility and I know I can speak for everyone when I say we can't wait to see what we can achieve! For children with disabilities, Rainbow Riders is a place to call our very own - a place where limitations are put aside and new possibilities begin. Thank you for believing in the power of therapeutic riding and for building this magical place. I can't wait to see where we can go. The possibilities are endless!"

Here is Julia cutting the ribbon, and then taking a selfie with Campaign Chair, Paul Antle! 

Watch this beautiful video to get a closer look at the magic that happens at Rainbow Riders!

We also attended the 'Holiday Traditions Celebration' at the barn on Sunday. Rainbow Riders was excited to host their first Christmas event in the new facility, and it was absolutely spectacular. We are not religious at all, but the Christmas story gets me every time. The birth of Jesus Christ as told in the New Testament was represented by young riders and children from the community. Brennen has played a Shepherd in the live nativity for several years now, but this year he was a Wise Man! As they all took their places, a band softly played a beautiful rendition of "Away in a Manger". It was quite moving, and really made you feel the true spirit of the holidays, and what Christmas should be about. It's the very essence of childhood - the sense of wonder and the innocent belief in possibility that is so strong this time of year. This event was a special one for us, and we were happy to share it together as a family.

Congratulations to Rainbow Riders on the completion of their incredible new facility! 
We are excited for the future of the organization, and for all of the potential that it holds!  

Friday, December 8, 2017

Today's Kids In Motion

I am so honoured to be featured in Today's Kids In Motion magazine! If you're not familiar, Today's Kids In Motion is a Canadian pediatric health publication for families of children with special needs. I was thrilled when they reached out to me, asking if I would share an article for the Fall 2017 issue of the magazine.

My article is HERE! and I have copied it below. It might be a good read for anyone who is new to my blog!

Brennen's Unexpected Journey

Brennen was born full-term, two days before his due date, in Sacramento, California. It was a normal pregnancy and delivery, although I replay it constantly in my mind, trying to recall if there was something I’d missed. I was sent home from the hospital with a “healthy baby”, and we were over the moon with joy and love for our precious baby boy! Until he started crying… and crying… and crying. You might think I’m exaggerating, but it is the truth - he didn’t do anything but cry for 5 whole months. I knew there was something wrong, but had no idea what. We went back to our doctor every other day. She told me he was a “colicky baby” and he would outgrow it. That didn’t happen. Feeling like I was not being taken seriously, and getting no sort of resolution, Brennen and I left California and came home to Newfoundland where we had the loving support of my family.

Almost immediately after arriving back home, we got in to see a pediatrician at the Janeway Child Health Centre. Though I knew there was something wrong with my child, I was not prepared for what I heard on that first encounter. Words like “serious”, “urgent” and “critical”. All of a sudden we were in an emergency situation and needed a battery of tests to be done right away! We were sent to neurology, cardiology, genetics, ophthalmology and audiology, among others. Brennen had a CT Scan, MRI, EEG, EKG and ultrasound all the matter of days. It was a whirlwind of tests and probes. I couldn’t believe what was happening. I knew that Brennen was behind on his milestones (ie. hadn’t met ANY), and I knew something was not right, but I wasn’t prepared for what they were about to tell me. My perfect little baby boy had something seriously wrong with him and there was nothing I could do about it. It was such a helpless feeling. I knew they were testing for conditions that I couldn’t even bring myself to contemplate. We were referred to physiotherapy, occupational therapy and speech therapy, all to begin immediately.

When Brennen was eight months old, after blood test after blood test had come back negative, we were given the diagnosis of Spastic Tetraparetic Cerebral Palsy. Spastic meaning stiff muscle tone, and tetraparetic meaning that it affects all parts of his body. As difficult as that was to hear, it was almost a relief. They say the scariest thing in life is the unknown, and now at least we knew what we were dealing with. It wasn’t going to go away. It wasn’t going to get better, but it wasn’t going to get worse.

As well as I think I handled the diagnosis, I was surprisingly knocked off my feet by the suggestion that I join a “CP Support Group”. Was it THAT bad that I needed a support group?! Support groups, I thought, were for people dealing with some sort of horrific tragedy or loss. I wasn’t one of those people, was I? What I was about to learn was that I was going through both of those things, and all of the emotions that go along with them. The tragedy of what had happened to my perfect unborn baby, and the loss of the child that I thought I was going to have. It was a mourning process, for sure.

