I've been voted off the island....

Well, actually I took myself off the island.  It is interesting that just the other day my friend Tara and I were talking about Survivor and I mentioned that B.E.D. (before Evan's diagnosis)  I was considering trying out for it.  She was quick to say that I would have probably been voted off immediately unless they decided that my leadership skills would be an asset instead of a threat.  Well, in real life I have this same effect on people. You either like me or you hate me, and the majority of the families in the ALD world want nothing to do with me, possibly because I want them to pull their heads out of the sand, well actually I was thinking about another area, and take responsibility for stopping this disease ourselves.  The amount of ignorance that exists in our ALD families, and by the way, those that are reading this blog are not the ignorant ones, is exactly why genetic diseases like ours will continue to proliferate.  And I for one am done.  The lack of support I received from my ALD family shocked me enough to walk away.  I took myself out of a Leukodystrophy Facebook group as well as one I started that was a spin off of ALD families only. So we are on our own. Our family has made the decision to stop this beast and it is over for us. There will never be another ALD child born in our family, unless like me, a spontaneous mutation occurs. We have made the decision to be pro active and not just sit back and see what happens. We have full knowledge of what this disease looks like in 2011, what we can do about it, what the near future looks like, and have taken action.  We have killed the beast in the Cousineau family and future generations, instead of allowing others in our family to suffer not only like Evan had to but like each of us will for the rest of our earthly lives without Evan. Enough said.

I know if I would just fade into the background of life that I would not be feeling the pain I do.   I know that I put myself at risk every single day in the ALD world, not any more, as well as with the work of the foundation.  And I do so in every day life when I make decisions to give my unsolicited advice to those close to me, because I am such a fixer and want to solve the problems of the world, and that advice is not always wanted.  I am doing a better job of not giving out advice unless I am asked this new year, one of my resolutions in 2011. So instead I have been given the opportunity to be paid for that advice once again, a great gift given by a friend without even knowing it.

My friend Elaine, who I have know for over 17 years as fitness professionals, was a great source of support during Evan's fight.  She is now in her own fight, or as she tells it, "Jesus is in the fight for her".  I have been contemplating what I could do for her for months now, and the knowledge of that gift was laid out to me in early December when I felt that Elaine and her husband were struggling financially due to their life crisis.  I knew immediately what I could do to help, and that was set up a donation site just like the one that was set up for our family as soon as Evan got sick. A non-profit called Helping Hearts for Friends are able to funnel donations for families in need to pay their bills and the donors in turn get a tax deductible donation for their good will.  Once that was done, Elaine asked if I would lecture on nutrition to our local Assisteen's club the first week of the year.  I easily accepted, though it was not something I had done since B.E.D.  But I soon found out like riding a bike, I easily jumped back on without missing a beat.  The girls and their mothers enjoyed the lecture, which was titled "Moderation is the key to all aspects of life", and that night was I was given three more gifts.  The first was a young lady who knew our family and shared her personal struggle.  I loved that she felt connected enough to me to share.  Then a mother introduced herself as a grieving mom whose son had been bullied and took his life 1 1/2 years ago in our town. While I had heard their story and desired to reach out, it was not until this night that I finally did so.  We are still trying to plan a get together, but she knows I am here for her.  And lastly, I have my first client, since B.E.D., and I love that my solicited advice is welcome and can make a difference in the health and happiness of another human being.  As I continue to find ways to help Elaine, I continue to receive great gifts in return. Thank you Elaine for allowing me to be part of your journey.

I have a lot to share about the faith journey I have been on but need to call it a night. Alaina and I just finished watching the Bachelor, yikees, and now House Hunter's International is putting me to sleep.
I hope to be back later in the week. Thanks for listening.
Gina