tag:blogger.com,1999:blog-57513180179184826562024-03-13T00:36:06.154-07:00Tiptoeing ThroughWinner of the 2017 Inclusion Award for Excellence in Disability Media CoverageJulie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.comBlogger336125tag:blogger.com,1999:blog-5751318017918482656.post-75251590868394756772019-12-31T07:20:00.002-08:002019-12-31T07:22:14.294-08:00Christmas 2019It's hard to believe another Christmas has come and gone (though our holidays are not over yet!) Andrew is like a certified Christmas elf. He loves the hustle and bustle and has been proclaiming for months now that this year was going to be the B.C.E. (Best Christmas Ever). I don't know how we could actually measure that, as there have been some pretty amazing Christmases in our past, but this was certainly a good one!<br />
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I entered into this holiday season with the highest of intentions to do less - buy less, worry less, spend less, stress less - and I think I've been mostly successful. We've been enjoying some down-time, a reprieve from our usually full and crazy schedules, and have been spending our days watching cheesy Christmas movies, drinking holiday teas and keeping cozy at home. It's been magical.<br />
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Here are some photos from Christmas Eve at our house!<br />
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I love this time, this rich season of shared excitement, of anticipation, of
going out with a bang. The old traditions that slip away to replace new, slightly modified versions. And tonight, as I write by the light of the Christmas tree, with my two sweet babes cozied up in their matching jammies, I marvel at the beauty of parenthood. It is, by far, my very favourite gift.<br />
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Merry Christmas and Happy New Year, friends. May your days be merry and bright!Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com8tag:blogger.com,1999:blog-5751318017918482656.post-22289768177643367262019-12-22T07:10:00.001-08:002019-12-22T07:10:10.344-08:00Happy Christmas to All!<div class="separator" style="clear: both; text-align: center;">
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I haven't been posting on my blog as often as I once had been - not for lack of inspiration, but more about trying to manage all of life's daily adventures. The way our life looks now is not a mistake. We were made for this. We have learned lessons and had struggles, but I am continually thankful
for this little family of ours, and for the one person who's experience
matches mine. I am proud of us. I don't know if we've quite figured out how to do it all well - it will be our life's goal - but we are working on finding a balance between letting it be hard and trusting that we can do it, knowing that we have each other.<br />
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Merry Christmas.. from my mummers to yours!<br />
<br />Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com1tag:blogger.com,1999:blog-5751318017918482656.post-19412470746738915562019-10-14T17:29:00.001-07:002019-11-26T16:29:08.083-08:00Read Our Lips<div class="separator" style="clear: both; text-align: center;">
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On October 3rd, the Canadian Hard of Hearing Association - Newfoundland and Labrador (CHHA-NL) launched a brand new self-paced online learning course called Read Our Lips.<br />
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<a href="https://www.readourlips.ca/" target="_blank">Read Our Lips</a> is an innovative social enterprise that will contribute to the programs and services of the CHHA-NL. Read
Our Lips is the first of its kind in Canada and
consists of online lessons that teach adults how
to lipread by learning
to identify and watch for important movements of the mouth, including the lips, jaws, teeth, and tongue.
This technique is an important part of overall speech reading. The full Read
Our Lips online
course has been created and produced in Newfoundland and Labrador and
will be sold online throughout North America, and the world. It
is affordable and available to anyone
with access to a high-speed internet connection and a computer, tablet or smartphone.<br />
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<br />
Leon Mills, Executive Director of the Canadian
Hard of Hearing Association - Newfoundland and Labrador<span lang="EN-US" style="font-kerning: none; font-variant-ligatures: none !important; line-height: 20.5042px; margin: 0px;"><span style="margin: 0px;">,</span></span><span lang="EN-US" style="font-kerning: none; font-variant-ligatures: none !important; line-height: 20.5042px; margin: 0px;"><span style="margin: 0px;"> says:</span></span><span lang="EN-US" style="font-kerning: none; font-variant-ligatures: none !important; line-height: 20.5042px; margin: 0px;"> <span style="margin: 0px;"> </span></span>
<br />
<br />
"<i>Many
people believe that technology like hearing
aids and cochlear implants fix hearing loss, and while such technology
is indeed a great help, the reality for many of us who live with hearing
loss (which is about 1 in 5 of the adult population in Canada) is much
different. Background noise, distance from
the speaker, room lighting, and so many other factors play a role in
how well someone can hear. </i><br />
<br />
<i>Combined
with an individual’s existing hearing
ability and technology, lipreading, an important part of overall
speechreading skills, can significantly improve an individual’s ability
to communicate and, most importantly, to understand someone’s speech.
We believe that the Read Our Lips online course will be another important
tool to help people with hearing loss to understand more speech, have
better comprehension, improve their self-confidence, and ability to
communicate with confidence.</i>"<br />
<br />
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</div>
<br />
My dear friend, Alison Butler is the Coordinator of Education and Awareness for CHHA-NL, and she has been highly involved with the creation of this program. (You will see Alison in many of the videos connected to this course!) Alison was excited to announce the launch of Read Our Lips, and she did an awesome job of describing the course. <br />
<br />
Alison says, "<i>Many individuals don't recognize
the signs and symptoms of hearing loss and for many who develop
hearing loss later in life, the process is so gradual
that they may not even realize or notice their challenges for years."</i><br />
<br />
Alison also explained that hearing loss is widely misunderstood by the public at large. It is not always an issue of not being able to hear sound, but it is more often about the
clarity of sound or not being able to hear clearly. When speech starts to sound unclear, many
people struggle with communication, but don't necessarily recognize these symptoms as hearing loss."<br />
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyowUewMgXyWUPH7-smYN3jajciBGE9UIZtnfs9KMlsWRLq_bpj2pLTIvsezSFzhDZRbG7zbCDWSKguoxT8O4vEXnyRPnW5r5zGQ272NEQ6KzTI2kZDt5w7x5TreErbGl6OePrhv8t_JUc/s1600/5E4A0647s.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="533" data-original-width="800" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhyowUewMgXyWUPH7-smYN3jajciBGE9UIZtnfs9KMlsWRLq_bpj2pLTIvsezSFzhDZRbG7zbCDWSKguoxT8O4vEXnyRPnW5r5zGQ272NEQ6KzTI2kZDt5w7x5TreErbGl6OePrhv8t_JUc/s1600/5E4A0647s.jpg" /></a></div>
<br />
<span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 20.5042px; margin: 0px;">Hearing loss occurs gradually in most of us as we grow older, and so it is likely that we will all experience hearing challenges at some time. The alarming truth is that Newfoundland and Labrador has the
fastest-aging population in the country, and we are going to have to
find ways to support our seniors in living as healthy and as
independently as possible. Heck, we are going to BE those seniors. </span></span></span><span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 20.5042px; margin: 0px;">Time
does not slow down, and we are all getting older. I constantly lament
over how fast the days go by, how big my son is, how quickly things
change. The world has a way of unforgivingly reminding us all of how old we
are getting, so why don't we do something to help us age gracefully -
to improve our chances of aging together in a healthy way. </span></span></span><br />
<br />
<span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 20.5042px; margin: 0px;">Health Canada defines healthy aging as "<i>a lifelong process of optimizing opportunities for improving and preserving health and physical, social and mental wellness, independence, quality of life and enhancing successful life-course transitions</i>." </span></span></span><br />
<br />
<span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 20.5042px; margin: 0px;">Making the most of our health is key to positive aging, and I am all for that. All people have the ability to live well, in spite of their limitations. For individuals with hearing loss, the ability to lipread </span></span></span><span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 20.5042px; margin: 0px;"><span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 20.5042px; margin: 0px;">makes a tremendous difference in the quality of conversation and helps people feel connected. Read Our Lips is going to improve
communication and connection for thousands of people.</span></span></span> I truly believe that this is a course we all should take. </span></span></span><br />
<span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 20.5042px; margin: 0px;"><br /></span></span></span>
<span style="font-family: inherit;"><span style="font-size: small;"><span style="line-height: 20.5042px; margin: 0px;">If you are interested in learning more about lipreading or the online course, visit <a href="http://www.readourlips.ca/">www.readourlips.ca</a> to access a free course introduction and lesson preview. <br />
</span></span></span>
<span style="font-family: inherit;"><span style="font-size: small;">
</span></span>
Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-73553136773785742372019-09-26T18:15:00.002-07:002019-09-26T18:15:43.521-07:00Spark the ConversationI am super excited about the launch of "Spark the Conversation" - a creative contest for students from K-12 in Newfoundland and Labrador to get them thinking about inclusion and accessibility.<br />
<br />
"Spark The Conversation” is a creative contest where young
people are asked to <b style="mso-bidi-font-weight: normal;"><u>draw or design a
picture of how the concept of inclusion makes them FEEL</u></b>. The hope is that these efforts will spark a broader conversation on how accessibility
in the built environment benefits us all.
<br />
<br />
Organized by the Universal Design Network Newfoundland and Labrador (UDNNL), in partnership with the Government of Newfoundland and Labrador - Disability Policy Office, The Coalition of Persons with Disabilities, and Boom I.T., we are excited to launch this initiative which we hope is the start of many great conversations on the important topic of accessibility. It is our hope that this campaign drives age-appropriate conversations between parents, students and educators. Young people are often keenly aware of simple solutions that can benefit everyone. Teachers can also feel free to use this resource as a jumping-off point for conversation about accessibility in the built environment and start the creative ball rolling.<br />
<br />
Universal Design is about creating environments, from the design stage, that are accessible to everyone and have the most flexibility of use. True accessibility works for everyone!<br />
<br />
The contest begins today, September 27th, and submissions will be accepted up to and including October 18th, 2019. Winners will be announced at the Home Show in Mount Pearl on March 28th, 2020. UDNNL intends to post all submissions for public viewing on their website once the contest has concluded.<br />
<br />
I am so excited to see what the kids will come up with!!<br />
<br />
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<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
Find more details <a href="https://universaldesignnetwork.com/spark-the-conversation" target="_blank">HERE</a> or at <a href="http://udnnl.ca/">udnnl.ca</a></div>
<div style="text-align: center;">
<a href="https://universaldesignnetwork.com/spark-the-conversation" target="_blank"><br /></a></div>
<div style="text-align: center;">
<br /></div>
Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-54145984209765645982019-09-18T12:59:00.001-07:002019-09-18T12:59:05.239-07:00Kite FestivalIt's been a busy couple of weeks! We are officially two weeks into the
new school year, and I am happy to say that things are going pretty darn
well! The initial feelings are always the same for me - panic, worry,
and wondering if we are going to make it through.
