Sunday, July 30, 2017

Yoocan Do Anything!

If you follow my Instagram or Facebook page, you may have seen me share links to stories on a site called yoocan. I have written several articles there, and recently wrote a list of 10 Tips for Parents Who Have Children With Physical Disabilities, that was featured as the Story of the Day on the site.

Yoocan is the first global empowerment site where people with disabilities and their families can share stories, educate, and motivate each other to do anything. Yoocan has an active Instagram account that is a wonderful starting point for connecting with other individuals with disabilities or finding your daily dose of inspiration.

"The account has become a place for differently-abled people to put themselves in the spotlight and share their personal stories with others who truly understand and can empathize with them," says Stacey Kaplan, the creator and community manager of yoocan. "The account empowers those who sometimes need an extra push of encouragement on a daily basis."

I know what it is like to feel that need for support, encouragement and motivation. Since Brennen was born, I have had an overwhelming desire to connect with other parents who know what I am going through. Starting my blog and sharing our story has connected me to so many families experiencing challenges, and they are some of the most beautiful and courageous people I have ever met. It is so important for families like mine to know that we are not alone - that there are others who have been where we are right now and who will help carry us during the times when we need it most. In turn, I wake up every day and hope that what I am doing is helping other parents out there. 

I reached out to yoocan to learn about the inspiration behind the site, and here's what I found out:


My name is Yoav Gaon and I am one of the co-founders of yoocan. Yoocan is the world’s leading empowerment site for people with disabilities. In 2008, my son Erez was born with a rare disease and complex cognitive and physical disabilities. This was the beginning of an emotionally challenging journey for me, Ruthi my wife, and our family. It brought us together in many ways, but it was hard as we needed to adjust to a new way of living. Over the years we have come to do that in our own unique ways. Erez has certain limitations, but they have definitely not prevented him from living life to the fullest! Erez celebrated his 9th Birthday on July 21st, and we had multiple celebrations for him with family and friends. One of the most special birthday celebrations we had was at our family home where we invited both Erez’s inclusive class as well as his special needs class from school and everyone was able to celebrate and enjoy together. We have two older children, Noa (16) and Assaf (13) who act as role models to Erez, but I sometimes think that Erez is also a role model to them.

Like Erez, there are over 1 billion people in the world living with some kind of cognitive or physical disability, striving to live a better, more inclusive life and to fulfill their dreams. The goal in launching yoocan was to create a safe and inclusive community in which people with disabilities and their families can share their stories. We have over 1,000 stories on the site to date and this number is growing each day.

Our Instagram account, @yoocandoanything is reaching over 21,000 followers, and each day we post a new story and photo from someone around the world living with a disability. The unique thing about our page is that the posts or stories are written by the contributor in their own words, allowing everyone to empower and learn from one another. Our stories include individuals from over 100 countries, uniting people and families with disabilities all around the world.

I want to thank Julie for hosting me as a guest writer on Tiptoeing Through, and helping us to spread the word about yoocan, and for sharing her family's story on the yoocan site. I also want to thank each person who is a part of our community because they are an integral part of the network we are building. I would like to invite anyone who has a disability or knows someone with a disability to join our community and share their story with us at

Thank you, Yoav. I am so happy to be part of the yoocan family, and I encourage everyone reading this to check out the yoocan site, to explore the many empowering personal stories, and to connect and share their experience with others. Keep up the great work, and hugs to your sweet Erez!!

Thursday, July 27, 2017

Thoughts on Medical Aid in Dying

Many parents of children with special needs in this province received a swift punch in the gut this week when a news story came out about a mother in St. Anthony who was told by a doctor that assisted suicide was a recommended option for her daughter.

Here is a link to The Telegram article and a related article on CBC.

The Coalition of Persons with Disabilities - NL has released a position statement in response to a recent article in The Telegram around Medical Aid in Dying (MAiD).
Coalition Executive Director, Emily Christy, was deeply troubled when she read the article “Repulsed by Suggestion” (Section A6) on July 21, 2017. In her Letter to the Editor of The Telegram, Christy voiced the following concerns:

“I could not believe what I was reading. A doctor in St. Anthony had offered Medical Aid in Dying (MAiD) to the mother of a woman with spina bifida, cerebral palsy and chronic seizure disorder. Just finishing up the night before, we were talking about ways the federal government can work towards making our country more inclusive, breaking down barriers and fighting attitudinal discrimination and stigmas against persons with disabilities and the next day, I read about an overt discriminatory situation happening right now in our province.  

