Hanging in there...

A quick update to let you know where we are right now.

Brennen was admitted to the Janeway earlier this week for pain management and observation. He has been terribly uncomfortable the past few weeks because of the curve in his spine and how that affects his hips and really everything else. He hasn't been able to sit up at all, and has been going downhill quickly, to the point where he is no longer even comfortable lying down. We knew that he would be having surgery soon, but it looks like it will be even sooner than we thought - like in the next week or two. 

He is having spinal fusion surgery. Don't Google it. It's a doozie. They are doing all of the pre-op tests now and are keeping him comfortable with heavy pain meds. We are not sure if we will be here (in the hospital) until his surgery, or if we might be able to go home in between, but we are settling in for the long haul. 

Brennen had a good day today. The smiles have been few and far between lately, so we are hanging on to every glimmer we can get! Underneath all of the pain and discomfort and medicated drowsiness, my boy is there, just waiting to get back to his happy ol' self. And we are cheering him on, preparing ourselves for what's coming, and focusing on the good. We are scared, but we are digging deep to find the strength and courage that we know is there (sometimes I don't believe it's there, but I keep telling myself it is). Life is hard, and I am OK with it being hard when there are things that I can fix, but I find it hard to breathe when there are hard things that I cannot fix. Like now.

Thank you to everyone for the outpouring of love and support for my sweet little boy. Thank you for your calls and visits, your thoughts and emails. 
I appreciate every single one.

Please keep all the positive vibes coming our way. We will surely need them!

I will keep you posted as things progress...

-Julie xo

Crippled

As a parent of a child with a physical disability and a strong disability advocate, I am continually searching for new initiatives that are pushing to make a difference and to propel the discussion of inclusion in our community. I was thrilled to be able to attend the stage reading and discussion of "Crippled", a play in development by playwright Paul David Power.

Crippled is a product of Paul's own experience living with a physical disability since birth. As a member of the arts community for many years, Paul also strives to further the representation of deaf and disabled artists in the Atlantic Region.

"Crippled is written by and about a person living with a physical disability. It's a new work taking place in the Atlantic Region which assists in putting diversity in our arts community in the spotlight in our region. It is Paul's hope that Crippled will not only entertain, but also inspire discussion and action to expand the diversity of our theatre scene for artists living with a disability."

Paul was joined on stage by actors Pat Dempsey, Gregory Clayton King, Kyle McDavid, and Janet O'Reilly. They delivered a heart-wrenching performance that brought the script to life in such a way that made the audience feel with their whole hearts what the character, Tony, was living.

The plot followed the main character, Tony, read by Paul, as he reflected on a lifetime of ridicule and humiliation because of his disability. Through a series of flashbacks, we see how Tony was rejected, made fun of, and assumed to be less capable because he wore leg braces and used crutches for mobility. He is short in stature – a result of skeletal dysplasia (under development of limbs – in this case, the legs). Tony has spent his whole life feeling “different” and while he has always kept a positive attitude, on this night he seemed to have reached his limit. He was tired of having to be "accepted", and tired of having to constantly fight for an identity beyond a physicality that set him apart.

My heart was left in a puddle on the floor of the theatre that night, when Paul / Tony described the scene in which his mother, having just given birth to him, was visited by a Nun in her hospital room:

"Well, my dear, we must not question God's reasoning for things like this. We must just accept them and believe that God has a plan. You have two other beautiful children. Enjoy and treasure them. Pray that God takes this baby. He's very weak. He may not last through the night, and my dear, maybe that's a blessing. He's never going to have any kind of life. Is that what you want for him? He won't walk or talk. You have to pray for peace for him. Pray for peace and accept that it is God's will."

