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It all starts somewhere.

Updated: Jul 27, 2023

It's four in the morning and the house is silent. I've a cup of coffee resting near my right hand, and I'm bundled in mismatched clothing, draped in a throw blanket.

I'm trying to figure out how to write this...stalling, a bit.

I've written about Olivia's diagnosis before, a brief update on Facebook (at the time), but this feels different. This makes me feel vulnerable.

So, before my coffee gets cold, I'll begin...

There was once a time that I did not want two children.

The truth is, after Tyler, I was contented to be a mother of one.

Keith never said outright that he wanted children at the beginning, but one day, the thought...he's gonna wanna be a father...gut-punched me.

I left work in tears, my heart breaking. That evening, I had to look my lover in the eye and tell him that I didn't want his future child. Oh, and that it wasn't personal.

That was one of the hardest conversations, ever.

I cried, I felt selfish, I wavered a bit...but he understood. Keith never tried to sway me.

I guess we both knew that those types of decisions needed to be settled intrinsically.

I spent the next week soul-searching. I wanted and needed to understand, truly, why I felt the way that I felt.

Was it children, did I just not like the little buggers?

If you know me, you know this isn't the case. I thoroughly enjoy most children.

Plus, I absolutely love being Tyler's mother. What was wrong with me?

To truncate a series of emotional ramblings, I narrowed it down to a sort of PTSD.

If you're a divorcee with children, you may be able to understand.

At my core, I did want a child with Keith; a biological piece of he and I stamped into the universe. The thought, however, scared the shit out of me. Still does...

Elizabeth Stone surmised it beautifully when she wrote, "Making the decision to have a child, it's momentous. It is to decide forever to have your heart go walking around outside your body." She is so right.

Keith and I overcame that hurdle and married. Later that year we started trying and excitedly found ourselves expecting. My pregnancy was normal aside from a notation (after the fact): Olivia didn't move much. I remember with Tyler, I could feel his kicks, like flutters at first, then later -hard jabs. Olivia barely fluttered. She never really kicked, maybe just a few bunts here and there to say "Hey mom, I'm good." Tyler occupied my entire torso like a scene out of Alien. He would roll, and my stomach would deform into concave patterns of his imprint. Olivia was a gentle tenant. She was born into the world as easily as her occupancy. She scored nine on the APGAR test, and falling in love with her was effortless.

Olivia cried a-lot those first several weeks. A-lot. This isn't unusual of newborns though. I thought colic, maybe? She hated tummy time. Again, not unusual. She would plant her face firmly against the mat and scream. The first few months languidly passed, and we seemed to be getting the hang of things. Six months in, I started to notice that Olivia wasn't making much progress. In actuality, month six looked like month three developmentally.

She still couldn't sit up or really hold her head steady.

Month seven, eight, nine...all the same...then she had her first seizure.

Seizures are baffling to me. Their manifestation varies widely. I thought Olivia was having a response to some soy milk we'd given her. She projectile vomited, became rigid, floppy, she had difficulty breathing, her head drooped to one was absolutely terrifying.

I remember rushing her to a clinic as quickly as Keith could drive. I didn't even place her in the car-seat. I sat in the back cradling her, attempting to remain calm given the circumstances. By the time we were admitted, her seizure had dissipated.

The doctor on staff thought us to be over-reactive parents.

She couldn't see anything the matter with our child, other than her being quite chubby so, we were observed, and eventually sent home.

It wasn't until month thirteen, at her one year evaluation, that her primary care physician thought to mention early intervention therapy. Olivia, at the time, was manifesting some repetitive hand flapping and would stare inquisitively for extended periods of time (upwards of thirty minutes)...but her eye-contact was spot on. She could win a stare-down contest, no problem. So, autism? Probably not, or too early to tell.

The wait list for early intervention therapies in Texas is a long one; there are more children in need than resources available. We couldn't get her into occupational and physical therapy until about month sixteen.

At two years of age, despite weekly OT and PT, she still couldn't stand, hold a cup, she crawled clumsily with one fist closed, she wasn't engaged in play, she hadn't attempted true speech...the list was growing. At two she was scoring similarly to a typical nine-month old, developmentally.

Her doctor referred us to a geneticist and a neurologist for evaluations.

The neurologist couldn't find epileptic activity on an EEG, so he probed further.

"Could we have Olivia undergo a brain MRI?"

I had to thoroughly sign off on this because the risks associated with anesthesia for children under age three, but if he saw fit to recommend it...

We did. All the while, we waited patiently for our insurance to approve a microarray test to uncover answers on the Genetics side.

Her neurologist called (unknowingly) on my birthday. My mother-in-law Billie happened to be in the car with me. It wasn't the words he used, it was the compassionate way that he said, "Hi Mrs. Outlaw...Olivia's test came back (terminology) it looks to be mitochondrial...(terminology)...this is above my expertise. I'm putting an immediate referral to Texas Children's Hospital and their mitochondrial disease division." I quickly googled Mitochondrial Disease, then burst into tears.

A short while after, Olivia had her second seizure at home. A day after that, she was running a fever of 104 Fahrenheit that wouldn't break with over-the-counter medication. I called Texas Children's and spoke with their emergency department. They instructed me to bring her in. Keith came home from work early, we buckled her up, and drove forty-five minutes to the hospital. Despite Olivia burning up, she clapped and babbled cheerily along the way.

When we got through the doors of the ER, I looked down at Olivia's eyes starting to roll.

She choked on air, and they hurried her back.

She experienced her first Grand-Mal that day.

I haven't had many disconnects from my brain and body, but to watch a crowd of emergency staff crowd around your daughter while her vitals drop, felt surreal.

We spent two days in the ICU while she underwent every test they could think of, including a lumbar puncture. Her second MRI results came back while she was still under anesthesia.

A neurologist from Baylor College of Medicine sat with us explaining the findings, the 'eye of the tiger' brain scarring, the likely prognosis.

"This is so rare to see on an MRI of a child so young. In fact, we have the president of the board sitting in on our meetings because he's only heard of roughly ten MRI's in the world with similar findings. I'm so sorry. I wish I had better news."

"So this is only going to worsen?" I asked.

"Yes. It is degenerative. We just don't know how aggressive it will be, we need a better baseline of her disease progression."

I stared out onto the rainy windowsill and felt myself go numb.

Genetics would later find a mutation of Olivia's WDR45 gene, which gives her one official diagnosis: Beta-propellor Protein-associated Neurodegeneration. Olivia's condition, however, has manifested itself more medically complex. Her medical chart lists her as a medically complex patient. We are still waiting for the other anomalies within her genome to manifest themselves. She is truly one of a kind.

Despite twenty-twenty being an outwardly difficult year for the entire world, Olivia has hit a beautiful static phase. Static means her symptoms are being managed with a proper dosing schedule, and that she hasn't further regressed symptomatically. Our hope is to see her thrive, attain what ever she can achieve, and to bask in it, for however long. We've enrolled her in therapies and activities that will assist us in our efforts.

Twenty-twenty brought to us good moments, and many steps forward in our mental fortitude. Here's to twenty-twenty one...we're here for it!

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1 comentario

Carmen Sieg
Carmen Sieg
17 ene 2021

I am with you both in heart, spirit and prayers!!! Love Nanna❤️

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