The difference between Brennen's first school year and his eighth,
however, is that the panic doesn't last as long. I know we will make it
through this year because we've made it through the previous seven. Brennen
is in Grade 8 this year, and I actually feel like I can finally exhale
and let go of some of my own nerves about his junior high school
experience. Brennen is in good hands, and as a parent, that is all I can
hope and pray for. He loves going to school - his
days are full of fun and activity, and he is happy when he comes home.
Sometimes I wonder how we got here.. how it all happened so fast. It
seems like just yesterday I was worried sick about my boy starting
school, being there for hours each day without me,
and not knowing how on earth I would be able to let go of control and
hand him over to somebody else. But we have come a long way since those
early days, and my boy has proven to me over and over again that he is a
tough kiddo, and he is rocking the education
system! He loves his life, and we are so fortunate to have so many
people on our side who help empower Brennen to not only survive the
school year, but to truly thrive! We couldn't be happier!<br />
<br />
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<br />
On Sunday, we attended the PAL Kite Festival in Bowring Park. Like
in previous years, this year's festival was full of exciting events,
including a kite flying contest, bouncy castles, face painting, BBQ and live musical entertainment! All
proceeds from kite sales and donations this year go to <a href="https://www.choicesforyouth.ca/" target="_blank">Choices for Youth</a>, an organization that we are proud to support.<br />
<br />
"<i>Choices for Youth is committed to building programs, systems, and opportunities
that are focused on providing individualized support for young people,
celebrating who they are, and working together to unlock their potential
to build a brighter future</i>."<br />
<br />
Some photos from the Kite Festival!<br />
<br />
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<br />
<div style="text-align: center;">
My nephew, William got off to such a great start with his little kite.. but it ended up looking like this:</div>
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<div style="text-align: center;">
It's ok, buddy. I lost my kite over the top of a tree. The struggle is real.</div>
<div style="text-align: center;">
<br /></div>
<div style="text-align: center;">
See photos from when we attended the Kite Festival a couple of years ago, <a href="https://www.throughthetulips.ca/2016/08/go-fly-kite.html" target="_blank">HERE!</a></div>
Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-23446664930402586252019-09-08T14:40:00.001-07:002019-09-08T14:40:19.917-07:00"Making Fish"On Labour Day weekend, Andrew and I were able to sneak out of town for a bit, trading the busyness of the city for some tranquility around the bay. We visited friends in Green's Harbour, where we were treated to the most gracious hospitality I think we have ever experienced. What a beautiful way to spend the last few days of the summer! I should have been a bayman.<br />
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See the article below on the history of "making fish" in Newfoundland!<br />
<br />
<b><a href="https://journals.lib.unb.ca/index.php/MCR/article/view/17703/22250" target="_blank">"Hard Racket for a Living" — Making Light-Salted Fish on the East Coast of Newfoundland</a></b></div>
Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com2tag:blogger.com,1999:blog-5751318017918482656.post-37886616467397049532019-08-20T12:31:00.001-07:002019-08-20T12:31:12.765-07:00TD Summer Reading Club 2019As much as I hate to admit it, we are nearing the end of the summer.
It just seems to go so fast, especially considering that the weather
didn’t start to pick up for us here in Newfoundland until mid-July.
While we have packed a lot into a few short weeks, there are still some
things on my summer bucket list and a few key things I want to
experience with Brennen before he goes back to school. One thing on our list this year was to make more time to read together, and I think we’ve done a good job of that!<br />
<br />
Brennen
and I have been participating in the <a href="https://www.tdsummerreadingclub.ca/" target="_blank">TD Summer Reading Club</a> – Canada’s
biggest bilingual summer reading program for kids of all ages,
interests, and abilities, where kids can:<br />
<br />
<div style="text-align: left;">
- Join activities happening in local libraries </div>
<div style="text-align: left;">
- Read books online and get reading recommendations </div>
<div style="text-align: left;">
- Track their own reading and collect stickers and online badges </div>
<div style="text-align: left;">
- Connect online to share jokes, stories, book reviews, and more with other kids across Canada</div>
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<br />
As part of the <a href="https://www.tdsummerreadingclub.ca/" target="_blank">TD Summer Reading Club</a>, you receive a summer reading
booklet, stickers, a web code and a reading goal sheet. You set a goal
of how many books you want to read over the summer, and the great thing
is that ALL books count – even books that a grown-up reads to you!<br />
<br />
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<br />
Studies show that kids who keep reading all summer do better when
they return to school in the fall. Participating in a summer reading club is a great
way to build excitement about reading!<br />
<br />
Our local library has a wide variety of books available in
alternative formats, and we like to try them out once in a
while. Brennen does not read Braille, but we like to let him feel the texture on the pages of a book while we read the story, and he seems to enjoy this!<br />
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<br />
Brennen received an Accessible Notebook, which includes sections from both the pre-reader and school-age notebooks. Accessible tips have been added to support kids who have vision loss, a learning disability or a physical disability making it difficult to hold or turn the pages of a book. <br />
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<br />
We had a great time participating in the <a href="https://www.tdsummerreadingclub.ca/" target="_blank">TD Summer Reading Club</a> once again this year. I read a quote once by an author who said that her hope for all
children was that they “<i>feel free to imagine themselves
as whoever they want to be in the fictional world, because that is,
after all, a stepping stone to imagining yourself as whoever you want to
be in the real world</i>.”<br />
<br />
I think this is what I hope for Brennen,
as we are reading stories together. I hope he is able to imagine himself
as a character in the books we are reading, and to use his imagination to take him on all sorts of fun adventures!<br />
<br />
What are some children's books that you are loving? I'd love to hear about them!<br />
Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com7tag:blogger.com,1999:blog-5751318017918482656.post-15565384568550087982019-08-11T17:11:00.001-07:002019-08-11T17:11:01.784-07:00Can You CanoeThere isn't much that beats the feeling you have after spending a long day outside with your family. Though it often takes a lot of planning to get us all out of the house, it is almost always worth it. Today was a beautiful day and we had no prior commitments, so we decided to meet my sister and her kiddos over at our parents' house to take a spin around the lake. Brennen was so relaxed in the heat, and our little girlie preferred to stay in the shade, but we made it work and had the best day!<br />
<br />
There were a few minor meltdowns, a little sunburn and a whole lot of back sweat, but there is nothing better than a full day of fresh air and sunshine with some of our favourite people.<br />
<br />
Not a lot of words in this post, just a lot of photos capturing real moments from a really fun day!<br />
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<div style="text-align: center;">
Kisses from Nanny!</div>
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Andrew pretending to throw the kids in the lake! </div>
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See what I mean? The best day. </div>
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I hope you are all enjoying the summer!</div>
<br />Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-22866940158859250252019-08-02T17:14:00.001-07:002019-08-02T18:28:03.552-07:00Inclusion MattersSummer is in full swing, and playgrounds all across the country are bustling with energetic youngsters, happy to have been released from the
confines of classrooms and formal learning
environments. These spaces are filled with endless possibilities for
curious young minds and active explorers, but not all kids can play
alike. Those with physical disabilities must often navigate a playground
terrain not built with them in mind, leaving them
with limited opportunities for exercise, socialization and outdoor play. <br />
<br />
As a parent of a child with a disability, I am all too familiar with the feeling of despair when we find ourselves at a play space that is not accessible. Fortunately, we have come a long way over the past few years and public playgrounds are becoming more and more inclusive. <br />
<br />
I wrote previously about our experience at our local Easter Seals playground (see <a href="https://www.throughthetulips.ca/2017/06/easter-seals-accessible-park-playground.html" target="_blank">HERE</a>), and how life-changing it can be when all children are included.<br />
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I recently had the opportunity to speak with Jane Park Woo, Director of <a href="http://toosmall.org/" target="_blank">Too Small to Fail</a> and Tiffany Harris, of <a href="https://shanesinspiration.org/" target="_blank">Shane's Inspiration</a>. Both Jane and Tiffany were featured on a panel that was hosted by UNICEF at the United Nation’s Convention on the Rights of Persons with Disabilities back in June. Together, they are building accessible and literacy-rich
playground environments for children, and we discussed how this work fits into the bigger conversation of early
childhood development – particularly for children with disabilities. Their vision is to foster a
bias-free world for children with disabilities, creating inclusive
playgrounds and educational programs around the world that unite
children of all abilities, and I am on board with that. <br />
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Knowing the value of outdoor play, I was thrilled to learn that <a href="https://jumpstart.canadiantire.ca/" target="_blank">Canadian Tire Jumpstart Charities</a> plans to build a
universally accessible playground in Mundy Pond Park, right here in our province. The playground
structure will be a gift from Jumpstart to the City of St. John’s as
part of the charity’s <a href="https://jumpstart.canadiantire.ca/pages/inclusive-play-project" target="_blank">Inclusive Play Project</a>, which focuses on removing
accessibility barriers to sport and recreation.<br />
<br />
“<i>Jumpstart is pleased to partner with the City of St. John’s to provide
an innovative, inclusive play space for this community</i>,” said Scott
Fraser, President, Canadian Tire Jumpstart Charities. “<i>The Jumpstart
Playground will allow more people to enjoy Mundy Pond Park by giving
kids of all abilities the opportunity to play outside together.</i>”<br />
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I am hopeful that this new playground will consider the needs of all individuals and will include equipment that can be accessed by wheelchair-users, without having to transfer out of their chair. This is a huge issue for our family. All too often, we have had the unfortunate experience of feeling the excitement of learning that a space or activity is accessible, only to find out that my child is "too disabled" to participate. <br />
<br />
Guess what, guys? "Too disabled" is not a thing.<br />
<br />
ALL children deserve the opportunity to take part in recreation and to develop to their fullest potential. When children are denied the opportunity to play and socialize with
their peers, they are denied the chance to develop skills that will
benefit them forever. Sometimes it is people's attitudes and perceptions of disability that create barriers. More often, it is not people but the environment that is the cause of exclusion, and that is not acceptable.<br />
<br />
There are some beautiful examples of accessible and inclusive playground equipment out there. These next few photos were taken recently at the Janeway St. John's Maple Leafs Therapeutic Play Garden. <br />
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We look forward to the development of our local Jumpstart playground.