Tony overheard his mother telling the story of his birth, and was left to wonder:

"When we hear that someone has a baby or is expecting, it's always the image of cute little babies and celebrating. I can't help but think my birth was a disappointment. I mean everybody hopes for a healthy little baby. Everybody celebrates when the baby is healthy. But when that baby isn't, what then? I mean, does the celebrating go away? Is it less of a joyous occasion? Is that baby doomed to a world of lower expectations from the very start? A world that must 'accept' them?"

I cried so hard. I was that mother. That was my baby.

After a very emotional performance, the group took a short break to allow everyone to digest and recompose before continuing with the evening's schedule.

The stage reading was followed by a panel discussion that included Paul Power with dramaturge Robert Chafe, Danielle Irvine, Leah Lewis, and moderator, Maggie Gillis from CBC. The result was a very interesting and informed discussion of disability in the arts and how to expand the diversity in our local arts community.

It is important when talking about inclusion and accessibility to recognize that people with disabilities aren't just spectators - they are artists and creators and valuable contributors. Typically, when theatres and venues think about including people with disabilities, they think about things like where the wheelchairs will be located in the audience, and how a ramp will improve the entrance way. While, yes, improving accessibility is a wonderful thing, it is also important to talk about how we can include people with disabilities as producers of art - as performers, actors, musicians, etc.

What I observed this night was a microcosm of what I want to see more of in the real world - inclusion at its best - people of all abilities and from different backgrounds working together and learning from each other.

There is no need to hide our differences. The fact is that my son might not be an actor or performer (or a doctor or lawyer), and that's ok. He is incredible in other ways, and I am comforted by the fact that the world of opportunities for people with disabilities continues to expand because people like Paul Power explore, develop, and celebrate our differences and offer its lessons to the world.

Thank you, Paul, for your incredible talent and your beautiful insight. It was a pleasure to witness and to be a part of. I wish you great success with your work, and I look forward to seeing the final play when it is performed here in St. John's. I will be the first in line for tickets, and I will recommend it to anyone and everyone with a beating heart inside their chest.

For more information about the project, visit http://www.paulpower.ca/crippled.html

International Day of Acceptance

If you have been following my blog (or know me in real life), you will know that I am a huge supporter of 3E Love. I wear the wheelchair heart symbol proudly and have shared it with so many others (see HERE).

3E Love's Wheelchair Heart is a symbol of acceptance, love, and strength. It embraces differences, it educates the unaware, and it empowers and unifies people of all abilities. The symbol represents real people and real life instead of perceptions and stereotypes. 3E Love is about loving and living life to the fullest no matter what you can or cannot do.

On January 20th, I will be wearing my wheelchair heart proudly to acknowledge the International Day of Acceptance.

International Day of Acceptance is a day dedicated to social acceptance of disability and to honor the late Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance.

Who is Annie? What is January 20th, International Day of Acceptance, and how did it start?

Annie Hopkins was amazing. She didn’t want you to think she was… but she was.
Annie was born into a world that tried to limit who she could be and what she could do. She grew up seeing her peers and role models with disabilities face discrimination daily, sometimes on purpose, and sometimes indirectly. Annie lived in a society where people with disabilities were not portrayed in the media as beautiful, able, or equal members of a community. She entered her teens knowing that she wasn’t expected to pursue a higher education or to live independently. She lived life knowing that strangers thought more about her disability and presumed life expectancy than they thought to say hello as she rolled by.

Annie didn’t care. In fact, she was calculatedly reckless in how she chose to live, always pushing the boundaries of what people thought she could do and using her experiences to educate others. In high school when the choir instructor told her that she probably wouldn’t make the cut, she won every talent show, year after year. In college, she wanted to join a sorority, so she forced more than 40 houses on campus to build ramps so she could participate in rush week. After college, she moved out on her own and created humorous yet educational YouTube videos to show people how she faced her challenges. She never hesitated to test her limits, especially when it came to giving to others… Annie was everything a person hopes to be as a family, friend and community member. She was generous, courageous, and empathetic and she lived how people all wish to live. Annie embodied the very best spirit that humankind has to offer one another, and the world.

