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I never wanted a child with special needs

Updated: Jul 28, 2023

CONCEPTION I woke up at five that morning in preparation for my flight into California. My husband happened to be in Anaheim for work and I was eager to escape the humidity, so I seized three-days to join him. Whilst showering, I imagined how the weekend might unfold. First, our initial kiss at the airport, lunch at a swanky west-coast establishment, back to the hotel, dinner, beverages afterward at some quaint bar... Hmmm... My hands rested on my abdomen as I attempted to recall my last menstrual cycle. I didn’t feel pregnant, however, my husband and I’d spent those first months of marriage accustomed to romantic impetuousness. Fully expecting Flow to impose on our plans, I rummaged for a left-over pregnancy test from months back when we’d flirted with the idea of conception. As I waited for the outcome, I impatiently flicked my eyes to the stick. It chucked a deuce. “What the...?” Two red lines. I’d subliminally expected a negative result. Shaking it in disbelief, I tried to absorb the reality of it all. How was I going to tell Keith? I felt compelled to let him know immediately, but not via phone, so I tucked the slim gadget into a gift bag under some leftover tissue paper and decided that I’d present it to him once I’d arrived. That weekend played out blissfully. Our memories are full of conversations centered around our little life brewing on the inside. Even now, that getaway is still my favorite vacation memory.

GESTATION Continuing forward, my pregnancy ensued without abnormality or incident. I continued to exercise, kept a nutrition journal, and was consistent with my prenatal vitamins.

When it came time in the first trimester, before the anatomical sonogram, to submit for generic genetic testing, we did. They call it a NIPT, a non-invasive prenatal screen. In two weeks, a nurse rang. “Mr. and Mrs. Outlaw, there are no fetal abnormalities present. Also, would you like to know the gender?” The phone was nestled between Keith and I. I trembled a yes. “It’s a girl.” Without hesitation, Keith shed his calm disposition and leapt up, “I told you!” I chortled and pressed the phone to my ear. “I’m so sorry about that.” I said, “My husband is pretty excited.” In full transparency, Olivia is not my only child. Subsequent high school, and without direction, I married. It was young and rash, and from that marriage, I’d my eldest Tyler. So, though I’d been pregnant before (ten years prior) I'd a hazy remembrance of how it was supposed to go. Gestation with Olivia advanced peacefully in comparison. By month seven, I got to questioning when she’d aggressively start prodding, rolling, and kicking. I could feel her faint rat-a-tats, but Tyler was dysmorphic in utero. One time, while I was riding in a truck, Tyler jabbed me so hard in the ribs that I lost my breath and started crying. In retrospect, that disparity could’ve been something.

SIGNS At close to forty weeks, I birthed a healthy newborn. She’d come into the world at a nourished seven pounds, eleven ounces. She was perfect. As can be common with newborns, she cried excessively, and those first few weeks were rough. We were exhausted. Olivia and I’d also encountered some difficulty breast-feeding but with the introduction of holistic formulas, she thrived. She flourished, and even started cooing her vowels several weeks in. We’d gotten the hang of it! At five months, I found myself comparing her to other babies, thinking, “When will she amply hold her head up?” At month nine, she still couldn’t sit up unassisted. At fourteen months, finally getting the hang of sitting, she’d accomplished little else.

We started to worry. Her pediatrician (not suspecting Zebras) suggested that we run basic blood panels and get her into early intervention therapies to help her along. It took weeks for us to get her into physical and occupational therapy. Development was painstakingly slow, and Olivia was only making diminutive progress when she experienced her first tonic-colonic seizure and mini-stroke. Terrified and in shock, Keith and I rushed her to the nearest emergency room. By the time she’d been properly admitted, her symptoms had all but dissipated. Emergency personnel monitored her vitals, but like every other clinician they sent us home devoid of answers. The next day her condition plummeted. Frustrated with the previous emergency experience, I called the children’s hospital about an hour away. I remember rapidly regurgitating medical information while desperately holding Olivia. The triage nurse compassionately replied, “Okay mom. Bring her in to the EC. We’ll take a look at her.” No soon after pushing Olivia’s adaptive stroller through admittance, she started to seize and go into respiratory failure. A team of emergency room physicians rushed in to stabilize her. That blur of a week was spent primarily in the ICU. Since 2019, Olivia has undergone two MRI’s, copious amounts of bloodwork, and whole genome sequencing through Baylor College of Medicine. Our Olivia has been officially diagnosed with severe ASD, Dysgenesis of the Corpus Callosum, Global Development Delay and Seizure Disorder. Alongside these, she has a foundational mutation of her WDR45 gene that causes a very rare and little-known-about neurodegenerative brain disorder. Her prognosis is grim, and the best that we can hope for is for a happy life, however limited that may be.

ADMISSION I began this with a somewhat triggering title, but I am honest when I say that I never wanted a child with special needs: Here’s why:

  • I’m an introvert. I never thought that I would have to collaborate, communicate, and societally participate in the ways to which a special needs parent is mandated. From therapies, to doctors, to simply explaining Olivia’s condition with those who are curious. It is psychologically taxing.

  • I’m not an activist. It takes great emotional effort for me to promote our family in the name of awareness. It’s even harder my asking for assistance. Though Olivia has a condition worth investigating, my life’s devotion is to my family, not her condition.

  • I’m moderately chill, I don’t like to do much, and excitable activities just really aren’t for me. I guess this statement is like the observations above, but my dream of coasting through life has evaporated into days of constant troubleshooting, and preparation for the worst.

So, as you can see, the challenges of special needs profoundly lie within me. Special needs parenting has eviscerated all prior versions of myself, and it requires me to daily step-up in ways that I don’t naturally choose. It conjures up personal qualities to which I’d been previously unaware. It forces me to show-up, confront, and defend (often). It has toughened me emotionally, physically, and on the darkest of days has even fortified me spiritually.

Special needs parenting has put me on a path that I’d never traverse otherwise, and it is on this path that I continuously uncover my life’s meaning, with all of my newfound capabilities.

Our memorable weekend in California. We'd just discovered our pregnancy.

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