There are some big plans for that area, and I am excited about the
potential of a truly universally designed play space. Jumpstart's vision
is to create a Canada where all kids have access to play. They state
that their "<i>goal is to ensure that these playgrounds become the standard for
inclusivity by creating imaginative and accessible spaces where children
of all abilities can share in the magic of play.</i>" I like the sound of that.<br />
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There is still time to contribute your ideas about the proposed playground. Email engage@stjohns.ca to join the conversation!Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-43572155076321454872019-07-14T09:13:00.001-07:002019-07-14T09:13:43.283-07:00The Firewood FactoryHave you guys been to the <a href="http://www.firewoodfactorynl.com/" target="_blank">Firewood Factory</a>?! If you haven't, you must go!<br />
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With the weather slowly creeping up to a summer-like temperature, Andrew and I were planning a little family backyard camp-out this weekend, but needed a little extra dry wood to get our fire going, so we thought it would be cool to take Brennen down to the woodlot and check out all that goes on there!<br />
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The Firewood Factory is a local, family-run business, owned and operated by Luke and Kaylen Janes. All of their wood is sustainably sourced from harvesters in central Newfoundland, and is seasoned over several months to ensure it reaches a moisture content of less than 20% (ideal for burning).<br />
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I actually lived on the same street as Luke a long time ago when we were kids (shoutout to Riverside Drive!!) It was nice to reconnect with him so many years later, and to meet his beautiful family, that now includes three mini-lumberjacks! I remember Luke as the little boy down the road with rubber boots and a fishing pole.. and he hasn't changed a bit! His rubber boots are bigger (and probably steel-toe) but he is still in his element when he is working outdoors.<br />
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We had a tour of the woodlot and took Brennen for a walk around to experience all that it had to offer. He loved the sounds of the machinery.. and the smell of all of that freshly-cut birch and black spruce was to die for! We honestly could have stayed there all day. <br />
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Um, also, no big deal, but I DROVE A TRACTOR!!! After taking a picture of Brennen by the big CAT, Luke asked me to hop in and he gave me an impromptu lesson in how to drive and operate the machine! You guys, it was the coolest thing! I ended up attaching a scoop, driving around the lot and into the warehouse to pick up a load of wood! A big check mark on my bucket list!<br />
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I am so grateful to Luke and Kaylen for making this such a cool experience for my family. Brennen loved it there, and I had an absolute blast! </div>
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This is Gunner - the family's 11 year old baby who loves spending time at the woodlot. He is a gentle giant and an unofficial Firewood Factory mascot. He was super chill, and just wanted to hang out in the shade. I could totally relate.<br />
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We came home from the Firewood Factory with several campfire bundles and a large crate of kindling, perfect for our backyard camp-out! </div>
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We enjoyed a delicious dinner of pan-fried cod, beans and toutons inside the house before coming out to roast marshmallows over the fire. </div>
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Brennen loves a good marshmallow!</div>
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<br />
.. and when he smiles like this I can't help but feel as if every
painful moment of the past few years has led us up to today and has been
so completely worth it.<br />
<br />
Nothing could have prepared
me for this parenting journey. The difficulties have been significant,
but even more indescribable is the immense joy that frequently threatens
to make my heart explode right out of my chest. I love my boy for
teaching me what really matters in life.<br />
<br />
THIS. This is what life is all about. These are my people. <br />
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<br />
What a wonderful way to spend the weekend! The thick perfume of citronella and wood smoke is embedded deep into the fibers of everything that made its way back into the house, but I wouldn't want it any other way.<br />
<br />
Thank you to our friends at the <a href="http://www.firewoodfactorynl.com/" target="_blank">Firewood Factory</a> for helping us create such special memories! <br />
<br />
<br />Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-74098716465254143852019-07-08T11:56:00.001-07:002019-07-08T11:56:22.028-07:00Weekend AdventuresThis past weekend, Andrew and I escaped the city and headed out around the bay to the quaint little town of Winterton. I wrote about our vacation out there last summer (see <a href="https://www.throughthetulips.ca/2018/07/our-family-getaway.html" target="_blank">HERE</a>) - that was quite a different experience because we had three children with us at that time. This weekend, however, was just for the two of us.<br />
<br />
We stayed in Winterton for two nights but spent most of our time exploring the nearby communities. Andrew and I have so much fun taking pictures of our beautiful surroundings, and every now and then we will set the camera up on a rock or other flat(ish) surface in hopes of capturing us both in the same shot. It doesn't always work out, but sometimes we luck out with a beauty like this one! Nailed it on the first try! <br />
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The lighthouse at Bloody Point in New Perlican wasn't anything spectacular, but it offered an incredible view of New Perlican Harbour and the waters of Trinity Bay. Colourful fishing stages can be found in the harbours of many communities in this area. I never get tired of them!<br />
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The lighthouse at Heart's Content was more impressive, with its almost 30 foot <span id="Main_PageDisplay1_lblHeritageValue">cast-iron tower that has </span><span id="Main_PageDisplay1_lblHeritageValue"><span id="Main_PageDisplay1_lblHeritageValue">withstood the rigours of the Newfoundland coast for over one hundred years. We were completely enraptured with the town's history - </span></span><span id="Main_PageDisplay1_lblHeritageValue"><span id="Main_PageDisplay1_lblHeritageValue">being one of Newfoundland's oldest enduring fishing settlements, and having a unique role in </span></span><span id="Main_PageDisplay1_lblHeritageValue"><span id="Main_PageDisplay1_lblHeritageValue">international communications, with the </span></span><span id="Main_PageDisplay1_lblHeritageValue"><span id="Main_PageDisplay1_lblHeritageValue">first successful landing of a transatlantic submarine telegraph cable. There is lots to learn and discover out this way!</span></span><br />
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While we didn't intend for this trip to be a tour of lighthouses, we did find ourselves stopping to check out any that we passed along the way. </div>
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The Hant's Harbour lighthouse on the western side of the Bay de Verde Peninsula was another beauty that we couldn't help but explore. </div>
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I think the highlight of our weekend was hiking the Sugarloaf Trail near Winterton up to the lookout over Trinity Bay. The hike was quite steep, and I was nearly dead by the time we got to the top, but the views were amazing, and it was well worth the effort!</div>
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"<i>What doesn't kill you makes you stronger!</i>"</div>
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On our way home, we drove through Heart's Delight, Cavendish, Green's Harbour, and Dildo, where we stopped for lunch at the <a href="http://www.dildodorygrill.ca/" target="_blank">Dildo Dory Grill</a> (highly recommended!) These are the iconic fishing stages in Cavendish that have become famous from provincial tourism ads. They are sweet, but the harbours of Winterton and New Perlican are much more colourful and impressive, in my opinion.<br />
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We had a wonderful weekend of adventures and have now returned to our cozy home in Logy Bay. We are so fortunate to live in such a beautiful province, where just an hour from home can feel like a resort destination. Andrew actually said this little trip ranked up there with our vacation in Mexico a few years ago.. and I have to agree! There is nothing better than waking up in the morning on the edge of the ocean and breathing in the salt sea air. We spent the evenings strolling the side roads of Winterton, going off the beaten path and living life the way it is meant to be lived - slow and unplugged. We drank tea with our feet up by the wood stove, talked a lot, and made sweet memories that we will treasure for years to come. Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-8947608892222926192019-07-04T15:19:00.001-07:002019-07-05T06:33:35.987-07:00Tulip Tales: AmeliaI am so excited to share the story of a precious little girl named Amelia. Her Mom, Veronica and I met several years ago, before Amelia was born, and we have since reconnected at the Janeway Children's Hospital. I asked Veronica some questions about her daughter, and have decided to share her answers exactly as I received them. Raw and real. Meet Amelia.<br />
<b></b><br />
<b></b><br />
<b>Tell me a little bit about your family.</b><br />
<br />
We are a small family. My husband is an only child and I have one
brother. Our three children are the only grandchildren on both sides.
Our boys, Greg & Mace, are 16 & 14 respectively. Amelia is the
'Bonus Baby' - she came along when her youngest
brother was 11. She's 3 now.<br />
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<br />
<b>What is your daughter's diagnosis?</b><br />
<br />
Her full diagnosis is Acute Lymphoblastic Leukemia (Pre B). When she was
diagnosed last summer, her Platelets were 1 and her Hemoglobin was 54.
Both readings are critical - potentially fatal for the platelets! She had
82% Leukemia blasts in her
bones and 35% in her blood! Now she shows no signs of disease, but as
Leukemia is known to hide from current medical technology, she will
continue with chemotherapy through September 2020.<br />
<br />
<b>When and how did you find out there was something wrong?</b><br />
<br />
<div dir="auto">
We were camping at Terra Nova on Canada Day weekend last year. She
was running to her brother and I noticed a limp. I couldn't explain it. I'm home with her all the time and hadn't seen this before. I called the doctor when we got back to
town, and had an appointment for Wednesday
morning, which was the next day after the long weekend. While in the
doctor's office, she bled from her gums. Our doctor sent us straight to
Emergency and called to let them know we were on the way. Those were her only symptoms, other than a brief fever
that came and went within hours on Monday night and a rash that I noticed
on Tuesday, which I now know to be petechiae. </div>
<br />
By the end of the day on Wednesday, they were preparing
us for the likelihood that it was cancer and her blood work confirmed
her diagnosis the next day.<br />
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<br />
<b>Tell us about the treatments she has had to date and what her treatment plan is for the future.</b><br />
<br />
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Amelia spent two weeks in the hospital following her
initial diagnosis. She had 11 blood transfusions during that period. A
port was installed in her chest through which to administer the
chemotherapy for the next few years. This is safer and easier
than having to use an IV every time, especially when chemo is sometimes
given as much as four times a week. She didn't wake up from the surgery to install
the port and spent five days in ICU. One day when they tried to wake her
up her responses were abnormal and they sent
her for testing that revealed a small pool of blood in the back of her
head and they thought she may have had a seizure. That was a scary time.