Annie Hopkins was an advocate, entrepreneur, artist, and student, who demonstrated what is possible when you love life. In 2007, she recruited her brother Stevie to help her start a company to spread her message. She created 3E Love with the idea that her “Wheelchair Heart” symbol unified people of all abilities and it ignited conversations every day that would help change attitudes for the better. Her ideas didn’t stop there: she wanted to create a disability owned and disability operated social entrepreneurial endeavor that one day, would be successful, would further empowerment and would demonstrate what can be achieved with a positive love for life and changing perceptions.

Social acceptance is the key… not the pity and ignorance with which she grew up. Embrace diversity. Educate your community. Empower each other. Love life!

Unfortunately, on January 20th, 2009, the survival of Annie’s message was threatened when she passed away from unexpected complications to a simple medical procedure. Overwhelming support from friends, family, and the disability community helped keep her ideals alive. Stevie Hopkins, her brother who helped her start 3E Love, took the reins and never looked back.

International Day of Acceptance began in the beginning of 2010. Stevie and his family were not looking forward to the Chicago winter, the snow, and everything else that would remind them of losing Annie. 3E Love and Annie’s message had become Stevie’s primary source of strength and hope during the first year after Annie’s passing, and so he had the idea to change January 20th from a day that represents sadness and loss to a day that represents Annie’s message of empowerment and loving life. If people all over the world would embrace their challenges and accept others no matter their ability, Annie’s message and lifestyle would be alive forever. People on the internet from all over the world responded positively and got everyone they knew involved. Even if they did not own one of our t-shirts to wear, or could not afford temporary tattoos or stickers, they drew the symbol on their hand, made homemade posters, posted about it on social networks, and did everything they could to show the world that they were a part of this acceptance movement. January 20th would now and forevermore be an International celebration to celebrate Annie’s life, her ideas, and the 3E Love movement instead of mourning her loss.

Since then, 3E Love and the Wheelchair Heart has become an international brand and symbol of love, strength, and hope. Over 50,000 people worldwide own at least one item of 3E Love merchandise. 3E Love’s Wheelchair Heart is in every state and 33 countries! Everyone who “wears their heart on their sleeve” does so for different reasons, but they’re all unified by one symbol, no matter their ability.

So on January 20th, join us in celebration of social acceptance. Get involved by “wearing your heart on your sleeve”!

Tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals and who loves life. You are a person who is empowered to make a difference in the world and will not be without a voice in society. You are not living disabled, you are living.

Tell the world that you are accepting of people with disabilities. As our parents, siblings, relatives, spouses, children, lovers, coworkers, teachers, personal assistants, friends, and anyone else – you also have a role in our culture and life. You can start change by demonstrating acceptance and showing the world that you embrace people of all abilities.

Start the conversation of acceptance today!

Thank you for your love and support these past 6 years! Annie’s dream is alive and the 3E Love movement is stronger than ever.

Join the movement at www.dayofacceptance.com

He's My Brother: The Special Needs Sibling Relationship

There is something remarkable about siblings of individuals with special needs. I cannot speak from my own experience, but we know so many children who have grown up with a brother or sister with a disability, and I have seen how they are shaped by their unique circumstances and their relationships with their siblings.

Andrew has an older brother with cerebral palsy, and I just know that their relationship has contributed to all of the things that I love about him today. His example of unconditional love and pure acceptance of his brother has paved the way for us to be able to live the beautiful life that we now enjoy. When they were young, he was fiercely protective over him and was always the first to defend his brother when someone said something unkind. He always included him in whatever he was involved with, and he made sacrifices every day to put the needs of his brother ahead of his own. He remembers being very young and throwing pennies into the fountain at The Village, making a wish that his brother could walk.. (insert heart explosion here).

