Dear Addie,
This past weekend we participated in the VisionWalk. VisionWalk is a signature fundraising event of the Foundation Fighting Blindness, a 501(c)(3) tax-exempt organization. There are over 10 million Americans that are affected by blinding retinal diseases, including macular degeneration, retinitis pigmentosa, and Usher syndrome. The Foundation Fighting Blindness is working to find treatments and cures for these devastating diseases. By funding leading-edge research in areas such as genetics, gene therapy, transplantation, artificial retinal implants, and pharmaceutical and nutritional therapies, The Foundation Fighting Blindness is making a difference today to make the world a brighter place for those suffering with blinding retinal diseases.
We walked because, through our autism journey, we know what it is like to be on the receiving end of a fundraising walk. We walked because it is important to remember that the world is so much bigger than our own personal wants and needs. We walked because nobody woke up one day and said – hey, I’d love to have a charity walk that benefits me. We walk because we know what living in hope feels like.
Some might be surprised that even with severe autism, we still expose you to community events that help others. It’s important to us as a family that no matter your developmental ability that you learn to help others and in my opinion, there is literally no better place to work on coping with large crowds than a fundraiser or charity walk. Most attendees always seem to have an underlying sense of kindness and understanding.
We walked, but this time it was different.
You see, Addie, while these events and opportunities to give back to our community are important to us, they usually come with a great deal of stress and anxiety. Most times, we leave having physically walked but feeling we had just run a marathon. There is always a lot going on. Bright colors, large crowds, balloons, noise - you name the sensory assault, it is probably there and in a grand fashion no doubt. We do our best to prepare but anticipate the breakdown of emotions at some point in time. Side note: we went to a walk last year where you laid down twice, literally flat on your stomach mid-walk, like a speed bump in the road. I never know what to expect, but I promise you I did not see that coming. But this time was different; there was no breakdown. We played on the nearby playground, and you left when it was time to go. You sat and ate your snack – even giggling at the sights around you. There were plenty of balloons, college mascot characters, music, and dogs, yet nothing but calm from you. There was no running for the playground, stealing others' water bottles, screaming, or laying like a speed bump; you walked.
Addie, you have been working tirelessly every day with our beloved therapist Ms. Caitlin, and there is no doubt that we are seeing tremendous growth for good in all this. Will we have rough days – absolutely, and that is ok! But today, as we walked to be a piece of hope in others’ lives, I saw a bit of the hope I have held on to for us for so long. Calm.
We are so proud of you, baby girl.
Love,
Mom
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