Hiking the Sugarloaf Path

A little life update -

I feel like I haven't been posting here as often as I used to, and it's not for lack of things to write about, but because I have been super busy with all of life's adventures! We are finally (somewhat) settled in our new home, and it is lovely! We are thrilled to have our own space again, and to be able to make this beautiful new house our home. I will share pictures here as soon as I can - once we get a little more organized and finish unpacking the last of the boxes. There are still a few projects to be completed and personal touches to add, but things are coming together nicely!

We have had some major transitions in our family over the last couple of months. Our journey as foster carers is ever evolving, and we are learning to roll with what comes our way. Andrew and I have been through what was possibly the most emotionally draining period in our lives since we've been together, and it tested our strength as foster parents (and as people in general!), but we came through it stronger than ever. After 14 months of being his parents, our littlest babe has found his forever family. Our hearts were broken, but we are so happy for him, and we take comfort in knowing that we gave him the best possible life while he was with us. For Andrew and I, getting to spend that precious time with him was one of the greatest joys of our lives.

Since then (just a couple of weeks ago), we have welcomed another young person into our home. It's been a wild ride, and we are all still in the adjustment phase, getting to know each other, and learning how we can best support each other. We are being tested, as we knew we would be, but we are confident in our abilities to love and support this child in all the ways that he needs us most.

Andrew and I had a rare few hours to ourselves today, and the sun was shining, so we were excited to head out on the trails!

The Sugarloaf Path is part of the East Coast Trail that links St. John's to Logy Bay. We picked up the trail just minutes from our house, at Memorial University's Ocean Science Centre. It was a super nice day, but the wind was something fierce! There were several points on the trail that we thought we were actually going to blow off the cliff and into the ocean. (Not cool).

Here are some photos from our hike today!

We are so thankful for days like these. We NEED them. As often as people tell us that we should take time for ourselves, it rarely happens. It's nearly impossible. There are three children who depend on us, and that's ok. It's more than ok. But getting to spend the day outdoors together, alone, doing something that we love, in the peace and beauty of nature is exactly the recharge that we needed to keep going.

Thank you all for following along in our journey. Here's hoping for more sunshiny days ahead!

Janeway Imagine Squad

Anyone who knows my family knows that we spend a great deal of time at the Janeway. With Brennen's surgeries (see HERE and HERE), regular therapy sessions and specialist appointments (in addition to caring for other children who have significant medical needs), we have become frequent fliers of our local children's hospital.

I have written many times about our connection to the Janeway (ie. HERE and HERE), and am always happy to share our experiences and to give thanks to the wonderful medical staff who have cared so well for my family. 

A couple of months ago, I received a lovely phone call from our dear friends at the Janeway Children's Hospital Foundation, asking if Brennen would be interested in being part of the Janeway Imagine Squad.

Of course, we said YES! 

The Imagine Squad aims to highlight the power of imagination, and features several Janeway kids pretending to interact with their imagination, represented through illustrations that were added to the photos afterwards. I was so excited when we got the call! I know how creative young minds can be, and how their curiosity drives them to explore their world and learn about everything around them. This creativity can be dampened when children are sick, or must spend endless days in a hospital bed. Every child's imagination needs to be stimulated, and when children are unwell or are going through a tough time, the bad stuff needs to be balanced with good experiences and positive images so that they can escape in their minds into a fascinating alternative world. The ability to move from reality to fantasy and back again comes easy to children, and this ability to lose yourself into another world is an asset when the real world can be difficult or depressing.

Sara Rostotski was the official photographer for this campaign and the creative team at The Idea Factory brought the images to life!

Many of the photos taken during this shoot will assist in building awareness of how important the Janeway Children's Health and Rehabilitation Hospital is to all of our province's children.

Here is Brennen, imagining himself floating through outer space - weightless and free from the constraints of his wheelchair. There is no pressure on his body or pain in his joints from continuous sitting. He is ready for all sorts of fun space adventures!

Adorable Asha and Kaleb are also part of the Imagine Squad. Each child has their own Janeway story and we are excited for you to see them in the coming weeks leading up to the Telethon.

