Saturday, August 29, 2015

Tulip Tales: Paisley

Throughout a pregnancy, you think about all of the little things, like what you will name your baby. Will they have blue or brown eyes? How much will they weigh? And of course, the most important question: Will they be healthy when they arrive. Thanks to advances in technology, it is becoming easier and easier to detect any abnormalities before you've given birth. It's amazing, really. But what's also amazing (and scary) is how much can go undetected.

Alisha shares the story of her young daughter, Paisley.


I had a fairly normal pregnancy. I found out that I was expecting in January 2014, when I was four weeks and five days along. I went to all of my prenatal appointments, took my vitamins and rested the best I could. My eighteen week anatomy scan came and went like a breeze. Everything looked fine. At twenty-two weeks, I opted to have a 3D ultrasound to see if my little bean was a boy or girl. We were so excited to actually be able to see our baby's face, and even more excited to find out that we would be having a little girl! None of my four ultrasounds ever indicated that there was anything abnormal about my baby. At thirty weeks, I was diagnosed with gestational diabetes. As a precaution, my doctor decided I would get induced at forty weeks; on September 23rd. That day turned out to be the best and also the worst day of my life.

Because of some complications, it was decided that we wouldn't go ahead with the induction but that I would have a Cesarean section instead. They wheeled me away to the OR, and at 2:06 p.m., Paisley was born! Hearing her cry for the first time is something that I will never forget.

When they got back to the nursery with Paisley, they started to notice that her breathing was a bit off. It took what seemed like forever for someone to come and update me on how she was. The nurse finally came in and told me she noticed a hole in the roof of Paisley's mouth while trying to feed her. As it turned out, the trouble breathing was being caused by her tongue blocking her airway. So, not only did we discover that she had a cleft palate, but she also couldn't breathe properly. The local hospital wasn't equipped to deal with this, so she was airlifted to the Janeway Children's Hospital in St. John's (three hours away by car) the next morning. Her dad left for the city as soon as he could, but I couldn't go. 

I was heartbroken. The life I had imagined with my little girl seemed like it was destroyed. How would this affect her speech? How would she eat? Would she need an apnea monitor for the rest of her life? It seemed like all the little questions I had asked myself over the last nine months were mocking me, as we were faced with a series of much more serious questions.

I got to St. John's three days later, and finally held my daughter for the first time. It wasn't as magical as I had pictured it being. There were wires everywhere, monitors were beeping constantly, and we were laying in a huge hospital chair surrounded by a green curtain. I stared at her oxygen monitor more than I stared at her. It was tense, sad and uncomfortable. 

They diagnosed Paisley with Pierre Robin Sequence. This is characterized by a cleft (or high) palate, glossotopsis, and micrognathia. In simple terms, she has a cleft palate, a larger tongue and a smaller than normal jaw. This causes problems breathing and eating, which leads to problems gaining weight in infancy. The jaw does some catch-up growth in the first year, so the breathing problem eventually should resolve itself, except in serious cases. It's hard to detect by a basic ultrasound, and even with a 3D ultrasound this condition isn't easily picked up on. 

The following weeks were long. Paisley was required to lay on her belly or side at all times. She started off on a feeding tube but eventually with the help of an occupational therapist, we tried feeding her with a special bottle. She hardly drank anything. It exhausted her. She would drink 10-20 ml from her bottle, then most of her formula ended up going in her feeding tube so she wouldn't starve. But every day that she took even a little more from the bottle than the last, we celebrated. We were proud, even if she had only managed to drink 10 ml. 

Even simply holding her was a challenge, as she was always in an awkward position to keep her tongue from blocking her airway. The positioning seemed like it wasn't enough to keep her airway open, so doctors inserted an NP tube to assist her. 

The NP tube helped immensely. We could hold her however we wanted. She got better at drinking her bottle, she started to gain more weight and in turn, her jaw began to grow outward. They took out her NP tube on November 1st - one of the best days of my life! Finally, I could see my child without tubes in her nose. 