When I think back on those early days, when I thought I was alone in the world, and that I would never have any sort of “normal” life again, I wish I could go back and tell myself that it really was going to be ok. When I look at our life now, I could never imagine things any other way. Brennen is a happy boy who loves life and spreads that love with everyone who knows him. He brings us so much joy every day and has taught me more about life than I ever could have imagined.

The past twelve years have been filled with doctors’ appointments, surgeries, therapy sessions and ISSP meetings. We have spent a small fortune on medical equipment, adaptations and therapy devices. We have learned who our friends are and who they are not. There have been dark days, but they make the good days that much better.

Most recently, Brennen underwent a spinal fusion surgery where he had instrumentation (2 rods and 42 screws) attached directly to his vertebrae to support his spine. The procedure took six hours, and thankfully there were no complications. He has been doing surprisingly well since his surgery, which is great, but I cannot deny the true and very real pain of knowing that my child has to experience a life that has so many struggles. Brennen is amazing and he fights it with everything he's got. His resilience, determination, and courage are far greater than my own. The journey we are on is a unique one, and I have come to terms with the fact that there will always be challenges and road blocks along the way. In the meantime, I will invest all of my time and love and energy into my son and supporting every single one of his complex needs.

Brennen is now headed into Grade 6, and I am thankful that he has wonderful teachers who love and support him. Brennen gets lots of attention and cuddles and love at school, and really, that is what I want for him. I want him to be happy and to be surrounded by love. That is all. Anything beyond that is a bonus.

This whole unexpected journey has taught me so much about myself, my relationships, and about love in general. I never could have fathomed that in such a short time, Brennen would change my world in the best way possible. He continues to teach us what strength truly is and we are so inspired by our brave little boy. Life is good, because he is in it.

A huge thank you to Today's Kids In Motion for featuring us in their magazine! I am thrilled to be part of such a wonderful publication that deals with issues facing parents of children with disabilities in a positive way, and celebrates the joys of one of life's greatest gifts.

-Julie xo

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 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

Thursday, October 12, 2017

Canadian Blind Hockey

When Brennen was very young, and I was still coming to terms with his diagnosis, I had no idea the impact it would have on all of our lives. I knew nothing about raising a child with a disability, nothing about navigating the world with a child with special needs.

With his diagnosis, the dream I had for my child and for my family was shattered. I had to reorganize my expectations, and it wasn't easy. Believe me. Letting go of years worth of day dreams doesn't happen overnight. It was a gradual process of acceptance to get to where we are today, and I can look back now and see how I struggled with so many pieces of our life at that time.

Little things, like when it came time to purchase a new vehicle - I was adamant that I didn't want to drive a minivan because I was not a "Soccer Mom". I wasn't going to be lugging around sports equipment and dropping my kid off to practice on Saturday mornings like other moms. At a time when I was faced with so many uncertainties, one thing I thought I knew for sure was that I wasn't going to be one of the moms cheering their child on from the bleachers. And I was mad. When life throws you a curve ball, it is easy to focus on what you don't have, and I know I did this for quite some time. 

This stubborn frustration carried over into other aspects of our daily life, whether I wanted it to or not. I remember picking out sheets for Brennen's first 'big boy bed', and steering clear of anything with balls or pucks or other sports paraphernalia. I was so sure my boy would never be able to use those things, and I didn't need the cruel reminder staring me in the face every night. It was all hard enough, dealing with a new diagnosis, and getting my head around what life was going to be like for my child. I certainly did not need footballs on his sheets to make my life even worse than it had become.

It's funny, the way our minds work. I had myself convinced that so many of life's opportunities would not be available to Brennen. But I was wrong!

This week, my child played hockey!

Canadian Blind Hockey (previously known as Courage Canada) is a national registered charity that leads the development of the sport of Blind Hockey and provides children and youth with the opportunity to learn to skate and try Blind Hockey.

Blind Hockey is one of the fastest growing Parasports in Canada. It is played with the same rules as traditional ice hockey, with only minor modifications to make the game more accessible, and is played by athletes who have a vision impairment ranging from legally blind (approximately 10% vision or less) to totally blind. The major modification is the puck. Made out of thin steel, it is hollow and filled with ball bearings to make noise, it is larger than a traditional puck measuring 5 ½ inch in diameter (nearly double the usual 3 inch diameter), and moves more slowly across the ice.

In partnership with the CNIB and AMI - Accessible Media Inc, Canadian Blind Hockey runs youth blind hockey programs, summer camps and tournaments from coast to coast, and this week, they were here in Newfoundland offering a learn to skate field trip at the Paradise Double Ice Complex.