Here’s why this situation is a human rights issue. In Canada, we now have legislation that allows for individuals to request Medical Aid in Dying. There are important and clearly essential safeguards in place that ensure an individual’s rights are upheld and that coercion is not factored into an individual’s decision to make that choice. Now, it should be clear that I have deliberately used a very specific word in my last sentence – CHOICE. The legislation clearly states that this is about the individual’s choice to have this option considered. It is, however, not a doctor’s place to offer this as an option. Because that is where lies the grey area of coercion. In fact, in order for someone to be eligible for MAiD, it clearly states an individual “make a voluntary request for medical assistance in dying that is not the result of outside pressure or influence.”  Medical professionals are in a position of power and their biases can influence someone’s choice, especially when they make their own discriminatory decisions about someone’s value and worth—a fate far too often felt by people with disabilities.  

Another eligibility criteria on the list is to have a “grievous and irremediable medical condition.” This eligibility component is one the disability community advocates are more worried about. Because, of course, under this section it says the patient must “have a serious illness, disease or disability.” And in the case of Candice Lewis of St. Anthony, she does have a series of complex disabilities, one’s she has had her whole life – for 25 years. However, it is simply not just about having a disability that makes you eligible for MAiD. You are required to meet all four requirements under the “grievous and irremediable medical condition.”  You must also “be in an advanced state of decline that cannot be reversed, experience unbearable physical or mental suffering from your illness, disease, disability or state of decline that cannot be relieved under conditions that you consider acceptable,” and “be at a point where your natural death has become reasonably foreseeable.”  

The new Medical Aid in Dying Act was assented by the federal government June 17, 2016. Yet, we have heard little from the Government of Newfoundland and Labrador on how they intend to ensure the lives of persons with disabilities are respected and protected under this law. No parent wants to hear that their child is a “burden” or that they are “being selfish” for loving them, taking care of them and making sure their needs are met the best they can. What they want to hear is that the health authorities in this province are here to help and provide the best care possible for their loved one and work together to make that happen.”  

When my son, Brennen was born, I remember feeling completely lost and entirely unprepared for what we were thrown into. I was terrified of what our future might hold and was afraid to even think too far ahead. I worried about his quality of life. I worried about the struggles he would have and the challenges he would face. Would he ever walk or talk? Would he reach certain milestones?

I know now that quality of life is not measured by milestones or accomplishments. It is not for others to judge by what one can or cannot do. If quality of life is based instead on the love and joy that surrounds us, and the experiences and relationships that are nurtured, then Brennen has a quality of life greater than anyone I know.

I am sure that Candice Lewis's mom would say the same about her daughter, and my heart breaks for what they have had to go through. Like all parents, what we want most in this life is for our children to grow up feeling safe and loved, and for them to become valued members of welcoming communities. While my son's physical limitations are extreme and his level of cognitive understanding is unknown, his inner light is phenomenally bright. I am grateful for every day that I get to be his mom, and no doctor has the right to suggest otherwise.

Tuesday, July 25, 2017

TD Summer Reading Club

At the end of this past school year, Brennen received an exciting card in the mail - it was an invitation to the TD Summer Reading Club. The invitation was printed in English and braille, and stated that it was "For kids of ALL abilities", so we headed off to the A.C. Hunter Children's Library, renewed our library card, and eagerly signed him up! The TD Summer Reading Club is Canada's biggest bilingual summer reading program for kids of all ages, all interests, and all abilities. It is a free program that is offered at 2,000 public libraries across Canada. It celebrates Canadian authors, illustrators and stories, and inspires kids to explore the fun of reading in their own way. There is something for everyone, including children with print disabilities as well as preschoolers and their families. (You can learn more about print disabilities HERE.)

We were excited to receive an accessible notebook, which contains a place for your child to state their summer reading goals, a list of top recommended reads for the summer, a space to collect stickers from the library each time we visit, and a list of challenges for school age readers and pre-readers - really fun things like "Make up a story about you and your favourite toy" and "Say hello to every animal you see"! Our notebook also included an audio book on CD that we can listen to at home, and a program certificate that can be personalized once we complete our reading goals.

