Wee Piggies

I'm not a hoarder, I swear. Ok.. my closet looks like it belongs to a hoarder - like a serious hoarder from the tv show, and I acknowledge that I have a problem there, but the rest of our house is fairly tidy and organized. I get rid of things when I can - donating clothing, toys and household items to charity, and we've had a few garage sales over the years, but there are just some things that I need to hold on to.

I love anything personal and homemade. Our home is filled with beautiful keepsakes that combine to tell our story - handmade blankets that were gifted to us, personalized drawings of our family, items we've brought home from our travels that remind us of where we've been and where we are right now. It's all so special and meaningful, and so.. us. 

I love checking Brennen's bookbag each day after school to see what treasures he's been working on. I have boxes and boxes of crafts and paintings and projects that he's come home with over the years, and I find it hard to throw anything away. It's just all so special. Anything that his little hands have touched means the world to me.

I keep birthday cards and invitations, boarding passes and concert tickets. I have Brennen's first lock of hair beautifully preserved in a scrapbook that also holds many other treasures, like his ultrasound pictures and birth announcement. I take photos of everything, and I remember important dates. I have the program from his first music recital, and certificates from everything he's ever been involved with, tucked away in a safe place to save forever. I keep report cards and progress reports, hospital bands, newspaper clippings, and anything that holds meaning and memories that I never want to forget. 

I am acutely aware of how quickly time passes, and I want to hold on to every second. Brennen is growing up before my eyes. He's not a baby anymore (though he will always be my baby), and I am trying to hang on to every moment of his childhood. My heart skips a beat when I realize that he will never be this little again. I want to remember how his hands fit into my hands, how his body curls into mine, and how his head tucks perfectly under my chin. This is the joy of motherhood.

Now, don't get me wrong, I'm not all "Debbie Downer" about it either. Sure, thinking about the future scares the crap out of me sometimes, but to be honest, I am excited for the future, and for new adventures. More growth and learning can never be a bad thing. Time is a gift that I am happy to receive.

Wee Piggies was started in 2001 by a Mom wishing to capture her children's unique hand and footprints. As the brand evolved, product lines were successfully added to include Sterling Silver Fingerprint Jewelry.. which I absolutely adore!!

I love learning about the different ways that women are able to balance their personal and businesses life, and I am always inspired by women who are able to work from home while raising their children. Charlotte Dinham is the operator of Wee Piggies & Paws here in St. John's, and she is doing just that. Charlotte is a mom of two, and a proud business owner. She loves meeting clients in her home, and capturing the 'newness' of babies and the uniqueness of children. Charlotte is an absolute delight to work with! She was so gentle with Brennen when taking his thumb print, like she's known him forever.

Wee Piggies is proud to be a Canadian company, started and run by Moms who strive to balance work and family while at the same time, make a difference producing one-of-a-kind, beautiful, lasting keepsakes. Wee Piggies produces a range of children's memorabilia, including Shadow Boxes, LifeCast Statues, Raised Impressions, Photo Crystals, and Sterling Silver Jewelry. Each piece is truly one of a kind, created just for you.

I just love having Brennen's little fingerprint and his name hand-stamped in a heart, close to my heart. It is so personal and meaningful, and I will treasure it always.

Check out Wee Piggies & Paws, and their beautiful collection of meaningful gifts and keepsakes!

Cool Kids wear KoolKoats

A few months ago, I introduced you to Koolway Sports - a company that designs and manufactures outerwear for people with or without disabilities, enabling them to achieve their maximum level of independence in all aspects of life.

With the changing of the seasons, and the first taste of snow, we are preparing for the long Winter ahead.

We have always had the challenge of getting Brennen dressed for the cold. His little body gets chilled to the bone if he is not snuggled up in a warm blanket, and if he gets cold outside he is NOT happy. Not only are we faced with the issue of keeping him warm enough, but there is also the struggle of getting his arms out through the sleeves of his coat, fighting against his spasticity. Every year, we end up with a tear under the arm and a hole down at least one side of his coat. Not cool.

