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| 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.
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| 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?
I think folks who don't know what the story is know something is going on and would probably support Hank even more! You guys support the team, and it's ok if the team supports you/Hank! Let them know, get the awareness out there get the support and have the team and league help out! It's what these leagues love to do and raise... support for their kids!!!!
ReplyDeleteThat's my initial thought as I read this. I am also very aware of your concerns.
First, I just want to say I am very proud of you and Jeff for your exceptional parenting. You have handled a very serious situation in you family's life with as much funloving, outgoing, normalcy that any one could ever produce for your kids. The professional and passionate awareness campaign you have developed is beyond exceptional.
ReplyDeleteThat one evening of baseball practice is preparing for the rest of this baseball season. The one evening of your fundraiser is preparing for the rest of Hank's life. Put it all out there like you know how to do so well and give the league a chance to support your cause. I will try to visit in Funderland with family. Love you guys. PK
P.S. - (after 1 1/2 glasses of wine) wouldn't it be great if Funderland had batting cages _ I wish this had spell check
ReplyDeleteSo first and foremost kudos for having the strength to let your son play a sport that he likes regardless of any ailment disease or struggles that he has. Any youth coach will understand missing a practice or game because you and your family are preparing for a fundraiser. You are there to encourage him to be the best he can be no matter what. Is it tough? Yes every single day. My daughter has a learning disability that poses challenges everyday. But you know what, her love for the game of softball really seems to keep her engaged and always striving to do better even when that is 18 hours away at a junior college living on her own. Do you make mistakes along the way? Yup then you have that glass of wine, breathe and you give those kids of yours big hugs and you move on to the next event. I smile and am proud of my sweet baby girl. I am the luckiest mom in the world....and so are you
ReplyDeleteHi, Terri, Have you asked Hank? He is so mature and empathetic. You could opt to tell him all the ramifications or not. But let him choose if he wants his team to know or not. My gut is agreeing with "pinkkid" above - you support them, they can support you. You could also approach it with the heads of the team knowing and not the rest of the team. But here's a thought....when I was 10 I went to "sleepover" camp. There were two deaf girls in our cabin. (You can't hide that!) All of their cabinmates - i.e. me - learned some sign language and to fingerspell. That is something that I still carry with me today, I taught it to my class every year (they learned the whole alphabet and were so proud!), and as a result when one of my best friends has a brother and a husband who are deaf it was not a big "mystery". I would hope his team, should they learn of it, would be embracing. And maybe help him with that bully issue if it is still around. Some random thoughts. What does Hank think? Good luck!
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