Death, Shhh. The Universe is Speaking

The Soul Connection

It seems as if the Universe has messages for me all of the time. Last weekend, my daughter and I were driving back together from one of our activities, and as she so often does, she brought up what was on her mind. I figured she was about to say something, as she had been staring out of the passenger side window, not really focusing on anything in particular in regard to the view, but focusing internally instead.

“Mom, what happens to you when you die?”

I glanced quickly at her, and smiled. She loves to surprise you with the ‘car questions’, I thought. ‘Car questions’ had become a thing that I’d coined years ago, after noticing a pattern with Sasha and the types of questions she liked to save specifically for the car. Now, it very well may have been that she reserved this line of questioning for the times when she and I were alone for extended periods of time, where the only interruptions would be the flow of traffic or what was on the radio. This perfect scenario just happened to be in the car.

”Well, I’m not entirely sure, but I think your soul gets released from your body, and is sent to either Heaven, or maybe to another body. Really depends on what you believe, I suppose.”

She appeared thoughtful.

“Ok, but what about your body?”

”It either gets buried, or sometimes people like to be cremated.”

After describing what cremation was, which led to a shocked “What the heck” sort of response, she asked; “So, what about someone’s soul?”

”The cool thing is, that no matter what happens to your body, your soul lives on. Just because your body is dead, it doesn’t mean that you really die forever. You can have a body that doesn’t work quite right, or become very old, or sick, but your soul is that part of you that doesn’t need to rely on the body in order to live. At least, that’s how I hope it all works.”

”So, my Dad’s soul is still alive?”

I reached over and grasped her hand in mine. “I think so. I hope so.”

”That’s cool.”

This conversation was so poignant, and became even more so less than 24 hours later when we received word that a close friend of our family’s had passed away around the same time that we were having our chat in the car. When I told Sasha what had happened, I reminded her of our talk, and how our loved one’s soul was not lost, even though her body was.

“She’s still around, just like your Dad is still around,” I told her in between tearful hugs, “Just think of the happy memories, and it’s like they’re right here.”

The conversation about the soul combined with the sudden loss of a friend got me thinking about why death is so hard to cope with, if in fact I hold fast to the belief that there has only been a loss of the body, but not of the essence of the person that occupied it.

Here’s what I managed to process.

When someone you love dies unexpectedly, it feels like a practical joke. Your brain hasn’t had time to process the loss, and so instead of going through the motions, there is a period of time where your feelings are in a state of limbo. Kind of numb, in disbelief, feeling as if at any moment, the person you lost will appear in the doorway or call you on the phone, laughing at the awesome prank they’ve pulled.

Tears come easily during this stage, the fat thick type, where your eyes just allow the floods to roll in but you feel stupid for crying them because surely this isn’t real.

Once the loss sinks in, then the anger comes on like a speeding train. Hard and heavy and solid in its intensity. Pinpointing what you’re angry at is difficult and varied. Angry at them for dying, angry at the illness that pulled them away, angry at God for allowing this to happen, angry that you will now have to live a life without them in it.

Grief begins to feel like a family member who has over-stayed their welcome during the holidays—always present and never giving you any time to relax and just be. Hours and hours of just feeling a discomfort that never settles.

And then, one day, you realize that it’s been hours since you thought about them. You’ll laugh for the first time at someone’s joke, and catch yourself because you allowed yourself to feel joy. The weight lifts the tiniest bit.

The old homage, “time heals all wounds” begins to make more sense. And while you may not be healed, and may not ever heal, the time will pass. Time does go on, minutes become hours, days become weeks, months become years. Before long, you’ll be casually doing some innocuous task like grocery shopping, and you’ll realize that today is the anniversary of the death. The anniversary is always hard, it just is. That date becomes synonymous with loss, and every year it will give you a sinking feeling in your gut. You won’t be healed, but your relationship with the grief will evolve.

The death of Sasha’s Dad has been a hard one to cope with. In many ways, I don’t think I’ll ever be through with the task of mentally and emotionally processing it. Admitting this is difficult for me, as I have a tendency to want to wrap things up quickly and neatly.

This December, will mark 11 years since my late husband died. I’m not angry with him anymore. In fact, time has allowed me to take a look at his death through another perspective. I realize now that he was not himself in those last few months, that the depths of his depression had altered his reality. I continue to mourn his loss, and regret not seeing the depression for what it was—an illness that ruled his life and dictated his choices.

It pierces my heart to know that our daughter is growing up without him. I wish I’d done more while he was alive to help him, but I didn’t. That is a regret that I’ll have for a lifetime. The best thing that I can do to honor his memory is to ensure that our daughter is being raised in a loving and caring environment. I am fiercely protective of her, and I know that’s what he would have wanted the most. To know that I was being the best mother I could, to our child. In this, I have not failed him. In her eyes, he still lives on. The passing of time only intensifies this fact.

Aside from the gift of a beautiful child, he left me with many gorgeous memories. The trips we took to Japan, Canada, and the beach in California. The Persian culture that he introduced me to, and which has given me a love of Iranian food, and literature.

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He encouraged me to complete my education, and to travel. Every time I hear the theme song of Friends, or hear Michael Jackson’s Thriller, two of his favorite American things (ok really, it was Jennifer Aniston that was his favorite, but you get my point), I can’t help but think of him. I can’t explain it, but I somehow know that he is around at times. It’s not a creepy thing to think about, in fact I’m glad that on some level, he understands that our daughter has grown into a smart and witty and gorgeous young lady. I hope that he has found peace—I think he has.

Time has softened the blow of his death to a moderate degree. I still think of him often, it’s hard not to considering that our daughter resembles him so much. The only difference is that now there is also understanding.

In the months preceding his death, we’d argued about things that had happened in the past, the things that we were going through in our present, and had fretted about the future. At some point, he stopped arguing with me about what would become; I now recognize that this was because he knew that there would be no point in arguing about a future that wouldn’t involve him.

I can’t help but tie in his passing when other people I love pass on. Call it a form of emotional PTSD, or muscle memory, or however you’d like to classify it. When loss occurs, the tie-in of memory can’t help but rear up like a coworker’s head over a cubicle (what former coworkers and I used to call ‘prairie-dogging’). And maybe just maybe this recollection is his soul whispering to me, “Remember me too!”

If this is true, just for his benefit I’d like to say that I do remember.

While time may not heal completely, it’s nice to know that the memories remain. I hope that one day, when I’m no longer here that others will remember me too.

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Life Altering Moments, Shhh. The Universe is Speaking

And Then Everything Changed.

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 said 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…

Hindsight is cruel and masochistic.

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.

The hardest part of this story for me to tell 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. 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-butt human being that we can all learn something from.

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Things gets hard. That’s life. That’s the reality of living in this world every single day.

Sometimes, when I’m having a bad 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.

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