This year, we invested in a Koolkoat from Koolway Sports and our problems have been solved!

The Koolkoat can be worn as a jacket:

 ...or with the super-warm "blanket" attachment:

My child will NOT be getting cold! 

The wonderful thing about the Koolkoat is how easily it goes on. It goes over the head like a cape, with a front half-zipper, and then zips down the sides. The Koolway sleeve zipper starts at the wrist cuff and goes up under the arm, down the side of the jacket, to the waist. Both sides unzip fully so that there is no struggle with arms in sleeves. Now, instead of trying to fight Brennen's tight limbs into his jacket, the jacket zips up around his arms. It's genius.

The jacket is custom made to order, sized to fit each individual and their custom chair. It is beautifully crafted and shaped to fit the body, eliminating excess fabric in the lower back.

The blanket attachment zips onto the bottom of the jacket, and can be worn over just the legs or over the entire footplate and wheelchair leg framing. It is perfect for when you are going to be spending a longer period of time outdoors - playing in the snow, sliding on the ice, or sitting around a Winter campfire! The black "Slip-Not" on the bottom of Brennen's blanket gives extra protection from the elements such as water, ice and slush, and it is stain and abrasion resistant. The coat and blanket are insulated with Powderfill for extra warmth. It is breathable, moisture-resistant and machine washable.

I am so thrilled that we discovered the Koolkoat from Koolway Sports! I know that Brennen's coat is going to make a huge difference to him this Winter, and that it will allow us to spend more time outside together as a family. Andrew and I enjoy snowshoeing, and we love to pull Brennen along with us on his sled. We have only ever been able to go for short distances, before Brennen would get too cold, so I'm thinking this year we can tackle some more serious trails! I know it's still early November, but I say, bring on the snowy adventures! We are ready!

If you have any questions about the Koolkoat, or any other Koolway products, please feel free to contact me!

Every Meal is a Happy Meal

We've had our fair share of hospital visits with our son, Brennen. He has had a number of surgeries that have required him to be admitted to the Janeway for several days and nights. We are fortunate that we live fairly close to the hospital, so Andrew and I can take turns running home to shower and change, and to catch some much-needed rest before facing another challenging day. For families who live outside of the city, that is not so easy. It must be a tremendous worry to have a sick child, and be faced with leaving your home, unplanned, for an undetermined amount of time.

Ronald McDonald House Newfoundland and Labrador offers a home-away-from-home for families, providing comfortable and affordable accommodations while their children receive care and treatment at the Janeway Children's Hospital in St. John's. Their priority is to provide a secure and stable environment for families during what can be a very stressful time.

Our local Ronald McDonald House provides the simple things that put some joy and normalcy back into families lives, like sitting down for a home-cooked meal together, and waking up together, under one roof, ready to face the tough day ahead. Some families stay for just a short time, others for weeks, months, and sadly, some stay for a year or more. Ronald McDonald House Newfoundland and Labrador truly offers a place where families are taken care of so that they, in turn, are better able to care for their children.

Every day for the past 10 years, Canadians have supported Ronald McDonald Houses across the country through the McDonald's Happy Meal donation program - 10 cents of every Happy Meal purchase goes directly to RMHC. The program has helped support 20,000 families every year across the country.

On September 17th, Ronald McDonald House families had the opportunity to thank Canadians for their support in a very special way! All customers in McDonald's restaurants across the country received their order in a Happy Meal Box that included a personal Thank You card from a family that has stayed at a Ronald McDonald House. This was the first time that Ronald McDonald House families have been able to express their gratitude to Canadians for their support through the Happy Meal program.

Click this video to watch the magic happen!

Over 75 families from Ronald McDonald Houses across the country created personal Thank You cards, including Selina and Sheldon Carroll. They have been staying at Ronald McDonald House NL since March, when their son, Michael was born prematurely. (That's Michael's little footprint on the blue heart!) The Carroll's are from Labrador City.

