Family

5 Weeks, 5 Days

I’ve been thinking about you a lot these past few weeks.

It’s not fair that you didn’t get a chance to live the life you deserved. I’m hoping that somewhere and somehow, you’ve been restored. Perhaps born into a magnificent and loving family, where you’ll grow up to be an amazing writer or a world-famous opera star.

I wanted you so badly. I didn’t even realize just how much, until you were no more.

You just left. Just like that. One day I’m dreaming of cribs and baby strollers, coming up with names for you with your Dad, and then the next—you were gone.

I’m trying to be okay with it. EVERYONE tells me that you weren’t ready. The time wasn’t right. There will be more chances. This is not the end…

I hear the words, but they don’t really stick.

I’m no idiot. I know we can try again and maybe in a few months or so, and we might. But, the pain of not having you stays with me. It may not be THE END, but it’s the end of your life, and that makes me incredibly sad.

I’m not sure if it makes even a small difference, but, I want you to know that I loved you. Even at the beginning stage that you were in, at 5 weeks and 5 days, you were loved. You are still loved. My heart is broken over losing you. 5 weeks and 5 days. That’s when my body decided that it was time to let you go. At 5 weeks and 5 days, every dream that I had for you was lost.

Losing you was no ‘small thing’. It was not insignificant. It was not a case of simply moving on. It was a tragic event, losing you, and your family is mourning you. Your Mom…is mourning you.

We are saddened that we never got a chance to see you, to hold you, to hug and kiss you. You didn’t get to appreciate how truly incredible your Dad is, or experience how loving he is. He’s a fun Dad, and you would have been the light in his life. I know this because I’ve seen how he is with your Sister. She thinks that your Dad hung the moon, and the two of them are peas in a pod, always joking and laughing and teasing each other. I know that had you lived, you would have made their duo a trio, and I would have been outnumbered.

I know that had you lived, you would have come to me with your aches and pains, fevers and knee-scrapes. I would have kissed all the boo-boos, and hugged away all the hurt.

The day after I initially discovered I was expecting you, I did what mothers do—I started to dream. Then I did what writers do, and wrote to you. When I composed this letter, I had envisioned presenting it to you on your 18th birthday, framed alongside our first family photo.

Looking back now, it seems strangely like foreshadowing. One of those divergent events that makes life feel as if every single one of us are pawns in a giant game of chess that is being played by a higher power.

Hi you.

It’s been 13 years since the last time I did this, so please allow me this moment for reflection.

When I got pregnant with your Sister, I was 25. My ankles didn’t swell like they do now, I wasn’t married (yet), and it all felt like a game of house. You’ll find out one day that game turned into something very different and real. But that is a chat for another day. Today, this is about you.

I had my suspicions. I rarely get motion sickness unless I’m on a cruise ship (which is a laugh in itself as your Daddy worked on one for something like a decade), and that one time that I discovered that I was going to have your Sister (It was on a road trip, back from Vegas. I got carsick and then ate an entire Arby’s value meal). So, when I got dizzy and nauseous on the train during my morning ride into work, I suspected something was up. Since your Dad and I had been trying to have you for well over two years however, I just figured that ‘you’ weren’t going to happen…and tried to push that train episode to the back of my mind, trying to believe that it was a touch of anemia or too much or too little coffee.

Then yesterday, I found myself driving to the pharmacy on the way home from work. I bought a 2-pack of EPT tests, and smuggled them home in my backpack. Quite randomly your Dad and Sister weren’t home, so I had the time and privacy to tuck away to the master bathroom and pee on this plastic stick that would reveal our fates. Almost immediately, that little plus sign showed up in the window, and I panicked. This. Was. Happening.

You are real.

Your Dad’s birthday is a few days away, and so, I took that plastic pregnancy positive stick, and put it in a Swarovski gift box (the same box that held the bracelet that I wore on my wedding day) and waited for your Dad to come home.

Ten minutes later, your Dad and Sister arrived home, having gone to the store grocery shopping. Your Dad was busy putting the groceries away and your Sister went to the kitchen table to do her homework. I was antsy. Your Dad was going on about the Internet being out or something like that. I didn’t hear him at all. I was bursting.

I grabbed the bags, and told him I needed to talk to him immediately upstairs. He asked if everything was all right, and I said it was, but that I wanted to give him a gift. As we were walking up the stairs, he said ‘Are you pregnant?’ He was joking, but I went silent for a moment then told him to be quiet.

