A Family Learns to Follow

Written by Dianne Gray

Many of us remember dancing as teenagers, first learning about the concept of "leading and following."  Never did I think that the concept would apply to my own life with such accuracy until December, 1995.  That was when my son, Austin, just three weeks shy of his 4th birthday, was diagnosed with Hallervorden-Spatz Syndrome.

Look after your own needs when taking care of another

Written by Dianne Gray

We are reminded, with the way-too-early passing of 44 year-old Dana Reeve, wife of the late Christopher Reeve, of our own mortality. While most of us certainly would never trade a minute of being with a loved one who has NBIA, how often have we heard that we need to take care of our own health so that we can care for our loved one?

Our Rituals, Our Music

Written by Dianne Gray for Room 217 Foundation/ Canada

It is an amazing thing how the threads of our simple rituals can become the very fabric that keeps us together when our lives seem to become unraveled.

Many of us as families have a routine with our kids at bedtime, one that at times is both sweet and exasperating, depending upon our own level of exhaustion at the time. Do you have a routine with your loved ones? For me, a daily event meant the singing of three bedtime songs to my then two-year-old son Austin. Now, if you’ve ever heard me sing, you would know this is not a good thing! He didn’t seem to mind my off-key voice, however, as he requested the same three songs night after night for as many years as I can remember: The Barney Song (his title for the I Love You song in the TV show), Twinkle Twinkle Little Star and the hymn, Amazing Grace.

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