21 Stories for WDSD- Boxing and Down syndrome

March 6th- Boxing and Down syndrome

Teaching anyone anything can be a challenging task. Whether you’re school teacher, a college professor, a baseball coach or, in my case, a boxing instructor, you’re constantly tested on your knowledge, proficiency, language and interpersonal skills on a daily basis.  Over time you hone your craft, adapting your teaching style to fit every individual that comes in with an open mind. Never, have I been tested like I have been when instructing our boxing program for individuals with Down syndrome….and I’m much better for it. When I look back at the teacher I was before and the teacher I am now, the difference is night and day.

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21 Stories for WDSD- How The Worst Day of My Life Became The Best Thing to Ever Happen To Me

March 5th- How The Worst Day of My Life Became The Best Thing to Ever Happen To Me

I will never forget that moment the doctor woke me from a nap to tell me my son has Down syndrome. It was not during my pregnancy, or at the hospital when he was born, or even at his follow up doctor appointment. In fact, it was only after he had been hospitalized for RSV, been diagnosed with congenital cataracts, and I had been told he had a heart defect that would require open-heart surgery to repair. It was not even until he was about three weeks old.

For an entire pregnancy and after being handed a perfectly healthy baby boy, I found out I was living a lie. I don’t think I have ever been so betrayed by life as this made me feel. I felt like I was standing in the room of life when suddenly I found myself flat on the floor, as if the very ground I was standing on had been snatched back from under me leaving me stunned, choking on the breath I was struggling to take.

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21 Stories for WDSD- Love Deeply

March 4th- Love Deeply

Ryan Callahan was born on April 1st 1986. On April 2nd, 1986, we learned that he had Down syndrome. For the next 31 years until his passing on January 20th, 2018 he was the light of our lives, but he had the most stubborn soul. He was our gentle giant who always had a ready smile and a wave. While Ryan had very limited verbal language, he managed to get his point across effectively….usually. As far as he was concerned he was communicating clearly, we all had a hearing problem. His sense of humor was all his own. Despite his disabilities, his ability to understand and use sarcasm was unparalleled. He could tease and aggravate with the best of them.

For the life of me, I could never figure out how he didn’t have the skills to take out the garbage, but could figure out how to open facebook on a smartphone and find pictures of himself and his friends. As any parent of a child with a disability I worried that he would be left out and have no friends.  I realize now that was a waste of good worrying. When Ryan was seven he started to play Little League Challenger T-Ball. Shortly after, he got involved with Special Olympics. Over the 25+ years that he was involved with Special Olympics he played unified T-Ball, did Soccer skills and Tennis skills transitioning on to Track, Volleyball, Basketball, Bowling in the winter and Summer Fun League, Powerlifting and Golf. He had a sport every season with some seasons overlapping. In the last few years he started to go the HAC Fitness Fridays working out every Friday at the Hockessin Athletic Center. Most recently he took up boxing which was offered by the Delaware Down Syndrome Association. He loved them all, but I think his favorites were Bowling and Boxing. Ryan had a habit of standing on the outside and waiting for someone to invite him to join in. I would get frustrated and we had many a talk after practice on the way home about how he needed to stop doing that. That was a one sided conversation as Ryan had his own plan.

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21 Stories for WDSD- The Diagnosis

March 3rd- The Diagnosis

It was Spring of 1969. I was a third year medical student doing a Pediatrics rotation. For 1/2day a week I was assigned to shadow a private pediatrician whose office was West Side of mid- town Manhattan. His practice was almost exclusively upper middle class and upper class New York children. (He helped out each month –unpaid- at the “clinic” for underinsured children at the pediatrics service at the hospital).

One day he said that he had to go to the hospital to see a newborn baby who was felt by the hospital staff to have Down Syndrome. So we took a short cab ride to a prestigious Manhattan Hospital to see the new baby.

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21 Stories for WDSD- Lessons Learned from my Brother Michael

March 2nd- Lessons Learned from my Brother Michael

I was in first grade when my brother Michael was born.  He is 58 years old, the youngest of six children and he has Down syndrome.  As the youngest child, my siblings and I doted on Michael.  We all fought to play with him and teach him new things.  My brothers loved playing sports with him like football and basketball in our back yard.  As Michael got older, my sister and I loved to pretend that we were his teachers and he was our star student.  All through the years the five of us thought that we were teaching him so many new things.  The irony in that is Michael has taught us more in his 58 years than we could ever teach him.

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21 Stories for WDSD – Embracing Eric

The Story Behind These WDSD Series of Posts
World Down Syndrome Day is March 21st. Starting today, for the next 21 days, The Down Syndrome Association of Delaware will be releasing a blog post each morning. You will have the chance to hear from parents, siblings, professionals and community partners who all have an experience to share. These stories will touch your heart and provide a wide range of perspectives. We hope you enjoy hearing from them, as they share their personal stories and pictures. Thank you in advance for following along each morning!

March 1st – Embracing Eric

This year, in a couple of months to be exact Eric will walk across a stage wearing a cap and gown graduating from high school. How did we get here?  Wow, time sure has flown by! I clearly remember his first day of kindergarten waiting for the school bus, and it seems as if it was just yesterday. Seventeen years have passed by, years full of so many emotions, changes, experiences and memories.

Seventeen years ago when I should have been the one to walk across a stage wearing a graduating cap and gown. I instead was wearing a hospital gown on my way to the most important role of my life “motherhood”. I was scared, nervous, happy, and very young. Eric was born on a sunny, warm Tuesday afternoon on May of 2000. After having an easy very healthy, normal pregnancy I was happy to finally hold him in my arms. He was so tiny, so fragile, he was just perfect. I could caress and stare at his beautiful face and tiny hands for hours. I remember the nurses taking him to the nursery for the night so I could get some rest, they could probably notice that young girl was in need of much needed rest. They were right, I felt so tired and exhausted by the end of the day.  Little did I know, I was actually recuperating strength for what was about to unfold.

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DSA of DE Now Accepting Board Nominations until March 7th

Dear DSA of DE Family and Friends,

We are accepting board nominations between now and March 7th at 12midnight. Please review the nomination form below if you are interested in applying. All completed applications should be scanned and emailed to info@dsadelaware.org.

Elections will take place at our Annual Dinner on Saturday, April 21st in Wilmington, DE. Registration to open soon.

Please email or call 302-995-1004 with any questions.

Thank you!

2018 Nomination Form