And Then Everything Changed.

A story of how we began to embrace a new definition of normal.

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My daughter sticking her tongue out at a KISS concert.

There are many moments that I can look back on and say ‘Yup, that was the one,’ in regard to my life altering in a drastic way. However, there are many more moments that weren’t so life-altering. Rather, these points in time were just precursors to the bigger things to come, although at the time I was living them they felt so much bigger than they were.

That’s the glory of hindsight, right? That the times when everything seems so HUGE and unrelenting, might actually be the start of something even BIGGER and more unbearable? I’ve said ‘When it rains, it pours’ so many times over the past few years, and it’s true. I’ve learned to never ask “What now?” or “What next?” because believe me, you’ll be shown the answer to those questions. I feel like saying “I can’t take anymore!” is a direct challenge to the Universe to prove that you can, in fact, take more. Just because I don’t want it to happen, doesn’t mean that it won’t happen.

There’s a song that comes on the radio from time to time, and every time it’s on, I have to change the station. It’s emotionally tied to a very strong memory, of one of those times when I thought that this was the ‘worst thing that could ever happen to me’. That song is It’s My Life by No Doubt.

“It’s my life
Don’t you forget
It’s my life
It never ends”

I was a new mom, 27 years old, and my daughter had just turned a year old. Her dad and I had just thrown her a big party in the public park near our house. It was the typical birthday fare; balloons, streamers, cake. My daughter was the center of attention, and it was on that day, with roughly 50 people crammed into a tiny building where we were holding her party that my magical little girl, in front of a full audience, had decided to take her first real steps. She’s a born performer, that one.

Cut to a few days after the birthday party to my daughter’s 1-year ‘well baby’ check-up, where I first heard the term ‘hydrocephalus’. Hydrocephalus, in layman’s terms, is a build-up of fluid in the brain. This ‘discovery’ was made after taking a measurement of my daughter’s head, where the doctor essentially told us that her head circumference size had jumped 75% since her last well-baby visit.

Now, as her mother…I was in shock. How had I missed a massive growth in the size of her head? I mean…was I that clueless? Her head didn’t seem larger…it didn’t seem to have grown that much. How had I missed this?

Next on the agenda came a series of tests, all given in a whirlwind fashion…CT-Scan, MRI, a visit to one neurologist, then another. We ended up in nearby Los Angeles, where a veteran neurologist informed me that my little girl would need to have a surgery. One that would help to fix this issue of hydrocephalus. I was scared. I wanted another opinion. I wanted time to think. But the doctor said if we waited, that our child would die. A date was set for the surgery. A surgery on my little girl’s brain.

It was at this point that I sort of went into a panic. A melt-down. Ok, fine. it was a temper-tantrum. A full-blown adult temper-tantrum.

I tuned out of reality and tuned into the radio as my husband steered the car onto the freeway. Feeding my mood, was No Doubt’s It’s My Life. While my husband tried to talk to me about what had just transpired, ie: the fact that we now had a surgery date set for our baby, all I could do to keep from completely losing my mind, opening the car door as the car sped along the 101 freeway, and disappear underneath it onto the asphalt, was to sing…Loudly.

“It’s my life
Don’t you forget
It’s my life
It never ends”

This wasn’t happening, not to us. This couldn’t be happening. This was my baby, my only baby. This wasn’t supposed to be how it is.

We made it home. I carried my daughter upstairs and cuddled her for what felt like hours, and just cried. My husband went to work, came home, went to work, came home…this was our interaction for days leading up to her surgery. This is when it started to unravel, when I felt as if I couldn’t take anymore.

But the Universe, oh that tricky Universe had other plans…

The morning of her surgery arrived, and we were given a 4:45 am check-in at the hospital. Sasha was running around like a crazy girl, having mastered the art of walking by this point, and was giving me chase. Did I mention it was before 5 am? If my lack of sleep and loads of stress weren’t keeping me worn out, the absence of a proper dose of caffeine was.

This tiny tot was running. Through the halls, across the waiting room, into other people. She stopped at one point, having been distracted by a girl with a stuffed animal which she attempted to bribe off the girl in exchange for our car keys which were firmly in her grip. This, of course, elicited laughter from both sets of parents, and our daughter, dejected if only for a moment at the disappointment in not getting her desired contraband, sped down the hallway once again.