Once we were in the bedroom, out of earshot of the kitchen, I presented him with the box. In my mind, I had prepared this speech, but only got about two words into it before I burst out crying.

He opened the box, and looked at the stick for a moment. Then he looked up at me. “Are you serious?” (Coincidentally, this was also my response when your Dad proposed to me. Apparently, we both expect the best things in life to be jokes, instead of believing right off the bat that good things can happen to good people.)

You have been a dream of your Dad’s for a very long time. He may have sailed around the world a few times over, may have had the best of everything in life, but he’s never had someone give him the gift of a life. It may be needless to say, but I’ll say it anyway; you are your Dad’s best birthday present, ever.

Your Sister is trying to act tough about the prospect of you, but she’ll come around. She loves me, and has already said that she’ll protect your Mama, so…that’s a good sign. She has also appointed herself as the official ‘belly guard’, vowing to smack away the hands of anyone who tries to touch my stomach without asking. I love that she has this insight and tenacity. Your Sister is one of the strongest people you will ever meet, and you are so incredibly lucky to have her in your corner.

When I was expecting your Sister, I wrote her a letter that included my wishes for her life. Many of those wishes were altered because of the fragility of living. So, I won’t do that for you now. Not because I don’t wish for things for your life, but because I know that life has its own way of spinning wishes. Here’s what I will say; I will do everything in my power to make sure you are healthy, and happy, and educated.

I’m so incredibly blessed to have you, and I will never take that for granted. Thanks for being mine, for being ours. You’re going to love being a DeMott.

While I do anticipate your arrival, I want you to take your time. Grow. Form those arms and legs, fingers and toes. Grow your heart, brain, lungs and other vital organs. Bake well. Once you’re ready to meet us, we will be waiting with open arms and tons of love to give.

I love you already.
Your Mom

A week after I wrote you that letter, you were gone. A loss I still feel months later.

Wherever you are, and I have to believe that you are somewhere out there in the celestial makeup; know that whoever gets to have you is incredibly lucky. No matter what happens, you will always be a part of me. I will always miss you, and I absolutely love you. Perhaps I’ll meet you in the next round of Chess.

Until then—xo, from your Mom.

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Death, Family, Life, Life Altering Moments, Memoir

Making Amends

It’s been 2 months since my last blog post.

It’s been one month since my Dad died.

My brain hasn’t wanted to focus on this fact, and yet has done a lot of focusing on this fact.

If that sounds confusing or convoluted, well, that’s accurate. If it sounds perfectly understandable, that’s also accurate, and I assume that you’ve been in the spot that I am currently in.

Here’s what I do know. Talking about it, helps. Talking about it, makes certain people uncomfortable. Talking about it with certain people makes me uncomfortable.

Trying to focus my thoughts, and put them all together to accurately portray what I’m feeling about the passing of my Dad, is quite possibly the most difficult thing I’ve ever tried to put into words.

Sometimes I am near-normal, and can make it through a day, or a few days without thinking of my Dad and getting teary-eyed. Then there are the days when I’m completely nuts, and I cry at the dentist’s office…not something I recommend. I mean, I really like my dentist, and I have to go back there eventually. Now, I feel as if I’ll have to avoid making small talk and eye-contact.

The story, and the memories are what remain now.

It took me a long time to decide what to say about my Dad. Do I share memories of him, of the times when I was a child and he would sneak me off to the 7-Eleven (or the ‘goodie store’ as we called it back then) to fill up a paper bag of candy and bring home? Do I go into the last months of his life, when I was trying to find a connection with him, one that had been lost years ago? One thing always seemed to road-block me. How do I talk about the relationship that I had with my Dad without sounding angry, or callous?

Before you read the rest of this post, here is what I want you to know.

I love my Dad.

This blog is about finding my truth. Stumbling through the memories, and feelings, and emotions to find the truth inside of me. To learn about myself, and connect with my journey in a way that is holistic, healing and honest.

In being true to myself, I have to be honest with myself as well. That means all the honesty…the good and the bad. Sometimes it’s a good road, nice and easy. Sometimes it’s rough, tangled, and tedious.

This story is a mixture of both.

October 8, 2015

George woke me up this morning.

Last night’s sleeping pill was causing confusion. Used to get the memories to stop rolling on like clothes tumbling in a dryer, and taken to make the constant flow of tears dry up. This tiny pill was now causing a short-term memory loss.

“I’ll take Sasha to school.”

