Chris, Wilma and Emilia
I am Wilma Arthurs, mom of Emilia. My husband Chris and I have 4 beautiful daughters; Catherine 33, Stacey 30, Alexis 29 and Emilia 19. Our 3 oldest daughters all live away from home now with families of their own. Emilia who is a happy, social busy girl, sustained significant brain damage as a baby, the result of viral encephalitis. It has left her autistic, deaf and epileptic. She functions at the level of a 2-3 year old. She is able to walk and run and climb and get into all kinds of trouble. Her biggest disability is her excruciatingly frustrating limited ability to communicate. She understands very basic sign language, but is only able to express a few signs. Picture communication is very limiting to her. Consequently, she becomes extremely frustrated. She abuses herself by biting her fingers and punching her head and hips. When she wants to go somewhere she is not allowed to, she uses her strength (she is very strong) to push her way through. It is tough to take her places as she will drop to the floor or ground and try to crawl her way where she may not. It can be very tough at times. We look after her the way you look after a 2 year old. We change her diapers, bath and dress her, feed her, and cuddle her in our lap. Emilia is hyperactive and is in constant motion from morning (6AM) until her bedtime at 9PM. At that point we drop from exhaustion. Many nights, her seizures cause her to get up in the night. We must get up with her as she cannot be left on her own.
She gives us much joy, but as parents in our late 50’s, we are becoming worn out. Our bodies feel much older than we should and we have nothing in common with our friends our age anymore. We call our house “Emilia’s House” as it is run by her needs. She is very hard on our house and we are not able to keep up with the constant repairs caused by her.
Our home is filled with locks on all the doors, drawers, cupboards and windows to keep her safe. We visit Home Depots lock department regularly where we try to explain how we need to lock our home to keep Emilia in and safe, not to keep burglars out.
Emilia likes to go for drives in the car, so we do so 2 or 3 times a day. It is the only way we can sit down for a short period for a rest. Consequently, we rack up approx 55,000-60,000KM on our car every year. It is a form of respite for us.
Emilia attends St Pats high school where she loves attending. We receive SSAH, and Respite Relief from Community Living. We save a lot of our SSAH hours for the 10 weeks of summer when she is home full time. We have 2 university students work together for 5 hours Mon-Fri during the summer, but the other 10 hours in the day is filled with looking after her. Consequently, we do not look forward to summers the way other people do. It is a heavy work load for us then, and we count the weeks down to when she can return to school so we can recuperate from the summer.
We are terrified of the day when she graduates from school. We honestly don’t think we can carry on after that. We know the wait lists are long for day supports and group homes.
The toughest part of the whole thing is that we love Emilia so much. She is what we live for. But reality is that we cannot care for her all that much longer. Our bodies, spirits, mental health and stamina cannot hold out. We are just making it now.
I have been a stay at home mom for over 30 years. It is not what I planned with my life. But I have been happy to have given it up for Emilia and all the other families I have advocated for over the past 19 years. My husband and I would love to be able to enjoy our 3 grandchildren and see more of our daughters and their families. As it is they don't visit very often and when they do, only for a short time as Emilia is too difficult to handle and our time is so limited to go and visit them. My heart breaks that our grandchildren see us as strangers.
We cannot bear the thought of having to go into crisis for Emilia to get what she needs to be cared for. We feel we deserve to be able to plan for her future so that we can decide when she and we are ready for her to move on to have what every other citizen in this province has a right to, a home, the right to participate in our community and to have a loving family to spend time with. Not ones who are completely broken down.
March 4, 2010