She's 19, blind in one eye, thinks like an 8 year old, has short flat thumbs and toes, and other so called abnormalities. But to us, she is our daughter and we could never imagine any other version of Allie. Ask her what 9/11 means to her and she will tell you, " 9/11 is when planes flew into buildings and killed a lot of people." But she knows so much more...
About Allie: At birth, the doctors told us she would be blind, unable to talk, unable to walk-speak-or even read. One doctor, who was also a good friend of ours, thought it best if we think about institutionalizing Allie to save our marriage. Some friend!
We spent the first two years just trying to keep Allie alive. At one year, Allie was just a little bigger than her birth weight and failed to thrive. We fought every day to keep food in her and watched her every movement. Allie was my wife's new full devotion in life as she had to quit her job. We pulled out all the stops to insure our daughter had the best chance at as much of a "normal" life as possible.With my 48 hour schedule at the fire department, I spent many of my off days with her as well. It was truly a team effort.
With around the clock physical, speech and other necessary therapists, she began to grow and thrive. It took 3 years but she crawled--it took 5 years but she walked--it took 7 years but she talked. We even had her plugged into Equestrian Therapy which helped her develop and overcome the hurtles typical with special needs development.
It used to bother me when people starred. Yes she looked different and not so "normal" but who is really normal anyway? It bothered me because she was my daughter and I loved her so much. I guess people did not see what we saw.
She was diagnosed with Rubinstein-Taybi Syndrome at birth and many of these rare (1 in 300,000) special needs children had many abnormalities including; blindness, digital defects, microcephally, significant mental delays and other issues similar to downs syndrome.
Allie grew to read, write and have pretty normal conversations with people. In fact at times, if it wasn't for how people viewed her, she would fit in pretty well. She is a miracle and all the hard work and determination has paid off!
Back to 9/11: Allie was about 7 when September 11, 2001 came. She sat in the bed between my wife and I and saw the 2nd plane hit the WTC towers. She saw us cry and began crying. She may not have realized what was happening but she shared our emotions. As we saw the first tower fall, Allie watched it with us. She hadn't fully developed her speech at that point in her life but was able to ask the question, "Daddy was there people in that building?"
Having witnessed the death of 1000's of people and knowing there were also brother firefighters in the buildings, I held her tight and tried my best to explain what she saw. She knew what death was when we told her that my mother and father had both died before she was born. But this was very different to her. For the first time she had actually seen buildings full of people fall and she knew....she understood the finality.
Shortly after the tragic events of 9/11, I began the 9-11 Patch Project as my reaction and vision of hope. Being a firefighter on the west coast, I felt far removed. Knowing others would feel the same way, the 9-11 Patch became a way to remember my brother firefighters lost that day and to help others around the world unite. The project would also become a way to raise funds and share the proceeds with organizations that would develop post-9/11. Allie stood by me as the project grew to include the participation of over 10,000 organizations around the world. She was there asking questions and helping all these years.
Allie grew up with the 9-11 Patch Project and with 9/11. Having run this project for 12 years of her life, she now understands what the patches, decals and other memorial items are about. In fact, she probably knows more about 9/11 than most people out there.
Today, over 12 years since we cried together in front of the TV, she knows beyond the tragedy of 9/11 that a glimmer of light shines. She knows the Firefighters, EMT's, Police Officers, U.S,. Soldiers and innocent civilians are being remembered. She no longer remembers planes flying into buildings or crashing to the ground--she remembers the victims and knows her daddy is willing to do whatever it takes to make sure they are always remembered.