A blog about LIFE...that happens to include Down syndrome!
Vic and I waited so long to be parents. All we wanted to do was be mom & dad to a sweet baby and join in on conversations about parenthood. Shortly after E was born, I recall hearing a few healthcare workers refer to him …
Another one of my early fears involves Everett’s ability or inability to drive his own vehicle someday. Driving is definitely a right of passage in the USA and I have such fond memories of getting the keys to my first car when I turned 16. …
Everett was born 5 weeks early and he was by far the smallest of my 2 children, weighing 6 lbs 13 oz. Luckily, his early arrival didn’t lead to too many complications (jaundice is the only one I can recall) but Everett was a scrawny …
I posted a while back about a book I recently read called “The Circle Maker.” It’s a great book that addresses the power of prayer. I’ve always believed in the power of individual and collective prayer, and I’ll have to confess, in the days leading …
For the past few decades, for some reason, the word “retarded” (used in a derogatory nature) has been en vogue. Watch any movie that was a pop culture phenomenon in the last few decades and you’ll see and hear inappropriate jokes about differently-abled persons, and …
So most of the fears I’ve talked about so far have been unwarranted. Today I’m going to address a very real and warranted fear that weighs on me quite a bit. When we received a definitive diagnosis of Trisomy 21 for Everett, it was through …
In the moments after Everett was diagnosed, I remember asking for my mom. My mom is incredible. She’s an educational diagnostician with a special education background, so she works with kiddos with all kinds of different abilities through the public school setting. I remember her …
A strange fear that I distinctly recall after learning of Everett’s diagnosis, was the fear that he would never be like me because we have a different number of chromosomes. So this fear is a little narcissistic, but perhaps everyone feels this way when they’re …
Everett is our oldest child. We always talked about having more than one child, so I’ll have to confess — when Everett was born and diagnosed, I wondered how that might affect any children we might have later. And when we learned that we were …
In the days leading up to receiving Everett’s karyotype results, we met with his genetic counselor. We were given a list of things that kids with DS are predisposed to including AAI (atlantoaxial instability). This is when there is slippage in the vertebrae. Kids with …