But she woke up a couple of days later.<br />
<br />
Chemotherapy for Acute Lymphoblastic Leukemia (ALL) is
administered in 6 phases. Each phase is a little different with phase
1/Induction being the most intense. She received her first chemo into
her spine during the surgery to install the port
and they continued with it per protocol even when she was in ICU. Phases 1-5 last anywhere from 28-56 days. Sometimes
there is a delay due to low blood counts, then they have to wait for her
to reach a minimum level of health to continue. Most of her chemo has
been textbook. She is only delayed 9-10 weeks
from textbook. During these phases she received chemo (most often
vincristine and methotrexate among others) through her port anywhere
from once every 10 days to 4 out of 7 days. She also had several
medications to take at home (i.e.: 6MP, methotrexate, dexamethasone).<br />
<br />
Right now she is in the final and longest phase - phase
6/Maintenance. This is to attack any lingering leukemia/cancer cells that
can't be detected by today's technology. She gets chemo through her port
now only once every 28 days, followed by
steroids twice a day for 5 days. I give her another chemo drug every
night and yet another once a week. She will continue with this
phase/routine until September 2020.<br />
<br />
Since her chemo began she takes an antibiotic, Septra, 3
days a week as well, and has Zofran and Ranidine on hand for the side
effects of nausea and irritated belly from the various cocktails of meds
she takes. Her immune system is compromised
during her chemotherapy and will be for 6 months afterwards.</div>
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<b> </b><br />
<b>How has your daughter's illness affected your family? </b> </div>
<div dir="auto">
<br />
It was life altering. And I thought we'd been through
that already. My Dad went into the hospital unexpectedly in October 2013
and stayed in critical care for 9 months until he passed in July of
2014. I found out I was pregnant 6 months later. Amelia is that baby. She brought the laughter and joy
back to everyone. She was everything you could want in a surprise baby -
happy, easy to care for. Just a delight. To have her get sick, when she
had just set my world right-side-up again, it was
devastating. But you push through. What else can you do when it is your baby? It was a rough summer. The boys got out of school on a
Thursday for summer vacation and by the following Thursday they were
told their sister had cancer. Amelia didn't understand why she was in the hospital and not home, or why she couldn't go back camping. </div>
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<br />
Overall, it has made me even more grateful for my
children, husband, family and friends. Amelia is one heck of a fighter.
So resilient. Her brothers are amazing. They have taken extra
responsibility and odd schedules and the hectic chemo
life all in stride. They adore her and she adores them. My husband and I know
we can face anything together. Our friends and family have been wonderful support. Our fathers have passed but our moms ROCK. My mom
helps a lot with Amelia since my husband went
back to work last fall (he was home the first couple of months). I am
unbelievably proud of Amelia, Greg & Mace!!!</div>
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<br />
<b>How has Amelia impacted your older children?</b><br />
<br />
They were always doting big brothers, but I think it has made them even more aware of how much they love their sister. They wanted a sister even before we knew we were expecting. Watching them with her, I know they will be fantastic fathers should they choose to have children! There is the realization with her illness that anyone
can become seriously ill at any time. How precious life is. That has hit
home. But I think they are also learning that you roll with what you're
faced with. We have continued to make good memories
and make the most of our family time together. </div>
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<b> </b><br />
<b>What are your hopes for your daughter?</b><br />
<br />
Oh my! A long, happy, healthy life! Minimal late effects from
chemotherapy. That she knows that after conquering cancer she can do
anything. That she knows how much she is loved.<b> </b></div>
</div>
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<br />
<b>How has this experience changed your outlook on life?</b><br />
<br />
I feel so much more connected to other people. To my
friends and family who have shown up for us. To the nurses, doctors and
staff who care for her. To the other parents of Childhood Cancer
patients and of all sick children. One mom said to
me that it's a club... One where the admission is way too high, but a
loving club when you're there. She's right.<br />
<br />
I am more likely to advocate for the charities I believe
in. Where once I wouldn't want to bother you, now I will flat out ask
you if you can donate to Camp Delight (for childhood cancer patients and
their siblings) or if you are going to give
blood! It makes me realize that anyone could be getting life
shattering news at any time. When someone cuts me off in traffic I give
them the benefit of the doubt. I think to myself that they could have
just found out their kid has cancer, or their parent
is in ICU. It makes me even more adamant in my belief that we
should all be kind to one another, we can all do better and should try
to do so everyday. I try to "Hope for the best, deal with the rest" and not get caught up in the details of a bad day.</div>
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<b> </b><br />
<b>I know that Amelia has relied on blood transfusions. Can you tell us why donating blood is so important? </b><br />
<br />
Amelia had 11 blood transfusions in less than two weeks. I watched that blood go into her knowing it was keeping her alive. I learned that blood has a short shelf life. Platelets last
only about 7 days! There is a constant need of donors to refresh the
supply. Blood often has to be sent in from other provinces when we don't
have an adequate supply on hand. Donations dwindle
during peak vacation times but the need for blood doesn't, so it is
important to donate as often as you can.<br />
<br />
Blood donors give such an intimate gift. It is so much
more than blood - it is the opportunity to live, love, learn, run, walk,
jump! It is life-saving. Some people need blood almost every day and
others only during a short period, like Amelia.
But it could be any of us at any time! And in order to save a life, the
supply has to be there!</div>
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Please donate blood in Amelia's honour on July 5th! <span class="_2HwZTce1zKwQJyzgqXpmAy" data-markjs="true" role="link" tabindex="0"> </span></div>
<div style="text-align: center;">
<span class="_2HwZTce1zKwQJyzgqXpmAy" data-markjs="true" role="link" tabindex="0">7 Wicklow Street, St. John's 9-1pm, or</span> your nearest Canadian Blood Services clinic! </div>
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1-888- 2DONATE. Keep the supply going for other children like Amelia!</div>
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Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-53345857056310215672019-06-05T13:35:00.000-07:002019-06-05T13:35:05.334-07:00Outdoor Inclusion SummitLast week, I attended the inaugural Outdoor Inclusion Summit, facilitated by TA Loeffler and Tomás Aylward. The goal of the Summit was to bring practitioners,
students, individuals and/or families experiencing disability, and community organizations together to share their stories, experiences, and
visions for inclusive outdoor recreation.<br />
<br />
<a href="https://taloeffler.com/about/" rel="noopener noreferrer" target="_blank">Dr. TA Loeffler</a> is an educator, adventurer, nature advocate, author, and professional keynote speaker from St. John’s, Newfoundland and Labrador. She brings 30 years of expertise leading people
through significant life-changing experiences to every facet of her
work. Her work and adventures have taken her to 45 different countries
and all seven continents. TA has completed 6 and 4/5 of “The Seven
Summits,” the highest peaks on all seven continents! In 2015, TA was
named to the “Canada’s Greatest Explorers 100 Modern-Day Trailblazers
List” by Canadian Geographic.<br />
<br />
As a Professor of Outdoor Recreation at Memorial University of
Newfoundland, TA has developed a reputation for excellence in
experiential education because her students are more likely to be
outside chasing icebergs than sitting in a classroom. TA inspires hope,
possibility, and vision in those whose lives she touches. Over the past
15 years, TA has shared her message of “Big Dreams, Big Goals” with over
100,000 youth in the province of Newfoundland and Labrador.<br />
<br />
TA believes that we all long for a balanced, engaged, and creative
life that challenges us to be the best we can possibly be. She models
this belief in her life on a daily basis and combines her broad range of
skills to inspire all to create the life they truly want.<br />
<br />
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<br />
Tomás Aylward joined us from Tralee, Ireland, where he has been teaching Outdoor & Experiential Learning modules at the Institute of Technology, Tralee (ITTralee) for the past 16 years. He lectures on degree programs in Outdoor Learning, Health & Leisure studies, Adapted Physical Activity and Field Biology/Wildlife Tourism. He continues to have an evolving outdoor learning practice with influences from adventure sports as well as experiential education and environmental education.<br />
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The Summit included a combination of keynote presentations, discussion, and workshops related to inclusive outdoor recreation. After some instructional time in the morning, we spent most of the afternoon outside, stepping out of our comfort zones and experiencing the outdoors in ways that we might not have ever before. Some participants tried navigating the grounds of Easter Seals House in a mobility device, some of us were blindfolded, eliminating our sense of sight, or some wore noise-cancelling headphones, reducing our sense of hearing. It was incredible to see how drastically our experience of the world is altered when our senses are impaired. You quickly learn to depend more on your other working senses.. and to rely more on others for help! <br />
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<br />
There were a number of different pieces of adaptive equipment available to try throughout the day. There was a TrailRider (which we previously borrowed, and I
wrote about <a href="https://www.throughthetulips.ca/2019/04/exploring-red-cliff-with-trailrider.html" target="_blank">HERE</a>), as well as a Hippocampe (see <a href="https://www.throughthetulips.ca/2019/01/riding-trails.html" target="_blank">HERE</a>). It was great to
be able to try these different pieces of equipment first-hand, to ask
questions about their use, and to see them demonstrated on all types of
terrain. <br />
<br />
Here I am testing out the <a href="https://www.gogrit.us/" target="_blank">GRIT Freedom Chair</a>. What a workout! The GRIT Freedom Chair is an all-terrain wheelchair built for every type of
adventure. It is a lever-driven
wheelchair that comes armed with rugged mountain bike wheels, a big, sturdy
front wheel that doesn’t get stuck, and optional trail handles, allowing
you to choose your own custom journey. (TA was spotting me here because I wasn't so great with the steering!)<br />
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<br />
We had a lot of great discussion about the importance of getting outside, regardless of your physical ability, and it made me think about the things that we do as a family and how we can incorporate more outdoor recreation into our lives. It can be tricky here in Newfoundland, because the weather doesn't always cooperate when we want it to, but we recognize how important it is for our health and well-being to spend time in nature, away from screens and electronics, enjoying our natural surroundings.<br />
<br />
When I think of some of my all-time favourite moments, the majority of them involve some sort of outdoor adventure rooted in nature. I think of days that Andrew and I spent hiking on the East Coast Trail, or walking the beach in Mexico, or snowshoeing across a frozen pond. Most recently, we took Brennen in a TrailRider up to the top of Red Cliff (see <a href="https://www.throughthetulips.ca/2019/04/exploring-red-cliff-with-trailrider.html" target="_blank">HERE</a>), and my heart still skips a beat when I think of the magnitude of that. It was something I never though we could ever do, but we tried, and we did it, and it turned out to be one of those moments that I will rank up there with the greatest of all time. Perhaps it has something to do with taking risks, conquering our fears, venturing beyond our natural confines, and realizing that we can do more than we think we can if we put our hearts and minds to it. Brennen loved our adventure, and we loved being able to share that incredible experience with him. It won't be our last.<br /><br />
I came away from this Summit feeling so inspired by TA and Tomás and the passion that they both have for the outdoors. I am grateful for the fact that they are committed to inclusion and exploring how we can provide support and opportunities for individuals
to access the outdoors regardless of barrier or disability. The truth is that everybody should be able to enjoy their natural surroundings, and there are ways to make that happen. Physical activity and time outdoors is paramount to health and
happiness, and no one should be excluded from nature for any reason. <br />
<br />
We are looking forward to creating more adventures of our own this summer, and while they may not all provide the adrenaline rush of a mountain hike, or include a trip to a volcanic island, there are adventures to be had in our own backyard, and we are determined to find them!<br />
<br />Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com1tag:blogger.com,1999:blog-5751318017918482656.post-50491822052175767242019-05-30T02:15:00.002-07:002019-05-30T02:17:24.503-07:00Inclusive Education Award 2019Each year the <a href="http://www.nlacl.ca/" target="_blank">Newfoundland and Labrador Association for Community Living</a> along with the Department of Education presents an Inclusive
Education Award to a school that has shown an exceptional spirit and commitment
to creating a space that is welcoming and inclusive for students with an
intellectual disability.<br />
<br />
I was honoured to be part of the selection panel once again
this year, to assist in reviewing the nominations and to help choose a
deserving school for the 2019 Inclusive Education Award.<br />
<br />
Inclusion is a way of thinking and acting that allows every
individual to feel accepted, valued and safe. As a parent of a child with a
disability, this is what I want most for my son. When he goes to school, I want
him to feel included and valued, and encouraged to build on his own unique
abilities.<br />
<br />
Inclusive school communities are those with an open,
welcoming attitude that respect every individual, while valuing and
celebrating differences and diversity.<br />
<br />
When reviewing the nominations for this year’s award, it was
wonderful to see that some really great things are happening in schools all
across our province, however, one school stood out unanimously across the
judging panel.
