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 as the “Downs baby.” I realized right then, Vic & I would be a part of a different conversation about parenting. I was so afraid in those moments, that we’d never feel like “normal” parents. This fear was very unwarranted. Take a look at this photo — two parents EXHAUSTED from a having a new baby who isn’t sleeping through the night yet. Doesn’t get any closer to “normal” parenthood than that, does it? And three years in, I can assure you that Everett is more alike than different than his typical peers. And we face “normal” challenges associated with raising both of our children. Side bonus? We are now a part of an extended community filled with families of individuals with DS, and I wouldn’t trade that for the world! Love my Kinderfrogs community, my Rockin moms, and the DSPNT! [Read more…] about Confessions of a Rockin mom #11: Fears about never feeling like a “real” parent
Down Syndrome Awareness Month
In 2014, I introduced a new fact about Down syndrome on Facebook every day in October (Down syndrome Awareness Month). I got creative & tech savvy & I upped my social media game in 2015 by creating and posting thirty-one DS awareness memes with adorable photos of Everett and our family, to Twitter, Facebook, Instagram, and Pinterest. This year I created and posted my confessions, which seemed to be a big success! Thus, this section of mambility.com is solely dedicated to my efforts (and the efforts of others) during Down Syndrome Awareness Month each year. Who knows what I'll do in 2017 -- thank goodness I've got some time to think about it and possibly learn about a new digital tool or application!
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. In the early days, I was very fearful that Everett would never own and operate his own set of wheels like I did. Everett is 3 years old now, and I’ll have to confess, I don’t think I thought this fear all the way through. I mean, seriously…am I really supposed to hand over a set of car keys to EITHER of my children someday? This seems like a really scary thing to me. I think I’m cool if they wanna uber it or take public transportation for the rest of their lives ????. [Read more…] about Confessions of a Rockin mom #10: Fears related to Down syndrome & driving
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 little thing as a newborn. In the very early days, I recall getting a lot of unsolicited advice from healthcare professionals regarding Everett’s current and future eating patterns. Some said he’d never eat well due to his low tone and he’d struggle to gain weight & thrive, some said he’d forget to eat at around 3 months, and others were cautious and had a “wait and see” approach. So of course, in those very early days, Vic & I scrutinized every ounce little Everett ate, his spit-up, burps, diaper changes…you name it. And you know what we observed? Everett getting fatter and fatter every day. I don’t know why everyone was so doom and gloom about his eating in those early days…I tend to think it was low and inaccurate expectations. Well, I’m proud to say that this fear was utterly ridiculous and unwarranted in Everett’s case. When Everett was around 3 weeks old he began seeing therapists for his milestones. And each one of them will tell you what a good eater he was and is. As a matter of fact, he still gets high marks for independent eating from his preschool teachers! To the early naysayers I say — the proof is in this photo.
[Read more…] about Confessions of a Rockin mom #9: Fears related to Down syndrome and eating patterns
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.
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 perhaps even outright usage of the R-word. And I’ll have to confess, this was a word I used to use before Everett was born. Like many others, I thought it was just another harmless word and I used it inappropriately and frivolously at times. But the first time I laid eyes on my sweet Everett, that word instantly disappeared from my vocabulary. You see, the words we use are actually not harmless. They cause a great deal of harm when used carelessly. I still hear people use that word (the R-word) on occasion. And every single time, it cuts through my heart like a knife. Sometimes I correct people politely, sometimes I don’t have the strength to do it. Please know that if I hear or see you use this word, I may not call you out for it, but my feelings are hurt nonetheless. It’s an affront to my sweet Everett and all other persons with different abilities. One of my fellow Rockin moms says she’ll throat punch anyone who says it in her presence. So definitely don’t say it in front of feisty moms like her! [Read more…] about Confessions of a Rockin mom #7: Fear of the R-word
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 his geneticist. She showed us a photo of his chromosomes and there it was…that squiggly little 3rd copy of his 21st chromosome. She also handed us a packet that was essentially a very long list of health concerns that people with DS are predisposed to. Some of these concerns include (but are not limited to): Alzheimer’s disease, Leukemia, gastrointestinal blockage and/or abnormalities, cardiovascular disease, AAI, vision problems, hearing problems, hypothyroidism, ENT issues, obstructive sleep apnea. [Read more…] about Confessions of a Rockin mom #6: Fears about health and Down syndrome
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