Thursday, January 17, 2019

Send Happiness Project


You might remember my post last year about Petit Mail - a kids story postcard subscription created right here in Newfoundland by local mom and entrepreneur, Alison Butler. Brennen and I loved receiving the postcards in our home mailbox, and we had lots of fun together exploring the activities that the cards suggested.

Brennen is a fun kid. He has changed the lives of everyone in our family. We were not expecting his disability when he was born thirteen years ago, but because of it, I have learned so much about myself, the world around us and what really matters.

Brennen has been doing really well lately, and we are fortunate to be able to enjoy these fun activities at home, but part of raising a child with a disability means that we spend quite a lot of time in the hospital. In recent years, we have spent more time than I would like to count admitted to the Janeway for one medical procedure or another. Brennen has had several major surgeries (like this one) that have found us living in the hospital for days that turn into weeks that turn into months. It is part of our life, and one that we have come to accept, but it never, ever gets easier.

Being 'frequent fliers' of our local children's hospital means that we have gotten to meet some truly remarkable families, each facing their own set of healthcare challenges. We know families who have children with complex disabilities and medical conditions, children with cancer, and other life-threatening illnesses. We know children who go through some of the hardest situations imaginable, and they do it with a kind of resiliency and strength that I've never seen before. These children clench their teeth through countless blood draws and examinations, and they withstand treatments and procedures that would make the best of us weak. These kids are tough but vulnerable and they have touched my life in a truly profound way.

Wanting to give back, Alison recognizes that there are many children in our community who could use a pick-me-up, and has created the Send Happiness Project -  delivering snail mail to children who might need an extra smile in their day!

Brennen and I will be personally helping to deliver these special cards, but we need your help! Every purchase will be matched with a donation (1 purchased = 1 donated).

Our goal is to brighten the days of 500 children in 2019!


https://petitmail.ca/product/send-happiness-project/


I'm going to be honest with you. Brennen and I were planning to deliver a postcard to our dear friend Kaiden Little this week, but his mom wrote me on Monday afternoon to let me know that he'd passed peacefully away. Our hearts are broken for his family. Kaiden was a true warrior. He had been diagnosed with Neuroblastoma at the age of three, and he fought hard like a true super hero right to the end. Kaiden was six years old.


There are so many children in our local children's hospital who could use a smile today. If I have learned anything from having a child with a disability, it is that more than anything, these children need love. They need to know that they are valued, they matter, and that people (many people!) care about them.

Purchase a “Send Happiness Project” story postcard or letter and we will deliver a Petit Mail story to a child, in person, to brighten their day!

Monday, December 10, 2018

Fostering Family


I've been struggling a little bit lately, trying to get into the Christmas spirit, but it's not coming as easily for me as it has in past years. Things have been somewhat challenging at home, and it makes for a difficult transition into the holidays. I know that this is all part of what we signed up for when Andrew and I made the decision to become foster parents, and I know that I am probably just having a "moment", and this too shall pass, but there are times, like today, when I feel a little off-kilter.

Brennen has been doing great, thankfully. He is thriving. We are trying to keep things as "normal" for him as possible, in this completely abnormal way of living. It's just not natural. Foster care, essentially, is trying to make a stranger feel like part of your family, and as you can imagine, in some cases it is nearly impossible. We have had some very positive experiences as foster carers, no doubt, and that is what gets us through the tough times. Knowing that we do have the potential to have a positive influence on the life of a child is why we feel compelled to continue doing what we do.

We are taking a different approach to Christmas this year. I am not going overboard with gifts and homemade fancy everythings. We are choosing our events and holiday parties carefully, being sure to spend more time with those we want to spend time with, and less with those we don't.

This weekend, I had approximately two dozen things marked on my calendar that I wanted to accomplish, including holiday events and activities to attend, a list of things I needed to purchase, cards that needed to be sent, gifts that needed to be wrapped, batches of cookies that needed to be made, projects that needed to be completed, and reports that needed to be written - and I didn't do any of it. On Saturday, we had a rare day with just Brennen at home. The sun was shining and there had been a big dumping of snow the day before, and it was super Christmassey! Just after breakfast, I called my sister and said, "Come over! Our backyard looks like a snow globe!"

