Month: October 2016

Confessions of a Rockin mom #20:  Fear of reaching out

Confessions of a Rockin mom #20: Fear of reaching out

I mentioned in a previous post that we were quiet about Everett’s diagnosis on social media for about a year. To add to that, I’ll have to confess…I took a long social media break during those early days. It was just too hard. I was…

Confessions of a Rockin mom #19:  Fear of breaking the news

Confessions of a Rockin mom #19: Fear of breaking the news

¬†We didn’t announce the fact that Everett was diagnosed with Trisomy21 until he was about a year old. We told friends & family, but we let our social media peeps figure it out for themselves over time. I believe I made it FB official 2…

Confessions of a Rockin mom #18:  Fears related to growth patterns

Confessions of a Rockin mom #18: Fears related to growth patterns

Everett growingLooking back, I had an early fear that quite frankly was a little ridiculous. After Everett was born, I immersed myself in any and all research related to Down syndrome. I learned quickly that kiddos with DS often are shorter and smaller than their typically developing peers. I was very concerned about this because I felt like it was just another characteristic that would make him stand out in a negative way. This fear was magnified when I learned there was a separate growth chart for kids with DS because of their smaller stature.

Well, as it turns out, this particular growth chart was not helpful in tracking Everett’s growth. He was “off the charts” huge! We track him now on the typically developing growth chart and he’s pretty average in height…but has hit the 80th percentile in weight a couple of times ?. Just goes to show you, people with DS come in all shapes and sizes just like the rest of us. But I’ll have to confess, no matter how big he gets…he’ll always be mommy’s “little man.” Continue reading Confessions of a Rockin mom #18: Fears related to growth patterns

Confessions of a Rockin mom #17:  Fears related therapies

Confessions of a Rockin mom #17: Fears related therapies

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…

Confessions of a Rockin mom #16:  Fear of the unknown

Confessions of a Rockin mom #16: Fear of the unknown

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…

Confessions of a Rockin mom #15:  Fear of inclusion in bible class

Confessions of a Rockin mom #15: Fear of inclusion in bible class

Bible class is a bigconfessions-image-15 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

Confessions of a Rockin mom #14:  Fear of acceptance (or lack thereof)

Confessions of a Rockin mom #14: Fear of acceptance (or lack thereof)

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…

Confessions of a Rockin mom #13:  Fear of labeling

Confessions of a Rockin mom #13: Fear of labeling

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…

Confessions of a Rockin mom #12:  Fears of medical costs & Down syndrome

Confessions of a Rockin mom #12: Fears of medical costs & Down syndrome

confessions-image-12I 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

Confessions of a Rockin mom #11:  Fears about never feeling like a “real” parent

Confessions of a Rockin mom #11: Fears about never feeling like a “real” parent

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…