Children's books are one of my greatest loves. I have always been an avid reader, and I love to get lost in the quiet of a good novel, but there are some children's books that I read as much for me as I do for my little ones. There's just something so powerful about having a life's message condensed into just a few words in a way that a child can understand. It gets me right in the heart. At our most recent visit to the library, I spent some time looking around - meandering through the aisles of hard-bound treasures, while Andrew settled into a cozy chair reading stories to our youngest. I came back with tears in my eyes, and he said, "What's wrong with you?!" I said, "I read THIS book.."

We are big readers and book collectors in our house. Our little ones love to look at the pictures and listen to the sounds of the words on each page. Reading books aloud to children stimulates their imagination and expands their understanding of the world. It introduces concepts such as numbers, letters, colors, and shapes in a fun way, and it builds listening, memory, and vocabulary skills while preparing them to understand the written word. You should definitely, absolutely, without any question read aloud to your children. Reading together at home creates a special time for you to bond with your child, while at the same time helping to develop their lifelong appreciation for reading.

Diversity in children's books is a big issue for us, as I believe that every child has the right to see themselves reflected back from the pages of picture books. Here are some of my favourite books that celebrate difference and uniqueness and feature children with a range of abilities:

We Go In A Circle by Peggy Perry Anderson - A story about therapeutic horseback riding that reminds me of our time with Rainbow Riders.
Just Because by Rebecca Elliott - A young boy describes all the fun he has with his big sister, who has special needs.
What's Wrong with Timmy? by Maria Shriver - Answers to questions that children might ask about a child who looks or acts different.
Don't Call Me Special by Pat Thomas - Talks about equipment that children with physical disabilities might use to help them live happy lives.
Different is Awesome by Ryan Haack - Shows how some people do things differently, but that's ok!

Do you guys have any favourite books that help children learn to celebrate being themselves? I'd love to hear about them!

Raising a child with a disability, I have come to realize that we live in a world where accessibility is generally an afterthought, but I am happy to see that our local public libraries are super accessible and super accommodating, and the staff are eager to help. They have put a lot of time and thought into considering people who experience reading in different ways.

Our libraries also offer activities and events that children of all abilities can participate in. The website states, "If your child has special needs that affect their ability to participate in programs at the library, mention this to staff so that programs can be adapted. Any specific suggestions you can offer may be helpful."

Talk to your local public library staff this summer to find out how your family can join the TD Summer Reading Club!

Friday, July 21, 2017

Sunshine and Wildflowers and Ultrasound-Guided Botox Injections

Life with our little ones is a constant adventure. Everything we do with them feels special and celebratory and I wish that I could share all of our experiences here in this little space of mine. It is challenging sometimes, not being able to talk about our littlest two, or to share photos of them here, but I understand why the rules are in place. As I've said before, while I share updates about Brennen and Andrew and I, know that there are two other sweet babes in on all of our adventures.. and we've been busy! We have been camping, swimming, canoeing and hiking. We have been participating in the Summer Reading Club at our local library (blog post on that coming soon!), and we have several events coming up that we are really looking forward to. We are loving our life as a family of five, and I will try to keep you guys up to speed, sharing here as much as I possibly can.

We have been making the most of this beautiful Summer weather, enjoying a good balance of days where there is no hurry to be anywhere, and other days that are full of scheduled activities and appointments. Between the three children, there is an abundance of medical appointments and it can feel all-consuming at times, like our entire life revolves around hospitals, health issues and constant worry. The Janeway has been a second home for our family, and while we would prefer not to spend so much time there, we have been fortunate to receive such great care for all of our kiddos.

Brennen has been doing well these past few months since his back surgery. He sits up super straight and is more comfortable in his wheelchair than he ever has been. Actually, we had his chair modified recently, taking out all of the foam-in-place support that he once needed and fitting him with just a flat back with laterals. He looks so good sitting up in his chair, we would like to think that our issues with him have resolved, but there still seems to be something not quite right. He has had some big seizures recently that have scared the heck out of us, and we actually ended up taking him in to Emergency one day last week because his breathing was not the greatest. This boy is keeping us on our toes, that's for sure.

