Prince George parents Gord and Terry Robertson worried about the future for their daughter Bree-Anna as they get older. They began planning early and their story, with highlights below, is part of soon-to-be-published resource guide Community Living BC has developed as part of a range of efforts to support growing numbers of aging families.
Our daughter Bree-Anna is an adult now, but our family started searching for a way to support her future needs when she was very young. The future has to be much more deliberately navigated; aging related changes sometimes have to be anticipated at a much earlier point in life.
Bree-Anna needs care for every aspect of daily living, and while she doesn’t talk like most of us, she clearly tells us what she does and does not like. We think Bree lives a life very rich in opportunity and contribution. She loves to travel and it is her real passion. She has been to many places in the United States but her favourites are Disneyland and Las Vegas. She spends a lot of time with her six little cousins who live in town and are often at our home for a little babysitting and sleepovers. Those little children love spending time with her, watching movies and camping out in her bedroom. While she loves all that activity, life for Bree can be fragile and we juggle her wants and desires with the reality of her physical and mental health needs.
Creating a broad circle of support
Her brother Drew, a fierce and loving sibling and her champion, was expressing his concern for her needs by the time he was five years old. He was asking family members to never marry, have children, or move away so they would remain in our community and help him care for his sister. His passionate commitment to her started young and will continue forever.
It was clear very early in both our kids’ lives that we needed a way to support each of them to live lives that allowed them to reach their potential and not have Drew be solely responsible for his sister when we were gone. Our searching led us to Vela Microboard Association. We knew we had found the answer to our questions about Bree-Anna’s future with a strategy that would support both children and allow family and friends to be part of the solution. We deliberately chose to create a microboard that was multi-generational and reflects a wide circle of people who love and have a deep connection with our daughter.
Our reasoning for a multi-generational board was to mentor and train younger family members to navigate the service world and negotiate contracts with CLBC and the Ministry of Health. We wanted everyone on the board to fully understand Bree’s day-to-day care requirements and the supports which she would need for her to fully realize a quality life. They have learned to hire staff and run the business aspects of the microboard so when we get too old to do these things, or if something happened to us, there would be a number of people who know what kind of life we dream of Bree living. They would work together to safeguard Bree’s life in the absence of her parents being here to direct things in person.
A commitment to support rich life experiences
We typically meet every couple of months but will meet more frequently if the need arises. Our microboard is most importantly about safeguarding the future through connections of the heart. Everyone involved has made a very personal commitment to Bree-Anna and her future. We didn’t just sign a piece of paper to be accountable for funding and to meet reporting responsibilities; we made commitments to be part of Bree’s life for the long term. The long term includes good times and tough times, to support her rich life experiences of travel, and parties, baby showers, being the maid of honour at a wedding, and much more. The commitment is for surgeries and seizures, disappointments, and days that are too nasty to go out in the cold. The people who are in Bree-Anna’s circle cheer her up and spend time with her. The relationships are reciprocal; we are all in awe of her joy, strength, and resilience in the face of constant adversity. We all think of ourselves as a family first and that the family’s title is a microboard. It’s our job to surround Bree-Anna with the supports she needs for a wonderful life.
The microboard has played a role in creating a future for both Bree and Drew. So much so that Drew felt he could leave our hometown and move to Edmonton. He has confidence in the circle of support that has been created and is no longer constantly worried about his sister. He knows there is a caring group of people around her here at home who will move heaven and earth to make sure Bree is happy. Drew is only a phone call away. The family members he made promise to help him care for Bree continue to support Drew and Bree-Anna all these years later after he asked them for their help when he was a small boy.
Peace of mind about the future
It would be an understatement to say that we didn’t get a set of instructions on how to raise a child like Bree-Anna. Parenting is a tough job with typical kids, throw in a child who literally can’t move or speak and it takes you into a whole other world. We have had to learn to balance and navigate trying to create a regular life for our daughter with the reality that our situation is very different from many families. The hands on personal care we provide has taken a physical toll on our bodies likely accelerating some aspects of our aging. This reality means that conversations about our aging and Bree-Anna’s happen earlier and happen differently than in some families.
We have done the best we can and have taken what some might think are risks to enhance Bree’s quality of life but we wouldn’t change any of it. We have prepared the microboard and shared our hopes and dreams, created a PATH with input from Bree-Anna and everyone around her. We are as ready as we can be for whatever life deals us. We have peace of mind, faith, and confidence in the abilities and commitment of the fabulous people on Bree’s board to continue providing her with the amazing life she wants and deserves.