Monday, April 23, 2012
Mommy Monday with Super Cooper
One of my questions I ask my fellow Etsy shops for their feature is: "What inspires you?" For me it's my sons toys, images on clothing, coloring books, colors, bright patterns, sillyness etc...Well as of Friday, April 20th I have something new to add to my list of what inspires me. Cooper. Or as his family calls him, Super Cooper.
I was contacted by Cooper's mother through Etsy to see if I would be willing to make her son one of my monster totes, but she had some specifications about not wanting to put his name on the back. She wanted the superman logo with a "C" instead of an "S" and angel wings on either side of the logo. Initially I thought "cool...I love making my creations custom and one of a kind for my customers." As I read on through the message and she was explaining to me why and she needed it for the Angelman Syndrome walk in May to hold all of his goodies, I became very intrigued. Angelman Syndrome? Never heard of it.
She also sent this picture for me to get an idea of the logo she is talking about.
I will admit...I hesitated looking it up for a minute like his mother was going to be ashamed that I was so naive and had never heard of it. It seriously took me a few minutes to summon up the courage to type the words "angelman syndrome" into my search browser. As I began to read about it...I became inspired. As a mother. As a human being. As a healthy adult. This 4 year old boy whom I have never met...has inspired me. A soon to be 30 year old stay at home mom. My eyes welled up with tears. As they are now as I type. Have you ever been so inspired that it overcomes you and overwhelms you? I have. On Friday, April 20th, 2012.
I knew instantly I wanted to feature Cooper on my blog. Just to share is resilance and to inform about Angelman Syndrome. I was scared to ask his mom if I could do a write up. I opened our conversation many times in Etsy and began typing...but soon would delete it and close out of it. I thought..."well if she writes back and still wants me to create the bag, then I will ask her then."
She did message back and thanked me many times for accomodating her requests and getting it to her in time for the walk. It's then I told her I looked up Angelman Syndrome because I had never heard of it. This was her response:
Thanks for looking up Angelman Syndrome -don't worry we had never heard of either nor has 98% of the people who we encounter;) He is actually doing remarkable & has proved so many of the physicians wrong already. Life with Cooper though not always easy, has taught us not to sweat the small stuff & not to take anything for granted. He teaches us all something new everyday & EVERY single accomplishment he makes is monumental to us! The saying, enjoy the little things in life as one day you will look back & realize they were not so little means a lot more to us now since Cooper has come into our lives. The joy he brings into our lives on a daily basis far outweighs any of the negatives that accompany him having Angelman Syndrome. We could not possibly imagine a life without our Super Cooper. To know him is to LOVE & adore him. We are so very proud of Cooper & admire his determination. We have a dream that Cooper is going to prove everyone wrong & excel in areas we were told he would never be able to. He amazes us everyday & already has proven Dr’s wrong as he is now a walker! They told us he most likely would never walk. He is fiesty & determinded ;)
Now the tears are flowing like crazy and I am so moved I feel like I have the strength to move a house! Or atleast the strength to ask her if I could feature their story. The rest of this post was written by Super Cooper's mom. So please enjoy meeting this amazing little boy and discovering his story.
“I thought I would have to teach my son about the world, it turns out I have to teach the world about my son. They see a boy who can not speak, I see a miracle who doesn't need words.”
My son Cooper Owensby - Super Cooper as we call him, was born premature by 2 months on March 14, 2008. So we knew & were told he would have some delays due to this. But at about 6 months we noticed him not reaching major milestones & became increasingly concerned. We brought Cooper back up there to University of Chicago in Spring 2009 & it was suggested that he should see a Neurologist to rule out any other complications we may not know about. So we began that that process & numerous tests were run on Cooper. Everything came back negative, which was great, but still did not explain why or what was causing Coopers delays . At this point in Cooper’s life, we enrolled him in the Illinois Early Intervention Program. He was receiving Physical Therapy. After his year evaluation we were able to increase his services on Physical Therapy & also begin Developmental, Occupational & Speech Therapy. In addition, Cooper has been in Aqua Therapy with Easter Seals as he responds the best in water & first would bare weight on his legs much more effectively in the water.
