Thursday, January 6, 2011

Two in a row

Yes, I am doing a post on Finley two times in a row.  Shame on me.  The reason is because Mat finished the video from the telethon that we have on Finley, and I wanted to share it.  They did a nice job on it.  (the folks at the telethon), and I am pretty sure the voice you hear is the anchor from our local news.


I have a hard time watching this video.  And watching Pryor's and Fiore's videos as well.  It is hard to go through this.  It is hard to watch them struggle to see, and watch the light slowly dim for them.  It is hard to get reports from Finley's teacher stating that she seems to be struggling more to see and eat.  She is falling more, tripping more, and her general frustration is growing.  We were trying to play shoots and ladders the other day - and she could not see the numbers.  I feel like a few months ago, she could.

It can't speed up.  We need time.  We need time for research to catch up to us.  We have come so far, and already made so much progress.  Her sight just needs to hang in there a little longer.

Most days, I can deal with it.  Mostly because Finley is ornery and gets into trouble!  But some days....  Some days I just think how much life will change for her if she can't see at all.  How scary it is going to be.  How unreal it seems to me that one day she may wake up and the world will be dark.

So, in the meantime, we keep fighting.  And we are going to fight hard.

If you missed yesterday's post, check it out.  The telethon totals are in, and some other RDH12 Families stopped by to say hello!

2 comments:

Joan said...

Jen,

Thank you for sharing this video and for sharing Finley with the world.

I'll keep doing what I can to promote your fundraising.

Judy Kroeger

Alissa said...

You guys are amazing!! I am so fortunate to have you as a cousin! Love you.
Alissa