This year, we were thrilled to present the Inclusive Education
Award to <a href="https://roncallielementary.nlesd.ca/" target="_blank">Roncalli Elementary</a>!<br />
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Throughout their application, there were many examples of
how Roncalli goes above and beyond to appreciate each and every child in their
school. From installing a special swing in the playground to accommodate a
young student with a physical disability, to the planned development of a
sensory garden that will allow for stimulation and learning for all students,
particularly those with complex needs, Roncalli has demonstrated a deep
understanding of the link between social, emotional and academic achievement
and unwavering commitment to ensuring that all students feel safe, valued,
welcomed and included in all aspects of school life, not just in the classroom.<br />
<br />
Perhaps the most compelling letter in their application
package was written by the parent of a Grade 3 student. This young boy was
diagnosed with a rare disorder that lead to the loss of his verbal expression
and language comprehension. He began to use ASL (American Sign Language) and
many teachers in the school took the initiative to learn these skills and to
become proficient ASL as well. ASL is now incorporated into daily classroom
instruction, and many of the students in the school have learned to communicate
in ASL as well. This student and his peers are now able to communicate together
in a way that truly celebrates the different ways we learn, communicate and
live.
Roncalli has clearly demonstrated the conviction that every
single child belongs in their community school and in diverse classrooms, with
the right to learn, discover and develop their unique talents and abilities
together with their peers.<br />
<br />
Inclusive education is the foundation for building a more
inclusive world for everyone, and for all that they are doing to promote a
culture of inclusion and acceptance, I was proud to present the Inclusive
Education Award to Roncalli Elementary!<br />
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“<i>Inclusive education provides all students with the right to attend school with their peers and to receive quality programming and instruction. It involves a continuum of supports and services in the best possible setting, respecting the dignity of all children. We have some very positive approaches to inclusive education being utilized in schools throughout our province and they deserve to be recognized. I encourage all schools to apply for the Inclusive Education Award, to highlight their important work and efforts</i>."<br />
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- Dennis Gill, President, Newfoundland and Labrador Association for Community Living<br />
Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com1tag:blogger.com,1999:blog-5751318017918482656.post-33811513605717365042019-05-28T06:00:00.003-07:002019-05-28T06:07:33.212-07:00Sleep StudyBrennen spent the night at 'Hotel Janeway' last night to undergo a planned sleep study. We have been suspecting that he has some sort of obstructive sleep apnea, because his breathing in the nighttime is not ideal. For the past few months, Brennen has been struggling to breathe while he sleeps, and it has been very concerning for Andrew and I. We reposition him many times throughout the night, and have been taking turns sleeping with him to make sure that he continues breathing. It is a constant worry. We saw an ENT, who recommended this sleep study in order to properly diagnose whatever might be going on with him.<br />
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There wasn't a lot of sleep happening throughout the study. Brennen wasn't fond of having the nasal prongs in his nose, but they were necessary to monitor his breathing. He couldn't get comfortable on his back, as he is used to sleeping on his belly, but he did manage to doze off for a couple of hours. Hopefully that will be enough for them to get some sort of reading to tell us what exactly is happening with his airway during the night.<br />
<br />
We are fortunate that Brennen has been really well, medically, for the past few years. He hasn't had any illnesses or major procedures since his back surgery in 2017. He has been really happy and comfortable and we have had no real concerns until recently, when he started this unusual breathing at night. He is noisy and it sounds like he is snoring, but there are times that he really struggles to get a full breath. He has been tired during the day because he is not getting a good quality of sleep during the night, and this is not normal for him. We are anxious to get him back to a place where he can get a full nights sleep without these disordered breathing events. <br />
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<br />
Sleep is important for everyone and plays a major role in overall good health and well-being. We all know that we feel better after a full nights sleep, and though sometimes as parents we have to learn to function on broken sleep, it is not the ideal situation. Brennen's little body needs sleep to support healthy brain function and to maintain his physical health. Hopefully we are on track to get him back to his body's optimal condition. We haven't received the results from this sleep study yet, but our fingers are crossed that we will have answers soon.<br />
<br />
If you guys have any experience with sleep disorders or sleep apnea, I would love to hear from you!<br />
Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-69741213654737569452019-05-26T07:24:00.001-07:002019-05-26T07:24:21.732-07:00Finger Puppets for the JanewayAre you guys aware of the incredible thing that is happening right here in Newfoundland and Labrador right now? No, not the icebergs, though they are lovely.. I'm talking about something a little more personal. There are people - knitters - coming out of the woodwork to help put a smile on the faces of the children of our province. <br />
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On May 9th, Denika Philpott saw a Facebook post saying that the Janeway was running out of finger puppets, and it struck a chord with her. Denika told me that she remembers visiting the Janeway numerous times with her own young children, not for anything serious, but her daughter, Abigail had to have bloodwork done quite often and every time she left she would leave with a finger puppet, and she would dry her tears and that would be the highlight of her day. She said that the thought that a child might have to go to the Janeway for bloodwork or some other procedure, and not get to have that little treat really bothered her, and so she decided to do something about it.<br />
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Denika started public a Facebook group called '<a href="https://www.facebook.com/groups/611970722614957/" target="_blank">Knitted Finger Puppets for the Janeway</a>', and it has grown to include almost 1000 people, all eager to donate their time to such a wonderful project. It is such a positive group, with people sharing patterns and offering help to those who might not be seasoned knitters. It is amazing to see how creative some people can be with such a small canvas to work with. There are pictures of finger puppets in the shape of unicorns, sock monkeys, ninja turtles, you name it! There are photos posted daily of the batches of tiny puppets that people are ready to donate. My favourite photo so far was of a bag stuffed with finger puppets with a note attached that said, "<i>Emma Wells, 97 years old, 175 finger puppets, original pattern since 1982</i>". Amazing.<br />
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Denika has been so impressed that people are taking it upon themselves to deliver the finger puppets to the Janeway, and they are even checking with other hospitals around the province to see who might be able to use them. She says it really shows the true hearts of Newfoundlanders and Labradorians - people pitching in to help others. <br />
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The group has now expanded to include people knitting preemie hats, and booties for the Janeway as well. There are photos of tiny babies, with captions like, "<i>My granddaughter was born December 9, 2018, 10 weeks early weighing 2
pounds 6 oz. These hats are what kept her little head warm while she was
in the incubator.</i>" If that doesn't pull on your heart-strings, I don't know what will! <br />
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I have visited the blood collection department with Brennen many times over the years, and he always leaves with a puppet covering his bandage, and a smile on his face. Like Denika, I can't imagine not having that little token of kindness to go home with. It's something so small, but it can really brighten your day and put a positive spin on something that can otherwise be quite scary for young children (and their Mommas!)<br />
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We invited some of our favourite kiddos over on the weekend (my niece and nephew), and they had a great time playing with the finger puppets that Nanny made! We look forward to bringing these in to the Janeway this week! <br />
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I am a sucker for a good-news story, especially when it comes to children in the hospital, and I commend these knitters (including my own Mom!) for putting the time in to help put a smile on the faces of some very special kiddos. Thank you, thank you!!<br />
<br />Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-86436334284479564832019-04-22T12:26:00.001-07:002019-04-22T12:26:13.697-07:00Exploring Red Cliff with a TrailRiderToday was a bit of a funny day. It was a holiday for some, either because of Easter Monday or St. George's Day. It was also Earth Day and it was 14 degrees, so we knew we were going to spend the day outside. We borrowed a TrailRider from <a href="http://www.eastersealsnl.ca/" target="_blank">Easter Seals NL</a>, and were excited to get out and explore!<br />
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The TrailRider is a single wheeled mobility transporter. The single wheel supports the rider's weight while the handles at the front and back allow two, three or four helpers to guide the rider along the terrain. It claims to "<i>have taken people with disabilities to places they never thought possible</i>", and they are not kidding. This thing is intense, and I actually think it could go just about anywhere.<br />
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Andrew and I were feeling adventurous this morning, so we decided to take Brennen up to the top of Red Cliff - a popular stop on the East Coast Trail with some fantastic views of the ocean. <br />
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We made it up to the top of the hill just as it started to rain, but we kept going, determined to let Brennen fully experience the incredible beauty of this place. Red Cliff is one of our favourite hiking spots, but I never imagined in a million years that we would ever get Brennen up there!<br />
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(Thanks to the lovely people on the trail who graciously took this picture for us!)</div>
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We stopped to check out some of the old buildings that were once part of an American air / radar station. At this now abandoned site, some of the original buildings are still standing, while others are almost completely in ruins. The graffiti is different every time we go there, and some of it is pretty impressive, actually!</div>
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While the old buildings are fun to explore, the real attraction up here is the view. I should note that while it looks like we are really close to the edge of the cliffs, we were sure to keep a safe distance.<br />