Siblings are a valuable resource in our life. They are a part of who we are, and the benefits of a healthy sibling relationship can last a lifetime. Surely, being the sibling of a child with a disability must come with frustration, anger, sadness, and other negative feelings from time to time, but it has to also make you grow in kindness, compassion and sensitivity to others.

I recently received a heart-wrenching email from a new Mom of twins - one who has CP, and one who does not - and she was having a really tough time coming to terms with the reality of her situation. She was feeling like she was either spending too much time with one child and depriving the other, or forcing one child to do things he wasn't comfortable with just so the other could enjoy time playing. My heart broke for her, because I can just imagine how difficult it must be to have to make choices and sacrifices like that when the needs of your children are different. The thing is, however, that these differences also exist in typical sibling relationships. There is always one who needs more attention at certain times, and for most parents, there will always be the challenge of recognizing and meeting the needs of your children and balancing the needs of your family. I shared with this Mom that I take comfort in the knowledge and experiences of families we know who have older children that have grown up in a similar situation. One child might always require a little extra attention, and the other child will grow to understand that. She will find ways to manage both of her children's needs - and not just manage them but to have fun with them and enjoy her time with them.

We have witnessed some beautiful sibling relationships blossom over the years. This is one of them.
Our friend, Manisha shares her experiences of growing up with a brother with a disability:

*****

My name is Manisha Bishop. I am 19-years-old from Newfoundland and am currently completing my bachelor of Social Work at Memorial University. I have lived a very unique life, one that not many can say they have. There have been ample challenges and struggles in my life, however, I would not trade my experience and the love surrounding me for the world. I believe I have also found my purpose in life. I would like to start off by telling you a little bit about the most important and influential person in my life - my brother, Mitchell. Flash back to 16 years ago, I was informed that I would be getting a baby brother! The day he arrived was like no other. He came home wrapped in a little blue blanket with yellow ducks on it. My parents brought him in and I can still remember the butterflies in my stomach as I held him in my arms for the first time. I could not wait to play with him! I had planned to do so many fun things with him - play soccer, hide and seek, running races, and so much more! But as we all know, plans change. Life is a series of unplanned events. The only thing that is certain is that the world is going to keep turning, no matter what.

After a short few months it was undeniable that something was wrong. Mitchell was not meeting any baby milestones so my parents decided to reach out to doctors to see what was going on. After MANY hours at the Janeway Children’s Hospital, Mitchell was diagnosed with Cerebral Palsy. What is Cerebral Palsy? Well to put it simply, (as it is a very complex diagnosis), Cerebral Palsy or CP is a non-contagious, non-genetic disability which inhibits the brain and muscles from performing to their highest ability. Mitchell’s CP is due to the lack of oxygen his brain received at birth, causing scarring on his brain. So, post-diagnosis things changed, plans changed, feelings changed. The feelings of loss and sorrow were indescribable for me, as well as for my parents. Having a child with special needs is nothing someone plans for. Among many other things, it can be shocking, scary, anger provoking and just plain sad. However, my parents dove right in and provided the best care possible for both me and my brother. Despite the fact that Mitchell has been diagnosed with Cerebral Palsy, this does not limit or define him in anyway. If you were to ask me about Mitchell, the first way to describe him would be as my brother, then he is my friend, then he is my torment, next my movie buddy, a bird lover, an avid plane watcher, a SpongeBob fan, a hair puller, the best hugger, my photography model, a caring and loving human, my support system, a resilient individual, I could go on and on!

