Wednesday, June 10, 2009

Time to Sprint...

Big push for the winery fundraiser this weekend! Everyone is very busy getting everything prepared and the final touches. My sisters and brother-in-laws have done a fantastic job putting everything together as well as extended family and friends. I am amazed and somewhat overwhelmed at the generosity of the community! Jeff and I have tried to do our part with contacting friends, neighbors and business associates. It is so kind of my sisters to do all this for us and they don't want us to have to lift a finger. I don't know about other people, but for me this is hard to handle. I like to be involved and I like to do things for others. And now to find myself on the receiving end...difficult...another lesson in humility.

I feel like I am running a race and now is the time to sprint to the finish line...and I have no energy left...Can't stop now...we are so close. Just 18 days until we board a plane to NY...

**Helping Hands for Hank Fundraiser, Saturday June 13, 2009 from 6-9pm at McConnell Estates Winery in Elk Grove, CA.

I've been going through old photos of Hank growing up. We are making a DVD of his life, to be shown during the fundraiser. (thank you to Kirsten and Cheri!) It is so fun to look back at his sweet baby photos....and it breaks my heart at the same time. I find myself scrutinizing each photo to see if I see signs of the disease earlier than last year. Maybe a slight bit of atrophy at age 5, but I'm not sure... Can't believe Hank will be 8 soon. Feels like he was just three!
Got a phone call from my cousin, Steve yesterday. I love Steve, we are close in age, share the same sense of humor and have a strong bond even though we don't talk often. Steve has traveled all over the world and many years ago I went to visit him while he was living in Japan.
Steve called because he had spent a few hours the night before researching Parry Romberg Syndrome and the whole thing upset him. I think back to when Hank was first diagnosed and how I sat at the computer for hours at a time, reading everything I could find. And reading the stories of people who had suffered with PRS for years. Frightening! I tend to forget just how startling this disease is when you first start to read about it and see the photos of those who suffer from it.

I've been worried about Hank and how he's been feeling about his upcoming surgery. The other day, Hank told me he wished he had "Fairly Odd Parents" (Fairy God Parents). I asked him why and he replied "for all my troubles." Oh no! He is worried about his illness, I thought to myself. I asked Hank what kind of troubles... He replied, "my school work when I can't finish it...the blacktop at brother and sister bug me..." No mention of PRS, no mention of the surgery...just normal kid stuff! Whew! I guess we're doing something right.
Summer is here for Hank! While Lucy and Charlie are still in school, Hank is enjoying a life of leisure...pajamas all day... video games all to himself... reading to mom...control of the remote... childhood bliss! Glad he is able to have this time. I guess it's the calm before the storm...

1 comment:

  1. Hebrews 12
    1Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us run with perseverance the race marked out for us.

    Keep running girl! You are doing a great job ~ outstanding if I say so myself.

    My son has been through a hernia surgery, broken arm surgery, tonsil/adnoid surgery, a facial sinus surgery and lastly an ACL surgery - seeing your child suffer in pain is no easy thing. Man if we could step in their shoes for those moments we would without a doubt! So I know it will be tough on you too (along with Hank) - you will be in my prayers. You all are doing a fantastic job (and I need to get my check in the mail). Hugs, Terry