The next few weeks flew by. She got better and better at bottle feeding and she had no episodes of decreased oxygen. On November 22nd, we finally returned home to Burin - just a day before Paisley was two months old.

Things have only gotten easier since then. Paisley is now 11 months old, and weighs twenty three pounds. She loves to eat. She can say "Mom", "Nan", and "uh oh". She loves to dance and she loves crawling after our dogs. She's come so far from being the baby with tubes in her nostrils. We still go to the Janeway for check-ups every three months, and we're hoping to have her palate repaired by January 2016. 

Becoming a mother has made me stronger than I ever thought I could be, and has made me realize how much the little moments mean in life. We don't take anything for granted.


Alisha, thank you for sharing your daughter's story with us! It must have been so difficult not being able to be with her those first couple of days, but hopefully the hardest part is behind you. It's crazy how life can be so scary and unpredictable, yet beautiful and amazing all at the same time. Paisley is a beautiful little girl, and I'm sure she has a bright future ahead of her! Enjoy the journey, whatever it may bring!

If you would like to be featured on Tulip Tales, please email me at:  Please include a brief description of your child and their condition, along with any pictures you would like to share. I will contact you with specific questions.


Wednesday, August 26, 2015

Brennen's Story

One of the greatest blessings of having a child with a disability, is meeting all of the amazing people within this community, most of whom share a common interest - to positively impact the lives of people with disabilities, and to celebrate those who work to improve the lives of others.

One of those amazing people is Gina Gill (Hartmann). Gina works with Epilepsy Newfoundland and Labrador, but also does some freelance work and writes inspirational stories for the Newfoundland Herald.

Last month, Gina asked if she could interview me about my family, my blog, and my work with children with special needs. I was more than happy to answer her questions!

This week, our story is featured in The Newfoundland Herald.

Be sure to pick up a copy, or you can read the article HERE!

Gina asked about Brennen's diagnosis, and how I felt upon first receiving it versus how I feel now. She asked about our child care program, and how that came to be, and she asked about my blog and how that got started. We had a great chat, and I think she did a kick-ass job with the article.

Thank you, Gina, for writing so kindly about my family. As a Mom yourself, I know that you know how strong the love for your child can be. Our hearts are tied to our children. We would move mountains, cross oceans, and give anything to make things better for them. We love. It's what Moms do.

"More than anything, I don't want people to look at our lives with pity or sadness. I want people to see how lucky we are. I feel like we really are the lucky ones. Our lives are filled with so much love and joy and Brennen has changed our world in the best way possible. We have a really good life, and it's because Brennen is who he is."

To read the complete article, click HERE!

Wednesday, August 19, 2015

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,

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!


Monday, August 17, 2015

Freedom Tube

Jes Sachse is a Toronto-based writer, journalist, artist and curator. Moreover, Jes is a story-teller. With a rare genetic condition known as Freeman-Sheldon syndrome, Jes has unique facial features, a curved spine and their right leg is a bit shorter than the left, but Jes is very positive and forward-thinking. Jes identifies as genderqueer and prefers non-gendered pronouns (they, them and their in place of he or she). Their passion is disability, whether through writing or art. It is a daily lived experience that is intricately tethered to how they exist.

Jes was in St. John's recently to take part in HOLD FAST - A Contemporary Arts Festival presented by Eastern Edge Gallery. I had the pleasure of meeting Jes at the festival's opening night 'Fancy Artist Talks'.

Jes's work was featured in the Hold Fast 'Art Crawl', in which artists from across Canada presented projects throughout the city over the course of a single evening. Jes created a curtain of over 12,000 drinking straws that was displayed at St. John's City Hall. The piece is entitled "Freedom Tube", and it links to disability culture and the idea that a drinking straw, to most people, is just a drinking straw, but to many people with a disability, it represents a sense of freedom and independence. Jes explained it's meaning by telling the story of buying a coffee for their friend, who also had a disability:

“Eliza, are you able to do take-out cup lids, like, put your mouth on it and sip?She laughed and she’s like, “No!”, like I asked the stupidest question. And I started explaining that generally I deal with the fact that I can’t do it either by using a straw. And without missing a beat, she turns her head around at me and says,“You mean ‘freedom tube’”.

