So we did it. Fifteen years ago, we put everything we had into purchasing our perfect family home. On a stunning tree-lined street twenty minutes from downtown Toronto. Anchored with a backyard for family barbeques, playdates and a quiet street for ball hockey, scootering and skipping, with only the occasional pause as the children yelled out, “CAR!”
We love our neighbours, our street and our house. The old saying 'location, location, location' rings true, and buying our house has truly been one of the best decisions that my husband Jeff and I have ever made as a couple. From this house, two of our three children walk to school and have regular play dates with neighbours and school friends. Our youngest son still just walks outside with his basketball and before we know it there are three or four other boys shooting hoops with him.
Sounds pretty perfect, right? Well it is, but a different kind of perfect.
Our eldest son Jake has a rare neurodegenerative illness that attacks the central nervous system. It has robbed him of almost every physical and mental ability. He cannot walk, talk, see, move, eat by mouth or breathe without huge effort.
We bought our house when Jake was just four years old. We were told that he most probably would not live to see his fifth birthday, but as I write this article, he is miraculously now 19 years old.
When we bought our home fifteen years ago, we were able to create a room for Jake upstairs, where he would be just steps away from me and my husband (helpful, since we would take turns getting up with him in the middle of the night).
However, as Jake grew older—and bigger—it became extremely difficult carrying him up and down the stairs. We worried about his safety.
We knew revisions had to be made, but what should we do?
We looked into putting an elevator in, but with a house from the 1930’s, not an easy task, not to mention the incredible expense. As always there had to be another way.
Of course, we were used to this type of thinking, re-thinking and accommodating; always believing that it's not if, but how!
So, instead of bringing Jake upstairs, we brought his upstairs down.
We converted our dining room on the main floor into Jake’s room, and it soon became the focal point of our house.
As soon as someone walks into our house, Jake's room is the first thing they notice. That may, in part, be because we designed it to include everything he needs: an accessible walk-in shower room? We installed it. An adjustable hospital bed? It's there. A hoist mounted from the ceiling for lifting Jake? We put it in, and our kids immediately started referring to it as Jake's personal zip line!
The prime location in our house of Jake's room means that when our kids come home with their friends, they walk in and visit Jake right away. Family members come for dinner and greeting Jake is their first stop, before heading to the kitchen.
Now Jake has truly become central in our 'grand central station'.
But we didn't only need to consider redesigning the interiors of our house to meet Jake's needs. We also needed to think about our outdoor space.
As a family that has always liked to 'play together', bringing Jake to the park with our other two kids was extremely difficult. So, we installed a massive play space in the yard, bringing the park to Jake. In winters, navigating snow banks with Jake's wheel chair proves difficult, so each year my husband is outside late at night watering our backyard rink, allowing our friends and neighbours to come to us for some hot chocolate and a skate.
As time passes, our needs will change and no doubt so will our house. And while I am not sure what is next for any of us, I do know that whatever we do, wherever we go, and wherever we live, as long as Jake is with us he will always be the central focus of our house, making it just the perfect home for us.
Publisher's note: The Toronto Storeys team knows—and loves—the writer of this article, her amazing family. Sadly, after 21 years of beating the odds, Jacob Schwartz passed away on Jan. 28, 2019.
In 1998, Ellen and Jeff Schwartz founded Jacob's Ladder The Canadian Foundation for the Control of Neurodegenerative Disease, to benefit children like Jacob, and to reduce the occurrences of neurodegenerative disease in the future. If you wish to support their efforts, you can visit www.JacobsLadder.ca to donate or to purchase Ellen's book, entitled Without One Word Spoken.
