Hi. I’m Amber. I tend to define myself as a dual-purpose individual: mom and writer (here’s my portfolio). But like you I’m a lot of things. A baller (hoister of three-pointers), em dash enthusiast, neurodiversity advocate and neurodivergent human, wife to an electric-guitar-playing environmental engineer (Cody), sister to two wonderfully witty and strong women (Corinne and Emily), and oldest daughter to east-coast icons Barb (whom we lost too soon) and Greg.
My daughter, Stella, was born at 3:26 a.m. on August 17, 2008, a day ahead of schedule and after 32 hours of un-medicated labor. Notice how I don’t necessarily call it a “natural” birth. How could any baby’s birth be called “unnatural”? Besides, that much pain doesn’t feel “natural.” You know what? I should remove this from the “About” section, as it seems totally irrelevant now. A footnote at best. Borderline problematic in that it contributed to 48 hours without sleep before Stella’s arrival. But at the time it seemed super important and unhealthily so. There’s something interesting about the desperation I felt to do things “right.” It’s part of my story, so I’ll leave it in for now.
My husband and I were totally unprepared for what would follow her arrival. We’re told this is normal. Most of what followed could not be called “normal.” I’m now okay with it now but, man, did that acceptance take time.
Stella was breastfed for over two months. The plan was to do so for a full year. This dream crashed and burned, thanks to a lovely case of reflux and probable cow’s milk protein intolerance (or more accurately “my milk” intolerance), which caused Stella pain and led her to refuse to eat. Hypoallergenic formula and an NG tube followed. For a couple of tube-feeding months, it looked as though she would never resume normal, adequate eating. But thankfully, with some wonderful support that I was very fortunate to eventually find, I successfully weaned her from the tube.
Here, I documented our journey toward a tube-free, food-friendly Stella. There was a point when we said, “Phew! That feeding fiasco is over, and now typical, care-free family life can begin under a beautiful rainbow of blissed-out normality!” Not so much. There was always this sticky layer of stress and struggle binding us, though we could never grasp it. Cody and I knew we were doing something, maybe everything, wrong. Especially me.
Funnily enough, though no one was laughing, Stella’s eyes started crossing at around the 18-month mark. Later, we learned that her vision issues were accompanied by motor and sensory challenges that impact her development and regulation. Stella has done a lot of occupational, physical and vision therapy. She has been seen by a lot of experts, probably too many. I’ve consulted with people around the world in order to find the best path for Stella. At one point we flew to Cleveland to get an opinion and some exercises for Stella to do, and the highlight of the trip was seeing an owl outside the hotel. We now know Stella is wonderfully neurodivergent and some of those things we tried to do to help her were misguided and based on a societyal view of differences as deficits. I know better now and I’ve apologized to her, by the way.
I’ve been a writer for over 15 years. Mainly a copywriter. I’ve written ads, websites, boarding announcements, billboards, manifestos, you name it. I’ve also written about neurodiversity and worked as a neurodiversity hiring advocate to help eliminate the bias against social and learning differences that results in shockingly high unemployment rates for perfectly qualified autistic and otherwise neurodivergent job seekers.
I have aspirations. To complete a home renovation. To someday control my cowlicks. To get a borderline invasive facial treatment to treat my undereye bags. To find jeans that don’t stretch into Bieber’s version of Hammer Pants. And, as with everyone else I’ve ever met in my entire life, to write a book. Maybe? Or just an article. Or maybe just this blog. Or a napkin-based series of scribbles. I want to tell a story of awkwardly yet triumphantly disagreeing with the status quo. About being not-quite-neurotypical and making peace with that.
Questioning the status quo is how I helped Stella get past the feeding tube and it’s how we’ve navigated her strabismus and amblyopia and sensory issues and come to embrace autism. I welcome and seek out evidence-based approaches and research from pubmed.gov all the damn time. I LOVE VACCINES. When at first, no “experts” had real answers for Stella’s feeding or vision issues, I started asking a lot of questions. Our story is not just about shit hitting the fan, but about modern motherhood as I have experienced it—anxiety versus acceptance, and a strange mix of insecurity and bravery. Letting go while holding on.
I’m genuinely glad you stopped by. So much more has changed than has stayed remotely the same since this blog began. We got through some really challenging times and if you’re here during a tough time, know that you’ll reach the other side, too. Drop a line via email (firstname.lastname@example.org) or comment sometime. Thank you for your time, interest, and (hopefully perfectly aligned) eyeballs.