"It became this object that I then, as a visual artist, immediately connected to, and I wasn't able to sleep after she said that to me. I was remembering every time I’ve ever seen a disabled person use a straw. I kept imagining straws - the classic red and white bendies, thousands of them in front of me. Sitting, creating long strands of piping, weaving them together in a sort of tapestry. The straws becoming a network of straws - one for every cup of coffee, one for every daily adjustment to make bodies "fit". And with patience and the passing of time, this mundane ritual becoming something larger. Together the straws will become a structure - an iconography of culture, and an honouring of an invisible tradition."

Freedom Tube has already had several incarnations, and is forever a work in progress. It does not have a finalized form. It is a new show, a new exhibit every time. Jes starts each new installation from scratch because the labour of the work is just as much a part of it. Very much a proponent of community-based art, Jes believes that it is important to focus on the ways that communities can contribute to the process of art-making. They invite people to not only visit their work, but to participate as well.

On Saturday, I met Jes at City Hall and spent several hours helping put straws together!

"Aesthetically, I’m a little in love.", said Jes. "I have a penchant for pretty things, and this is a very pretty thing. It’s pink and pretty and fun and I kind of feel like I’m at a birthday party. The straws are very uplifting en mass."

We had a great discussion about disabilities, perception, and the role of the internet and digital media. It is interesting that once you put something out in the public domain, you have little control over how people interpret it, and as an artist, Jes uses their art to make social statements.

If you think Jes looks familiar, it's because they went viral back in 2010 when starring in a series of photographs taken by Holly Norris, spoofing advertisements by American Apparel. The series was called “American Able”, and included 13 recreations of actual American Apparel ads. The photos challenged the retailer's claim that the models in their provocative ads are just "ordinary people".

American Apparel gave permission to display the photos in fifty Toronto subway stations, and both Holly and Jes were floored by all of the negative feedback. They heard comments that the photos had "shock value", that they were "ugly", "disturbing" and even "grotesque". The photographer replied with "Those are photos of Jes. Why does Jes’s body have a shock value? Why is it that people’s disabilities are so unseen that there’s a shock value there? There shouldn’t be.”

With Jes's latest installation of Freedom Tube, they continue on the path of making people stop and look, and hopefully also making people think.

"I needed it to not be something you can pass by and think an easy thing about. It makes you ask questions about what it is or what it’s trying to do, which is what I decided was enough."

Friday, August 14, 2015

Summer Love

This Summer was a long time coming, so now that it has finally arrived, we are drinking it up!

Brennen has been enjoying his holidays, and Andrew and I took a week off to relax and enjoy some time together as a family. We were fortunate to have a string of beautiful, warm sunny days that allowed us to make impromptu trips to the park, have picnics in the grass, and enjoy some incredible sunsets from Nanny and Poppy's dock.

Here are some photos of what we've been enjoying so far.

I am a sucker for pops of colour, and I just love how a crisp blue sky brings out all of the vibrant hues of the season. Though we try to find the beauty in the grey days as well, as there are so many of them (it's a bit of a metaphor for life, really).. I do prefer a sunny day to the rain, drizzle and fog!

Being able to spend time together as a family, without the pressures and stresses of work, has been invaluable. Part of being a "grown-up" is realizing that work and routine are just as important as fun and relaxation, and it is essential to have a good balance of both. Sharing these moments together makes me grateful, motivated, and happy for everything that is right now.

All in all, it was a never to be forgotten summer — one of those summers which come seldom into any life, but leave a rich heritage of beautiful memories in their going — one of those summers which, in a fortunate combination of delightful weather, delightful friends and delightful doing, come as near to perfection as anything can come in this world.
—L.M. Montgomery, Anne’s House of Dreams

Saturday, August 8, 2015

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