This is my final confession of the series (and Down syndrome Awareness Month -2016) and for obvious reasons, it will address Halloween! For Everett’s very first Halloween we dressed him up as a baby skeleton and I bought Vic & I matching skeleton tees (the tees have become a Halloween tradition for us!). We took […]
Confessions of a Rockin Mom
What is a Rockin mom?
Before I dive into my confessions-of-a-rockin-mom, let me provide you with a little context and explain what a “rockin-mom” is. The type of diagnosis your child receives begins to shape your identity as a parent of a child with DS. Diagnosis stories and experiences are all very different. Some parents do prenatal genetic testing and receive an early diagnosis (prenatally, before the baby is born). Some parents decline early genetic testing, or perhaps the test results were wrong (as in our case), and receive a postnatal or birth diagnosis when the baby is born. And because there are different kinds of Down syndrome (Translocation, Nondisjunction/Trisomy 21, and Mosaic), some parents receive a delayed diagnosis. Regardless, the first conversation one has with their primary healthcare practitioner (be it OB/GYN, nurse practitioner, geneticist, midwife, pediatrician, etc.) shapes the way parents and family members perceive their roles as caregivers of a child with Down syndrome and how they perceive their child. Unfortunately, there are a lot of stories out there where healthcare practitioners present no information about DS, negative information about DS, and/or encourage expecting parents to terminate their pregnancies because of a prenatal diagnosis of DS. These stories contribute to a larger narrative of Down syndrome.
Rockin Moms and the Down syndrome Diagnosis Network (DSDN)
Because of these diagnosis stories, a group of moms collectively banded together via social media (Facebook) around four years ago and the DSDN emerged. We moms (and a few dads) refer to ourselves as “Rockin moms” and we are
determined to change the world one social construction at a time. We commonly post pictures, stories, and anecdotes to social media in an attempt to alter how people perceive and construct ideas about Down syndrome. Our chosen descriptors (Rockin moms, because we have children who “rock” an extra copy of the 21st chromosome) are furthered through the ongoing collective hashtags, #rockthe21 and #theluckyfew. Additionally, every year on World Down syndrome Day (3/21) as well as DS Awareness Month (October), we engage in social media campaigns that reconstruct inaccurate or partial views of what it means to have or live with Down syndrome. In March 2015, we participated in #lifewithDS by creating blogs that described our average days with children with DS (very much like a typical day for many parents and family members) and posting/sharing these stories. This year many moms pushed the hashtag #deardoctor by posting/sharing letters authored by Rockin’ moms that describe the effects of harsh and constructive diagnosis experiences. Again, these campaigns are primarily intended to socially construct new ideas about postmodern life with DS. I deviated from the #deardoctor movement this year as my healthcare practitioner was very compassionate when delivering Everett’s diagnosis. Instead, I wrote about “Confessions of a Rockin mom” which implicitly connects with the #deardoctor movement as I described many of the early fears I had when first learning of Everett’s diagnosis.
Confessions of a Rockin mom
“Confessions of a Rockin mom” were designed to connect with three primary audiences: 1) Current parents with children with DS who share similar experiences to ours, as well as those who encountered different experiences (e.g. a prenatal diagnosis). I think it’s important for everyone in the DS community to understand that each of our stories is unique, and respect and learn from these different stories. 2) New and expecting parents of babies with DS. In the early days, I had a lot of unwarranted fears and wasted a lot of time fretting over things that were out of my control. I wish I would have worried less and just enjoyed my new baby and my new role as a parent. I’m hopeful by dispelling a lot of the fears I had early on, I can encourage new moms and dads to worry less and enjoy the moment. 3) People who do not have a lot of exposure to differently-abled persons. This includes healthcare practitioners who deliver diagnoses, but have minimal exposure to the children they diagnose beyond the diagnosis. Perhaps by altering their perspectives, we can then begin to alter the overarching narrative of Down syndrome. So here are my “Confessions.” As you will read, some of the fears I had in the early days were warranted. But most were not, and I think by reading through these sorted tales of #lifewithDS you’ll find that being the parent of a child with Down syndrome is just like….being a parent.
Everett was born nearly five weeks early. Vic & I were both convinced it was false labor and we were shocked when the doctor on duty told us we were having a baby the night of May 26th, 2013. Everett was born that morning of the 27th, and shortly thereafter diagnosed with Down syndrome. It […]
We were overjoyed when we found out that I was expecting a sibling for Everett. And when we learned Liam was a little boy, we couldn’t believe how blessed we were. Two little boys…brothers! For 9 months we waited patiently and happily for little Liam’s arrival. But I’ll have to confess…the night before I was […]
Because Everett was diagnosed with Down syndrome right after he was born, we had to order a karyotype blood test to confirm his diagnosis. In the meantime, all we had to go on in gauging whether he had DS or not, were some physical characteristics. I remember a lot of people (especially healthcare providers) constantly […]
Fact — “Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.” (NDSS.org). Let’s focus on the second part of this statement for a second, specifically the term “development.” Hopefully by now […]
When I was about 7 1/2 months pregnant with Everett, Vic & I went out to dinner one night at one of our favorite local restaurants, an Italian joint. I distinctly remember that night. I remember what I wore, I remember what I ordered, and I remember where I sat. I remember these (what would […]
When I was a kid in elementary school, all of my differently-abled peers attended a separate class that was titled “self-contained.” Since I attended the general education classes, I never interacted with any of these children. These interactions (or lack thereof) were the first memories of differently-abled persons that I drew on when making sense […]
We live in a modest home. Between Vic, me, the boys and our two large dogs, space is tight in our 2 bed/1.5 bath 1925 bungalow. But we love our home. Our boys are growing, however, and we know there will come a point when we have to spread our wings and fly. Vic & […]
When Everett was about 6 months old we took him to have his picture made with Santa at a local mall. When we got settled into the long line of families waiting for their obligatory Santa photos, we realized the parents in front of us had a daughter with Down syndrome. Her name was Meagan […]
In this confession I’m going to address prenatal testing with one caveat — this post is NOT, I repeat NOT, meant to stir up personal and political opinions related to pro-life/pro-choice issues. If anyone comments as such, your remarks will be deleted. Here goes. When I was around 20 weeks pregnant with Everett we received […]