A blog about LIFE...that happens to include Down syndrome!
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 up to receiving Everett’s karyotype results…I prayed. A lot. I remember praying very hard that the results would come back negative for Down syndrome. But I know now, three years later, that God had other plans for Everett and our family. And I am genuinely grateful and I praise Him every day for answering my prayers in a different way than I expected. His plans and ideas are always so much better than mine. If Everett had been born with an ordinary amount of chromosomes, then our lives would have been just that…ordinary. But instead, I get to journey along with an extraordinary kid (2 extraordinary kiddos, actually 
?) and those of us who choose to, can see the world around us in extraordinary ways. I joked in a previous post that I wish everyone could see things as I do through their own pair of “Everett glasses.” But there was a lot of seriousness behind that statement. I know as his parent I’m supposed to teach Everett important lessons, but for the past three years he has been my greatest teacher. I’ll never forget when he bowed his little head and led us in prayer one evening last spring. There are hard days raising these two little boys of mine, but in these moments I find so many answers, to so many of my prayers. And all of the fear just disappears.
Continue reading Confessions of a Rockin mom #8: Waiting on karyotype results
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 mom
ents 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 asking me after I shared the news of Everett’s diagnosis, “What exactly are you afraid of?” I also remember my response, “I’m afraid everyone will treat him differently.” Hence, this is fear#5. And I’ll have to confess, I was right — everyone does treat him differently. If I had cash for every instance a complete stranger has approached me to tell me how adorable Everett is, I’d be a rich woman. Similarly, if I had cash every time someone approached me and asked, “Are you Everett’s mom? I love seeing him on Facebook!” — I’d be even richer. Continue reading Confessions of a Rockin mom #5: Fears about being treated differently
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 DS are at risk of having AAI and those who do, should be restricted from sports. This touches on fear #2 — the fear that Everett wouldn’t be able to play sports. When we found out Everett was a little a boy we were overjoyed! Vic & I both love sports, so we immediately began talking about little league and soccer matches. But when we learned Everett had an extra chromosome, I’ll have to confess, these dreams were temporarily crushed. Neither of us knew anyone with Down syndrome and we both just assumed that kids with DS couldn’t play sports. We were VERY wrong! Kids with DS can play sports, but some shouldn’t because of AAI. Everett was screened last July and he does not have AAI. And now…my old fear of “He won’t be able to play sports” has been replaced with “What if he gets hurt playing sports?!??” We frequently refer to Everett as our little athlete because as you can see from the pic collage, he loves shooting hoops, kicking soccer balls, bouncing, swinging, dancing, swimming, etc.! And little brother may follow in his footsteps (he LOVES copying big brother). Or he may not. And as they each grow, their gifts and interests may change. And that’s okay…not everyone was born to be an athlete. In the meantime, though, I sure am enjoying being active with both of my sweet boys. Continue reading Confessions of a Rockin mom #2: Fears about Sports and AAI
We found out that Everett has Down syndrome moments after he was born (this is called a birth or postnatal diagnosis). In those moments after we heard of his diagnosis, a rush of fears went through my mind. One that I can painfully recall, was …