Monday, September 29, 2014

Foreword (by my mom)

When our twin daughters were born on July 7, 1981, we immediately knew one of our precious babies was in distress. As a mother of an already two and a half year old daughter, it was plain to see the tiny twin was nowhere near her sister's capabilities, but the day we found out why was a heart wrenching experience. The truth was finally confirmed, at seven months of age, the smallest of the twin girls, Shawna, was diagnosed with Cerebral Palsy; however the extent of the physical and/or mental disabilities were still unknown.

As the months went by, we became very involved in infant therapy and we believed that the sky was the limit.  Our primary goal was to help our daughter become an independent little gal.  I remember so clearly, how Shawna struggled with great perseverance until she finally learned to pick up a teething biscuit and get it to her mouth.  It soon became second nature to her.   With instructions from a physiotherapist, her Grandpa built her a corner chair, which allowed her to sit securely with a tray in front of her.

There often was a lapse of many months before she accomplished another great task but each was as special as the first. The day Shawna sat alone for the very first time at two years old; she brought another occasion for all of us to rejoice with tears of joy and celebration.

My days were often a blur with three small girls that needed attention but would have liked a bit more cuddle time.  There was little time for sitting and rocking; there were daily exercises to do along with a multitude of other household chores.  Shawna quickly learned that she had to keep up to the rest of the family and there was no special treatment, so to speak. We were going to make her function as normally as we could.

That was the plan.  At the age of two Shawna would take a forty-five minute handi-bus ride to preschool at the Alberta Children's Hospital, for five days a week. As she grew, there were many accomplishments that remain clear in our minds including standing alone and taking a step at age eight, reading a Sweet Valley High book at age ten, and telling her older sister what it was all about. These were the moments that confirmed to us that we were blessed with a child who was physically disabled but more than capable of comprehending all she heard and read.

Shawna played out on the street in her special walker along with her sisters and the neighbourhood kids, except she was clad with a helmet and wore braces on her legs. She went skating with the assistance of the same walker and then learned to swim with a neck ring and a life jacket.  Shawna attended Brownies and Girl Guides for several years and would tell everyone that she walked to school with the help of her electric wheel chair, which she had from the age of four.  Our daughter quickly learned all of the short cuts to take to and from school.

From a very young age, the word "no" was not in Shawna’s vocabulary and we wouldn't stop her from living the life she wanted. Believe me, there were times I had to turn my back and fight back the tears as I watched her determination to master and conquer a simple task that we take for granted every day.  Some of these tasks included making several attempts to get her hand to pick up her Barbie Doll, put it in the front of her tee shirt, and then hold the tee shirt with her teeth and crawl to play with her siblings. Going up and down stairs on her bum, backing up to a chair and then raising herself up to sit down on it.

She went from grade one to twelve in a modified program especially designed for her, and moved out at eighteen years old, even before her two siblings had thought about it. Attending various programs and conferences all over the city, relying on handi-bus services to drop her off and hopefully remember to pick her up again. Travelling to Mexico, with the assistance of a caregiver, was a highlight of her life, as well as being her sister's bridesmaid.

None of these accomplishments came without my tears which were quickly concealed so that Shawna would not see how it tore at my heart; however, I knew deep inside this would make her entirely determined, self-motivated, and the independent young lady we are so proud of today.

Shawna has taught us to be patient, to never give up, and that if you want to do something bad enough; there is a way to accomplish it. She has brought us so much joy with her great sense of humour and reminds us to keep things in perspective and be thankful for everything we have been blessed with. She has truly been an inspiration to her two sisters over the years.

Through all this, it did not come without a price for her twin sister, who carried guilt from a very young age. She also struggled to see her sister beyond the disability. The rest of us were fortunate enough to accept Shawna as a whole person and then see her limitations. We are grateful today that with counselling from a very special person and lots of reading, her twin now has a relationship with Shawna that strengthens day-by-day.

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