Being the sister of someone living with Cerebral Palsy shapes you differently than most. You quickly learn that your sibling’s needs are very important, the number one priority even. This may take some acceptance and maturity to comprehend. My parents continuously encouraged me to speak to them if I felt “left out” which has been beneficial for both me and our relationships in the long run. Our close knit relationship has helped me deal with the challenges that are often present with a sibling with a disability. You also grow up very fast. (I think I learned what to do if Mitchell had a seizure before I learned handwriting). You deal with a lot of more intense emotions and fears than most young children. Anxiety is present from a very young age. Why are all these people staring at my brother throwing a tantrum? What will my friends think when they meet my brother? You are more understanding and accepting- maybe of the kid in your school in the wheelchair or the man who cannot speak. Your views on the world and your appreciation for the little things is different, in a better way. I understand that being able to describe my pain or to complete basic life skills is a blessing. I often felt the self-provoked need to compensate for Mitchell’s disability, to ensure my parents didn’t miss out on their expectations for me and my brother. I tried to play every sport and do very well in school, however, I now realize that there was no need to “compensate”, as Mitchell is and has always been successful in his own way. Although there may be some difficult times, being the sibling of someone living with a disability will make you into a caring, respectful, patient, loving individual. I am who I am today because of who he is.

Having a sibling with a disability takes one back to the roots of being human; being caring, accepting, respectful, kind, etc. Mitchell has given me many morals and taught me many life lessons- which were conveyed by him non-verbally. I am so glad I have had the opportunity to flourish next to him his entire life. I have learned to be more accepting of all walks (or wheels) of life. He has taught me not to focus on the “what if’s” in life. I have learned to focus on the present rather than on what could have been. I have learned to look at life through the eyes of possibility. Without the possibility of something, it can never become a reality. Mitchell has proven to me that everyone has something wonderful to contribute to this world. I hope that others will learn to see potential in everyone, as Mitchell has taught me to do. He has influenced me to work in a helping profession to change a little piece of the world. I believe Mitchell was placed with our family because he was meant to love and be loved to the fullest capacity, which is what gives me great pride about my family. I truly believe my purpose in life is to be his big sister.

Mitchell is now in high-school. He can confidently walk around and trust me when I say he can get his point across, even without words. Mitchell continues to amaze me every day with his slightly slower but profound accomplishments. In his 16 years, Mitchell has triumphed in many sports such as Challenger Baseball, downhill skiing, and swimming. He has learned to crawl, walk, and fast walk (especially when mom tells him it is time for bed!). Mitchell has learned to communicate with us using some sign language and many different sounds. My heart is so full of pride and love for Mitchell and all that he is and all he will become. It took me a while to realize that Mitchell is something better than “normal”, which I spent so much time wishing for him - he is special.

***** 

Manisha, thank you for sharing your story. Yours is a unique perspective, and one that is important to share because I believe it can help so many parents who might be worrying about the dynamics between their children. How lucky you are to have had the opportunity of a life that isn't available to everyone. You and Mitchell have an incredibly strong bond, and all that you have learned about love and compassion will carry you far in life. I wish you nothing but the best!

Let it Snow!

When it comes to backyard rinks, my parents pretty much have the best one ever. It's no contest. Forget artificially frozen indoor facilities, or hours spent tending to the ice on a homemade backyard rink. We let Mother Nature do her work for this one!

After a significant cold spell, when the ice is nice and thick and the lake is covered with snow, my Dad goes out with his snowblower and clears off a good sized area for skating.

We just love getting bundled up in our warmest layers and lacing up our skates for the first run of the season! We are anxiously looking forward to getting out to skate again sometime really soon, but the weather has been so funny here lately, it's not looking like the ice will be ready for another little while. (We had quite a bit of snow last week, but then a lot of rain, and today it is actually 7 degrees!)

In the meantime, here are some photos from a day of skating on the lake this time last year (January, 2016):

It was such a weird sky day, as you can see here!

Nothing beats skating with my Dad. I remember when we were young, he would take my sister and I by the arm and go so fast 

it felt like we were flying around the ice. He still does that.

Brennen's little friend, Claire came out for a skate and she loved pushing him around on his sled!

 Brennen was toasty warm in his winter coat from Koolway Sports. 

Thankfully, it still fits him this year, so we will be able to enjoy lots of outdoor adventures!

What a fabulous day on the ice! We can't wait to get out there again this year! Bring on the cold(er) temperatures!!