For the first year of Everett’s life I spent a lot of time and emotion worrying about him. At night as I was falling asleep, I would worry. When I woke up, the worry would begin again. And I would worry and pray all the way to work and back, every week, about things that were totally out of my control at that point. Where will he live someday? Will he ever be able to take care of himself financially? Will he be healthy? Will he play sports, go to college, have friends? Etc. Etc. Etc. I still don’t have the answers to some of those questions, but I don’t need to right now. Right now we need to focus on whatever Everett needs to be successful…right now. And I’ll have to confess, if I could go back I would spend more time pinching those cute cheeks and hugging that squishy little chunker, rather than worrying about him. He was the answer to our prayers and God doesn’t give wrong answers.
Bible class is a big deal to us, especially for our children. I have the greatest memories of bible class, VBS, youth group activities & church camps, from when I was growing up. I’ve always hoped and prayed that both of my children would build similar memories as they grow in their relationships with God. Early on after “the diagnosis,” I remember being afraid that Everett would struggle to be included in bible class and other church activities. This fear was definitely unwarranted. Each week in bible class Everett is fully included and participative in EVERY church activity. He prays, learns memory verses with his teacher and friends, enjoys the puppet shows, and always walks away with an interactive art project he worked on that reflects a weekly bible story theme. I have no doubt no…no doubt…that he will grow in building relationships with his fellow brothers and sisters in Christ as he worships God just like everyone else in our congregation. Especially in building those relationships with his female classmates ?. [Read more…] about Confessions of a Rockin mom #15: Fear of inclusion in bible class
The (as in “THE”) greatest fear I had for Everett after we learned he had DS, was that no one would accept him for who he was. I worried that anyone he encountered (friends, family, acquaintances, and strangers) would not fully accept him because of his diagnosis. This fear was very unwarranted. Thousands of people showed up to this year’s Buddy Walk to celebrate their loved ones with DS today. Friends, family, acquaintances, strangers….. [Read more…] about Confessions of a Rockin mom #14: Fear of acceptance (or lack thereof)
Read the enclosed link which features a letter authored by my dear friend and fellow Rockin mom. Let me tell you…from my experience (and the experiences of others), many healthcare professionals know very little about Down syndrome beyond the diagnosis. And unfortunately, many of these healthcare workers frame conversations about disability by saying harsh things to parents, and creating a lot of unwarranted fear. By referring to our children as “Downs” or an “error,” these healthcare workers are creating a conversation where babies with DS are less than optimal and in some cases, subhuman. For Pete’s sake people, when someone has a baby you typically say “congratulations.” As opposed to, “Your Downs baby was an error” and “I’m sorry.” This is far too common as we had similar experiences after Everett was born. Because of these experiences, I am determined…DETERMINED…to change this world for Everett, all other differently-abled kiddos, and their loved ones. One “Downs” at a time if that’s what it takes. Proud of this rockin mama…rock on.
I distinctly remember the medical bills rolling in after Everett was born. Geneticists, hospital bills, specialist co-pays, pediatrician visits, home healthcare, lab tests, you name it. We also decided early on that Everett would attend Kinderfrogs at TCU, no matter what the cost. So obviously, a very early and very real fear of ours involved the cost of raising a child with DS. This is a warranted fear. We have one child with typical chromosomes and one child who is “chromosomally enhanced” and there is no question as to which child needs more medical and therapeutic intervention (which comes with steep price tags…we meet our insurance deductible every year). But Vic and I have always pledged that we will do anything and everything it takes to give Everett whatever he needs to be a successful, independent, meaningful contributor to society. Some days that’s easier said than done though. I love this photo of Vic dropping Everett off at Kinderfrogs. I am so grateful to have an incredible husband who will move mountains for his family. [Read more…] about Confessions of a Rockin mom #12: Fears of medical costs & 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 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
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