Parents of children with uncontrolled seizures have many worries. But the biggest worry is: What will happen to my child when I'm dead? I'm so grateful my son has been seizure-free for four years--thanks to epilepsy surgery--and can now live on his own, but not everyone is as lucky. Many adults with uncontrolled seizures live with their aging parents.
When my son was seizing 10 to 20 times a day I used to fantasize about a home in Toronto where he and other adults with epilepsy could live together like a family. My husband and I had to face facts, we wouldn't always be here for our son. And, we were only too aware that living alone is not safe for someone who suffers repeated seizures. Just imagine if my son fell in the midst of a seizure and hit his head in the shower, or had a seizure while frying bacon on the stove? Who would help him if he lived alone? Who would either make sure he recovered from the seizure or call 911? And so, I began to envision a lovely, big, old home with a large country-style kitchen, a communal living space and individual bed and bathrooms for those with uncontrolled epilepsy. They could cook and eat together but have the privacy of their own living space. There would be staff on 24-hours a day to assist with seizures and their complications and anything else that was required. In a city the size of Toronto we'd need more than one house--there are 30,000 people here with seizures, some controlled, some not--but one house would be a wonderful start. I started to research, but learned no home like my dream home has ever existed in Toronto.
Thank goodness Epilepsy Toronto (ET) has listened to parents like me and is hoping to change this unacceptable situation. It's a baby step, but ET has already had two exploratory meetings with parents, including one late in November. The biggest roadblock will be money, as the average price of a single home in Toronto is now over one million. That's an awful lot of fundraising. My son is lucky, he can live on his own, but I understand the fear of aging parents whose children aren't as lucky as mine. I pledge to keep doing whatever I can to ensure that one day this home becomes a reality. I'll keep you posted.
When my son was seizing 10 to 20 times a day I used to fantasize about a home in Toronto where he and other adults with epilepsy could live together like a family. My husband and I had to face facts, we wouldn't always be here for our son. And, we were only too aware that living alone is not safe for someone who suffers repeated seizures. Just imagine if my son fell in the midst of a seizure and hit his head in the shower, or had a seizure while frying bacon on the stove? Who would help him if he lived alone? Who would either make sure he recovered from the seizure or call 911? And so, I began to envision a lovely, big, old home with a large country-style kitchen, a communal living space and individual bed and bathrooms for those with uncontrolled epilepsy. They could cook and eat together but have the privacy of their own living space. There would be staff on 24-hours a day to assist with seizures and their complications and anything else that was required. In a city the size of Toronto we'd need more than one house--there are 30,000 people here with seizures, some controlled, some not--but one house would be a wonderful start. I started to research, but learned no home like my dream home has ever existed in Toronto.
Thank goodness Epilepsy Toronto (ET) has listened to parents like me and is hoping to change this unacceptable situation. It's a baby step, but ET has already had two exploratory meetings with parents, including one late in November. The biggest roadblock will be money, as the average price of a single home in Toronto is now over one million. That's an awful lot of fundraising. My son is lucky, he can live on his own, but I understand the fear of aging parents whose children aren't as lucky as mine. I pledge to keep doing whatever I can to ensure that one day this home becomes a reality. I'll keep you posted.
One of my favourite decorations on our tree.
I'm with you. Let's make sure this home happens!
ReplyDeleteThanks Art! We must make this a reality.
ReplyDelete