A blog about LIFE...that happens to include Down syndrome!
I get a lot of praise from others who describe me as a stellar parent, which means a lot to me (thank you to those who have said that). Being a good parent falls right under living a Christ-like life, in my book. But I’ll …
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 …
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 ?. Continue reading 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 …
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 …
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. Continue reading 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 …
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 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.
Continue reading 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 …