Last night at the dinner table, Sylvie’s twin sister was making up her own sign language. I=pointing to her eyes. Love=pointing to her heart. You=pointing to the various family member to whom she wanted to direct her affection. We did a full round robin of this game. When we came to Sylvie, her sister moved Sylvie’s hands up to her eyes, her heart and then out to her papa, then her mama, and then her sister. Sylvie smiled a big smile. That girl knows who she loves. These interactions between my verbal and non-verbal daughters allow me to focus on that which isn’t so bitter. In other words, my family and I are trying to make lemonade out of lemons.
Lemons are tart. They are refreshing. They get green, soft and moldy if left in the refrigerator for too long. They are good in savory or sweet dishes. But they work best for me in lemonade (or a stiff gin and tonic!). Some days I focus on the nasty acidic taste that I have in my mouth from being handed a really bad medical situation. But sometimes, I’m able to sweeten the deal, just a little bit.
For instance, we invite medical students to come talk with our family about once a semester to discuss the challenges and hopes we have with a terminally-ill child. Serving as family faculty feels like one small thing we can do so that others may benefit from our experiences. Another example of taking our situation with Sylvie and trying to find some silver lining is when I stumbled upon the Hopeful Parents website. My humble monthly postings are an opportunity for me to reflect on my daily life as a mom with a kiddo who is immobile and nonverbal. It’s also a chance to read other parents’ divergent stories about living with children who have disabilities. This website is a gift to many of us, for which I am grateful. In order to make more lemonade, Hopeful Parents would like to get your feedback as its online readers.
Please, take a moment and tell us at Hopeful Parents what you like about this website and why you read the posts. Let us know what we’re doing right and what you would like to be improved. Thanks! Fill out this survey at http://www.surveymonkey.com/s/9XBVFQY.
Kirsten Isgro is a professor of Communication Studies at the State University of New York and the mother of 5-year old twin girls. This survey is part of a research methods course she is teaching this semester, with the goal of investigating the importance of online support networks.