Guest Blog: Bringing Visibility to Disability by Andrea Haefele

Last year I was overjoyed to open my blog up to a post by my friend Andrea (read it here). She shared her personal story about her families mission to bring visibility to children and families living with disabilities in support of her daughter Bella who has severe Autism Spectrum Disorder. Bella was going against the odds and with families from the Birchmount Community Centre she would race her first Triathlon, she rocked it (read it here).  Andrea opened her heart in a way that was so real and authentic that I knew I had to share her story, I was touched by the strength of my friend and I knew you would be too.

A couple weeks ago Andrea reached out again. In the name of bringing awareness to children and families with disabilities Andrea has created a video of Bella’s triathlon experience and it is currently entered in the FilmPossible 2014 video contest given by the Holland Bloorview Kids Rehabilitation Hospital and she needs your votes! Please read below to learn more about Andrea and Bella, share this post, or simply click here and vote!

It is with great honour that again I share my blog with Andrea and I know you will be inspired by her and her family as much as I have.

I Tri’d, I Duo

jesse1Your child has Global Developmental Delay.
She is cognitively at a 12-month-old level.
I can’t tell you if she’ll ever walk or talk.
She should be babbling by now.
Her behaviour and play are not age appropriate.
She’ll likely be living with you even in adulthood.
She’s at the severe end of the Autism Spectrum Disorder.

There it is.

This is who my daughter is. This is how the doctors, developmental pediatricians, neurologists, geneticists, and therapists describe Bella. Every day I strive to try. But when faced with these facts, I often feel like giving up. A lot of people ask me: “What keeps you going?”

I’m still not sure how to answer that question. But if I had to sum up my answer, it would be: “I just do.”

In 2008, I married the man of my dreams. Peter and I stood over a beach in Cozumel, Mexico and made a promise to one another: “I do,” we said. We pledged to be loyal, to love, respect, and support one another through life’s trials and journeys.

jesse5In 2009, our beautiful daughter Bella was born. As a new mother and father, we welcomed this perfect little baby into our lives and said: “We do.” We promised to be the best parents that we could be.

In 2012, we brought our second child into the world. Little Petie filled our household with play and laughter. Bella, Peter, and I welcomed him into our lives and said: “We do.” We promised to put our family first and to do whatever we could to ensure that our children are as happy as can be.

The words “I do” mean more than just going through the act of something. To our family, these words are the rewards of trying.

Bella has been able to learn to do things that we weren’t sure she would ever be able to do. She is constantly trying… and doing! Through hours of weight bearing exercises for her muscles, exchanging picture cards to teach her how to make requests, hand over hand modeling, all of our trying has allowed Bella to DO. Our little girl is growing up and can now walk independently and use the stairs. She can go into her communication book to tell us which toy she wants to play with. When greeted by others, she now makes eye contact and waves ‘hello!’

Bella has Global Developmental Delay.
She will learn at her own pace.
She enjoys walking, running, biking and swimming.
Her communication binder is her voice. This is how she talks.
Bella is at the severe end of the Autism Spectrum Disorder, and sees the world in a different way.
She enjoys listing to music in her headphones, and is fascinated by the sun and shadows.
Bella ends every day by giving a kiss to her mom, dad and brother.
She loves a big hug.

There it is. This is who my daughter is.

jesse4Last year, Bella and her friends from the Holland Bloorview Nursery School participated in their first race and completed a triathlon. Together, 5 families of children with special needs gathered to bring visibility to people living with a disability. We demonstrated that wheel chairs, leg braces, and a lack of words do not define our children. Not only do they have the ability to swim, bike and run, they also have the ability to achieve anything they want to.

Last year, Bella tri’d and this year she will duo! We will be participating in the Family Fun Fit East End Kids KOS Duathlon on Saturday, May 31, 2014, as well as the Walk Now for Autism Speaks Canada on Sunday June 8th, 2014. To complete the Duathlon, Bella will be running 50m, riding her bike for 600m, followed by another 100m run.

For our family, this is more than a race. It is part of our journey to show that there are no limits to what one can achieve.

Together, we do.

Andrea

This year Andrea and her family are looking to reach even farther to share Bella’s journey and bring visibility to disability as they currently have a video entered in the FilmPossible 2014 video contest given by Holland Bloorview Kids Rehabilitation Hospital and they need your votes.

Please share your support by bringing visibility to all disabilities by voting for Bella’s video: http://www.filmpossible.ca/bloorview?id=1605389

Help us spread Bella’s message that there are no limits to what one can achieve.  Please share the above link or this post and help to create awareness and bring visibility to disability.

 

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3 thoughts on “Guest Blog: Bringing Visibility to Disability by Andrea Haefele

  1. TheELMLife says:

    Reblogged this on The ELM Life and commented:
    It’s not often that I reblog a post from somewhere else but this one is special for a few reasons:

    1. Andrea is an acquaintance of mine with whom I have worked with on several occasions and love doing so.
    2. The Healthy Mom Challenge is all about getting myself and my family healthy and this post centres on physical activity.
    3. Andrea is a fellow mom who does an amazing job of bringing awareness to children and families living with disabilities in support of her daughter Bella who has severe Autism Spectrum Disorder.

    Have a read of her story below and show some love by voting for Bella’s video in the FilmPossible 2014 video contest hosted by Holland Bloorview Kids Rehabilitation Hospital.

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