It was so wonderful to see the children enjoying their time at the arena. For many, it was their first time on the ice, and you could see their faces light up as they swished and swerved around the rink, free as the wind and loving every minute.

Brennen has taught me many things over the past twelve years, and has opened my eyes to the world of opportunities that exist for individuals with disabilities. Schools provide educational and social opportunities, but there are many incredible organizations that provide extra-curricular and leisure activities for kids with different abilities.

There is no limit to what individuals with disabilities can accomplish and achieve, especially when they have access to programs that support their learning and development. Brennen may not go to university. May not drive a car. May never live on his own. But what matters most is that he is happy, that he lives a fulfilling life, and that he always feels loved and included. Our expectations have changed, but we have vowed as a family to give him all of the opportunities we can to learn, grow, and flourish.

It is easy to get lost in the stresses of life and to focus on the hard parts instead of the good. Motherhood is so much different than I ever expected it to be, but woven throughout the chaos are lessons about the world and life and who we are in the context of a much bigger picture. It is nothing like I had planned, but I am open to these lessons that life is intent on teaching me.

Thank you to Canadian Blind Hockey, the CNIB, and AMI, for providing access to sports for youth who might not otherwise be able to participate. We had an awesome day!

Thursday, September 28, 2017

Little Rumble

Yesterday, we said goodbye to our Little Rumble.

Rumble was a retired race dog, who we adopted seven years ago through the Newfoundland chapter of Greyhound Pets of Atlantic Canada (GPAC-NL). He spent the first three years of his life on the track, before retiring and finding his forever home with us.

Rumble has been such a big part of our family, and he has been a wonderful companion to Brennen. He was always so gentle and careful with him, and would walk along with his wheelchair, never pulling ahead or veering off to the side. Rumble was not just a good dog. He was the best dog, and we loved him very much.

Rumble has been on a steady decline these past couple of months. It started with him just acting a bit funny - staring off at nothing, pacing around the house at night, a lack of appetite, losing clumps of fur, and it seemed to go downhill from there fairly quickly. We brought him to the vet for a check about a month ago. They did some blood work, which didn't show anything obviously wrong, and we were referred to the Veterinary Specialty Centre, where they performed an ultrasound just last week. The results were inconclusive, meaning that, again, there was nothing obviously wrong.. but there was obviously something wrong. By this point, he had stopped eating altogether, and had lost a ton of weight. Andrew and I have been up with him all night, every night this week, and he was not doing well. We could not allow him to suffer any longer, and so we consulted the vet and determined it was time to say our goodbyes.

We are heartbroken, and feeling a tremendous sense of loss right now. Rumble was our boy. Our big baby.

Rumble loved to run, and we loved to watch him! He was in his element when let to run free. In his earlier years, he could fly like the wind, doing loops around us but always coming back to stop at our feet. He was built for speed - a canine athlete who could hit 45 mph in a double suspension gallop. Greyhounds are the second fastest animal on Earth, just behind the cheetah, and Rumble loved to show us what he was made of!

We are still a little in shock, not really believing that he is not coming home. There is an emptiness in the house, although it is full of activity. We miss our sweet Rumble. Our family is not the same without him, but we are better for having had him in our lives. He was the perfect dog for us - loyal and loving and super laid-back. He was a gentle giant who craved attention and would sit up on your lap if you let him. Rumble had no concept of how big he was, and would try to squeeze into the smallest spots just to be close to you.

I will miss his wet nose nudging my elbow. I will miss the sound of his heavy paws on the hardwood floor. I can imagine that for many years to come, we will be saying things like, "Remember when Rumble ate a whole cheese log off the coffee table?!" and "Remember that time Rumble got away from Mom and Dad's house?!" - To follow up on that, we were all out by the lake, and he wandered off. It was no time before I received a text saying, "Julie, is Rumble missing?" I'd hardly had time to realize that he was missing! Someone nearby saw a Greyhound walking casually down the road (by himself), and knew that wasn't right. They picked him up and called our friends at GPAC-NL. One of the members recognized him, and knew to contact me. Unreal. It was seamless - like the whole thing had been planned. My love goes out to our GPAC friends and family. We are so thankful for your support all these years. You guys do great work, and I am so proud to have rescued our sweet boy through such a compassionate organization.

Rumble had a wonderful life, and he certainly enhanced ours. We will miss him forever, and remember him often.

A dog doesn't care if you are rich or poor, educated or illiterate, clever or dull. Give him your heart and he will give you his.”