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Despite it being a rainy ol' day, we had a fabulous time. Brennen was super pleased with his off-road adventure, and we now know that he is able to join us on some of our favourite hiking trails! The TrailRider was super easy to use and Brennen had a blast! I am so grateful for opportunities like this to spend quality time with my favourite boy. I love seeing him so happy!<br />
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Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-39173391570378679622019-03-28T10:05:00.001-07:002019-03-30T05:10:00.879-07:00Families in Canada 2019<div class="separator" style="clear: both; text-align: center;">
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<br />
On
March 27 and 28, 2019 in Ottawa, Ontario, the Vanier Institute of the
Family hosted the <a href="https://familiesincanada.ca/" target="_blank">Families in Canada Conference 2019</a> - a national,
pan-Canadian conference with simultaneous satellite events co-hosted by
university partners across the country. Memorial University of Newfoundland hosted a <a href="https://familiesincanada.ca/mun/" target="_blank">satellite event</a> here in St. John's, which explored themes and topics
related to families and mobility.<br />
<br />
"<i>Geographical mobility and immobility are integral parts of daily life
that affect us all. One of the key challenges for families is managing
the diverse and divergent responsibilities of individual family members
related to work, school, community involvement, recreation and other
activities.</i><br />
<i>
</i><i>This can be particularly complex for some families, such as those who
need to travel far from home for often prolonged periods in order to
access education, work or health care (such as with many Indigenous
people living in Newfoundland and Labrador); people who need to move
frequently as part of their job and career (e.g. military, police);
families living with disability; families new to Canada; families
experiencing violence; and more.</i><br />
<br />
<i>
</i><i>Memorial University’s <b>Families in Canada Conference 2019</b>
satellite event will focus on Families on the Move, where catalytic
conversations will be fostered and facilitated among diverse delegates,
including mobile workers, immigrants, First Nations, Inuit, military
personnel, veterans, public safety personnel, survivors of domestic
violence and people with disabilities, as well as those who study
mobility and families among these groups, and those who serve and
support them."</i><br />
<i></i><br />
I was honoured to be invited to speak on a panel<b> </b>entitled:<b> Lived Experience of Mobility and Families.</b> <span lang="en">We are the experts of our own lives and yet so often those with lived experience are missing from the conversation. </span>This panel
gave voice to those who are most affected by mobility to help others understand how
it impacts them and their families. <br />
<br />
It was my pleasure to share some of my own family's lived experiences with mobility challenges, and while there was a lot of diversity around the table, it was interesting to note that many common issues came up across the panel. Feelings of isolation, a desire for connectedness and a sense of belonging, and the importance of family were shared by both myself and many others who have experienced mobility in different ways.<br />
<br />
A huge take-away for me was the importance of not only sharing our stories and our lived experiences, but the importance of listening to each other. We can learn so much from each other if we take the time to truly listen and to absorb what we are hearing. There was much discussion over the past couple of days about the benefit of positive collaborations among organizations and community groups, and my hope is that going forward we can work together to create a community that cares well for its most vulnerable populations. All people are worthy, regardless of our backgrounds or our abilities and we are all interconnected. As this conference showed, our understanding of the world is perhaps best informed by learning the experiences of others. <br />
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Thanks to <a href="http://bojanfurstphotography.com/" target="_blank">Bojan Fürst</a> for these wonderful photos!</div>
<br />
Thank you to Memorial University of Newfoundland for hosting this satellite event, and to The Vanier Institute of the Family - a national, independent,
charitable organization dedicated to understanding the diversity and
complexity of families and the reality of family life in Canada.<br />
<br />Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-81419580172429983922019-03-21T03:09:00.001-07:002019-03-21T03:09:15.555-07:00Tulip Tales: Lilly<span class="_5yl5">Another Tulip Tale to share this week! I am excited to introduce you all to the sweetest little girl named Lilly. Her mom, Sammi shares her story.</span><br />
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<span class="_5yl5">______________________________________________________________ </span></div>
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<span class="_5yl5">I had a typical pregnancy, with nothing unexpected or out of the ordinary. At 35 weeks, I was admitted for high blood pressure and after many ultrasounds I was told that Lilly would be born with just one kidney. At the time, that was the only thing the ultrasounds picked up on, and we thought, ok that’s fine there are a lot of people who live full lives with one kidney.. not a big deal. Little did we know, there was a lot more going on than what we thought. </span><br />
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<span class="_5yl5">At 38 weeks, I was told that I would have to be induced because Lilly wasn’t gaining any more weight. She arrived on May 20th, 2012 and that was just the beginning of a very long road. </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBXvMW9hsHCIklb_Np8guInCbkrOfnWKt8rFpkVx7JX2jZZo8OAXg7pN6ZxM3awZplFh4DbI01DB3kgudyYKFbQdIYZMSzHxnMitf3D5Y348I_b8B2WD_GjK_4yS62tTsJFg-mwMr6nov3/s1600/Lilly8.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="670" data-original-width="501" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBXvMW9hsHCIklb_Np8guInCbkrOfnWKt8rFpkVx7JX2jZZo8OAXg7pN6ZxM3awZplFh4DbI01DB3kgudyYKFbQdIYZMSzHxnMitf3D5Y348I_b8B2WD_GjK_4yS62tTsJFg-mwMr6nov3/s1600/Lilly8.jpg" /></a></div>
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I remember asking over and over again "<i>Is she ok?</i>" because I didn’t hear her cry or make any newborn baby sounds. They rushed her off to the NICU at Western Memorial Regional Hospital in Corner Brook and I wasn't able to see her until 5 hours later. By this time there were a million things going through my mind! They told me that Lilly had to be airlifted to the Janeway Children's Hospital in St. John’s, but they couldn’t tell me exactly what was wrong.<br />
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Lilly had deformed ears and a very small jaw, which was causing breathing issues for her. We later learned that our daughter was born with a rare chromosomal disorder called "Cat Eye Syndrome" (a duplication of the 22nd chromosome) which affects between 1 in 50,000 and 1 in 150,000 people. We had no idea how long we would be in St. John’s, but we didn’t care. As long as she was safe and was getting the care that she needed, that was all that mattered. There were some days that were terrible and we didn’t know if she would pull through and there were some days that were really great. It was a roller coaster, and absolutely the hardest thing we have ever experienced but she is the highlight of our lives and we truly are so grateful to have such an amazing little girl!<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9PDCRBIywHNQxzf-vL_jW4Todkrsv9_QizAkxM0CingCNP8DLEm8Eb6ZeeQ9LZme_rIPLGurnRAw6VJwszG-ZO9c9yT_iPS68XEbtF9fZv6HlvvKXC54rpa7OO71aKNxjymhAB3XcVRmY/s1600/600244_10151262147234570_178117373_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="401" data-original-width="600" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9PDCRBIywHNQxzf-vL_jW4Todkrsv9_QizAkxM0CingCNP8DLEm8Eb6ZeeQ9LZme_rIPLGurnRAw6VJwszG-ZO9c9yT_iPS68XEbtF9fZv6HlvvKXC54rpa7OO71aKNxjymhAB3XcVRmY/s1600/600244_10151262147234570_178117373_n.jpg" /></a></div>
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<span class="_5yl5">When Lilly was four months old, her airway became very critical and we were told that she would need a tracheostomy and g-tube placed. I was so scared but I knew it was going to be the best decision for her. After a few months of healing and my husband and I going through training for trach and g-tube care, the day finally came when we were able to bring our precious girl home. </span><br />
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<span class="_5yl5">For the first few years we had appointments after appointments along with rehabilitation therapies and more surgeries. Lilly received cochlear implants in 2013 and had a jaw distraction surgery in 2014. The jaw distraction helped to move her lower jaw forward and make her airway bigger. We are hopeful that she may be able to have her trach removed sometime in the near future! </span><br />
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<span class="_5yl5"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAmj4q05ggjAYzardnF-_u8_M8J-dNbIfPP53P_MsWYLg9Wg1kF5id7tCBkhIiMQSPajJ2yD8lD_07sCIPDKDLed2jzk70tzUnf_gJPaDLWTx_jNWtYAAByu79_qYPDGjb3xXK81lRI-5X/s1600/Lilly4.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="530" data-original-width="800" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhAmj4q05ggjAYzardnF-_u8_M8J-dNbIfPP53P_MsWYLg9Wg1kF5id7tCBkhIiMQSPajJ2yD8lD_07sCIPDKDLed2jzk70tzUnf_gJPaDLWTx_jNWtYAAByu79_qYPDGjb3xXK81lRI-5X/s1600/Lilly4.jpg" /></a></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidwMkB4z123eJDUfT80UY33xHO4SDOnKnlujh0CX80OMPVTAc4eWW5lKVlnWIhpaw3i5tyqJPt5cWfL5nXIF67t8VTiD978aNR-2_CVuJ9BBzY1OUbmedOZluCBviQlorP9VdnDv2GNtnt/s1600/Lilly3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="530" data-original-width="800" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidwMkB4z123eJDUfT80UY33xHO4SDOnKnlujh0CX80OMPVTAc4eWW5lKVlnWIhpaw3i5tyqJPt5cWfL5nXIF67t8VTiD978aNR-2_CVuJ9BBzY1OUbmedOZluCBviQlorP9VdnDv2GNtnt/s1600/Lilly3.jpg" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5eooc8Y0v6utKvOqpxUUUlc2RvGBfB1C0ScVTa8Sg45DL4t1ZhalKLSFkqAt0HmWBwoS-bAG5RB5PQpQOxKDg-sACF95oJxG_U1YqpwPKr8sEX3bKXaw8lK8FAwijRYnpY5TH3EFQMYfa/s1600/Lilly7.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="530" data-original-width="800" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj5eooc8Y0v6utKvOqpxUUUlc2RvGBfB1C0ScVTa8Sg45DL4t1ZhalKLSFkqAt0HmWBwoS-bAG5RB5PQpQOxKDg-sACF95oJxG_U1YqpwPKr8sEX3bKXaw8lK8FAwijRYnpY5TH3EFQMYfa/s1600/Lilly7.jpg" /></a></div>
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<span class="_5yl5">Today, Lilly is in Grade 1 and loves going to school and being around her friends. Of course, she has many obstacles to overcome but she has come so far since the day the doctors first told me she might never walk or do many of the things a typical child could do. Lilly</span><span class="_5yl5"><span class="_5yl5"> is deaf, blind in one eye and developmentally delayed, but </span>we continue to give her the best life possible and include her in everything she can handle because this girl is a fighter! </span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8s5WfuV9JwZ1Af1NmYiPArD9y6aUR_QOTUbS6IBEBXVkmUEkELamtBtb8mb6EzJ_gPL8vncju8WM6FsyBJIOYUE1h9WjIVJTPA34lmHANCTiZ-NVyg_bwqxrX7rjTZB09BZqMg9ON6blT/s1600/Lilly5.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="667" data-original-width="500" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8s5WfuV9JwZ1Af1NmYiPArD9y6aUR_QOTUbS6IBEBXVkmUEkELamtBtb8mb6EzJ_gPL8vncju8WM6FsyBJIOYUE1h9WjIVJTPA34lmHANCTiZ-NVyg_bwqxrX7rjTZB09BZqMg9ON6blT/s1600/Lilly5.jpg" /></a></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYWm45GsRvCdCOp7ffKWy1YLVHLeLl7hLdIptizHrDqvVAViDYE2uGwSFtt2xagGXHDvIjuA1y_pgvYd4ZalkRG2x0Vm_CyEOakvTLsv55y0iQ5BEEcRVls9wYQFR-FKNL0bV_1bQ6JXec/s1600/LillyCollage.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="500" data-original-width="800" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYWm45GsRvCdCOp7ffKWy1YLVHLeLl7hLdIptizHrDqvVAViDYE2uGwSFtt2xagGXHDvIjuA1y_pgvYd4ZalkRG2x0Vm_CyEOakvTLsv55y0iQ5BEEcRVls9wYQFR-FKNL0bV_1bQ6JXec/s1600/LillyCollage.jpg" /></a></div>
