Changing Perspective: Winning the Lottery

by amcdocumentary on June 30, 2011

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.
AMC Awareness 2011

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.
AMC Awareness 6.30.2011

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?

{ 5 comments }

Change the way you see the world: The AMC documentary trailer

by amcdocumentary on December 17, 2010

I have learned a lot over the past 2.5 years. When I started this project, I didn’t know where I was going with it or how it would end, I just knew we had a story to share with the world. After conducting more than 70 interviews in the United States and Europe, filming wherever I could find a spot, I have learned the most important lesson: I could never have done this alone.

After working through more than 100 hours of footage, the trailer is finally complete. Before I share with you all, I want to recognize all the people that helped me. I could never have gotten this far without your generosity, your belief in this project and your support.

Special thanks to my husband Bob and my three boys Nolan, Colin and Owen. Bob supported my countless trips across the country, late hours planning and endured endless hours viewing documentaries to find the right style. The boys became my crew, helping set up on interviews and making long road trips more fun.

To Holly, our sitter and the boys second mom. Thank you for all the late nights and weekends you gave up so I could focus on this project. You always were willing to hear about the next adventure even when it meant your plans had to be adjusted.

For all the families that opened their homes to me and my family. Thank you for sharing your stories, your families and often times a place to stay. I will never be able to properly thank you for your support and love.

To the AMCSI Board and the Marcom Creative Awards for believing in the project and helping me to get started. I am proud to share the first viewing of the documentary direction.

To my editing partner, Phil Mueller: thank you for your patience, your willingness to donate your time on this project and for your vision. I couldn’t ask for a better business partner.

To Curt Strating @ Creative Wordworks for the hours of transcription and encouragement. You are a part of our team.

Thank you to my very special friends at Gerard Design for your support and creativity. I could never have created something so elegant and moving. You have always been there to help me make my visions become a reality. I can’t imagine getting to the end without you.

For all those I have not recognized, you are a part of this journey and this celebration. I love you all.

I hope you find this video as moving and inspirational as we find in our AMC families.

To the AMCSI Board and the Marcom Creative Awards for believing in the project and helping me to get started. I am proud to share the first viewing of the documentary direction.

{ 14 comments }

When A Door Shuts, A Window Will Always Open

June 4, 2010

It has been almost 2 years since I first posted my question about a documentary on arthrogryposis multiplex congenita (AMC). I have had an incredible journey that has taken me across the United States and to Spain, into the homes of strangers that quickly became family. I have completed more than 70 interviews to date [...]

Read the full article →

How a Fruit Salad Can Teach People To Look Beyond Physical Differences

May 12, 2010

Just a quick update for tonight. I just posted the first video excerpt from one of my interviews. I counted more than 70 interviews (!!!) and 100 hours of footage. This clip features Chris Hartwick who is a favorite presenter at our AMC conventions as well as graphic designer/cook/painter/black belt and has limited use of [...]

Read the full article →

Hello Is Anyone Still There?

July 27, 2009

Just a quick note to explain lack of posts. After almost 6 weeks of Owen’s surgery recovery (elbow release and osteotomy derotation for 2nd time) we are in the final week of casts. I have more than 60 hours of footage to finish editing and post. Later this week I should have at least one [...]

Read the full article →

Wisdom Comes with Opportunity, not Adversity

June 14, 2009

Arthrogryposis Multiplex Congenita. As a parent of a child with arthrogryposis, I know how frightening those 3 words can be the first time you learn them. I know how your emotions and self-doubt can get the best of you. How you can spend hours questioning what you did or what you could have done differently. [...]

Read the full article →