And so she came. With her husband and kids and their electric enthusiasm, and we had the best day! We ignored our schedules, avoided prior commitments, and we played in the snow. For hours! Several times, mid-snowangel, shouting, "We are not in the mall!!"

So many photos!


So, you guys, I apologize if I have missed your gatherings, or not taken you up on that invitation for tea. I am just working towards a slower and calmer Christmas season this year. It has been a while coming, but I have realized that when you are running on nothing, it is ok to just hang out and rest, making family time a main priority, and not getting bogged down with all of the expectations of the holidays.

At the end of the day, I know that what I am doing as a Mom is most definitely worth the hardships, worth the deprivation of self-time, worth it ALL, yet I still need these moments to refresh and catch up and to redirect my thoughts for a fresh outlook tomorrow.

I wish you all a happy December.. and maybe even a silent night!
All is calm, All is bright?! (Ok, I won't go that far!)

Saturday, December 8, 2018

NL Human Rights Award Winner: Kim White

On December 4th, the Human Rights Commission of Newfoundland and Labrador announced the nominees for the 2018 Human Rights Awards. The annual award recognizes an individual who has made and/or continues to make a meaningful contribution to advancing and furthering human rights in the province.

"Each year, the selection committee faces the ultimate task of reviewing numerous well-deserving applications for this award. It’s never easy to choose and we are grateful to all of the applicants for their exemplary work to further human rights in our province. We are very pleased to be able to recognize people who have made such significant contributions to enrich our communities.
Kim Mackay, Vice-Chair, Newfoundland and Labrador Human Rights Commission

This year's nominees included:
Blair Curtis - an 18-year-old university student and trans rights activist.
Gemma Hickey - a widely known St. John’s-based activist, poet, and soon-to-be author.
Anastasia Qupee - an Innu from Sheshatshiu, Labrador and the first female chief of her First Nation.
Craig Reid - a long-time advocate for inclusion for persons with disabilities.
Joanne Thompson - Executive Director of The Gathering Place.
Dane Woodland - a 27-year-old transgender activist residing in St. John’s,
and this year's Human Rights Award Winner, Kim White!


Kim White was born and raised in the rural community of Twillingate, but currently lives in St. John’s. At age three, she acquired a disability due to a spinal cord tumour. Experiencing life with a disability has definitely fed her desire to help create a “just world” but she also credits her parents’ passing along a strong sense of altruism and compassion. Educated at Memorial University with a Bachelor of Arts and a Bachelor of Education, Kim fulfilled a life-long dream to become a teacher. Fate intervened and led Kim on a career journey that was definitely ingrained in justice, but was outside her original vision of being “a traditional classroom teacher”. Kim’s life’s work has been mainly in the non-profit sector focusing on adult education, employment and career services, poverty reduction, and community development. Kim is the former Executive Director of the Coalition of Persons with Disabilities. While with the coalition, Kim’s work focused heavily on education and awareness; leading task forces, developing resources and facilitating info sessions and workshops for projects such as Emergency Preparedness for Persons with Disabilities, Inclusive Electoral Processes and Inclusive Customer Service.

Kim is also passionate about making change through volunteering. Kim's past volunteer work has ranged from being a Sparks and Brownie Leader to holding various positions with literacy organizations/ committees (including the PGI Golf Tournaments for Literacy) to being Chair of the provincial government's Buildings Accessibility Advisory Board. Kim currently sits on the board of The Duke of Edinburgh’s International Award as well as being Chair of Power Productions which is a new non-profit focused on making the performing arts more inclusive and accessible.

Kim has used every available platform - at work and in her personal life – to “teach” people how to shift the way they think about accessibility. Kim’s message is that all existing barriers we face in society have been created and they can be removed and prevented if people choose to remove and prevent them; if people choose to change their attitudes, if they choose to work together and if they truly understand that in doing so, they are choosing to make the world better for themselves and everyone.