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This is a quote taken from Sammi's Facebook page, which shows just how much love she has for her little girl;<br />
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"<i>As I sit here and watch my daughter sleep, I wonder how I ever
got so lucky to be her Mom. Some days are harder than others but that’s
what makes the good days so much more special. I know you don’t truly
understand right now but as you get older I hope you realize that your Mom has always fought for you and will always fight for you and she
loves you with every bone in her body. You gave me meaning baby girl, and
I’ll be forever grateful for that. I still remember the day the doctors asked us if we want them to do whatever it takes to
keep you alive, one of the hardest things I ever had to hear, but it just
made me fight for you that much more! I left the room that day because I
didn’t want to feel weak around you and as I was sitting in the family
room this beautiful nurse talked to me and she said "Lilly will write
her own story, no one can write it for her." And wasn’t that true! You
have overcome so much and will continue to overcome many obstacles in
life but just know you never have to do it alone</i>."<br />
-Love Momma<br />
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Sammi, thank you for sharing your daughter's story, and thank you for making me aware of a condition that I had never heard of before! I have said many times that when you have a child with a disability, regardless of the diagnosis, many of the feelings are the same. As parents, we all want the best for our children - we want them to be happy and to know that they are loved. Your sweet Lilly certainly seems to have a lot of love around her, and that beautiful smile of hers says everything! I love how you speak about your daughter, as this is exactly how I feel about my own son. I feel so lucky to be his mom, and am so thankful that he is mine. Lilly will continue to surprise you, overcoming challenges and living a life with independence and a strong spirit. She is a treasure, and I wish your family nothing but happiness and love! <br />
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* If you would like to be featured on Tulip Tales, please email me at:<b> </b><a href="mailto:juliebrocklehurst@hotmail.com"><b>juliebrocklehurst@hotmail.com</b></a><b> </b>Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-20617834480862691242019-03-15T11:19:00.001-07:002019-03-15T11:28:52.210-07:00KoolKapes for Cool KidsA couple of years ago, I introduced you to <a href="https://koolwaysports.com/" target="_blank">Koolway Sports</a> - a company that designs and manufactures outerwear for people with disabilities, enabling them to
achieve their maximum level of independence in all aspects of life. (You can see my previous posts <a href="https://www.throughthetulips.ca/2015/07/live-life-koolway.html" target="_blank">HERE</a> and <a href="https://www.throughthetulips.ca/2015/11/cool-kids-wear-koolkoats.html" target="_blank">HERE</a>).<br />
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Brennen has outgrown his <a href="https://koolwaysports.com/product/winter-jacket-blanket-front-blanket-back/" target="_blank">KoolKoat</a>, which we enjoyed for several seasons and many winter adventures, and we have passed it on to a family who is now enjoying it with their own little boy.<br />
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This year, we are excited to try out the <a href="https://koolwaysports.com/product/kool-kape/" target="_blank">Koolway KoolKape</a>! With a water-resistant outer shell and a warm layer of fleece inside, the KoolKape is practical, functional, and it looks really good! We struggle with dressing Brennen at times, so the ability to pull a cape on over his head in one smooth motion is a blessing. There are adjustable toggles on the sleeves to adjust for sleeve length and tightness, and a hood that can be removed or tucked under his headrest when not in use. <br />
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We will be happy to put away our heavy coats and boots after what has seemed like an endless winter here in Newfoundand. Temperatures are finally beginning to rise above the deep freeze that we have been in, and +1 and +3 degrees is starting to feel a lot like spring! We were happy to see the sun yesterday, so Brennen and I took a leisurely walk around the grounds of Government House. The KoolKape is perfect for this type of weather, and Brennen was cozy and warm, and super comfy for our afternoon out and about. <br />
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Walking around yesterday with Brennen, enjoying the sunshine and blue skies, I felt reassured with every step that spring might be right around the corner. I think everyone just feels better when the weather is good, and I am all for feeling better! There is a sort of energy that is reborn in the city each spring, with people outside, parks and playgrounds full of kids and families. People seem happier when they are not rushing around with their heads down trying to block the cold sleet and wind from their eyes. I know I talk a lot about how we love spending time outside together as a family, I feel like a broken record, but my excitement is hard to contain at times when life feels good.. and yesterday was good! Hopefully this is the start of more beautiful spring-like weather! <br />
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Check out the KoolKape and other adaptive outerwear at <a href="https://koolwaysports.com/" target="_blank">Koolway Sports</a>!Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-4870089767493328082019-03-06T10:32:00.001-08:002019-03-06T10:52:05.881-08:00Tulip Tales: Trent<span class="_5yl5">You guys! I am excited to share a new <a href="http://www.throughthetulips.ca/p/tulip-tales.html" target="_blank">Tulip Tale</a> with you all today, and I have several more in the works! This series really is my favourite thing about my blog. I just love being able to share the stories of these remarkable children and families. I read them over and over because they are all unique and all so important. I am continually encouraged and challenged to share my own personal story - to share a glimpse through the window of special needs parenting, but it is in reading the stories of other parents that I find comfort and learn so much. </span><br />
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<span class="_5yl5">Trent Gerald James Vincent was born on December 4th, 2012, in Corner Brook, Newfoundland. His Mom, Abby shares his story.</span><br />
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<span class="_5yl5">With a seemingly healthy pregnancy, I gave birth just one day before my due date and was sent home with a "perfectly healthy" baby boy. We had no reason to think there was anything wrong.. until there was.</span><br />
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<span class="_5yl5">When I look back on the day of my delivery, I remember the overwhelming rush of love and pride along with a sudden worry of knowing that something was just not right. I remember being shunned during my labour pains for being "a baby having a baby". At just 15 years of age and about to deliver a baby of my own, I felt that I was not being taken seriously. When I was 9 cm dilated, my body began to push and I knew it was time for Trent to make his arrival. The next thing I knew, I was getting an epidural to relax me as we waited for the doctor to finish up a meeting. This was 14 hours after first arriving at the hospital so naturally my body was drained and I had fallen asleep. The doctor finally arrived and said it was time for me to start pushing. I was tired, weak and though I tried as hard as I could, the baby was just not moving. With the help of the doctor's foot on the hospital bed and a vacuum extraction, with a few tugs he was out. He did not cry. He was blue, grey and lifeless. He did not suck from a bottle and did not make a sound. I felt in my heart that there was something wrong but I kept being told that he was perfectly healthy and that we were "lucky" because he was a very content and quiet baby. With that, we were released from the hospital. </span><br />
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<span class="_5yl5">As the days went on there was still no improvement. I remember the long nights trying to feed Trent his bottles - it would take multiple hours just to get two ounces into him, and he spent ninety percent of the day sleeping. He did not cry when he was hungry or had a dirty diaper, he simply slept. Being a worried first time mom, I set alarms to feed Trent regularly, making sure he would not go hungry or dehydrated. </span><br />
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<span class="_5yl5">When he was two months old, I was feeding Trent his bottle when I felt him become more lethargic than usual. I immediately took the bottle from his mouth and tried to get some movement out of him. He wasn't responding. He turned completely blue and was lifeless. I jumped up and screamed to my fianc</span><span class="_5yl5"><span class="st">é</span> and we rushed to the hospital with our baby in my arms. I was hysterical. I could feel my little boy fading away from me. We were told that he had choked on his milk and that he has acid reflux, but my motherly instincts kicked in and I demanded they do more testing before sending us back home. </span><br />
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<span class="_5yl5">After an EEG, the doctor came running back to the room in a panic. His brain scan showed seizure activity and we were airlifted to the Janeway Children's Hospital within the hour.
The most terrifying moment in my life was the day we were told our little boy would be in a vegetative state and there was nothing they could do to help him. They told us that we should prepare ourselves for the worst. Trent was diagnosed with epilepsy and global developmental delay.
After spending a few months at the Janeway doing more testing and talking to specialists about our new life with Trent, we were once again sent home, feeling defeated and even more confused as to how this could happen to my little baby. </span><br />
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<span class="_5yl5">Trent has brought us closer as a family. We only want the best for him, to make sure he has as much support and love that he needs and we are determined to push through every obstacle together. Trent is a wonderful big brother to his two year old brother, Jack, and as you can see, there is a lot of love shared between them!</span><br />
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<span class="_5yl5"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjv0OvHHwiQ7gMoJ9BzROudhgbrh6omyiIhupw0vKhDZePstMze1HhD7hQdsnTPwrshEM2g92abCjpQWmYDBrIrEr8g-vgRseqINrBF_F4cV0iJY4CK5pBYzOX-gtI9zHuj5D6RJBBVuDOw/s1600/Trent3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="559" data-original-width="800" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjv0OvHHwiQ7gMoJ9BzROudhgbrh6omyiIhupw0vKhDZePstMze1HhD7hQdsnTPwrshEM2g92abCjpQWmYDBrIrEr8g-vgRseqINrBF_F4cV0iJY4CK5pBYzOX-gtI9zHuj5D6RJBBVuDOw/s1600/Trent3.jpg" /></a></span></div>
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<span class="_5yl5">Beating the odds, Trent is now six years old and is still our pride and joy. He is such a happy, content and loving little boy.
He continues to brighten our world and teach us the true meaning of life each and every day! Although the past six years have been a struggle from multiple therapy appointments, doctors appointments, ISSP meetings, checkups, numerous phone calls, and the constant battle for inclusion services, I can not imagine life without him. We face new obstacles every day as he grows and gets bigger, but we do so with a smile. Our main goal is to give our son the best life possible, as he has made our lives so full. Who knew someone so small could impact and brighten your life in such a drastic way!
