Tuesday, April 7, 2009

The Waiting Game

It's Spring Break, and Hank is in great spirits. So happy to be off of school and able to hang out in his pajamas all day! It's the simple things...

Last week, we sent out an email to all of our friends and family members, giving them an update on Hank's appointment in New York. For a lot of them, this was the first they heard of Hank's battle with Parry Romberg Sydrome. Not the way I wanted to tell people, but most effective.
I also attached a link to this blog, which I think helps explain a lot.

I wasn't sure what to expect. We have kept it secret for so long and then to just tell everyone...! There have been different reactions... For the most part, we have had an outpouring of prayers, offers to help with fundraising, childcare, moral support and best of all...love for Hank. Of course, I haven't let him read any of the stuff I post here...he may know he has PRS, but he doesn't need to know how I feel about it! But he knows he is loved and he knows people care about him!

And there are others...who out of a loss for words, say nothing. And that's OK, we all deal with these things in our own way...but, I'm not going to lie... having a child with an illness can be an extremely lonely time for the parents. Left to stress about the future, not knowing if the treatment route you choose will work, and although you have people "there" for you, it's impossible to understand fully, the all-consuming stress that takes over your being. And then add the financial stress to it... it's overwhelming!

But we just try to move forward, secure in the knowledge that when we find ourselves in need, we find out just how wonderful our family and friends are. And how many people touch our lives in so many ways!

We are trying to confirm all the dates for our next trip to NY and for Hank's surgery. How many days prior to surgery do we need to be there? What day is pre-op testing? What day will Hank be released from the hospital? And what day can we come home? It's the waiting that I hate. We've built so much momentum getting to New York only to find ourselves crashing to a standstill. But we have promises from all parties involved to have the answers this week!

And so we wait...

1 comment:

  1. We haven't got to the point for fund raising for Kealy - but if surgery ends up in her future, that will probably be what we do also. But here of late a couple from church have been doing fund raisers for adopting 3 orphans from Russia. This is what they have done:

    Bowling Night (w/part of the proceeds going to them)
    A 2 mile walk/run
    An Silent Auction (with donated items, held at the church - the community was good with helping with donations from businesses)
    A photographer came in and took photos of kids 16 & under in an old timey sepia setting - for a $10 fee; part of the proceeds went to the family for this.
    Pampered Chef sales

    Thats all I can think of now, but through these things they have raised over $50,000....so it was pretty impressive. Hope that helps.