Typically this sort of treat is met with an audible sign of contentment, as it meant 20 more minutes in bed and a round of coffee to enjoy before my brain had to be useful.

“She didn’t want to get out of bed, had the covers pulled up to her neck and everything.” He stroked my hair. “She said that there was someone in her room.”

My head jerked toward him. Toward the words, the idea, the realization. My Dad, who’d just been dancing with me at my wedding 6 months ago, and who had taken his last breaths of life the night before.

“You think it was your Dad? Saying goodbye?” His face registered sadness, and I could tell he was trying his best to tread lightly.

I had gotten the call around 11 pm the night before. Dad had passed, no real details yet, but the killer was known. Cancer.

He’d found out about the dark spots on his lungs in June, two months after he’d driven from Oklahoma to North Georgia, where he saw me get married. We had initially set the date for June, but moved it up to late-April to take better advantage of the antebellum garden blooms and fickle Southern springtime weather. We’d wanted to avoid the rain, and the stifling humidity.

I’d said it many times since, that I was glad we’d moved the date. Otherwise, my Dad wouldn’t have been able to be there. He was so proud on that day, so handsome. He bought a suit. He met some of my dearest friends. He met my in-laws who I knew he’d love, and with whom I knew he’d share a bond with. He got to know me a little bit better. He’d voiced a concern to me about dancing in front of our wedding guests during the Father/Daughter Dance, and had laughed when I told him, “Don’t worry Dad. No one will be looking at you.”

I hadn’t wanted to get out of bed, but I did. I fixed a cup of coffee, and as I waited for it to cool down a bit, I wandered upstairs. I know it may sound crazy, but I wanted to be in the last place where my Dad’s presence was felt. In Sasha’s bedroom.

My little girl’s bedroom was askew, as usual. Bed unmade. Socks everywhere. Pillows on the floor. Plush animals stuffed in every single corner.

I made her bed, carefully fluffing the pillows and placing the assortment of plush toys among them. I sat down on the mattress and closed my eyes. I thought of my Dad, and what his face looked like the last time I’d seen him. I thought about what he’d looked like when I was Sasha’s age. He had bright blue eyes, and dark brown hair that was almost black. He had one of those really boisterous ‘Southern’ laughs, the kind where the entire mouth opens to release sounds that can best be described as ‘unencumbered’. When he yawned, his hand would shake. He called me ‘baby girl’.

Suddenly I felt an overwhelming sense to talk directly to Dad. And so I did.

“Daddy…I want you to know that I’m not afraid. That I’m glad you chose to be here with Sasha.” I looked around at her stuffed animals, at her zebra print bedspread, at her pictures of Marilyn Monroe.

“I also want you to know that I’m sorry. I’m sorry that I didn’t come to see you one last time. I’m sorry that life got in the way of seeing you again.”

“You should know that I really do love you. And I’ve missed having you in my life over the years. No one has ever been ‘Dad’ to me, only you have.”

“I wish that I’d been more open with you about my feelings. I wish I’d told you that I was angry with you for not being in my life more. I regret that we didn’t talk about the distance between us.”

“But Dad, I need you to know that there wasn’t a single day where I wished for a different Dad. I always wanted you.”

“I know you probably won’t believe that, but it’s true. I never wanted someone richer, or smarter or more handsome. To me you were enough. I only wanted you to be there.”

At this point, with tears streaming down my face, I could only get out one more statement, but in my mind, the most important thing I wanted to say to him. “Dad. I forgive you.”

The second those words were released into the air, I felt lighter. As if I’d just been freed from a vice-grip like hug.

The best years with my Dad were from the ages of Birth-Twelve. For those first 12 years, I was ‘Daddy’s Little Girl’. He was my confidante, my friend, the person who I’d show my bad report cards to in lieu of showing them to my Mom who was always scarier regarding bad grades than my father was. Back in the mid-80’s the bad grades were attributed to my ‘daydreaming’ during class. This was before the term ‘creative’ was a misnomer, when simple classroom daydreaming wasn’t allowed, and the teacher’s solution for my ‘head in the clouds’ attitude was to move my desk away from the large window that faced the playground. It didn’t work of course, as being removed from the natural light just made me sleepy.

When my parents divorced for the first time, I was 8 or 9 years old. I was devastated and didn’t understand. I remember weeping so hard for my Dad, that it was almost a howl. I missed him being at home. I would cry so much and for such a long duration of time, that my Dad would eventually come by and pick me up, taking me back to his house with him where I would settle down and look forward to the next morning’s breakfast, when Dad and I would sit at a table in a cafe on Main Street and order doughy biscuits drowning in thick sausage gravy.

