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Ava Aurino Francisco 
This page was made in loving memory of our daughter Ava Aurino Francisco November 24, 2001-September 22, 2002
Journal
Wednesday, September 20, 2006 12:32 AM CDT My sweet girl has been gone for four years. That’s a really hard concept for me to accept because she is still so alive in my heart and thoughts. She was stolen by this vial disease called Krabbes…A disease that had been running silently and unchecked through our family line. I wish I had never heard that word or experienced its pain. I wish I still had her and wish that she was driving me up the wall like any normal almost 5 year old girl. But I don’t have that…. What I have are my sweet memories of how she felt in my arms, her brief lopsided grin, and her smell. I still have a pair of her baby socks in my drawer and when I’m digging around for clean socks of my own, I come across them and smile and remember her cute long feet and sausage like toes. Her feet were so sensitive and ticklish. Those are the memories I carry with me now, and the ones that are slowly replacing the sadness.
Ava was not with us long enough, but she made our lives so much better. I know I always say that, but the impact she had on us is just so far reaching. We met friends we would not have made, became closer to friends that we already had and I appreciate those friendships in a way that I don’t think I could have before. We became much better people all because of her. I don’t take things for granted at all anymore. I love and hug and laugh with my children every second I get. I have learned to SLOW down and not be in such a hurry. I was not transformed into a saint and I still make mistakes...some huge, some embarrassing, and I am and will probably always be the queen of foot in my big ol’ mouth, but I have learned to be much more forgiving of myself and others and get on with it.
Life is fluid and ever changing and nothing remains the same… We welcomed into this world on February 3rd 2006 our miracle baby Gwyneth Jude, and we are having so much fun with her. Yet at times it’s just so bittersweet to see her conquering her baby world with such gusto and enthusiasm when Ava could not. But in her hysterical giggles and hugs I can see her sister smiling down on us. My son, Bailey, who is now 9 (can you believe that) was 5 when Ava was taken from us. He adored her and was so proud to be her big brother. He was already such a sweet kid but when she left, she left him behind much kinder, gentler and more sensitive than I think he could have ever been without having been touched by her. Gwyn is such a joy and such an all around happy EASY baby and one day when Bai was playing with her, he looked at me and said “Mom, Gwyn is just so much fun and so happy. I think Ava chose her for us because she knew we needed that.” Isn’t that just such a great thought? It’s an idea that I cherish.
Bailey has started 4th grade at a new school within walking distance from our home. Of course because he is such a big boy I have to drop him off a half a block from the school! Great! I have become an embarrassment! I swear I used to be ‘cool’ before kids! He is doing GREAT, and I am so happy and proud of him. He is so creative and is all about writing stories. He’s trying to write a “Drama” right now, and I can’t help but snicker (when his back is turned of course) about the very adult subject matter….its about a guy’s best friend getting caught in a POW camp and how the friend tried to save him but couldn’t. It’s going to be called “Never Look Back”. Can you tell the kids a military brat? If you know my son, you know how hysterical this is! He can be just so earnest. He also has a new idol…Weird Al!!! My god, the 80’s and my childhood are back! So when he’s not writing ‘serious’ (ha-ha) stories he is recreating popular songs in Weird Al fashion. He’s also creating ‘a new comic book series’. I’m sure you can only imagine how many loose pieces of notebook paper that are floating around every room of my house.
The countdown has started for Mike to come home!!!!!!!!!!!! We have missed him so much and its time for him to get back home where he belongs. Of course the running joke is that he’ll say hi to us and then run off to love on his Harley. Baby Gwyn was only 2 weeks old when he had to go back over (he was able go on leave for her birth). Since 2 week old babies just eat and sleep, there’s going to be some adjustment, because now she’s this crazy, wiggly, giggly, and opinionated little 7 month old. I’m prepared for some stress over it, especially since she is suffering from a severe case of separation anxiety, stranger anxiety, and “I want my mom and only my mom
I am so excited about the direction that research has taken into Krabbes disease. New York has even added it to its list of newborn screening. The newborn stem cell transplant is having great success and is such a hopeful therapy for these kids. I hope that in my lifetime, I see this disease become a completely curable disorder. It breaks my heart to think about the children who will suffer from this horrible vial disease, all of the children currently suffering, and all of the children that have already been taken. It not only robbed us of our daughter, but she suffered dearly from its effects during her short lifetime. Ava, with her wild hair and kissable lips, was just such a cool kid. I am so grateful that even for a brief period, she was ours.
Thank you for thinking about us during this time,
Stephanie
Read Journal History
Links: http://www.krabbes.net Krabbes Family Network
http://www.krabbes.com Krabbes information
http://www.huntershope.org Hunters Hope raises education and awareness for this terrible disease
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