The 65 Roses Seafood Splash and Spirit Bash was this weekend at Rossi's Restaurant. The event was wonderful. We had a great crowd, amazing silent and premier auction items, and fabulous seafood (not to mention an open bar with tasty signature drinks - the Four Roses Rosarita was a hit - thanks Patti!) I was so thankful that so many of our family and friends were able to attend - not only did it make the event more fun, but it gave me much needed support since I agreed to speak prior to the Bid for a Cure. I was nervous about talking about our experience in learning Lilly's diagnosis, as I feared I would break down in hysterical tears, but it made it so much easier to talk to everyone when I saw so many familiar faces in the room. I actually wrote my speech and planned on reading it, but frankly every time I tried, I cried, so I decided to wing it "on stage." I think I did okay - I at least was able to tell about our experience and hopefully touched some people enough that they were willing to give a little to our cause.
Moreover, pictures of Lilly were everywhere and that helped to remind me why I chose to speak - anything for my daughter.
I was not the only one in the room who spoke about her experience - Melissa's 11 year old daughter, Grae Chambers, who has CF, also spoke about her experience and her best friend spoke about her thoughts and feelings about Grae. It was incredibly touching and further reminded me of why we put so much time and effort into raising money to help fund research to treat and cure this disease. The children and adults I have met with CF are so amazing - they deserve so much more than 37 years.
Coupled with the slide show/power point presentation with pictures of all the kids with CF (including Lilly) it is a miracle my mascara didn't run all night! I held it together though, although I did have a hard time when I saw a beautiful young lady walking around with an oxygen tank. Seeing that is difficult, particularly when I realized she was just 15 years old. Further, it is even harder when you realize that the oldest person in the room with CF is 30. But this is our reality, so I just take a deep breath and try not to allow it to all come crashing down again.
The event was a complete success - we raised over $30,000 - fantastic! I am particularly thankful for my family and friends who not only paid the $75/person admission price (it is steep for anyone, I know) but also purchased silent auction items (who really needs a guitar made of beer bottle caps?) and made a pledge through the Bid for a Cure. I know how tight money can be these days and many of you will have no idea how much I appreciate their thoughtfulness and generosity.
I further want to thank my Chi Omega sisters - they volunteered to help out that night, through the coordinated efforts of Amanda Miller, and I could not be more thankful!
The night was so busy for me visiting with family and friends, speaking, and meeting other mothers of children with CF that I took only 2 pictures - I am so ashamed! But they are here for you to enjoy nonetheless.
On another note, Lilly is doing very well. We went in for our check-up with Dr. Kanga this week and she weighs 16 pounds and 8 ounces! She has moved from the 3rd percentile in weight to the 10th percentile - that is a big jump for us. She is also 27 inches long, putting her in the 25% percentile in length. Overall she is somewhere between the 25th and 50th percentile, which is very close to what the CFF wants with CF children to remain. So we were very happy. Her treatments are remaining the same. She was cultured, but I don't know the results of that yet. If anything develops, I will let everyone know!
