wolfhirschhorn.org

Rochelle’s Family

Rochelle and Mommy

It has been more than a year since Rochelle and I visited this site. We have missed reading your stories and looking at your photos and videos. They remind us of ourselves when we were a young family. Most of you are young families. This site is such a wonderful opportunity to share and learn from each other. We didn’t have it back then, but we enjoy it now.

Each time we read we want to respond. For example, Ross asked about shoes that stay on. We spent a fortune on slippers, shoes, and boots. We eventually learned that nothing was going to work. Rochelle has small feet. Some of the bones are missing. Nothing stayed on. The only answer was custom made shoes and boots. They are expensive, but when I was working our insurance paid for them.

We also want to weigh in on feeding tubes. This was not done when Rochelle was young, but if it was she may have had been healthier. We persisted through chewing, swallowing, coughing, choking, aspiration pneumonia, and poor absorption. Rochelle ended up with had a high carbohydrate, high fat diet because she couldn’t eat fruit, vegetables, or meat. Now her diet is ensure, apple sauce, bananas, egg custard and crackers. We try to stay away from the pasta and bread diet she grew up on. She does like the occasional MacDonald’s treat.

Teeth grinding, she grew out of it. Seizures decreased. Staying in bed at night, and sleeping through the night never happened.

We have not kept up with all of you because the challenges of being an aging family have consumed us for the past two years. I began to write an update on Family Day in February 2012, to tell you how things change over time for a WHS family. Things got crazy before I finished the draft.

In 2011 my 87 year old mother developed dementia and fractured her back. My 89 year old father, who was her caregiver, had a stroke. My 89 year old uncle developed cancer and died, leaving my 90 year old childless aunt a widow. All this meant long hospitalizations, a funeral and several moves. Rochelle amazed me. She proved she was a mature adult. She was able to adapt to all of the changes and upheavals in family life. She went from being the person with the highest level of needs, to being a helper and meeting the needs of others. She made hospital visits and became a regular at the Seniors Residence.

The most important contribution she made, was becoming a part of our family thirty years ago. She taught us what it means to be an inclusive family. When it came time to place my parents in a nursing home, we realized that wasn’t an option, even though the health care team recommended it. We found a way for them to stay in their own home. It was difficult, but I leaned how to fight for Rochelle, and it prepared me to fight for my parents. It required sacrifice and commitment from everyone involved, and we were tempted to quit several times, but I am so grateful for the lessons Rochelle taught us. Everyone deserves to belong in a family and live in their own home. If it wasn’t for her, my parents could be in a nursing home today. They are doing better than expected. Our lives seem to be settling down to a new normal.

Rochelle and I are learning about the 2007 UN Convention on the Rights of Persons with Developmental Disabilities (CRPD). Government funded supports for inclusion of children in family and community life is a given, but this isn’t the case for adults with developmental disabilities in Alberta. We need to advocate for these rights for all. Then the future for the children with WHS on this site will be bright.