Michael Myles Joseph Carroll was born on March 20, 2015 at 8:41 am, weighing 2 pounds 2 ounces.

His birth was very early, and with that came a whole slew of premature complications. Michael was also born with several surgical complications which cannot be repaired until he grows bigger and stronger. His Mom, Selina says, "Throughout it all, our son has been such a fighter. He has been through more in his short life than Sheldon and I have been through in our whole lives. He is our little miracle, our hero and our true inspiration. Words cannot describe how thankful we are for the love and support that our families and friends have shown to us throughout this very difficult time. We can't wait for the day that Michael is strong enough to come home."

Selina says that they are extremely thankful to Ronald McDonald House. Inside their Thank You card, she wrote:

"Thank you from the bottom of our hearts for providing us a second home while our premature son is being cared for in the Janeway. Through all our ups and downs on Michael's journey, the staff and volunteers here at the Ronald McDonald House have been so supportive and loving. From the home cooked meals, happy faces and late night chats, our stay has been second to none. So very grateful for everything and everyone. We have met friends here that we will have for life, and that is a great gift."

I was thrilled to have been invited to attend this very touching event. It was a pleasure to meet this sweet family, and to learn about their precious baby boy. It was especially moving to see the expression on people's faces when they unexpectedly received a Thank You card with their meal.

"Thank You."

There is so much packed into those two little words. Gratitude is a wonderful thing, and I firmly believe that it is just as important to show it as it is to receive it. Appreciating the beauty in the big and small things, in the people around you, in the good efforts and good intentions of others, and recognizing what makes you truly thankful and happy about right now can have a powerful impact on your state of mind. When faced with a challenging situation, it can be comforting to acknowledge the blessings, and to give back and show gratitude to others for their acts of kindness towards us.

Little moments are to be celebrated, and on this day, we celebrated all of the people who purchased meals at McDonald's restaurants, who in turn helped people like the Carrolls in a big way.

It was a very moving experience, and one that will stay with me, as I try to instill a strong sense of gratitude within my own family.
We are happiest when we are most grateful.

To see all of the cards and for more details on the Happy Meal program, please visit RMHCThankYou.ca
 

I'm Going Back to School, Too!

Changing the Face of Beauty is an organization whose purpose is to encourage companies, other organizations, and the media to include people of all abilities in their advertising. Founded by Katie Driscoll and Steve English, their goal was to show the world how beautiful all people are.

Katie is a mother of six children, including a young daughter who has Down syndrome. She found herself searching the 'Back to School' mail-outs, catalogs and online marketing campaigns looking for pictures of kids with physical disabilities who use a walker or a wheelchair, or kids with intellectual disabilities, like her daughter. She found none. Not one model in close to 50 ads included one child with a disability.  Not one. These children were just not represented. Katie thought, "I can’t figure out how kids like my own girl work 365 days to keep up with their peers yet they are still not valuable enough to be seen in advertising that is directly marketed at their peer groups."

Changing the Face of Beauty is making a difference. In just 3 short years, they have committed over 100 companies to include models with disabilities in their advertising. They helped put the first model with Down syndrome on the runway at New York Fashion Week, and they created 4 amazingly successful campaigns that reached around the world. 

In 2014, Katie created a viral "Back to School" photo shoot that reminded the advertising community that children of all abilities are returning to school. She casted her own models, and reached out to some top children's clothing lines. You can see the awesome results of her shoot HERE.

This year, one of the companies who has committed to include models with visible differences in their advertising is Livie & Luca.

Incorporating people with disabilities in children's advertising and representing all people will change the fashion industry (and the world) for the better and will spread an incredible message about acceptance.

Positive representation matters! 

13% of the children returning to school this year have a disability. 

My son, Brennen is one of them.

We are proud to support companies that have made a commitment to include individuals with visible differences in their 2015 advertising.

Here is Brennen, rocking his new Livie & Luca 'Sherlock' grey wool booties. Perfect for the Fall, and ready for school!