His Neuroologist suggested Genetic Testing in August 2009,which we did right away. At the time he indicated it was primarily to rule out Angelman Syndrome.
On September 24, 2009 Cooper was diagnosed with Angelman Syndrome. Angelman Syndrome is a rare Neurgenetic Disorder. It’s a little known and often misunderstood disorder, which doctors frequently misdiagnose as autism or cerebral palsy. Normally 1 in 15,000 are diagnosed annually with this syndrome. Some of the characteristic features of AS include developmental delays, intellectual disability, lack of speech or speech impairment, seizures, problems with movement & balance (ataxia), sever sleep disorders. Cooper will require life long care. He has been & will continue to receive Physical, Occupational, Developmental, Aqua & Speech Therapy and is getting stronger & learning new skills with the help of his amazing & supportive therapists everyday.
Cooper turned 3 in March 2011 & started pre-K school March 2011, he has made huge strides with the help of his amazing therapists & teachers . As of April 2011 he started to stand with support & pull himself up independently. With the help of a gait trainer & a lot of hard work & determination I am happy to report as of December 4, 2011 Cooper is officially an independent walker! This was a huge milestone for Cooper.
Coopers inability to speak is one of the toughest parts for us. Our next step is getting him to better comprehend & utilize his communication devices with more success. Hopefully he will continue to excel with his communication skills. All tough the odds are he will remain non verbal, Cooper still finds way to communicate & get his point across to others. Just because he is unable to speak do not underestimate him. He can definitely understand what people are saying to him. We just have to work with him to find alternate ways to help him better express himself. Cooper is extremely resourceful ,calculated, charming & sneaky.
Life with Super Cooper though not always easy, has taught us not to sweat the small stuff & not to take anything for granted. He teaches us all something new everyday & EVERY single accomplishment he makes is monumental to us! The saying, enjoy the little things in life as one day you will look back & realize they were not so little means a lot more to us now since Cooper has come into our lives. The joy he brings into our lives on a daily basis far outweighs any of the negatives that accompany him having Angelman Syndrome. We could not possibly imagine a life without our Super Cooper. To know him is to LOVE & adore him. We are so very proud of him & admire his determination. We have a dream that Cooper is going to prove everyone wrong & excel in areas we were told he would never be able to. If we are "down" & upset about what he has not or yet to accomplish we just have to look at him & his smile changes our mood instantly. He continues to amaze us everyday. " All we could ask for in Coopers life, is that he be included.
I have been so moved by Super Cooper, that I will be introducing a line of cute little stuffed monsters that will all have angel wings and on my crafters tag it will say "Inspired by Super Cooper." Sales from these little monsters I will be donating directly to a fund set up for Cooper to help out anyway that I can.
The Angelman Syndrome Walk is on May 19th, and Cooper and his family do have a team page set up where you can donate to his team if you would like to. The link is here.
Here is a list of other organization links to learn more about Angelman Syndrome.
ASF Angelman Syndrome Foundation
FAST Foundation for Angelman Syndrome Thereputics
This past year with his help & people voting daily FAST was granted $250,000 from a company called VIVANT which was the amount needed to begin the trials! It was huge for our AS community. FAST is who is funding the clinical trials for a cure. Actually Colin Farrels son has AS & he has been a huge support for spreading the word about AS & a cure. He went on Ellen, Jimmy Kimmel etc & gave shouts out to vote for a cure & FAST WON! Here is a link from the FAST archives in which was played prior to winning the $250k.
Also here is a related site for many of the news events abouts AS & the trials.
Another AS mom has created a line of bibs for those with special needs...check out her line here.
So I again I will ask you, WHAT INSPIRES YOU?