I am so thankful to be his Mom!</span><br />
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<span class="_5yl5">Thank you so much, Abby for sharing your son's story! He is such a beautiful boy, and reminds me so much of my own son, <a href="http://www.throughthetulips.ca/2014/01/tulip-tales-brennen.html" target="_blank">Brennen</a>. I remember how hard it was in those early days, shortly after Brennen was born. I just knew in my gut that something was wrong, but no one took me seriously either, and like you, I remember feeling so helpless and so alone and I would never, ever want to go back to that place. It is difficult to imagine, when you are in the thick of such a trying time, that things are going to work out and that you will find any sense of peace. It is amazing what we as mothers are capable of. Our strength and resilience are unwavering, fueled by our intense love for our children. Over the past fourteen years, I have learned a lot about myself as a mother. I have also learned a lot about grief and acceptance, the awareness they can bring, along with a distinct gratitude for the life we are living.</span><br />
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<span class="_5yl5">Abby, I am happy to see that you have a loving family around you for support, but know that if you ever need someone to talk to, I am here. </span><br />
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* If you would like to be featured on Tulip Tales, please email me at:<b> </b><a href="mailto:juliebrocklehurst@hotmail.com"><b>juliebrocklehurst@hotmail.com</b></a><b> </b>Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-26870718974842463912019-02-24T11:00:00.001-08:002019-02-24T11:00:07.220-08:00A Night at The Whale HouseThis past Friday, Andrew and I decided on a whim to drop everything and head out of town.<br />
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I'm kidding. That's not how it happened at all. We don't live like that, unfortunately. Our road trip and getaway was planned weeks in advance with lots of scheduling and planning for who would care for our three children, who would pick up who and when, and where everyone had to be at certain times. We carefully and methodically packed up their medicines, feeding supplies, wheelchairs and books of emergency contact numbers and handed over our responsibilities to people we could trust. It doesn't always work out for us, but when it does, it's like a well oiled machine - people jumping in to take over and let Andrew and I sneak away for a night.. it's a beautiful thing!<br />
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Because we had planned this weeks ahead of time, we had no idea that we were going to be in the midst of a "polar vortex". That's a fancy name for "too cold to be out"! It started the middle of last week, and we have been enduring a swath of bitterly cold, dense air ever since. We are braving the coldest temperatures our province has seen in 25 years. This is no joke. Over the weekend, with the wind chill it was -30 degrees Celsius. That means a risk of frostbite to exposed skin within minutes, and the damp cold just cuts right through you. It was freezing.<br />
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We piled on our layers and headed out the Southern Shore Highway, to the town of Mobile, where we had a reservation at the <a href="https://www.whalehouse.ca/" target="_blank">Whale House Guest House</a>. The Whale House Guest House is located in the middle of the Witless Bay Ecological Reserve, and overlooks the Atlantic Ocean. It is actually Heaven on Earth. <br />
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We live in such a beautiful place, and that never gets lost on us. Andrew and I spent all day Friday exploring some communities further out the Shore, driving through Cape Broyle, Calvert and Ferryland, and we made a point to check out the wind farm in Fermuse. We had been there several years ago, but it is just so cool, we had to go again. There are nine wind turbines, and they are massive. It really is quite impressive.<br />
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In Ferryland, we hoped to pop in for tea at the Tetley Tea Room, but it was closed for the season like many of the other little shops and cafes we passed along the way. We love playing tourist in our own home province, and it is lovely in the summer when business is bustling, but there was something really special about being out on our own, off season, and not seeing another soul. It was quiet and desolate and it was exactly what we needed. <br />
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We found ourselves in Burnt Cove, where we stumbled upon another little hiker's paradise. </div>
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We'd love to go back over the summer to do part of the East Coast Trail here.</div>
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That's a seal! I was looking at the cool bubbly ice formations, when Andrew spotted him, and we were so excited! We kept our distance but stopped to watch him sunbathe for as long as we could until we were too cold to stay out any longer. This was definitely a highlight of our adventures!<br />
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We took a drive around Tors Cove, one of our favourite little communities on the Southern Shore, and almost killed ourselves walking down the icy path to The Cribbies, but it was totally worth it!<br />
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The Witless Bay Ecological Reserve is "one of nature's greatest wonders anywhere on earth", and while it was lovely, we nearly froze to death here. Just behind this mound is a small sandy beach, and I wanted to spend more time there, but I could honestly feel the blood draining from my lips. Frost bite is no joke, so we ran back to the car as fast as we could to warm up. We will hit the beach another day. <br />
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We had the best time exploring the good ol' Southern Shore, and we couldn't have picked a better place to stay. The <a href="https://www.whalehouse.ca/" target="_blank">Whale House Guest House</a> was perfection. After a day of adventures, we spent the most restful, relaxing night in the <a href="https://www.whalehouse.ca/accommodations/bluewhale" target="_blank">Blue Whale Suite</a>.
We had our own private hot tub, which we enjoyed at midnight, looking out at the ocean, gazing
up at the stars, and counting our many blessings. We are thankful for
our children, for our family, for our full and busy life.. and we are extra thankful for this
little break from it all.<br />
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Now we are home and back into the thick of it, refueled by the deep breath of alone time we just experienced. If you have the opportunity to sneak away for a night or two, I seriously recommend it. Don't mind the cold. Just go. Live. Experience. Make memories. Fall in love all over again!<br />
<br />Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-53815874627629603082019-01-28T07:26:00.000-08:002019-01-30T09:53:28.460-08:00Riding the TrailsThis past weekend, we borrowed a Hippocampe from the City of St. John's and were super excited to take Brennen out on the trails! The Hippocampe is an all-terrain wheelchair that offers individuals with disabilities access to areas that would be impossible to navigate in a standard wheelchair.<br />
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It comes with three sets of wheels, including a ski kit for the snow and balloon wheels, which are perfect for going over rocks and sand, making beach and water-related activities accessible. We had a ton of snow here last week, but over the past few days it has all but disappeared. We were hoping to use the ski kit to take Brennen out on the trails while Andrew and I snowshoed along with him, but there wasn't enough snow for that. Instead, we headed to Voisey's Brook Park and used the double back wheels, which were perfect for off-roading and bumping over the ice-packed trails.<br />
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We live in Newfoundland and the reality of that means we have more winter weather than any other season of the year. This includes below freezing temperatures, heavy snowfalls, and other forms of freezing precipitation. We don't mind the weather, and can actually enjoy it if we are dressed appropriately and have the right equipment. The Hippocampe makes getting out for a walk on a sunny January afternoon a possibility for us, and Brennen loves it! The patches of ice and hard-packed snow were no match for these big wheels.<br />
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How wonderful it felt to be standing under the cold blue sky, surrounded by nature - Andrew and Brennen and I, with red cheeks and chapped lips foraging a trail on a snowy path. It was perfection. Some days are really challenging, I'll be honest, but on this day I felt so much love and peace and gratitude for where we are right now.<br />
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We do our best to enjoy our winter climate, and take every opportunity to get Brennen out in the elements - including the cold and ice and snow - to appreciate the unspeakable beauty this world has to offer. We look forward to trying out the Hippocampe with skis after the next big snowfall.. which I'm sure is just around the corner!<br />
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<h4>
The City of St. John's has adaptive equipment available to individuals who require their use. An ice sledge, hippocampe, snow coach and sit ski are available to rent at no cost, but must be pre-booked by calling 709-576-6972 or emailing <a href="mailto:inclusion@stjohns.ca">inclusion@stjohns.ca</a></h4>
<br />Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-22139245612117415372019-01-17T05:38:00.001-08:002019-01-21T04:32:35.345-08:00Send Happiness Project<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixO2eoSLsq5xPuKPF1o1Tq-JcCOyj_LJ9D-lT0Vw2iB85RxqYGw9Oqy2Xe5O5kL2D0PsANDgWgQI0apKINvzb7u26mQZTTraFcvffIeeTu7trNBxl0BX9crQh6PNwZCq62LgrSCRSjR2B1/s1600/SEND-HAPPINESS.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1080" data-original-width="1080" height="640" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixO2eoSLsq5xPuKPF1o1Tq-JcCOyj_LJ9D-lT0Vw2iB85RxqYGw9Oqy2Xe5O5kL2D0PsANDgWgQI0apKINvzb7u26mQZTTraFcvffIeeTu7trNBxl0BX9crQh6PNwZCq62LgrSCRSjR2B1/s640/SEND-HAPPINESS.png" width="640" /></a></div>
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You might remember my post last year about <a href="https://www.throughthetulips.ca/2018/06/petit-mail.html" target="_blank">Petit Mail</a> - 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.<br />
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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. <br />
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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 <a href="https://www.throughthetulips.ca/2017/02/spinal-fusion.html" target="_blank">this one</a>) 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.<br />
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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. <br />
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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 <a href="https://petitmail.ca/2018/12/17/send-happiness-project/" target="_blank">Send Happiness Project</a> - delivering snail mail to children who might need an extra smile in their day! <br />
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Brennen and I will be personally helping to deliver these special cards, and every purchase will be matched with a donation (1 purchased = 1 donated). <br />
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Our goal is to brighten the days of 500 children in 2019!<br />
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<a href="https://petitmail.ca/product/send-happiness-project/" target="_blank"><img alt="https://petitmail.ca/product/send-happiness-project/" border="0" data-original-height="90" data-original-width="728" height="79" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhggAPlvXwupcac9dBtNmZ-vSgp9_J2t_0hBXOTrFQAbCd3q9Tq0gC1rRVv7HSZaq3mkRCmg-kVkYWy-wh8TXqqKslChAg444WAHETM7hwqX26G2otZwx40uWxTv-rY7wPFyizgV6FPqB4a/s640/Purchase-Happy-Mail-Here.png" width="640" /></a></div>
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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. <br />
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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.<br />
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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!Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0tag:blogger.com,1999:blog-5751318017918482656.post-28254626995325762102018-12-10T03:41:00.001-08:002018-12-10T03:42:56.753-08:00Fostering Family<div class="separator" style="clear: both; text-align: center;">
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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. <br />
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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.<br />
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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.<br />
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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!"<br />
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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, "<i>We are not in the mall!!</i>"<br />
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So many photos!<br />
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<br />
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.<br />
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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.<br />
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I wish you all a happy December.. and maybe even a silent night!<br />
All is calm, All is bright?! (Ok, I won't go that far!) Julie Bhttp://www.blogger.com/profile/13818732781821629832noreply@blogger.com0