Keep an eye out for these images on billboards and in print media around town, and make sure you tune in to the Telethon on June 2nd and 3rd to witness the real impact the Janeway has on the lives of so many children in our province. Just imagine what your donations can do!

Jooay: Connecting Children and Youth with Disabilities to Leisure

This past September, I attended a Brainstorming Event: "Working Together to Promote Participation", held in Montreal (see HERE). Our discussion focused on the best ways to promote leisure participation of children with disabilities and to engage families in the community.

The meeting was hosted by the Jooay Team, lead by Dr. Keiko Shikako-Thomas, Canada Research Chair and Assistant Professor at the School of Physical and Occupational Therapy of McGill.

"Participating in sports and other leisure activities is an important part of childhood development; however, accessing appropriate activities and information is a challenge for children with disabilities. We created "Jooay", a mobile and web-based app, to provide families with information about appropriate leisure activities available in communities across Canada."

The Jooay App was launched in Spring 2015 to overcome the lack of access to information about inclusive leisure activities, and to create an online community of support through a mobile-health solution. Jooay is an App where parents, youth and other users can exchange information, rate and comment on activities, creating a community and building networks around adapted and inclusive leisure opportunities.

Participation in sports and other leisure activities is critical to the physical and mental health of all children, and essential to their social development. However, it has been found that engagement in leisure activities is low for children with disabilities compared to peers of the same age, both in terms of frequency of participation and diversity of recreational activities in which they partake. Families, healthcare professionals and educators have indicated that the lack of information about existing resources is a significant barrier to children’s participation and that a peer mentorship program could help facilitate this process. To address this issue, the Jooay App was created by Dr. Keiko Shikako-Thomas and Dr. Annette Majnemer, faculty members at the School of Physical and Occupational Therapy at McGill University.

I believe that participating in recreation and leisure activities is important to all individuals, regardless of ability. It is not only important in maintaining fitness, but it is also a means through which people have fun, meet new friends, and develop skills and competencies. As a parent of two children with disabilities, I also know how challenging it can be to find activities that allow my children to get involved and have fun. My son, Brennen has been involved in a number of adapted recreational programs over the years, and while our goal, always, is to provide him with meaningful life experiences and encourage social interaction, having him involved in sport and other extracurricular activities has increased the quality of life for our whole family.

I am now the Jooay Ambassador for Newfoundland and Labrador, and will be working collaboratively with the Jooay Team to help identify adapted leisure activities, to provide information about Jooay and adapted activities to children and families in our region, and to actively help promote participation for children and youth with disabilities across Canada.

Please contact me if you would like more information on the Jooay App, or if you know of an inclusive or adapted activity that can be added to our database. I would love to hear from you!

This project is part of the Child-Bright Network: A Canada-wide, patient-centered research initiative, including 12 research projects to improve the life conditions of children and youth with brain-based disabilities and their families.

Jooay is part of the Childhood Disability LINK community.

The Great Accessible Egg Hunt

It seems like everyone in the world is talking about Spring, excited about it's warm temperatures and pastel colours, bright sun, blue skies, t-shirts and tennis shoes. Here in Newfoundland, Spring is not really a season that we have. It's still freezing cold outside, and we'll be wearing winter coats and boots for another few weeks yet. We typically have snow storms well into Spring, and while the past few days have been pretty decent, we are not out of the woods yet. Seeing the stores full of gardening supplies, sun hats and open-toed shoes is just a tease, but it makes me hopeful that warmer temperatures might eventually come our way.

I do love all things Easter, however - the chocolate bunnies and Whopper eggs, crisp white dresses, fresh tulips and lilies, and cheap plastic eggs with tiny toys inside. I love that crap.

When Brennen was younger, I never really made a big deal about Easter. I mean, I would put together a basket for him, filled with peeps and kinder eggs, but I knew that he couldn't open them, couldn't eat them, and couldn't play with the toys inside. Brennen wouldn't look for his Easter basket, or hunt for eggs. He wasn't able to, and there was a sting to that, like I was being robbed of one of the joys of parenting that everyone else was taking pleasure in. It was an expectation of mine - just one of the many ideals that were woven throughout everything I thought I would get to enjoy with my child when I became a mother, and it was hard to accept that some things were just not going to go as planned for us.  