Another seemingly ongoing issue (very common with CP) is his tone and spasticity. His legs are now pulling to the right in sort of a 'windswept' way. It has become difficult to change him and to get him into a seated position, and so we talked with our orthopedic surgeon about botox injections.

Brennen has had botox several times in the past, but always under general anesthetic in the OR. It has been a few years since his last botox treatment because we've been busy with the big stuff - like his hip surgery and recent spinal fusion, but his leg muscles have been really tight lately, and it was time for some intervention.

On Wednesday, Brennen had ultrasound-guided botox injections in his left leg and hip. This was our first experience with the ultrasound guidance, and I have to say that I went into it not really knowing what to expect, but the procedure was fascinating to watch! The whole thing took just about 20 minutes, and we were able to see the liquid toxin disperse throughout the muscles and start to work it's magic. The ultrasound is non-invasive and allows for continuous monitoring of the needle position, avoiding blood vessels and nerves, which results in a safe and precise injection.

Botox (botulinum toxin A) inhibits muscle contraction by preventing the release of acetylcholine and blocking the chemical signal between nerves and muscles that makes the muscle contract or tighten. Botox injections considerably reduce the discomfort associated with spasticity, and the results are almost immediate. We noticed a significant difference in Brennen's tone and range of motion that same night. Brennen didn't have any adverse reaction to the injections, and we were thrilled with how quickly we saw results. Brennen is the perfect candidate for botox treatments, and ultrasound guidance is absolutely the way to go for him. I joked with Andrew that any procedure after his back surgery will seem super minor, because really, comparatively it is.. but I know I shouldn't say that too loud because we never know what might be facing us around the next corner. We take things day by day around here, and today is a good day!

Brennen has to have serial casting on his left foot starting next week, so I will keep you posted on that!

Happy Summer!

Friday, July 14, 2017

You've Got Me and I've Got You

Some days are tough. I feel like, on this journey, every day another little piece of my heart breaks as I witness Brennen's daily struggles, but at the end of the day, I am reminded of the strength of his spirit and it seems like a constant miracle.

I want to share a poem that I came across recently on another special needs site. I have searched and tried to find the author, to thank her for so eloquently expressing exactly what I think and feel, but a name is not listed. I believe that many of us 'Special Needs Moms' can relate to these words, and I want to prepare you for the strength with which they will hit you right in your heart and soul. It hurts, but I know that sometimes your heart needs to be broken in order to be fully open.


You miss the things I haven't done,
the goals not scored, or races won.
The steps my feet have never walked,
the words my lips have never talked.

In my wide eyes you know my fear.
You take my hand and hold me near.
In children, all around you see, the child that I may never be.
Not so able, tough or agile, often tired and much more fragile.

You see the tears I've often cried, and cried them with me, side by side.
Your heart is heavy for my trials, but you wear it well,
with weathered smiles.

I know that you know, I am enough.
But I know the bad days can be tough.
You thank the World for giving me to you,
but you're sad for all I cannot do,
and not because you feel let down my me,
but you can't help wonder how I'd be
if I could do what others do,
like ride a bike or run to you.

You think of all the things I'll miss
first dance, first love,
first date, first kiss.
Yet here I am, as I should be,
not missing out on being me.

Do not fret or worry so
and make your spirit tired with woe.
And when those nights are feeling longer,
lean on me until you're stronger.

Hold my little hand in yours,
peacefully we'll pass the hours.
For all we have is one another,
special child and care worn mother.

Nothing matters more you see,
than seeing all the life in me.
I don't need to be able to
do the things that others do.

See the words I do not say,
in the smiles I give you everyday.
When I'm tired let me rest,
with my little head against your chest
and for that moment in that peace,
let your loving worries cease.

Look at what I can achieve,
and celebrate me, do not grieve.
Please do not be sad because,
I'm not the child I never was.

Different isn't less you know,
and you're the one who told me so.

And some days will be hard to take,
and you'll feel as though your heart might break.
But we'll bounce back,
we always do.
Because you've got me and I've got you.

