Labor of Love

Taking a break from the "'S' is for..." series for the Labor Day holiday and, instead, focusing on a truly inspiring story about person-centered care, community involvement and acceptance, but mostly about selfless love and exemplary parenting. It's a story about a labor of love.

Before we had children, John and I used to talk about our children and their futures... dreams for kids who hadn't even been conceived. We'd talk about college and say that if our children got into Harvard, we'd want to able to pay for it for them, even if it meant working four jobs each. When Gracie was born, the Harvard dream didn't vanish entirely, but it has, obviously, evolved over the years. This story, for me, is about Gracie's Harvard.

The fact that we don't dream about an Ivy League campus for our daughter doesn't mean we don't have dreams for her; it doesn't mean that we've given up on her potential - - not that our spunky, fight with all her might girlie would let us even if we tried! John and I came to the realization a long time ago that Gracie will not likely live a truly independent life. We also agree that we don't want her, as an adult, living in an institution. Finding a way for her to be happy, have as much independence as possible, go to school, work, be social, safe and cared for while, at the same time, not burdening Preston with the responsibility of his sister's care (unless he makes that choice for himself), requires planning. It is a huge dream... and though different, of course, it's just as huge as Harvard.

Please click the link to read the article and watch the video. It will be a well spent five minutes of your day... VIDEO: A home for Jacob - The Morning Sun News

Watching the video was an incredibly emotional experience for me. There are so many similarities between Jacob and Gracie and regardless of their age difference, I can see her in him. I see what Jacob's parents have created for him and picture Gracie there. I hear their concerns and considerations for Jacob and they echo ours for Gracie. It's important to note, especially if you only watch the video and don't read the article, that Jacob is never left alone. He has caregivers at all times when he is not at school or work, including through the night - - funded, in part, through the Michigan choice waiver program which allows his parents to use a portion of the funds that would otherwise be spent to institutionalize him on hired help within his own home setting.

John and I have had the honor and pleasure of meeting Tim and Nancy Hartshorne (the parents featured in the article and video) in 2005 and again in 2007 at the International CHARGE Syndrome Conferences. They are experts on the subject of CHARGE as both parents and professionals. They generously share that knoweldge with other parents so that we may better understand how to help our children grow to their fullest potential, whatever that may be. We can all, regardless of our children's abilities, learn a lot from them about selfless, respectful and loving parenting.