This happened so often that my Mom and Dad decided to ‘give it another shot’, and remarried for roughly a year. By the time I was 10, and the second marriage between my parents was nearing another divorce, I was ready for them to be separated. They were two entirely different human beings, who were more volatile together than they were apart. I would happily go and spend evenings with my Dad, or visit him at his flower shop. The naive child that I was, never realizing just how damaging relationships could be. A lesson I didn’t know then, but would discover with much frequency as I got older and began pursuing my own romances.

Shortly before my 13th birthday, my Mom and I moved to California, while my Dad stayed behind in Arkansas. My Mom had met someone and was getting remarried.

I loved California, but I missed my Dad.

For a few years we kept up the travel game. I’d fly out to see him in Arkansas, flying as an unaccompanied minor and wandering the airports alone (security was much more lax in the early-90’s). I’d stay for a large chunk of time, typically a month or two, settling into the spare bedroom at my Dad’s house which used to belong to my Great-Grandma before she passed away. The house was old but quirky, with floor heaters that would smell like gas when they first ignited, and with a giant yard that would become carpeted with pecans courtesy of the large trees that would grow and release new nuts every season.

Over the years, it became more difficult to get out to Dad’s house. He got remarried, and his new wife had 4 sons, all younger than me. The boys were rambunctious to say the least. I would come home after a summer spent in the South and my Mom would remark that I looked like a drowned rat. Stringy hair, tired eyes, bruises on my arms from the boys roughhousing. I had little time alone with my Dad because the house was always full, and then one day I heard that my stepmother had told my Dad that she wasn’t sure I should come visit for such long periods of time because ‘I bothered her sons.’

That statement, and the subsequent lack of communication left me in a lurch. I was 16 years old the last time that I spent any extended time in Arkansas. I waited for the invitation from my Dad regarding when I was to return, but it never came. Meanwhile, photos and stories of my Dad taking the boys out to the lake to go jet-skiing would trickle in. I’d like to say that after a while I stopped looking and listening, but I didn’t. I didn’t stop caring, or wishing that somehow my Dad would regard me in the same manner in which he regarded his stepchildren.

Years past, and life continued on. I spoke with my Dad when I could, but the interactions with him grew increasingly frustrating and painful. He constantly forgot what I did for a living, and when I would tell him, he would either tell me that I should have never given up modeling, or that I should have married Bill Gates.

Three things to note about the above. I haven’t modeled since I was about 19 years old, and also…Bill Gates. I’m sure he’s a nice person, but I think he’s great with Melinda. No hard feelings there, Bill, I’m sure. Finally, and most importantly…this was a pain point for me until just recently. I have been a writer of some sort since I was in High School, when I discovered that I had a knack for words, and a penchant for disappearing into a world filled with promises of escape, of excitement, of darkness and light. I’ve never truly desired to be anything else, and so knowing that my Dad took little or no interest in that part of me…hurt.

As time went on, and my life changed, I spoke to my Dad less and less. I was dealing with some deeply personal things, such as the death of my husband, and my child becoming ill, that nearly sent me over the edge. All through those difficult times, I wanted my Dad to be the sort of parent that I could lean on. Every time, I was disappointed. I suppose it’s true that this caused me to become more self-reliant. What it also caused, was for me to be so self-reliant that I distrusted nearly every single person in my life, especially men. This may sound cliche, but when I discovered the pattern, it made perfect sense. The first man in a woman’s life is her Dad. Every single relationship thereafter, is a layer built upon that foundation. What this meant for me, was that every man would eventually lose interest and leave. Self-fulfilling prophecy up until now, as every single one has. Does this make a marriage difficult? You bet your ass it does.

My Dad spent a lot of time considering people who didn’t consider him quite as much. In the end, at his funeral, his three biological children showed. We were also the ones who were there by his side, making decisions regarding his healthcare and making the funeral arrangements. The kids who he spent years considering and preferring, didn’t show.

If it sounds as if I’m bitter about my Dad, well, yes. In a way, I suppose I am. However, when I uttered those words of forgiveness in the middle of Sasha’s room, I meant them. I think I understand now, the type of person that my Dad was. In all honesty, I don’t feel as if he was ever trying to disassociate himself with me. Instead, I feel that he was trying to please the people in his life, who were in his life on a daily basis. That was my Dad…he considered other people’s feelings in order to be the ultimate ‘good guy’, the one who would always give, the one who people would hold in high regard and respect. Unfortunately, my Dad was also the type of person who made bad choices, and losing out on a life filled with his children, was one of those bad choices.

