The Paradox of an Aging Special Needs Child” – Beth
Standing in front of my kitchen sink in the cold, blue, January dawn, I run the warm water to wipe off my son’s face before he heads off to high school. The washcloth steams visibly in the frigid morning air as I carefully wipe off Benny’s face, getting off any traces of breakfast or sleepy eyes. He turns 15 in a week. I realize that I have to reach up to wipe off his face. He’s now taller than I am. I’m struck by the poignancy of this moment. Continue reading
“WHO’S GOING TO PROTECT HIM WHEN I’M GONE?” – Nancy
Over-protective. Controlling. Helicopter Mom. Whatever you call it, that’s who I am. I’ve been this way since my first child was born in 1991. If I could have wrapped all three of my children in bubble wrap and locked them in the basement until they were 30, I would have. And yet, I haven’t been able to protect my most vulnerable child from exploitation and abuse. Continue reading
Immediately following Caiden’s birth, we knew he was facing many struggles. We had a lot to learn. We had a lot to help him overcome. We had a lot of work. Did I spell that loudly enough? WE HAD A LOT TO LEARN. A LOT OF WORK! Continue reading
Super Bowl Sunday marks two years since we officially received Cadman’s diagnosis. It was so strange answering an unexpected phone call from the neurologist while watching the Super Bowl, and immediately concerning. Just a couple of weeks prior, we also found out that I was pregnant with our second child, Emma, who is now 16 months old and the most delightful addition to our family. My husband Dan and I had been seeking answers for some unexplained concerning issues going on with Cadman for almost a year, and finally, the answer was found through the Whole Exome genetic test which the neurologist reluctantly ordered. The test results came in that Sunday a few months after Dan, Cadman and I did the blood work at Rady Children’s Hospital in San Diego, and the neurologist wasted no time in reaching out to inform us of the very unexpected results. It was an expensive test and one that apparently doctors don’t usually order until lots and lots of other tests have been completed and provided no answers. Continue reading
Every kid dreams of growing up to be a superhero. I can remember running through the house pretending to be everyone from the Incredible Hulk to Superman, and who didn’t dream of shooting webs like Spiderman? Well, fast-forward a good number of years and unfortunately, I am still not a superhero. I don’t think any child ever has a single moment in which they realize that they probably won’t grow up to be a superhero, rather it is a slow transition from what could be to what really is. Right now, you are probably hoping that I have some kind of point I am trying to make with all of this, and I promise I do, just bear with me. Continue reading
I love this time of year! I love snuggling with my kids beside the soft glow of the Christmas tree and pretty decorations as they fall asleep. This is a magical time of year to see their faces light up as we drive through town or when they see there is a present under the tree with their name on it. The Christmas season is a great time to reflect on everything that has happened throughout the year. We have had some great times as a family. Continue reading
This story was shared with #MyGivingStory in connection with the Giving Tuesday initiative. #MyGivingStory shares the stories of everyday heroes giving their time and talents to the charities they love. Continue reading
A couple of weeks ago, we participated in something special – our Ben was a Patient Champion at the Nationwide Children’s Hospital Columbus Marathon and Half Marathon. It was the most amazing experience for all of us, including Ben, and one we’ll not soon forget. It made us feel seen, heard and celebrated. Again, amazing. Continue reading
I know those who attended the conference in Texas this summer will all agree that is was fabulous. It was so great getting to meet each other in person. We have all connected through our blog stories and Facebook group, but to actually get to meet and let our kids meet and become friends was truly priceless. Continue reading
We just had our first big family vacation. Overall it really was great, we had good strong family moments, Lilah got to chase seagulls, Tyler got to ride in a helicopter, and I got to swim in a tank with dolphins! We had some magnificent food and a good recharge from work and social life. You know what we didn’t get a break from? Our CTD world. Continue reading