On December 6th, the 2018 Newfoundland and Labrador Human Rights Award and Human Rights Champion recipients were announced at a ceremony at Government House. In her powerful acceptance speech, Kim spoke about how she tries to be "an authentic voice for those who cannot be heard." She said, "I recognized a long time ago that I could use my life to share a message with the world. That by doing so, people might see things differently and understand things differently. I thought my life could possibly help change the lives of others. Recognizing this has made my life very purposeful, very fulfilling, and has certainly provided me with lots to do!"

Kim went on to speak about her life's message, saying that while there are many, "One message is that I have an expectation to live a life of my choosing and live to my fullest desired potential.. expectations, such as getting an education, having a family, going to work, living a healthy and active life, and many other things.. that is to say, living with the expectation to choose to do all the things that other people get to choose to do, to live a full and meaningful life. And when those expectations are not met, for me and for others, because of barriers, I will push back and speak up because I know those barriers - those systems and those structures - are person made and they can be person un-made.. and must be person un-made."

"It is important for all of us to be reminded of our humanness and to see compassion in action, to have role models who display their 'will' for others to see.. and to look to others to help us collectively move towards a goal to do things differently, to do things better."

Kim spoke about love in the form of compassion, respect for others, justice and equality, and the fulfillment of our human rights. "And fulfillment of our human rights is not about charity. It is about removing barriers.. so individuals have equitable access to make choices; choices that others who do NOT face barriers get to make. This is a message that is hard for people to grasp sometimes - "equitable access", "equitable opportunity" - to be honest, I still struggle sometimes with how this applies in the real world my ownself but because it might be difficult or push our thinking does not mean it should not or cannot be done."

Kim ended her speech on a very poignant note, saying "My final message is that I am not extra-ordinary.. I am not Gandhi, I am not Mandela, and I am NOT Malala.. I am just Kim, but that is ENOUGH - it is enough to make change. I do not have to be extra-ordinary and none of us have to be. We can all live very ordinary lives and yet make great change if we are aware that ALL our lives are ALL our messages - and if we are aware of what that message is saying! Every day our words and actions tell the world something about us, about what we believe, what we value - what we will stand up for and what we won't accept. And I would ask you to stop and think about what you want your message to be and then go share that message with the world in any ordinary way you can!"


I was honoured to attend a celebration for Kim on Thursday evening at the Paul Reynolds Community Centre. I am so fortunate to call this beautiful woman my friend. I have learned so much from working with her and witnessing how she uses her gifts - both personally and professionally - to help better the lives of people with disabilities. She has so much empathy. I've never met someone who thinks about others' situations more than she does, and she doesn't just think about it. She does something about it. Kim is honest and real, and she is good at asking questions like, "How can I make that person feel loved?"

I love Kim for her heart and her vulnerability and the way she both pushes herself to be her best and yet accepts herself for who she is. I wish I could be more like that.

Congratulations Kim, on this well-deserved award. You are the definition of "compassion in action". You are a role model to me, and to so many others, and you make me want to do things differently, to do things better. Thank you for being my friend and for sharing your positive energy with all of us. Your work and your voice bring hope to so many.

Friday, November 16, 2018

Diverse-City


On Monday, October 22nd, I attended an issue of Live Magazine! - an ongoing multi-disciplinary series that features an evening of entertainment curated by different artists in the community. This particular issue was curated by Paul Power of Power Productions, and was titled 'Diverse-City' - celebrating diversity in our arts community. 

Paul David Power has spent the past 25 years working as a writer, actor, director and communications professional in various mediums including dramatic script for the stage. His most recent project, "Crippled" made its professional debut at the LSPU Hall this past February. Paul has worked with many national arts organizations including the Canada Council for the Arts and the National Arts Centre to examine and further the disability, Deaf and MAD arts sector. His company, Power Productions, is committed to creating and supporting diverse and accessible theatre projects, with a focus on the disability, Deaf and MAD arts sector.

What a stellar line-up of performers in one tiny show!

