I have felt a need to participate somehow in the cause of CHD, and was hoping there would be some kind of activity or function that brings attention to it but I found nothing locally that was supporting CHD Awareness week, but I did stumble on Intermountain Healing Hearts and thought now was a good time to get involved. I got something from someone in the group a long time ago, but I think it just wasn't good timing then.
I registered online for two groups, one a national CHD organization and the local IHH's group and was contacted back by both, I received this "welcome" from the group:
Intermountain Healing Hearts would like to welcome Catherine Seivert and her son Ethan Dean Seivert to the group! Ethan was born January 7,2005 and was diagnosed with Tetralogy of Fallot and surgery was June14, 2005. The Seivert family lives in Kearns, Ut and learned about our group from an online search. The family has a blog its seiwebb.blogspot. com
Please help me in welcoming them to the group! Welcome!Mike PattonIntermountain Healing Hearts-VP
And it was almost shocking to see MY name and then ETHAN'S name with his condition and the surgery date; like I don't know all this, but it made me cry. why? well, you sort of "forget" that your child is not 100% physically perfect. You go along and he looks, acts and play's like there is not a thing "wrong" and on the one hand you should do that, and on the other hand, well, we are guaranteed nothing in this life, I am his Mommy and that worry never really goes away.
I am excited to be a part of something positive, and at the same time I hesitate, because I don't know if I can "dance" that close to other Mommies who are not as fortunate; but whom love as deeply as I do.
Being a member of THIS CLUB; a child with a CHD, well, I don't like it, and at the same time Ethan is who he is, and I love him for that, and I wouldn't change his condtion if it meant CHANGING ETHAN; I adore that little boy just as he is.