Steve, Catherine and Edie
A Siblings Story, The Arthurs-Sloot Family
I am Wilma and Chris' daughter, Catherine. I live in Brampton with my husband Steve and daughter Edie. Emilia was born when I was 14 years old. She is an absolute joy and a strong person who fights the odds every day to do things we take for granted, like dressing herself, walking in the park, or even eating a meal. While she can't speak, she communicates well, sometimes even just with a mischievous glint in her eye before she starts jumping on the bed!
I love Emilia and my parents, and it is incredibly hard on all of them. Emilia needs to be able to grow and find her independence, and my parents need to be able to trust that Emilia is safe and happy. While my parents are very vibrant and young at heart (you wouldn't know they are in their mid 50's), the extreme physical aspect of caring for my sister takes its toll. My Mom has developed arthritis from the effort of restraining Emilia during outbursts. She is often alone with Emilia, as my Dad is a shiftworker. I worry all the time about their health and ability to care for Emilia. I also worry about Emilia's ability to someday have some independence of her own.
For my family, it means that we can't necessarily visit with Emilia and my parents as much or as easily as we would like. We make the effort to see them at least once a month, but it is difficult to visit for very long with them because keeping a 3-year-old and a 19-year-old with a disability safe when they want to interact is exhausting... but ultimately worth it! My daughter loves her "special aunt", but she would like to spend more time with her Oma and Grandpa just doing things like going to the park. My parents don't have that simple freedom.
Growing up with a sister like Emilia is a challenge for our whole family... but it is an amazing one that we enjoy and face with love and humor. I don't know what the future holds for Emilia and my parents, but they will need support when she graduates from school. I have told my Mom time and time again that the problem is that people don't know about the challenges. I believe that if the general public was aware of what families like mine go through, they would not let our government leave families with special needs hanging.
I am thrilled to see the launch of this website, and to hear the voices of other families like ours. Thank you for looking at this site and for sending your letters to the government. Every letter you send is another ray of hope for families with special needs.
March 10, 2010