It took me a while (..years) to understand that having a child who experienced the world differently would also cause me to experience things differently, to expect differently, to process and perceive the world differently, but once I came to that realization, everything seemed to make sense. I settled into my role as a "Special Needs Mom", and began to flourish right along with my child.

This weekend, we took our kiddos to an Accessible Easter Egg Hunt at the Manuels River Interpretation Centre. This very special egg hunt was designed specifically for children with mobility challenges, and of course, was open to their families and siblings. Easter eggs were hidden along the trail at various heights and levels, some with balloons tied to them so they were easy to find!

This was our second year doing the Accessible Egg Hunt, and we had such a great time! The trails are hard packed and well groomed, making it easy to push a stroller or wheelchair, and the staff of the Interpretation Centre were super enthusiastic and excited to make this the best day ever. We especially appreciate the time and effort that went into ensuring that this was an enjoyable day for all families! 

Here are some photos of our Easter Egg Hunt!

Happy Easter from our family to yours! However you celebrate, I hope everyone has a beautiful weekend with the ones you love!

Your Voice Matters

Your voice matters:
CP Canada Network Survey

 

CP Canada Network is in the process of developing a new website. The goal of this website is to provide up-to-date information about cerebral palsy (CP), and to promote connections within a national community. Although we are aware of the generic information found online regarding CP, we understand that resources and services vary from one province to the next. We hope to provide province-specific information. This survey is to help us better understand how you are currently accessing information about cerebral palsy, what type of information is most sought out, and what type of information is most difficult to find.

The Cerebral Palsy Canada Network (CP Canada Network) would like to invite you to respond to a survey about what families of children with CP, and adults with CP would like to know in terms of services, programs and general information. We also want to understand the types of services they use, the costs of these services, and what their service needs are.

This survey is part of a research project called "The Childhood Disability Communication Hub". Information obtained from this survey will help us in selecting the most appropriate information to be included on the CP Canada Network website, and to better understand the scenarios of service utilization and needs for children and adults with CP in Canada.
Your participation is very important!

Please complete the survey by following the link below:

https://is.gd/CP_Canada_Network

If you would prefer to respond to this survey by phone, you can contact Jinan Zeidan, the postdoctoral researcher who is working on this project by email, and she will contact you to schedule a call at a time that is convenient for you. Please email Jinan at: Jinan.zeidan@mail.mcgill.ca

For more information on this project, please contact Jinan Zeidan (Jinan.zeidan@mail.mcgill.ca) or Dr. Keiko Shikako-Thomas (keiko.thomas@mcgill.ca)

Rainbows for Sammy

The Stella & Dot Foundation was established by Stella & Dot in 2010 to engage and inspire the community to affect positive change in the lives of women and their families. In addition to their year-round global charity partners, Stella & Dot also donates to Autism Awareness Month each April. To date, the Stella & Dot Foundation has donated over $2.7 million worldwide to causes important to their community.

You guys know how much I love my Stella and Dot! Not that I ever really needed a reason to purchase one of their cute accessories, but I do know that shopping can be even more rewarding when your purchase helps out a local charity.

My friend, Pamela is a Star Director, Founding Leader, Mentor & Personal Stylist with Stella and Dot.
She is also an aunt to a very special little boy named Sam.

Pam writes:

"Anyone who knows me, knows all too well I love my family and all my sweetHART nephews that fill my life with so much joy and happiness. One of those boys in particular holds a VERY special place in my heart and his name is Sam Hart (aka Sammy or Sam the Man) - my gorgeous 7 year old nephew!!! Because of my love for Sam and because of my love for giving back, again this year I will be fundraising on behalf of the Autism Society of Newfoundland & Labrador. And again, I will be doing this in Sam's honour - my 3rd year of "Rainbows for Sammy"!

