After the huge success of the Chic-Fil-A fundraiser, I realized that there are so many, many wonderful people in this community who wish to help us fight for Hannah.  I haven’t talked to the manager there yet to finalize the numbers on the fundraiser, but what I was recently told today by a good friend more than tripled what I had originally thought in terms of money raised and people showing up with our flyers. 

We did hit a snag on the September fundraiser, the Walk/Run 5k, it seems.  There may be some red tape involved, and so a good friend and I decided that it would be best to take a step back and regroup and come up with a Plan B type of fundraiser if we need to.  Regardless of what we decide, we need to find someone who “knows someone” in the association (our city’s management group, we are a planned community) to let us know what we can and can’t do.  I think once we have the person’s guidance, then the rest will fall into place.

So for now, things are on hold.  But I’m not worried.  With the overwhelming amount of support and care we have received from our community so far, I know something will come together.

Tomorrow is our last full day of vacation here in beautiful Southern California.  It has been a nonstop week of activity, and it has been such a great trip so far.  Easter egg hunts, Passover dinner, my parents party where I was able to catch up with a few old dear friends I haven’t seen in many years, swimming, etc.  Just a wonderful (and exhausting) trip.

I always took tons of photographs before Hannah.  I think part of the reason I started taking so many photos once we brought Ethan home was partly out of guilt (since we missed his first 14 months) and partly because my memory really sucks.  Friends and family mention stories that I was involved with and say “don’t you remember when…?”  Honestly, sometimes I don’t.  At least with pictures, I have a “hard copy” of that moment in time and will always be able to relive it and remember it.

I think I have taken over 250 pictures this trip so far, and we still have Disneyland left to go tomorrow, our last full day here.  Of course, about half of those will be junked pictures.  You know, back of someone’s head because they moved, blurry, etc.  But I will have dozens of wonderful photos of this trip with all three kids. 

It’s funny.  Well, “funny” is not quite the term I mean.  But I find it very ironic that I am so determined to get these pictures with me included in them even though I am at my “least attractiveness” in terms of how I feel about myself, especially my weight since I am at my highest weight ever.  I look at all those pictures, and I have two feelings about them.  1]  At least I was a part of that moment and that my kids can see who I was, and 2] OMG, do I really look that huge!  It is like a double-edged sword, you know?

After looking through the pictures on the camera tonight, I realized what wonderful memories I collected just from this trip.  Memories I hope never to lose, good or bad.  Even photos to motivate me to take care of myself better.  I can’t wait to download them and share (most of) them!

Yep, I have that song in my head. And if you don’t know what that song is, then you aren’t as old as I am! 🙂

For the past three days, I have been working to find information on various GD23-related items from researchers, doctors, and other interested parties from multiple countries. Even though I have an incredibly long way to go, I feel like I have finally made some progress in learning what exactly is going out in terms of GD23 research and what I can do to help! I can’t go into details right now until things progress a bit, but you better be sure I’m knocking on every door imaginable!

And I am so pleasantly surprised at how wonderful many of the people who I have asked for information from have been! Especially Willy (you know who you are) who even offered to help with something I thought was an impossible request (even if he can’t find out!).

I came across this site this morning after a facebook friend posted it – http://www.wishuponahero.com

What I found was really fascinating.  This site was created after 9/11, and people can request wishes for anything from the simple to the big.  Other people can grant these wishes if they could help. 

Of course, the skeptic in me worries about fraud and scammers, but then I came across some wishes in the children’s health area, and I realized there are some of these that I could do (like sending some 4T summer clothes to a mom of a child with an illness I can’t remember because she doesn’t have money). 

Then I thought about the bigger picture.  What if the rare disease community and our supporters (like yourself) put together something like this.  I know so many families dealing with moderate-to-severe special needs that could use a little help — everything from a dinner out to clothes to just a stuffed animal for their child.  How wonderful would this be?

I tried to think of a wish for Hannah.  Unfortunately, the only thing I came up with can’t be granted by one person or is simple to grant.  I just want her to be healthy and to live a good life.  I wish someone could grant me this wish.