One of the last ‘real’ conversations I had with my Dad, was also one of the first ‘real’ conversations I’d had.

The night before my 38th birthday, my Dad called me. I’d only found out a few days prior that his medical tests had come back confirming the Cancer had spread to nearly every single organ, as well as to the bones and lymph nodes. Dad had called to wish me a Happy Birthday, and we ended up talking for nearly 2 hours, which is the longest phone conversation I think I’d ever had with him. For the first time in a very long time, my Dad told me that he was proud of me. Proud of the mother I am to Sasha, proud of the way that I’m raising her. He then said something that I never expected. “Shanna, you’ve turned into this magnificent person. In spite of having had me as a father.”

I cried. Those words hit me so deeply in the middle of my chest. I think mostly because I never thought that my Dad gave me much consideration, especially enough to be proud of me for being a good Mom. Never mind the fact that my Dad hadn’t said many heartfelt words to me since I was a child, minus the random comment on Facebook. I definitely cannot recall him ever calling me magnificent. What a powerful word…magnificent. That’s not really a word you hear very often, is it? Especially in regard to another person, and here it was being uttered to me, by the one man who I always wanted to regard me as just that…Magnificent.

That left me with a choice. I could either chose to focus on the pain over time we’d lost, or I could  chose to acknowledge the pain, forgive the time lost, and move forward. I chose to move forward. Forgiveness just feels better. Healing, albeit a slow process at times, just seems like the healthier choice.

This past Saturday marked a month since my Dad took his last breath, and passed away into whatever comes after this life. He was ready to go, to join his own Mom and Dad, and to see my oldest brother who passed away years before I was born. In the last few months, he attempted to make peace with several people in his life, including myself. I suppose that’s what you do when life is slipping away, especially when you know that your time is coming. You chose to make amends. That’s what my Dad did. He told me that he loved me, told me he was proud, told me that he thought I was magnificent. Hell, he even spoke to my Mom about the days when they were married, laughed about memories they shared, and yes, attempted to have it out with her over emotional scars I suspect hadn’t completely healed.

Whatever mistakes, or missteps, or stumbles of his own that he’d made, my Dad wanted to make amends when it came down to it. And whether it’s because he didn’t want to carry the burden of words not said with him, or because he didn’t want me to carry them…in the end, I know that my Dad, loved me.

The last time that I heard my Dad’s voice, was as I was driving to pick up my daughter from school. He called and we chatted for a half-hour about his health, and the roommates he had in the hospice. He sounded more alert than he had in weeks. I drove around the block a few times, just to keep him on the phone for a bit longer. When I finally had to go, I told him three times that I loved him. I just felt the need to say it multiple times. The last thing he said to me was, “I love you too baby girl.”

Regrets. Do I have them? In spades.

I wish I’d been braver, earlier. If I’d only had the boldness to say to my Dad what I was feeling, sooner…I might have had more time to get closer to him. To discover why my Dad made the choices he did. Maybe I would have been fortunate enough to see a completely different side of him.

Here’s what I feel contented about. That I was able to dance with my Dad at my wedding. That my brother and sister and I were able to have one last family photo together. That he made amends with so many people, before the road had run out…including me. That I was able to tell my Dad three more times, that I loved him. That I was able to hear him say he loved me in return.

At the end of his life, many people told me just how much they loved him, and regarded him as a kind man. I was happy that several of my closest friends were able to spend a little bit of time with him during my wedding day, getting the chance to know this man that up until that day, had simply been a picture on my wall.

Dad, you are and will always be, profoundly missed. The years of your absence in my daily life left me a bit harder emotionally than I may have been had you been a constant, but it also made me who I am today. I’m strong, Dad. Your baby girl is strong. Your baby girl loves. Your baby girl…is okay, or at the very least, is on the road to being okay. I’m glad that you were mine, and that I was yours. I’m choosing to predominately focus on the good memories of you, the ones that make me feel peaceful. The summers at your house, the way your blue eyes and dark hair used to remind me of Elvis, the picture that you kept on your computer until forever, of a 6-year old me. Imperfect as we were/are, I know that I was loved, and I hope you knew I loved you, too.

Until we meet in the hereafter,

Your Baby Girl

Dad Dance
Dad
Dad and Me
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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.

kiss concert

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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