Come on, friends! Make sure your little student is seen this back to school season by posting a picture on social media and using the hash tags:

#changingthefaceofbeauty and #imgoingbacktoschooltoo

Our Greatest Teacher

Several months ago, I was contacted by Brennen's Special Education Teacher, saying that her daughter had an assignment for school, and wondered if she could ask me a few questions. 

Actually, the email went like this:

"Hi Julie! My daughter is doing a recreation course at MUN and has to do an assignment that involves working with an individual with a disability so that they can learn about modifying activities and using specialized equipment. She came home all excited saying that she immediately thought of you and Brennen, and has been begging me to ask you. I think it involves actually participating in activities as well as a few questions for the caregiver. I know you are super busy so if you'd rather not, I completely understand. If it's ok, I'll pass along your email address and let her get in touch with you. Thanks!"

Alyssa is a student of the MUN School of Human Kinetics and Recreation, and this assignment was part of her Adapted Physical Activity course. 

As the course description states, "Adapted Physical Activity presents an overview of current practices, philosophies, and issues related to physical activity and recreation for persons with disabilities. Knowledge and understanding of various disabling conditions and consequent needs of persons with disabilities, including health, safety and fitness, and how these needs may be met in terms of physical activity will be emphasized." 

When I spoke with Alyssa, she explained that her assignment required her to work with a 'mentor' - someone she could spend time with and learn from. 

The typical definition of 'mentorship' is "a personal developmental relationship in which a more experienced or more knowledgeable person helps to guide a less experienced or less knowledgeable person. A mentor must have a certain area of expertise. It is a learning and development partnership between someone with vast experience and someone who wants to learn."

In this case, I was not going to be her mentor. Brennen was.

Here is what Alyssa wrote about her assignment:

*****

At first, when I was faced with a term project in my Adapted Physical Activity course, I was worried. The project required that I find a mentor with a disability, someone who I could spend time with and get to know. I was worried I was going to be uncomfortable, I was worried about saying the wrong thing, and ultimately, I was worried about not finding a mentor- until I thought of Brennen and his family.

Over the course of the semester I hung out with Brennen, Julie and Andrew at their home and occasionally went to school with Brennen himself.

At school, we went to music class, we had 'buddy reading' and we went on a skating field-trip. It was extremely heart-warming to see Brennen interact with other kids his age. Whether it was reading to him in class or pushing his sledge around the ice, the other children and teachers were eager to make Brennen feel welcome, accepted and loved. We often worry about disabilities getting in the way of interactions and friendships, but Brennen may very well be the most sociable ten year old I know!

When I visited Brennen at home, I was welcomed with open arms and the brightest smile you’ll ever see! Brennen’s goofy giggle is enough to light up a room! During my visits, Brennen would chill out and watch his favourite t.v. shows while I had the chance to talk with Andrew and Julie. We talked about a lot. We talked about many organizations that are dedicated to offering opportunities to people who are living with disabilities - organizations such as Easter Seals. They introduced me to so many different types of sporting equipment that is available, most of which I had never heard of. 

Julie gave me a tour of their accessible home and their beautiful child care centre for children with disabilities - Little Tulips Family Child Care. She talked me through a typical day at Little Tulips and described how she and Andrew spend their time with these amazing little kiddos. During my visits with Brennen at home, I was also able to see their Snoezelen Room (a larger version of the sensory room at Brennen’s school). I was amazed at how dedicated Julie and Andrew are to Brennen’s well-being. It was incredibly inspiring. We talked a lot about Brennen. We talked about his likes and dislikes, and for the record, Brennen LOVES cheesecake and carrot cake! (Then again, who doesn’t?!)

I was able to learn so much from Julie, Andrew and especially from Brennen. I learned that I was worried about this project for nothing. I was never uncomfortable, I never felt like I was saying the wrong thing, and I absolutely knew that I had found the perfect mentor! 

