Support

On this day, I was able to meet up with a woman who had her PTG 14 years ago.  At a time where it was more rare than it is today, especially with CDH1.  I thought it was so amazing that a complete stranger was willing to take time out of her day to meet and talk to me about CDH1 and PTG and her experience with it all.  I've really come to understand the close knit community CDH1 patients have.  I've met many people via Facebook who have similar stories and we are able to reach out to for support as we need it.  Which is something I find very comforting.  I'm a big believer in 'everything happens for a reason' and truly believe each one of these people have come into my life for a reason, which I might not be clear on at the present moment.  Anyway, back to the woman I met with today. I don't remember much of what this woman said now (several weeks later since this post is being written on June 7, 2018), but I remember how caring, honest, thoughtful, and sweet she was.  She told me all about her family and her story with CDH1.  Which was all very comforting to hear.  She asked me several questions about my story.  We sat outside on a beautiful day and just talked and even cried.  I do remember when we were parting she said to me "think of me as your aunt Laura, and if you ever need anything please call me.  If you need a babysitter, you have a questions, anything at all, please call me"  This was so sweet of her to say, but I truly did feel close to her after our conversation.

My family always has been, and I think always will be very supportive and I truly love them all for that.  But I get a different kind of support from people who can relate and have walked a similar path.  My situation is a little unique as I'm the only person in my family who knows they have CDH1.  I'm much closer to my mother's side of the family and my husbands family than with my dad's side of the family (which is the side with CDH1).  As you know, I've reached out to his family but haven't gotten much interest in the topic.  Which again...to each their own.  And my brother, at this point in time, does not want to get tested for CDH1.  He has always had a completely different outlook on life than I have, and I will not judge him and will try to support him in his decision.  He does not have any biological children, so he doesn't need to find out to see if it affects them.  But he does have a wife and 2 step-children to care for and worry about.  But I digress...so, I'm really cherishing the little CDH1 facebook community.  So thank you all for being so supportive, compassionate, and kind.  And of course thank you to all my family who have supported us in their own unique way and will continue to stand right beside us on this crazy CDH1. Love you guys