Maddie’s Story

On Friday, April 27, 2001 Maddie was born. We had our perfect little girl to love at last. As our love grew, our perception of perfection changed. We experienced joy in the smallest of accomplishments as we searched for answers, visited doctors, missed milestones, and counted calories. There were no answers and no silver bullets. We were told many things might not be possible. We were told Maddie might not walk . . . might not talk. We were told if she did not start eating she might die. We discovered that love and fear are first cousins. We learned that standard milestones could not matter to us; we could be ecstatic as long as Maddie kept moving forward. Every time she proved a specialist wrong we danced. Every time she won the heart of another adult with her sweet smile and loving nature we celebrated. Sometimes we got lost and forgot what was important, those times we cried. At 30 months old we found out she had a chromosomal disorder that did not even have a name. We really didn’t understand.

On Monday, January 26, 2004 we arrived in Houston for a clinical study of the genetic disorder called Dup17p 11.2.  Doctor Potocki and her staff were wonderful and in five days of tests we had a tremendous amount of information but not a lot of understanding.  On the last day of the Texas Children’s clinical study someone asked her if she could stand on one foot.  After all the testing she was exhausted and didn’t even try.  That night in a hotel room, her Mom and I looked around the corner to see Maddie in front of a mirror practicing standing on one foot.  That simple act was the beginning of Maddie’s efforts to help us gain an understanding no one else could give us, she wants to succeed, it just takes a while.

On Saturday, December 14, 2013 Maddie achieved the rank of Black Belt in Shaolin Kempo Karate. She was presented her Black Belt by World Champion Master Fred Lapan (check him out on youtube) after a very rigorous three hour test.  Maddie started studying Karate in December of 2009 and has gone to class twice a week for the past 4 years and has worked very hard.  During that time we have heard a lot of “KeeYahs” and jumping coming out of her room.   Before karate Maddie had tried a number of activities including gymnastics, dance, ice skating and soccer.  Nothing clicked until she met Master Freddie and found a group activity where she could go at her own pace and earn frequent symbols of her success.   For Maddie, Master Freddie was the perfect combination of nurturing and demanding.  He set clear expectations, gave frequent constructive criticism, led by example and clearly communicated and physically demonstrated his expectations, all while never sounding upset or angry. The Karate Belt system, white/yellow/orange/blue/etc, created a real sense of accomplishment that helped keep Maddie on track.  Her accomplishment let us understand that the right activity and the right teacher were critical to her success.

[blockquote type="blockquote_quotes" align="center"]  Her accomplishment let us understand that the right activity and the right teacher were critical to her success.[/blockquote]
[blockquote type="blockquote_quotes" align="left"]Maddie is “almost 13” now, growing up too fast, doing well in 6th grade and still trying to help us understand. [/blockquote]

Maddie is “almost 13” now, growing up too fast, doing well in 6th grade and still trying to help us understand.  Last night she told me “You haven’t been ready to hear this yet, but I think you are now.  I wasn’t ready to be born when I was born.  I didn’t go one month old, two months old, three months old and so on like other kids.  I stayed zero until I turned four then I became one.  That is why I didn’t eat, why I like playing with younger kids and why I act out sometimes.  On the inside I am only eight.”  I told her she should write a book, maybe then we can all understand.