I learned that a person with a disability is just the same as a person without. Brennen is a happy child, a child who thinks, feels emotions, makes friends, plays sports and enjoys life! He is just like anyone else, and I’m so happy to have had the opportunity to sit down and discuss so many things that I was unsure about in the past. I am so thankful to Brennen and his family for teaching me, inspiring me and for being my mentors! It was an unforgettable experience and I can’t wait to come visit again soon- thank you!

Much love,
Alyssa

*****

Thank you, Alyssa! It was a pleasure spending time with you, and I know that Brennen greatly enjoyed your company!

Just as you learned a lot from this assignment, we are in a constant state of learning. Brennen is our mentor. He is teaching us every day about love, about life, and about how to really live. I am glad that we were able to share that with you, and to have a positive impact on your life.

There is so much that we can learn from people with disabilities. They teach us to slow down and appreciate the little things. They teach us about compassion, joy, and unconditional love. They teach us that sometimes life doesn't go exactly as planned, but that it sometimes ends up even greater than we could have imagined!

The world is rich with so many different kinds of people. The more of these people we meet, the more differences we encounter, the more we take the time to truly listen and learn, the more we will discover about ourselves and find our own place in the world.

Alyssa, thank you for spending time with us. I wish you every success in the future. I know you will do great things!

-Julie

Tulip Tales: Owen

I have said many times before that I love connecting with other families of children with special needs, and if I can help make that connection for someone else, I am even happier.

Owen Baker is a handsome and happy little boy! In this blog post, his Dad, Matthew shares some thoughts about his son, in hopes of connecting with other families who might have children with a similar diagnosis. If you know someone who has Agenesis of the Corpus Callosum, or a similar brain disorder, this family would love to hear from you! 

 ***** 

Not long ago, I was tasked with writing a little piece about my son as a way of introducing him and his disorder to people who might not be familiar with his diagnosis.

Owen has a rare neurological disorder called Agenesis of the Corpus Callosum (ACC). He was born without a corpus callosum, which is the small bundle of nerves that connects the right and left sides of the brain. The vast majority of the human population have been born with it, but to the few without it, life can be a real challenge.

I've been trying to find a way to explain ACC to people who don't quite get it, and this is what I've come up with:

Imagine being in a room with someone who doesn't speak the same language as you. For the sake of the argument, let's say they are speaking French, and you speak English. Now, imagine that a translator is also in the room, and their job is to help you and the other person complete some necessary tasks. It doesn't matter what the goals are, the point is that the translator is necessary in helping you communicate with each other. The translator is the corpus callosum.

Now imagine the same situation, this time without a translator. You and the French-speaking person are asked to do the same things as before, but you have no way to communicate with each other. You know stuff has to get done, but you have no idea how you're going to do it successfully. Eventually, through trial and error, you and your friend find a way to communicate that might seem strange to some people. What works in one situation might not work in another because you are simply not speaking the same language and your reliance on unorthodox ways of communication is bound to cause confusion and oftentimes delay.

Owen is one of those people without a translator/corpus callosum. My fiancé, Annie and I knew it from birth, but we were almost totally in the dark about what it meant. As people tend to do these days, we Googled the information but all we came up with were worst-case scenarios. It was a scary time, but we still held on to some hope that our boy would be fine. We didn't get any real peace of mind until last year (2014) when we traveled to Boston, MA to attend the bi-annual conference put off by the National Organization for Disorders of the Corpus Callosum. To be in a room with five hundred other people who just "got it" was a huge weight off our chests.

Another goal of mine in writing about my son is not just to inform those who don't know about ACC, but to connect with parents of children with any sort of disorder of the corpus callosum - ie. partial ACC, hypoplasia, and so on. Please don't hesitate to contact us and get some dialogue going. The lack of available information is astounding, and I firmly believe that there is strength in numbers. The more people are aware of ACC, the more there will be peace of mind for families like ours.