This year I really want to make a bigger impact and am on a mission to donate a minimum of $1000 to the ASNL (I donated $700 and $750 in 2016 and 2017). For this to happen, between now and the end of April, I need to sell at least 150 of our adorable new Unity wishing bracelets and host a minimum of two style sessions where I will donate 100% of my commissions from sales at these events."

This is where we are looking to YOU for support!!!

* Contact Pam (email pamela.meester@gmail.com) or comment below if you would like to pre-order a bracelet or two or three!
* Accept Pam's challenge to sell 10 bracelets in March and as a thank you, she will gift you one for FREE!
* Partner with Pam in hosting a fun Autism Awareness 'Shop for a Cause' trunk show (in home or online) with your family and friends and she will donate all of her commissions from your event to ASNL.

Easter and Mother’s Day are just around the corner, so the timing couldn’t be better!

These bracelets are super cute, and would make a great gift for teachers, friends, family members, and anyone touched by autism. The brilliant colors unite into one prismatic rainbow, and act as a reminder to stay united and inclusive in all that you do.

Share this post with your family and friends to help spread the word and show your support for The Autism Society of NL, and families living with autism in Newfoundland and Labrador!

The Autism Society of Newfoundland and Labrador (ASNL) is a provincial, nonprofit, charitable organization dedicated to fostering the development of individualized, lifelong, community-based supports and services for persons with autism spectrum disorder. ASNL is committed to the promotion of acceptance, independence, productivity and opportunities for inclusion in all facets of life for persons with autism spectrum disorders and their families.

March Madness

Early in the New Year, Andrew and I got out for a skate on Virginia Lake with all three of our children, and it was one of those experiences we will remember forever. I am always a little skeptical of how days like this will go, especially when getting everybody dressed, and the bundling with all the layers seems to take forever, but it was magical. We had the perfect weather conditions, the perfect ice surface, the perfect outdoor fire, the perfect day.

And we were looking forward to many more days full of wonderful outdoor winter activities just like this one! We had borrowed a sledge from Easter Seals with the best of intentions to take our little ones to a family skate at the indoor double ice complex, and I had big plans for Andrew and I to spend every cold, crisp day outside pulling our children in sleds through the snow. It was going to be great!

Until our winter activities started to look more like this:

Honestly, this cold and flu season has really been kicking our butts. Our girlie was admitted to the hospital several times last month with a series of pretty terrible respiratory infections. We spent a total of 13 nights in the hospital, watching the monitors and keeping a close eye on her oxygen levels. It's been going around, and all of us had some form of a cold, but with her weakened immune system, everything just hits her ten times harder than it does the rest of us. To be honest, having her in an isolation room at the hospital was safer than being at home, where the rest of us were sick as well.

It's been an intense few weeks. Our new house is not yet ready, so we are still staying with my parents. That means there's been seven of us in the same house breathing cold germs on each other. Not ideal. 

Our girl seems to have turned a corner this week, and is on the mend, thankfully. We are hoping to be able to get out and enjoy the last bits of winter while there is still snow on the ground and everyone is feeling well. Our long winters in Newfoundland are so much more bearable and enjoyable when you can get out and take advantage of the beauty of our natural surroundings.

These past few weeks have been even more emotionally charged because our littlest babe has just transitioned out of our home and in with his new adoptive family. This requires it's own post, and I am working on that, I just need a little time to sit with my thoughts and feelings and process all that has happened over the past couple of weeks. It's been a wild ride, let me tell you.

As emotional as it's been, seeing our children happy and healthy and thriving in this life helps me confidently say, it is so worth it. Every day is an adventure, and some days are complex and painful and really damn hard, but we are grateful, and wouldn't trade this path for any other.


 “Life is amazing. And then it's awful. And then it's amazing again. And in between the amazing and the awful, it's ordinary and mundane and routine. Breathe in the amazing, hold on through the awful, and relax and exhale during the ordinary. That's just living heartbreaking, soul-healing, amazing, awful, ordinary life. And it's breathtakingly beautiful.” - L.R. Knost