Hi, friends. Many of you know I have been trying to find families that have kids (or who were kids) born similar to my guy; with Cloacal Exstrophy Sequence. Shouldn't be too hard in the ostomy network, huh? Well... I have been searching for 2 1/2 years... and finally found the right link! In the last 3 days, I have been in touch with adults and families that have cloacal exstrophy... and they are in the United States! Praise the Lord!!!!!! As we share stories, we are nodding our heads in agreement that we understand what the other is and has gone through!!!!!!
Thanks for your kind and uplifting words you all have provided (and still provide!) to all the amazing questions and stories on this site.
I'll continue to check in... I just wanted to give you all an update.
Yipeeee!!!!!!!! -Ryan's Mom
That is great news! Although you have your friends and family around you, it really isn't the same as having someone that actually can relate to the problems and issues that relate to what you have gone through or what you will go through.
Maybe you should post the link on here so that, should there be others in the group looking, they too can find some support.
Budd
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When I was an initiate, (novice)
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When contemplating what to write
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Hi, Budd! I wish it was as simple as a website link! The link I found was e-mailing another ostomate (Brenda Elsagher; world traveler, author, comedian) and asked her if she knew of other families like mine. She e-mailed me back (I was surprised!) with the name of a friend of hers in the exstrophy group. He, in turn, connected me with a few other families like ours! It just took the right connection to find the people for whom I have been searching! I've had the absolute pleasure of speaking with the others and now have them as Facebook and e-mail friends.
It is really nice to find connections with people who are in the same boat. SAHWEEEEEEEEET!!!!!!!!
Ryan's Mom
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That's good news! At least now you can have people to relate to. Yes, there are those on this site you can talk to; however, we are not parents of a child dealing with it. Most of us are adults dealing with it ourselves, and we can't give you that point of view. However, I'm sure you have a whole different set of questions and concerns you will need answers to that may be different with a small child. I'm sure they are the same but different, if that makes sense.
I'm glad you have found some families and some new friends. We can never have too many of those.
I thought I was the only one born different for most of my life. I am trying to blog about how I dealt with it. Your son is fortunate to be born more recently with so much more information available.
My Ostomy Journey: Kimberly | Hollister