Thinking back…I wish I’d let her run more. I wish we’d just walked right out of that hospital, got into the car, blasted It’s My Life, and gotten another opinion outside of our insurance plan. But, there we were, trusting the doctor would do what doctors are sworn to do…

That morning would be the very last time that I would see her run like that.

Three days after that morning, we would discover, after a drug-induced haze of constant morphine had been lifted, due to the urging of one very freaked-out mother (Me), that our little girl, the one who had been running with such a joyous abandon, was now paralyzed on the entire left side of her body. She couldn’t run, as much as she wanted to. She couldn’t use her left arm or move the fingers on her left hand. The smile on her left side drooped. And she wasn’t able to comprehend or recognize anyone who stood to her left. This I discovered one day in the Pediatric Intensive Care Unit while standing to her left, and calling her name and urging her to ‘find me’. She recognized my voice, and searched high and low for me on the right…meanwhile, I was inches away from her face, on the left. She couldn’t find me, because that entire left side, didn’t exist to her.

And the real bastard part of this story is, that she didn’t actually have hydrocephalus. What she needed, was for a ventricle opening (the opening that allows cerebrospinal fluid to drain from your brain to the spinal cord) to be a tad larger. It should have been an ‘in and out’ procedure. Textbook outcomes call for 3-days in the hospital at max and minimal recuperation time. 3-days max…words that unfortunately still echo in my thoughts at times.

You know that feeling that you get sometimes, when you really want to help, but there’s nothing you can do? Parents feel this all the time, when their kid is sick with the flu. Well, this is a fraction of how I felt, only my kid didn’t have the flu. She had paralysis.

We are now 10 years past that first surgery, and she/we are still recovering. She will most likely be in therapy for the rest of her life. All because of the way the surgical tool, the endoscope, was navigated through her tiny head, which left a ‘track’ in her brain, and damaged her entire right hemisphere. I try not to think of the ‘what ifs’, try not to think that this shouldn’t have happened to her, to us all. Try not to think about how she should have never been a child with ‘special needs’, seeing as how she was born completely 100% ‘typical’.

Today, she goes to therapy, on average, 4 times a week. Mainly because she’s in school, and we just don’t have the time for more. OT, PT, Speech, Aquatic, Behavioral (when she was younger). She’s seen more medical specialists than I could even begin to list. She’s been through hell and pain and torture. Her feet always hurt because of the braces that she wears to stabilize her ankle and help with her gait. She sleeps with a large plastic brace on her leg, and one on her arm. I make her wear an eye patch to train her eye to move to the center, in an attempt to try to fix the strabismus (eye deviation) so that we won’t have to undergo yet another surgery. She’s endured painful shots in the muscles in her legs, in an attempt to relax them enough so that we can get even more therapy. We avoid certain things, like bounce houses, crowded playgrounds, and roller coasters….just to name a few things.

It took a long time to come to grips with what our ‘normal’ is. And yes, I’m angry at what happened to her, because she doesn’t deserve to go through all of this utter shit. But she is the most incredible child. I mean, really. She’s joyful and funny. She sings with utter abandon to her favorite singers, Frankie Valli and Adele. She loves going to musicals and concerts. She not only knows who Gene Simmons is, but she has stuck out her tongue in tribute to him at a KISS concert. She’s a total foodie and will include items such as Foie Gras and Steak Tartare on her pretend menu when playing make-believe. She loves me, even with all the flaws. And you won’t hear her complain that this life of hers has been unfair. And maybe it’s because she hasn’t yet learned how to do that yet, how to get pissed off at the Universe for placing her in situations that are unjust. Or maybe it’s because she’s just, in her heart and at her best, a truly kick-ass human being that we can all learn something from.

Days are sometimes long and hard. That’s life. That’s the reality of living in this world every single day.

Sometimes, when I’m having a crap day, I begin to think about saying ‘What now!’ but then…I don’t. Because I know all too well, that there is always something else.

I see what you did there Universe.

View all posts by Shanna Sabet


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