Monday, April 22, 2019

Exploring Red Cliff with a TrailRider

Today 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 Easter Seals NL, and were excited to get out and explore!

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 "have taken people with disabilities to places they never thought possible", and they are not kidding. This thing is intense, and I actually think it could go just about anywhere.

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.


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!

(Thanks to the lovely people on the trail who graciously took this picture for us!)

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!


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.


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!

Thursday, March 28, 2019

Families in Canada 2019



On March 27 and 28, 2019 in Ottawa, Ontario, the Vanier Institute of the Family hosted the Families in Canada Conference 2019 - a national, pan-Canadian conference with simultaneous satellite events co-hosted by university partners across the country. Memorial University of Newfoundland hosted a satellite event here in St. John's, which explored themes and topics related to families and mobility.

"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.
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.

Memorial University’s Families in Canada Conference 2019 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 was honoured to be invited to speak on a panel entitled: Lived Experience of Mobility and Families. We are the experts of our own lives and yet so often those with lived experience are missing from the conversation. This panel gave voice to those who are most affected by mobility to help others understand how it impacts them and their families.

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.

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.



Thanks to Bojan Fürst for these wonderful photos!

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.

Thursday, March 21, 2019

Tulip Tales: Lilly

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.
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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. 

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. 


I remember asking over and over again "Is she ok?" 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.

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!


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. 


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! 


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 is deaf, blind in one eye and developmentally delayed, but we continue to give her the best life possible and include her in everything she can handle because this girl is a fighter!


This is a quote taken from Sammi's Facebook page, which shows just how much love she has for her little girl;

"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."
-Love Momma


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! 

* If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com 

Friday, March 15, 2019

KoolKapes for Cool Kids

A couple of years ago, I introduced you to Koolway Sports - 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 HERE and HERE).

Brennen has outgrown his KoolKoat, 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.

This year, we are excited to try out the Koolway KoolKape! 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. 

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.


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!

Check out the KoolKape and other adaptive outerwear at Koolway Sports!

Wednesday, March 6, 2019

Tulip Tales: Trent

You guys! I am excited to share a new Tulip Tale 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.

Trent Gerald James Vincent was born on December 4th, 2012, in Corner Brook, Newfoundland. His Mom, Abby shares his story.
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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.


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. 

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. 


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 fiancé 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. 

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. 


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!


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!


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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, Brennen. 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.

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.  

* If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com