|Opening day 2011!|
Hank is improving in baseball. It's hard...three years ago, we didn't know if Hank would EVER play baseball! We had no idea how his disease would progress, if he would feel like playing baseball or if he would even be well enough to play... And really...three years ago, I wasn't thinking about baseball...I was thinking about "how can we stop this disease?"
After Hank had his surgeries, I was afraid to let him play. What if he got hit in the face with the ball? Would it damage all the work that's been done? Would it trigger his PRS again? So when at 6 months post surgery, Hank asked to play baseball, I was a wreck. "What? Baseball? Already?" Jeff and I discussed it...both excited that he was asking to play. Charlie had been asking to play for three years and we still hadn't signed him up either...poor kid! But at age 6, almost 7...Charlie was dying to play....so with a leap of faith, we signed both boys up. Baseball season started in March, 8 months after Hank's last surgery. I looked into getting a batting helmet that would protect his face. I know they make them...but in the end, we didn't do anything special, we just let him get in there and play!
He wasn't the best player on the team, but he sure tried and played with a lot of heart! He wouldn't always swing at the ball, but by the end of the season, he was getting some good hits. I will never forget one of the last games...where he finally made contact with the ball. The crowd went wild...we had been waiting for that kid to hit it all season! You would have thought we were at the World Series! I had only confided in a few parents about Hank's PRS...and those were the ones who cheered the loudest...appreciating what he has been through.
|Hank and Charlie ready for their first games...March 2012|
Do I tell Hank's coaches that he has Parry Romberg's Syndrome? Just send them a link to "Hank's Story" on our website and invite them to the fundraiser? Or do I just say he can't make that practice and forget about trying to get the the league's support? (They have supported past fundraisers...but that was before Hank was in the league and his Uncle Mike was the league President.) Hank is playing AAA ball now...it's competitive. The coaches are great (we really like them)...and they seem to want to be fair...playing all the kids...but will Hank be looked at differently? Kids at school know he has PRS...it's not an issue...in fact I think most of them have probably forgotten all about it...and only one boy on the team knows about it and it's a non-issue for him as well...
This is a fine line to walk...we want to raise awareness for Parry Romberg Syndrome...we need to fundraise for Hank's upcoming surgery...it's not something to be ashamed of...and knowledge aids in understanding...but Jeff and I are at a loss at what to do...
So I open it up to all of you...what would YOU do? I am so proud of Hank and all he has withstood. From his surgeries, to his educating his peers on his condition...to his kindness and understanding towards others...to his willingness to help other families who are struggling with this diagnosis...to his academic accomplishments...I could go on and on! I don't want HIM to ever be ashamed or worried about what he has...and usually it's not even the kids who say stupid things...it's the adults!
Are my fears unfounded?...Will he be treated just like he always has been? This kid has been through more than most adults...and I want him to continue to feel the normalcy that he has experienced for the last year and a half. Oh, I know...it's not an easy road and there are always the people who say the wrong thing...like the kid last fall who said to Hank, "You look weird in the mirror." UGH! Please...no more of that!! What would you do if you were me?