The National Advocate for People with Down Syndrome Since 1979

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My Superhero, Bodey Bear
My Superhero, Bodey Bear

I never expected that I would be a mother, much less twice. And I never expected to be a mother of a child with Down syndrome. But life is not about expectations, life is about living through the unexpected, then learning and growing from it. Bodey came into our lives in October 2010. We quickly realized that we had been blessed; Bodey had chosen us as his family. He must have known we had a lot to learn and that he could teach us more then we could ever learn on our own. A year later, we found out Bodey would be a big brother and soon best friend to his little sister, Vera. Before her arrival, however, we found out Bodey needed heart surgery. As a new, and pregnant mother, I can say my emotions were a bit unstable. Little did I know, my son is a superhero. Two days after the surgery, he was sitting up in his hospital crib, smiling and high-fiving the doctors. I could finally take a breath, my baby boy was going to be just fine. My relief was short-lived however, when only nine months later, Bodey was diagnosed with cancer. He underwent another major surgery, had his right kidney and gallbladder removed, and then endured seven months of chemotherapy. Again, Bodey amazed us all with his incredible superhero strength and determination. Even in the grueling months full of awful side effects from chemotherapy, he would look after his new baby sister, bringing her toys and kisses when she cried. And, on days where I lost control of my emotions, he immediately recognized my weakness, and would share some of his strength with me through a Bodey Bear Hug (one of his many superhero powers). Just like any other superhero, Bodey possesses these innate abilities to make the world a better place. Bodey has a heart packed full of love, patience, and courage; no cancer, medicine or disability could ever alter his soul. The last few years have been harder and more challenging then I could have ever imagined; my experience of motherhood might be a slightly different version than others, but I wouldn’t change it for the world. I am a better person because of Bodey. I face challenges differently, of course, because I have a superhero who has my back. Bodey started preschool and loves his new classmates and teachers Miss Lynn and Miss Rebecca. He also recently won a trip to NYC, sponsored by Cintas and the Time Square Alliance, to say “good riddance” to cancer. At the event, Bodey shredded stacks of medical bills and a picture of a CT scan showing his tumor. It was an incredible way to say goodbye to all the hardships he has faced, while symbolizing a fresh new start in 2014. We know the challenges are not over, but Bodey has proven to the world that he is a superhero, with undefeatable powers. And we will always continue to have his back as well.




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Yolanda Gonzalez, United States, FL
2/4/2014 11:20:43 PM
Bodey... you are an Angel and Hero...

Meredith Johnson, United States, NC
2/3/2014 10:21:47 AM
Bodey is not the only hero here Amy!

Katie Qualheim, United States, GA
1/24/2014 8:17:00 AM
God picked the perfect family for Bodey!

Melanie Batenchuk, United States, VA
1/23/2014 11:44:06 AM
Amy has shown such patience and perseverance throughout Bodey's journey. I've known her since middle school and can't imagine a more thoughtful, loving mother for Bodey.

April McIntosh, United States, OH
1/19/2014 12:18:30 PM
Great touching story... truely a superhero!!

Cissy Fish , United States, NC
1/18/2014 8:11:42 PM
Your story and strength is astounding. I have a 20 year that went thru several heart surgeries as an infant and child. I have also volunteered for a pediatric cancer organization. Both experiences were life changing for me, a mother of 3. I can not fathom the courage, faith, and strength you have, to get thru both of these challenges with the same child. Bodey truly has made this world a better place! Thank you for sharing your story and God bless you and your family.

Diane Nicholson, United States, NY
1/18/2014 6:54:48 PM
What a heart warming story. Bodey sounds amazing and you all sound like a very beautiful family. I have a Down's boy "Miguel" on my 6th Grade basketball team and he is the nicest, most polite and very talented athlete! He has stolen the hearts of all the officials and fans at all the games we have played this season. I also work for the American Cancer Society and was part of our Camp Adventure program, a camp for kids with cancer. My experience with camp taught me how amazingly talented, strong, smart and resilient these young cancer survivors are and that they have more talent and spirit in their little finger than I will ever have! ACS continues to fund life saving cancer research and I am confident that we will one day finish the fight! Good luck with the contest and thanks for sharing your heart warming story.

Thomas, United States, NC
1/17/2014 4:55:47 PM
Super hero strength by an amazing and loving family, way to go Bodey!

Jessica Ofalt, United States, NC
1/17/2014 12:27:42 PM
Bodey is an amazing little boy! I wish the best for he and his family!

Alice Miller, United States, NC
1/16/2014 8:39:57 PM
This family is an amazing encouragement to all. Bodey is soooooo precious. He and his parents walked the 2.5 miles of the Holiday Parade in Asheville with our Western North Carolina Down Syndrome Float. What a charmer! Incredible young boy. I am running out of all the adjectives I want to say about this family and Bodey, wow. And yes, Bodey is our SuperHero!

Polly greer, United States, MO
1/15/2014 9:39:44 PM
Your family is an inspiration. God bless you on your journey forward.

karl burfeindt, United States, NY
1/15/2014 2:41:29 PM
God bless you for your attitude and strength!

Louise Roth, United States, IL
1/15/2014 1:05:22 PM
Bodey absolutely warms our hearts. He is such a joy, and a true superhero. Its amazing how much he has taught all of us! Love!

Melissa Vodak, United States, NC
1/15/2014 12:41:44 PM
Inspiring, hopeful, uplifting. New year with new possibilities.

Stacey Sordahl, United States, NC
1/15/2014 10:39:55 AM
I personally know the Johnson family. The good Lord sure picked the perfect famliy for Bodey! He is the sweetiest little fellow and they are Super hero parents in so many ways! Please accept my vote for this heart warming story about a terrific little Super Hero!! Thank you, Stacey Sordahl

Marta Gillilan, United States, IL
1/15/2014 9:02:45 AM
What a heartfelt, well written story from an incredibly loving Mother! Bodey is certainly an inspiration to all! He is definitely a Super Hero! God bless this caring family!

Meredith Johnson, United States, NC
1/15/2014 8:41:34 AM
Bodey is without a doubt a superhero and a sweetheart too!!!!!! So much love to share :)

Kim Rush, United States, NC
1/15/2014 7:37:33 AM
The story of Bodey move me with hope, to endure all the very small challenges I have in my life, and continue to smile as young Bodey did, and after all He went through he was not concern with his hurt or pain, but thought about his sister. The power in that speak volumes to me, that it's not about me but others. The greatest love, is to love.

Carmen Corrales, United States, NC
1/15/2014 4:04:00 AM
Bodey truly is a superhero!

Carolyn Swift, United States, VA
1/14/2014 6:54:50 PM
I love you Bodey bear!

robert, United States, GA
1/14/2014 6:29:13 PM
aa

Leigh Ann Coddington, United States, NC
1/14/2014 3:35:47 PM
I know this family and they truly are heroes and ambassadors for persons with Down Syndrome !

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