While most teenagers are into the Top 100 hits, 13 year old Brandon Bowen loves to jam out the traditional tunes on his accordion. Brandon has cerebral palsy but he doesn’t let his disability get in his way when it comes to his musical talent. He has been playing his accordion for 4 years and has played in many festivals including the NL Folk Festival, Eastport Accordion Festival, George Street Festival, Music and Friends Festival on Bell Island, the Janeway Telethon, O’Reilly’s Pub and he even had the opportunity to play with some popular Newfoundland bands such as Shanneyganock, Rum Ragged and the Masterless Men. Brandon has his own band – 'The Brandon Bowen Band' with his good buddies Russell Molloy and Dave Spurvey. They are always helping out with volunteering to play at events and senior homes. Brandon has also recently branched off into the acting industry, playing the role of Connor in the CBC show, Little Dog. He is also starring in the current NAPE commercial. Keep your eye out for it!


Kyle Saunders is a stand up comedian, improviser and actor who is currently studying Psychology at Memorial University. He has been volunteering and advocating for mental health since receiving his diagnoses of bi-polar disorder at the age of 14. He says that he has been on a "wild hilarious ride of manic mental mischief" that makes for an interesting life which wouldn't be possible without the incredible support and patience of his family and friends throughout the years. Kyle says that he enjoys including bits about his struggles with mental health into his comedy acts because it adds a voice and an opportunity for people to talk to him about their own mental health challenges. He is very open about his journey and says that while the jokes can be a coping mechanism, it is also a way to show people that he is capable of performing through the challenges and even making light of some of the hardships he has faced. You can see Kyle's story documented in this video for the Janeway HERE!


Anne Malone is a self-described Guide dog wrangler, bias-defiant writer, speaker, and creator who envisions and advocates freedom from disability for people who are blind or visually impaired. Her writing plumbs the depths of history, the classical arts, and popular culture to reveal the origins of deeply buried cultural beliefs about the abilities and characteristics of people who are blind, and the catastrophic consequences these misbeliefs have on blind and visually impaired people around the world. Anne opened her talk by explaining that she is on the "happy experience of vision loss" or as she likes to call it, "eyesight loss", because as she says, "vision is something that's inside, and there's nothing wrong with my vision!" I couldn't agree more, and I thoroughly enjoyed Anne's talk!


Diana Daly is a multi-instrumentalist, performer, storyteller and songwriter. She treated us to a couple of beautiful songs that she wrote for her own stage show, "If A Place Could Be Made", that she performs with her dear friends, Louise Moyes and Anne Troake as part of the Daly Family Collective. "If A Place Could Be Made" tells the story of Diana's own extraordinary family. Her great-grandparents had twelve children, six of whom were exceptionally tall and six had skeletal dysplasia, or what is currently known as persons of short stature, and had various disabilities. The production focuses on inclusion through songwriting, contemporary dance, and storytelling. It was wonderful to hear Diana describe her remarkable family, and talk about how much effort went into telling their story without exploiting their obvious physical differences. I haven't yet had the opportunity to see her show, but I am really looking forward to it!


To close the show, Brandon performed a set with Diana and in true Newfoundland style, they traded songs and tunes in what felt like a makeshift jam session that you just didn't want to end. What talent we have right here in our community, and such diversity among our performers!


Great art depends on great diversity, and thankfully, our ideas about what diversity means have expanded to include artists across the spectrum of class, sexuality, disability, gender and race backgrounds. Power Productions has been working to make theatre arts in Newfoundland and Labrador more inclusive and accessible, and is committed to removing barriers that prevent participation in the audience, backstage, and on the stage itself. This issue of Live Magazine! was the perfect showcase of diversity in the arts community, and a wonderful way to integrate the mainstream community into the world that we live in, which is made up of individuals with all sorts of unique abilities.

Sunday, November 11, 2018

Our New Build

This post is long overdue! I've been threatening to post a home tour on my blog for months now, and I am almost ready to show you guys inside.. almost! While we are still working to complete a couple of interior projects, I have been sharing little sneak peeks on my Instagram recently, if you want to follow me there!

