My parents had six children: three boys, three girls. My two older brothers came first, then my sister Jess, followed by me and two more siblings. Jess was born with spastic Cerebral Palsy affecting all four limbs. I was born four years after her, into great fear from my parents, who did not want to repeat the heartache they were experiencing with Jess.
My parents made the difficult decision to place Jess in a home just a few months before I made my grand entrance to this world. Jess requires total care and in 1963, placing children in care was still commonly accepted. I do not think it is anyone’s place to judge my parents for this difficult decision. They wanted to do what was right for their other children, and yes, for their dreams.
I did not meet my sister until I was old enough to travel seven hours in a car, I think I was around four or five years old. What a delight that was for me, and it must have been for Jess too! We have pictures of that first visit. My parents must have done a great job in preparing me; I have no memory of hesitation or fear meeting my sister who looked so different from everyone else. There are photos of me, pushing her in a wheelchair. I don’t remember thinking it ever odd that one of my siblings did not live with us. I knew nothing different. I didn't cry that I missed her, but I do remember wishing that she could live at home. That is likely a different story from my parents and my brothers. There must have been great relief, but also great guilt in feeling that relief. Life carried on after me with another sister and a brother.
When I was 8, I heard about a woman who was holding some healing services. In my mind, that is where we should take my sister. Just fix her! I think it was then that my mom made it quite clear to me who Jess was. She said something like this: “Jess is a daughter of God, made in his image. God loves her as much as He loves you and loves her just the way she is. Nothing about her needs to change.” So I learned, YOUR will be done, not MY wish to be done.
Jess returned to Ontario 24 years ago, and remains in care. My parents’ support for Jess has been unwavering. While Jess lived in Michigan, they went as often as they could. Since she has been back in Ontario, they visit almost every week, attend many doctor’s appointments with Jess and the staff. Every year there is a big birthday party, some relatives come out and friends who helped take care of Jess before she was moved to Pine Rest. They do the best they can to bring some community to Jess.
Sadly, we have had disappointments too.
People don’t usually ask my parents about Jess. Maybe people don’t ask because Jess’ disability is a reminder of what a sad thing it is to have a daughter like Jess. I know for myself, I’m grateful for four healthy children and am so saddened and empathetic when I see children with multiple disabilities. It’s awkward to ask sometimes. But my parents aren’t looking for pity. They are looking for support and care. Perhaps it’s yet another sign of how marginalized people with disabilities still are.
Although my family received some financial support from our church back in the 60’s, but there was no emotional support from the church. Even though the church has made great strides, it could still be better. My parents, especially my mom, has felt hurt by this. I think if the church has ‘missed the boat’ on anything, it the lack of understanding that having a child with a disability is forever. People with disabilities will not heal like someone with a short term illness or a broken leg. Disability is for a lifetime. For parents, there is the process of really understanding that this is the child God gave you, and this is what it means to live with a child like this.
I don't mean to be critical of the people of the church. I am part of the church too. Even I, with all my knowledge and background in disabilities, feel that I’ve not supported families with disabilities as I could have because their struggles don’t impact me directly. But God calls me to do better. Indeed, I’ve made a promise to ‘encourage and sustain’ them when they were baptized. I had better honour that promise, whether the child is my own or someone else's. It is my challenge.