It's already June! Just 2 more days of school for Hank. He is so excited! I am happy for him. Time to relax and have some down time! We leave for New York in just four weeks. Lots to do between now and then!
Focusing on getting everything ready and making sure the little ones are well-provided for while we are gone. I really hate to leave them. I think that's the hardest thing about all this...well, except for the major surgery Hank will be having...! I'm sure they will be fine, they have each other...but Lucy is such a mama's girl and wants to be EVERYWHERE I am. (and I mean everywhere!) They are both such little sweeties! OK, I will worry about this later...
We have a local online community discussion board here in town. My sister, Barbara, posted info about Hank and the upcoming winery fundraiser. I noticed that our topic didn't get much play, even though it was titled "7 year old needs your support". So many people on the message board talk about how much they love kids and what big advocates they are, and yet we only had a few postings on the subject. So I thought that maybe people needed to be reminded that this could happen to anyone...even them. I think people get complacent...they see a poster or a jar with a sign about a sick kid...and they think. "Oh, how sad...a sick kid...that's too bad, " and they just continue on their way. So I decided to remind people that you just never know. Here is an excerpt:
I remember sitting in a Doctor's office in 2005, reading an article in Reader's Digest. It was a story about a young teenage girl who had this really rare disease that was wasting her face away and causing seizures. OMG! I couldn't think of anything worse! It was so tragic but her attitude was so fantastic...made you feel terrible for her and yet hopeful at the same time.
I recall scanning the article again, seeing that it was not contagious, genetic, and extremely rare. I had a 4 year old, an 18 month old and a newborn at the time. And I thought to myself, "Thank God that can't happen to MY kids". Little did I know that the rash that appeared on my oldest son's face at age five would be diagnosed (at age 7) as the SAME EXACT DISEASE that I read about three years prior!
I know I will never look at an ill child in the same way...I now know that illness can strike at any moment...that a seemingly healthy child may not be that healthy...and that life can change in an instant...! And I will never say or even think, "Thank God that's not my child."
Incidentally, the mom of the girl written about in that Reader's Digest article, contacted me and sent me some articles about her daughter. That's when I re-read the article and just about fell over!
You just never know...
On October 16, 2008, our then 7 year old son was diagnosed with Parry Romberg Syndrome: an extremely rare, progressive, "incurable" auto-immune disease that causes facial atrophy...meaning it causes half the face to "waste" away. Some cases include seizures, strokes or other neurological problems. This is the story of our family, and specifically our son, Hank, as we struggle with diagnosis, search for a cause and a cure and go to the ends of the earth for treatment.
I know I will never look at an ill child in the same way...I now know that illness can strike at any moment...that a seemingly healthy child may not be that healthy...and that life can change in an instant...! And I will never say or even think, "Thank God that's not my child."
ReplyDeleteSO TRUE - MY EXACT THOUGHTS!!!!!!!