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  

Sunday, February 24, 2019

A Night at The Whale House

This past Friday, Andrew and I decided on a whim to drop everything and head out of town.

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!

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.


We piled on our layers and headed out the Southern Shore Highway, to the town of Mobile, where we had a reservation at the Whale House Guest House. 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.

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.


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.


We found ourselves in Burnt Cove, where we stumbled upon another little hiker's paradise. 
We'd love to go back over the summer to do part of the East Coast Trail here.


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!

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!


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.


We had the best time exploring the good ol' Southern Shore, and we couldn't have picked a better place to stay. The Whale House Guest House was perfection. After a day of adventures, we spent the most restful, relaxing night in the Blue Whale Suite. 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.


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!

Monday, January 28, 2019

Riding the Trails

This 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.

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.


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.


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.


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!

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 inclusion@stjohns.ca


Thursday, January 17, 2019

Send Happiness Project


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

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

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

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

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

Brennen and I will be personally helping to deliver these special cards, and every purchase will be matched with a donation (1 purchased = 1 donated).

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


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


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


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

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

Monday, December 10, 2018

Fostering Family


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

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

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

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

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

So many photos!


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

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

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