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 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. [Read more…] about 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 expecting a child. Maybe everyone wants or hopes for their child to favor them. I deem this fear unwarranted AND silly. First, if there’s anything I’ve learned (and that I’m hopefully teaching you), it’s that genetics and conception are a roll of the dice. Who knows why any of us look like we do and why we have certain talents and others don’t? And frankly, who cares. If we all looked and acted the same way, it would be a weird and boring world indeed. Secondly, and let me reiterate, genetics are a crapshoot. There was a 1/560 chance that Everett would be born with Down syndrome. But let me ask you this, what are the odds he’d be born with hair that sticks up straight in the air and pink cheeks? Because racially we’re a mixed family, I guess I assumed that we would always check “other” or “biracial” for Everett on standardized forms. But most of his current medical records have him charted as “Caucasian.” Who saw that coming? Not me. To date, this is still more puzzling to me than the fact that he has T21. I’m still not sure which emoji to use for our little E 👶🏻👶👶🏽! [Read more…] about Confessions of a Rockin mom #4: Fears about physical similarity & race
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 expecting a little brother for Everett, this fear resurfaced. I recall the very specific fear that Everett and Liam would not have a “normal” brotherly relationship because of Everett having T21. I have two incredible brothers. And when I think back on our “normal” sibling relationships growing up, I recall A LOT of laughter. Don’t get me wrong, there were frequent fights, disagreements, and scuffles too. But there are way more hugs, stories, and laughter between the three of us that define our relationships as siblings. I’m only a year into being the mother of two boys, but I’ve learned the same applies to Everett & Liam. They love each other so much. And Everett definitely acts the part of big brother as he shows off for Liam, teaches him new tricks, makes him laugh….and slaps him around a little bit (boys…oy vey!). Down syndrome is such a small part of their relationship. The fear of them not having a “normal” brotherly relationship? Definitely unwarranted.
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. [Read more…] about 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 the fear that Everett would never be able to attend college. My college experiences were so meaningful to me, and I always dreamed that my children would build similar college memories. This fear was unwarranted. First, not everyone goes to college and they live rich, meaningful lives. Secondly, if Everett does choose to go to college there are hundreds of programs for differently-abled kiddos. And many of these students are attending standard 4-year and 2-year college programs. My alma mater, Texas A&M, hosts one as well as Clemson University (to name a few). This warms my heart, but I’ll have to confess…this old fear has now been replaced by a new one — Everett is going to move out and leave me someday 😱😱😭😭!
[Read more…] about Confessions of a Rockin Mom #1: College Fears
Stay tuned for the first, last-minute-mom entry coming this January- 2017!
Stay tuned for our first featured #mompreneur – coming spring 2017!
Exciting news about WDSD 2017 coming soon!