As you probably know, Andrew and I sold our home last year (see THIS post) because we had outgrown it's space and functionality. We knew that we needed more living space inside, but we also wanted more land and space around us outside. We craved privacy. Our previous neighbourhood was lovely, but the houses were so close together you could literally high-five the guy next door through the windows. Not ideal.

We didn't want to venture too far away from the city, and with the needs of our children, we need to be in close proximity to the hospital. We looked at a couple of building lots in different areas, but were drawn to the beautiful big trees and the level of privacy we would have on this spacious lot on a quiet cul-de-sac in Logy Bay.

This photo was taken in May, 2017 when we purchased the land. (We were so excited!)


To create our house plan, we worked closely with home designer and Certified Housing Professional, Andrew Holley of Levis St. Design Group in Bedford, Nova Scotia. Andrew's education is grounded in the fundamentals of building science and universal design. He understood the needs of our family, and worked with us to design a space that is both beautiful and functional with well thought-out access for everyone in our home.

We took photos to document the entire process, and will eventually have them printed in a photo book, like we did for our last house. At the time of construction, it all felt like such a blur, and I was so caught up in the details - picking out lighting and flooring options, counters and cabinets, paint colours and trim designs. It was a busy few months, and admittedly a little overwhelming, but all well worth it in the end. I just love being able to look back at these photos and see how far we have come.


The team at York Construction did an incredible job of bringing our house to life, and we can't thank them enough. From the very start of this project, they worked with us to make every decision as seamless and painless as possible. It was a pleasure to have such a talented and dedicated team on our side! Of course, while I'm at it, I can't forget to thank our awesome realtor - Erica Coultas. Erica was my go-to person throughout this whole process, and she was a dream to work with! We are so happy to call her our friend!

Our house was completed in April of this year (2018), and we moved in on April 5th. It's taken a while to get organized, but we are very proud of the progress we've made in the past seven months. It's been fun and frustrating and everything in between, but it finally feels like we are getting settled and we are slowly but surely making this house our home. She is a beauty!


We are so happy here. I can't wait to show you the inside!


Saturday, November 3, 2018

Pumpkin Walk

I just love this time of year! Sweater weather is my favourite weather, and we get a lot of it here in Newfoundland. (Pretty soon it will be parka, hat, mitts, scarf and snow boot weather, so I am enjoying this while it lasts!)

On the morning of Halloween, Andrew and I spent some time together admiring the beauty of this season. We took a stroll through the grounds of Government House and then Bannerman Park, where the trees were actively shedding their leaves. We were like kids, carefully choosing our steps so not to trample them one minute, then running and loudly stomping through them the next.


Our lives are busy and stressful and there are times that we feel completely overwhelmed with little more to give. We know when we need a time out - a break from the daily challenges of raising three children with complex needs, and though we don't often get much of a break, we did manage to sneak a couple of hours to ourselves among the Halloween parties, trick-or-treating, medical appointments and haunted houses. It doesn't take much. I've said before that just an hour or two together, away from the demands of our busy family, makes a world of difference. We enjoyed the fresh air, the quiet, and the opportunity to focus on each other for a moment. We need days like this to remind us that no matter how challenging life gets, there is an abundance of little pleasures around us to bring us back home.


The following night, Andrew and the children and I returned to Bannerman Park, where the City was hosting its second annual Pumpkin Walk. Residents were encouraged to bring their carved pumpkins to display along the paths of the park, and glow sticks were provided to place inside each pumpkin to light the path. What a wonderful display it was! People really go all out with their pumpkin carving and decorating, and I just love that! To be honest, Halloween is not my favourite occasion, but I do appreciate the way that some people embrace it wholeheartedly and really get into the spirit of the holiday.


The Pumpkin Walk is an earth friendly event, and a great way to dispose of your pumpkin after Halloween as they will be composted for use in future landscaping projects. Our own pumpkin, which was carved a little too early this year and turned to mush on our front step, made its way into a landscaping project when we heaved it out into the woods behind our house about a week before Halloween.

Happy Haunting, everyone!