Monday, October 1, 2012

Heading to Madison!

Well, here it is...the early hours of the morning of October 1, 2012.  In just a few hours, we will be getting the kids up for the drive to the airport. I know I should be in bed...but I am to anxious to even try.  Maybe a 30 minute cat nap...

Fr. Terry blessing Hank.
This is a new adventure for us...and we are all a little excited...and a lot nervous!  Hank will be at the American Children's Hospital in Madison, Wisconsin this time.  His surgery is scheduled for Wednesday, October 3rd...and as the date draws closer, the more emotional I become.  It's funny...I know Hank has Parry Romberg Syndrome...and it's on my mind every single day...not the first thing on my mind anymore...but's there...always.  But for the most part, my focus is on raising awareness, talking to other families with PRS and fundraising for Hank's trust in anticipation for surgery.  And we have been so busy with the golf tournament fundraiser. But now that is done and we had to quickly pack and get ready to the realization is hitting me...Hank's having surgery! I knew that...I really did...but knowing what's ahead just breaks my heart for that kid. And then there's Hank...stoic and strong on the outside...but I know he is nervous on the inside. I see him sitting pensively...and I know he is thinking about it. He doesn't say much...but I know.

Just the other day, Hank asked me about his condition. It was the first conversation we've really had about it.   Hank was just seven when he was diagnosed and we didn't tell him much. Over the years, we talk about it here and there...but now at age eleven and in the 6th grade...he understands so much more!  He was sitting at the kitchen table, doing homework as I cooked dinner. (I use the word "cooked" loosely...)  Turning around to look at me he asked, "Hey Mom.  Do I still have Parry Romberg?" Ugh! Caught me off guard. What do I say? I looked at him, "I don't know. I don't think so...but I don't know for sure," I answered. "So how did I get it?" he asked, "did I catch it?" I ponder the question and think perhaps a classmate asked Hank the same thing. "You didn't catch it," I tell him, "we don't know how you got it...maybe from an injury, maybe the vaccinations triggered it...something triggered it in your body...and no one knows what...yet." He looked sad...It IS sad..." do I get rid of it?" Now there is a question that I would really like answered!! I explained that there is no known cause and no known cure...and the micro surgery that he has had is our best option to stop the progression. Hank sat quietly for a moment..."OK. thanks." and turned around to finish his homework.

I imagine that Hank has a lot of questions...I just wish I had better answers!  But with that said...I think it's good that Hank is asking...facing another surgery is daunting...and I want him to know that we don't take these decisions lightly. But we know we are doing the best thing that is available to us. Hank is in such good hands with Dr. Siebert. I can't even imagine what his life would be like right now, if we had never done that first surgery!

Hank got to enjoy the golf course!
It's been a busy few months...we just had the "Inaugural Helping Hands for Hank Golf Tournament."  We had such a great time with the volunteers and golfers who came out to enjoy the day at the beautiful Rancho Murieta Country Club.  Thanks to our volunteers: My sister; Barbara Arthur, Anne Fiksdal, Danielle Morris, Michele Williams, Lori Alaniz, Beth McGaughey and Teresa Berry. I couldn't have made it through the day without you! And thank you to our donors, sponsors and golfers too! We learned a lot and can't wait to start planning the next one. Well...ok, so I can wait a little least until we get back from Hank's surgery!

Maverick going off to "Dog Camp"...
Speaking of...looks like I will be needing to wake the family in just a half hour! Guess I better go get ready to go! I will update the blog as we go!


  1. Thoughts & prayers are with Hank. Sending lots of love, strength, courage and support to him. Stay strong Terri & Jeff.