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Friday, July 10, 2009


When one of your children goes out of your life, you think of what he might have done with a few more years and you wonder what you are going to do with the rest of yours.

You never really accept it; you just go through the motions.

Then one day, because there is a world to be lived in, you find yourself a part of it again, trying to accomplish something--something that he did not have time enough to do.

And, perhaps, that is the reason for it all. I hope so.

~ Joseph Kennedy Sr.

That is a quote I found in Reader's Digest a few months ago. It fit so perfect for someone who has lost a child. Since losing Garrett, I have tried to reach out of all new EB families I have come in contact with. I have probably either spoken to on the phone, met in person or emailed over 100 families just since losing Garrett. I am sure there is a lot more since just having Sami almost 7 years ago.

I truly enjoy helping other families, i'd do it full time if I could! My goal is to make a new EB families journey through the world of EB a little easier, to teach them things that I now, but wished I had known them with Sami was a baby; it would have made things much easier. But there is also a downside to what I do....those that don't make it. About 1/3 of those 100 I mentioned above are now in Heaven with Garrett. The most recent on was this past Sunday.

A little 4-week old baby boy lost his battle to EB. His family lives in Michigan; 90 minutes from where I grew up. If I still lived in Michigan I would have jumped in the car and driven on over to meet the family. His name was Jayden, which ironiclly, what I had wanted to name Garrett (Joe apparently won that discussion!)

Each time another one get's their wings, it brings me back to losing Garrett, particularly if the person was a baby. So that is the downside of reaching out as much as I do. After almost every death, I always wonder how much more can I handle...can I keep doing what I do? I haven't walked a way yet...and I don't think I ever could. I hope I have made some difference in those families have come to know. I am not looking for any fame or acknolwdgement...most who know me, know I do a lot my work "behind the scenes' and i'd like to keep it that way! Being the center of attention isn't one of my goals:-)

Monday is going to be a very difficult day for one the EB families I know. Please keep them in your thoughts and prayers...i'll post more about it on Monday.

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