Feeling lucky and mutant bonding

Yesterday was 7/7/07. I didn’t want to post twice because someone might’ve missed my hours of photo editing and how could I rationalize that time spent without some visitors!  So on 7/8/07 I’m STILL feeling lucky…About what you ask? My bones of course! Let me explain…Where else but in the disability community do people get together throughout a lifetime because they share a genetic mutation? A flip of the ole DNA might have been what originally brought many people with my bone condition (Osteogenesis Imperfecta or O.I.) together, but over the years other connections have maintained the relationships. O.I. is a unique condition because parents often have never heard of it before they are given news of their child’s diagnosis. They may also have faced the additional stress of false child abuse allegations in response to so many fractures in a young child with sometimes little to no explanation. All this turmoil in the life of a young O.I. family (meaning new in the community, not necessarily young in age) leads to a natural inclination to reach out for support. While O.I. is usually introduced as a “rare” condition, I feel like our population size is actually a blessing! We are not too large to be lost in the masses of other disabilities. The bi-annual conferences, newsletter, and traditional support groups are full of newcomers AND people that you remember from a previous meetings. I’ve never been to a conference specifically for C.P. or another more well-known/common disability, but I can’t imagine it’s quite the same mix of intimacy with a large enough group for varied support and tons of fun!

OIF and hospitals have also set up phone trees to connect new families who have a child with O.I. My mom used to be the primary contact for Kentucky and I remember evening phone calls where she’d spend hours sharing helpful tips, offering support, hope, and friendship. At times, my hospital would let her know of a young mother who could benefit from a visit if we were in for an appointment. HIPPA wouldn’t make this possible today, so it’s a little saddening sometimes to think of what we give up for a little “privacy”. Many of the relationships through O.I. that we’ve established have flourished-especially with Kentucky families because we can get together a little more often. While I was home, Mary Alice, her mom, Martha, Rebecca, her mom, Cheryl, me, and my mom met up for lunch at the Olive Garden. It was awesome. Here are some pics!

Of course, just because we share O.I. doesn’t mean we’re exactly alike in so many other ways, which is another unique side to these friendships. Maybe I’m getting old or overly nostalgic, but it’s a cool feeling to say, I’ve known her for her ENTIRE life! Some people might be surprised that when we get together, it’s not all bone chatter. Over the years, we’ve shared so many other things with each other. I feel so lucky to have these women and their families in my life. It’s another example of something I’d be missing without my own little lucky mutation.