--Author Unknown

Wednesday, July 5, 2017

10 Tips for Parents of Children with Physical Disabilities

I was asked to write a list of "10 Tips for Parents who have Children with Physical Disabilities", so I went back through some of my previous posts to find the messages that I feel are most important. These are the few that really stuck out for me, and I hope they will resonate with you as well!

Tip #1 - It takes strength and courage to raise a child with a physical disability... but you can do it! It is an enormous responsibility, yes, but the challenges are far outweighed by the joy your child will bring into your life.

Tip # 2 - Focus on your child's strengths. Put emphasis on what your child can do, instead of what they cannot do. They may do things a little differently, but that's ok! Be open to your child doing things in a way that feels most comfortable to them.

Tip #3 - Remember these important F-Words: In 2012, Dr. Peter Rosenbaum and Dr. Jan Willem Gorter published a paper titled: "The 'F-words' in Childhood Disability: I swear this is how we should think!" The paper features six 'F-words' that the authors claim should be the focus in childhood disability. They believe, as I do, that we need to move away from the concept of “fixing” disabilities and focus instead on Function, Family, Fitness, Fun, Friends and the Future!

Tip #4 - Don't sweat the small stuff. You will realize soon enough that there are plenty of things you have to fight for, so you are going to want to pick your battles. Avoid any unnecessary arguments and save your energy for when you really need it. Remember, you have a limited amount of time and patience, and you can't afford to blow it on stuff that doesn't really matter. Equal treatment and inclusion? Totally worth fighting for. A few toys left around the house? Not so much.

Tip #5 - Take care of yourself! While your life may be consumed with meeting the needs of your child, it is important to recognize the need to look after yourself as well. Having a strong support network and taking time to do the things that make you happy are necessities when faced with the complex and challenging yet immeasurably rewarding job of raising a child with a disability. Feed your soul. Put on your own oxygen mask first before assisting someone else. Those flight attendants know what they're talking about!

Tip #6 - Find your tribe. Connect with other parents and families who are facing similar challenges. As a parent of a child with a physical disability, I know how important it is to connect with others who can relate to what you are going through. No one truly understands the physical, emotional, social and practical challenges of parenting a child with special needs better than another parent.

Tip #7 - Let your child be your teacher. 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 can end up being even greater than we could have imagined!

Tip #8 - You are the expert on your child. No one knows your child better than you do, so while reading a medical file may tell you about their disability, it does not give a complete picture of your child as a whole person. As their parent, you are able to provide real-life insight on how their diagnosis affects their day to day life. I hope that parents feel empowered with this knowledge, and feel comfortable expressing their thoughts and feelings to health care professionals.

Tip #9 - Some days will be hard. Really hard. But you will get through it. I won't deny that I do struggle and it does hurt sometimes, seeing my child go through all that he has had to go through because of his disability. It is hard for a parent to accept. But whatever pain I have felt is far surpassed by the joy of each moment I spend with my son.

Tip #10 - Focus on the positive, and think of all the things you are thankful for. Life may not be going the way you had planned, but that doesn’t mean it can’t be awesome! Find happiness in your child, and that will get you through anything!

This article also appears on - the global empowerment site for people with disabilities.

Monday, July 3, 2017

Hunting for Gnome Homes

This year, the MUN Botanical Garden is celebrating its 40th birthday! To mark the occasion, there are 40 gnomes (and gnome homes) hidden throughout the garden. Apparently, they have been living in the park this whole time, but were too shy to come out!

Garden gnomes are funny things. There are many myths and stories about them, some saying that they have magical powers to heal people, or to be the guardians of underground treasure. They generally hide in the bushes in neighbourhood gardens, but have been known to take trips around the world and take selfies of themselves in all sorts of interesting places.

Andrew and I took Brennen out on a search for the gnome homes in the MUN Botanical Garden, and we found all 40!
Here are some of our favourites!

(This one was super sneaky!)

I can't believe the detail that went into some of them! There is even a gnome home floating in the pond!

We had so much fun searching the Garden for the little gnomes and their funky homes! You guys seriously need to do this! It's super fun for kids (and adults!), and the trails are wheelchair and stroller friendly. The gnomes will be sticking around all Summer, so get out there and find them!

 We love visiting the Botanical Garden here in St. John's. Our family has a season pass, because we like to visit often!
Check out our previous adventures at MUN Botanical Garden HERE and HERE!