Owen has grown into such a sweet, caring, thoughtful, polite, and hilarious little child. He is now four years old. As I mentioned, his lack of corpus callosum has hindered his progress in some areas that many people take for granted. He uses orthotics (braces for his feet) to assist in walking, he uses a walker from time to time, and he's been going to weekly physiotherapy, occupational therapy, and music therapy appointments for nearly two years now. His hard work and perseverance has paid off, as just this month, Owen has finally started walking on his own! He is now capable of carrying on a conversation with his Mom and I. He loves the Ninja Turtles, Thomas and Friends, and carries a little stuffed dog named Doggy Doo around with him almost everywhere he goes.

Owen's disorder has taught Annie and I so much about a world we didn't even know existed. A few people have asked me over the last four years if I would change anything about it; Did I ever wish Owen was "normal"? The answer is a resounding NO. This is our normal now. I don't know how to live life any other way, and I wouldn't want to live life any other way. Owen is a truly magical being, and everyone who has ever met him and has gotten to know him would agree.

*****

Matthew, thank you for sharing about your son, and for that perfect explanation of Agenesis of the Corpus Callosum. It really helps to understand how Owen must struggle every day, and it certainly shows how amazing he is! The brain is a wonderful thing, and works in mysterious ways. Owen will continue to surprise you, as he learns to figure things out in his own way. Keep offering him every opportunity to learn and grow, as you have been doing, and he will succeed. I have seen Owen playing baseball, climbing in the playground and hiking some serious trails. There is nothing that he cannot do. You guys are doing an incredible job, raising a very special little boy. I wish you all the best, and hope that you are able to make contact with some other parents who have a child with a similar diagnosis.

To get in touch with this family, you can comment here on this post, or email Matthew at matthewbaker1980@gmail.com

Blue Jays Baseball Academy

A couple of weeks ago, I wrote about how Brennen is playing Challenger Baseball this summer. Well, it's so good, I'm writing about it again!

Challenger Baseball provides children with disabilities the opportunity to play organized baseball in a non-competitive environment. It is a tremendous opportunity for these children, and for families like mine, who never dreamed their child would play in a baseball league. For the third year in a row, the Blue Jays Baseball Academy has partnered with Challenger Baseball to host six Challenger Baseball clinics across Canada, including one right here in St. John's. 

This week, local participants of Challenger Baseball were treated to an afternoon of fun at St. Pat's Ballpark. Blue Jays Alumni in attendance were Duane Ward, Lloyd Moseby, Jesse Barfield and Brian McRae.

We had such an awesome time.. I will let the photos speak for themselves!

Brennen's teachers came to cheer him on!

Playing baseball is a joy and a favourite summer pastime for kids of all ages, but for kids with disabilities, that joy can be thought to be impossible. Playing catch with the pros, running the bases, fielding balls, making new friends, wearing a uniform and having fun. We realized that joy, thanks to Challenger Baseball and the Blue Jays Baseball Academy!  

My father was (and still is!) a tremendous athlete. He was voted St. John’s Male Athlete of the Year for 1969, and is a member of the St. John’s Softball Hall of Fame. My Dad was a first baseman who starred both in St. John’s and Gander. "Brian Brocklehurst earned a great deal of respect for his hitting ability, his fine fielding skills, his impressive leadership and his exceptional sportsmanship under all circumstances. He was simply an excellent softballer who was very well liked." During the 12 seasons he played St. John’s Senior Men’s Softball, he compiled a .283 career batting average with 136 hits, 14 home runs and 61 runs batted in. Though it was absolutely a thrill to meet some of the Blue Jays greatest players, I think my Dad got the most enjoyment this week from watching his grandson play on the same field where he practiced as a kid. 

Parents (and grandparents) of children with special needs want what all parents want: to give their children chances to learn, to try new things, to discover their interests and test their wings. We want our children to live happy and active lives, full of meaningful experiences. We want to immerse them in life's adventures. Thank you, Challenger Baseball, for helping to expand the world of opportunities for individuals with disabilities. Thank you for supporting our children and creating an environment that both challenges and celebrates them!