picnic of HoPE

today we were able to attend the 1st Annual Picnic for HoPE. i was excited for this day cause i'd actually get to meet those HoPE facebook friends of mine! hehe. i was looking forward to meeting other kids/familes of HPE and other cephaly's. we got there and didn't know what to expect. questions ran thru my head like: would there be other kids reagan's age? would they all be in wheelchairs? would the parents be nice? well, we got there and they actually all were in wheelchairs and there were a couple other special needs kids there that didn't have HPE. both jino and i got to talk to different parents and ask them about their child's story. they all shared lots of good information about things they have gone through and went through regarding their child and even all the medical/insurance stuff. it was a bit overwhelming. i guess for both of us it was a reality check. will reagan be in a wheelchair the next time we saw them all? will her condition worsen (as some of theirs did as they grew another year older)? will she be able to walk and talk (because all the kids there were non-verbal and don't walk)? i couldn't and can't help but wonder these things. each case of HPE is different and no one can tell you what to expect really-only God knows the outcome. i know it's easier said than done but we REALLY DO just have to take it one day at a time. we love reagan! all the kids and families there were amazing!!! they all seemed to be happy and most of them HAVE beat the odds and gone beyond their doctors expectations.

they did a balloon release in memory of those kids that have passed away due to HPE
and here are the kids (and me holding reagan)