I have spent hours dreaming about what I would do when I win the lottery. I never wanted millions, just enough to pay off bills, help the boys and maybe do some good in the world. I wouldn’t buy 16 cars or install gold toliets, I wouldn’t host million dollar parties, just simple things to make a difference. Surely that should be the cosmic odds in my favor right? So far, not true. At least I thought it was true.
On April 10, 2006, we gave birth to a healthy little boy named Owen. Owen was born with a rare condition called Arthrogryposis Multiplex Congenita. It affects 1 in 3,000 births and the mortality rate is approximately 30%. For Owen, this meant his legs were twisted behind his back and over his shoulder and his arms were locked at his sides with finger tips touching his forearms. He also had severe clubfeet. We were told he wouldn’t survive and to consider our options. We never believed for a minute that our son wouldn’t be with us.
That very moment, when Bob and I heard Owen cry and we knew things would be okay, I realized we did win the lottery. Owen beat tremendous odds that day as we would later learn and every day since he has continued to amaze us. So on April 10, 2006, I learned winning the lottery isn’t about money, it is about celebrating life and love and family. Each year on his birthday we can look back and see how much we gained on that very special day.
We would soon learn, however, that you can win the lottery twice and when you least expect it. As part of our new life with Owen and learning about AMC, we joined AMC Support. Our family quickly grew from 5 to several hundred across the world. It was amazing how a condition we never heard of quickly connected us to families all over the world and families that would soon be considered part of our own. I can never verbalize how much this network means to me and how critical the support was over the past 5 years.
Wherever I travel in the world, I know there is another family member close by. And at any time in the day or night when I have a question, someone is there waiting to offer an answer or just listen. And for our family, being a part of the AMC family is winning the lottery all over again. I am blessed to be a part of this family.
I am blessed to have met many people that have changed my life and will be there to mentor Owen as he grows older. These are just a handful of people that are part of Owen’s life and will be there to help him as he grows. People like:
Ani Samargian who started AMC Support on June 30, 2005. Ani shared her experiences with her daughter Abby and soon connected hundreds of families all over the world. Ani taught me to believe in the possibilities and to see my son’s potential. One person can and did make a difference.
Theresa Lucas, our AMC president and an artist. Theresa taught me that Owen’s condition is not a limit, he can do anything he sets his mind to do. Theresa paints amazing detailed artwork with her mouth and spends a lot of time traveling to schools and teaching kids about diffabilities. Theresa has this way about her. Within minutes of meeting her, you feel you have been family for years.
Ward Foley, Scarman: What can I say about Ward except he is amazing? He always seems to know when I need a boost and makes a phone call. He taught me that as long as our decisions are based in love, we will never make the wrong choice for Owen. Surgery decisions are never easy and having Ward to help keep things in perspective has made a huge difference to me. I think Ward watches over all our AMC kiddos.
Tracey Schalk, the first person with AMC I really ever met. I met Tracey at the first AMC conference in Chicago when I was completely overwhelmed and scared. As the years have passed, I have watched Tracey come into her own and inspire others. She connects families nationwide and is always looking for a way to spread awareness. She also happens to be pretty amazing keeping 3 little boys entertained. I will never forget the first time I met her and I am honored to call her my good friend.
Julia Nalle and Valerie Rieben who have opened their hearts and families to adopt children with arthrogryposis and be advocates for other special needs children waiting to be adopted. I have fallen in love with their children and follow their blogs. I fell in love with their kids and I have yet to meet beautiful Aaron, Julia’s little boy. One day I will meet the boy with the smiling eyes and fall in love all over again.
Val Pepe who showed me there are no limits in life unless you put them there. Val has AMC and hosts her own radio show, writes and has an endless supply of energy.
Thursday, June 30, 2011 marks the 2nd Annual AMC Awareness Day. We are asking friends and family to wear blue to honor our AMCers. Break out your best blues and snap some photos so we can share on our forums. Paint your nails, dress your animals and deck yourself out. Join our celebration! If you would like to do more and help AMC Support through a donation, you can do that here.
When did you learn you won the lottery? How did your life change?
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