This guest post was written by my good friend Andrea Haefele, an innovative leader in our district with Health and Physical Education, and a devoted wife and mother to a beautiful family. In addition to meeting the demands of being a family woman and professional, Andrea spends a significant amount of her time advocating for her first born daughter, Bella, who has exceptional needs.
Your 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.
In 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 beable 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 listening 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.
Last 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’s 9th Annual Beaches Best Kids of Steel 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. We would love your help.
Our friend Jesse has entered Bella’s video for Filmpossible 2014, an online video contest run by Holland Bloorview Kids Rehabilitation Hospital that brings visibility to disability.
Click the image below which will take you to the page where you can vote for Bella’s video. Please share this blogpost with as many people as you can in your social networks.
