I know there are people who consider me an EB advocate and I never really thought of myself as one until recently. I don't go out in public to raise money or awareness for EB; I am more of a behind the scenes kinda person:) I have my blogs; I run/co-run EB support groups on-line; I reach out to other EB families, especially those with new babies. And I guess all that makes me an EB advocate in my own little way:)
It wasn't until I got to college and was learned how to use the internet that I found and "met" others with EB. Then when I was twenty-one, I finally met someone else with EB in real life! Since then I have meet dozens of others with EB in person and hundred of others on-line. Because of EB, 520 of my 782 Facebook friends either have EB or have a family member or friend with EB!
Because of EB (and the internet) I have made some wonderful life long friends! And most I have never met in real life!
It was until after Garrett that I really became involved in the EB community. It was after having Sami and then Garrett, I realized how little information there is out there about the day to day care of an EB baby. The things like clothes, diapers, bottles, etc.. And if I (some who HAD EB) was having this much trouble, how were parents who didn't know about EB handling things?? My goal seemed simple at the time: to make the journey of another EB family a little easier to go thru my using my experience and knowledge; to give them the info and tools sooner rather than later in the process (SO many families often find out way later on about the small things- reflux, certain bandages, ointments, etc..and had they known about those things from the beginning it would have made things easier)
While my mission hadn't changed, it had gotten harder! So many new families each year; so many types of EB, and each case is different- no one size fits all when it comes to EB! Even though I am sure I do more than anyone expects, there are days I feel like I fail. It's hard to balance my own responsibilities (home, kids, work, etc...) with my strong desire to help other EB families. I wish I could do it full time (i'd even do it for free!) but like everyone else, I have my own kids and a job and a husband and a house and cats to care for and there are only so many hours in the day! People joke I should have my own "office hours" and while I did think about it for a short time, I realized EB doesn't have "office hours"! Families often have questions on night and weekends and I do not mind getting an email or text in the evening or on the weekend. 99% of the time if someone had a question or needs advice. After all, they need (are hoping for) an answer sooner rather than later.
My goal remains the same each day: to help, listen, advice, and suggest when I can and hope I make a small difference in the lives of others....
Stay tuned for part two....it will be posted later today:)