Sunday, January 16, 2011

Masionis Visit!

Saturday we were so very lucky to have Crystal, Dan, Alex, Bailey, and Eva over for the afternoon. Josh and Eva are the two that brought our families together. Since CHARGE Syndrome is such a rare disorder (affecting 1 in 10,000 worldwide) it was very difficult to find another person with CHARGE Syndrome in the area. I joined a Listserv shortly after Josh's diagnosis and met a lot of people around the world with CHARGE or with a child with CHARGE. Still, I hadn't met a single one in person until the day of Josh's funeral. Crystal, Eva's mom, has a heart of gold and from reading my post on the Listserv about losing Joshua, she drove a good distance with Eva when she found out about Josh. It was at Josh's funeral that I first met another child, and a couple years older than Josh, that had CHARGE. It warms my heart to this day and words cannot describe how thankful I am for Crystal to have come out to Josh's funeral and to bring Eva so I could hug her, talk to her, and see what Josh would be like in a few years. Crystal and I have remained close through each others blogs, fundraisers (she does the Bowling for CHARGE fundraiser and includes Josh in it each year, and has come out for the Charge for CHARGE 5K), birthday parties, and e-mails. At the CHARGE conference in 2009 (just 4 months after Joshua passed) Crystal invited me to a mom's dinner with 6 other CHARGE moms who I have also formed great relationships with. However, this was the first time we were able to bring just our two families together to play and talk. It was unfortunate that they couldn't make it to Jillian's birthday party, but worked out much better this way because we were able to spend the whole time with all of them! Jillian loved the Puppy that they got her for her birthday, and I am especially thankful that Crystal got Jillian's name programmed in for us so I don't have to worry about figuring that out! Jillian loved playing with Alex--they share the same birthday, so they hit it off real well! Joey had a blast with Bailey--he wanted to do everything Bailey did and laughed the whole time! And it was so wonderful to play with Eva and to see in person how far she has come. Like I mentioned I visit her blog daily (at least) and Crystal does such a remarkable job posting videos of her progress and all that their whole family does that I feel like I am up to date on all she does, but to be able to play with her and see her in action brings it all to a whole new level. She is an amazing and beautiful girl, and I thank Josh for sending her and her family into our lives.

Crystal also made me a pretty bracelet with all of my kids names on it. I love it! Thank you so much! And yes, we will be getting together much more often and hopefully again soon! They have had a rough year, but we are hoping for a healthy and fun 2011!

5 comments:

Lisa W. said...

Yay! It's so great to get together with other families...you are lucky to be close to other families - closest one for me is about 6-7 hours away! Loved the pictures...

ellen charge said...

they r the beswt love34 u all

Christy said...

Nice that you got to spend time with them and think of Joshy that old!

Crystal M. said...

It was a lovely afternoon, and I love how Alex was pretending to sleep for you, we should have taken one of Dan when he fell asleep...LOL!
Thanks again, we have to plan our CoCo Key day/weekend.

ellen charge said...

sandy i love the pics but i think crystals r better no offense LOL