Mistakes are hard enough to make, but when those mistakes are followed by a stern reprimand, ouch. That’s when the embarrassment, the hurt, and sometimes even the anger begin to swirl. Over the course of my life, I’ve found myself on the receiving end of a reprimand more than I care to count. Admonishments that are especially shame-inducing are those that are carried out in front of others. I remember being reprimanded in my high school Spanish class when I was a Freshman. The teacher firmly scolded me in front of all of my peers, including the resident mean girls who sat smirking at my misery.
In the Bible, there is a story about Mary of Bethany, who is reprimanded by several men who find fault in her actions. The story says that Mary goes to the home of Simon, who is having a sort of dinner party for several others, including Jesus. While the men are eating, she takes this alabaster jar which is filled with expensive perfume oil, breaks it apart, and anoints the head of Jesus. Immediately the men begin to reprimand and scorn her in front of everyone, including Jesus! Can you imagine how shocking that must have been?
If you can’t imagine it, let me try to further paint a picture for you, to show you just how important this action was—not just to her, but to Jesus, and to the events that would follow.
This was no ordinary dinner. It was taking place just two days before Jesus would be crucified. The house was no accident either, as it took place at the home of Simon who was a former leper, who because of this would have (at least at the time of his leprosy) been labeled as an outcast. The Mary in question is the sister of both Martha, and Lazarus (aka: the man who Jesus raised from the dead). Although Mary is the sister of the man whom Jesus has performed an amazing miracle on, and whom we can presume he felt affection for considering he wept over Lazarus’ body, she is known as ‘a sinful woman’ (Luke 7:37) Not only are the circumstances, timing, environment, and guestlist impressive to note, but the act of breaking apart the jar to anoint with perfume was spectacular as well.
Anointing is another way that historically has meant that we are set apart as holy to God. Not only that, but the anointing of the head indicates an act of honoring, or of consecrating a body for burial. With this act, Mary of Bethany has set Jesus apart as holy, she’s honored Him, and she’s consecrated his body for his impending death and subsequent burial. And yet, she is publicly scorned for it.
The reasons that the men give for their outburst is that instead of ‘wasting’ the perfume on Jesus, she could have instead ‘sold it for almost a year’s wages and given money to the poor’. (Mark 14:4-5) Their argument could be seen as valid, if you understand a few things. It was a highly expensive sort of perfume oil, taken from a plant called Nard. This plant only grows in the Himalayas, which is a hike from Israel (almost 3,000 miles from the former region of Bethany, which is now known as the West Bank). Not only is it indigenous to a country thousands of miles in distance, but the plant also grows at an altitude of at least 9000 feet. It’s not a small trip to the corner store, to obtain more, you know?
So when our girl Mary breaks the alabaster container, and pours out this costly and precious oil, to coat Jesus in a scent that is described as a deep forest smell, the men at the party can’t believe what they’re seeing. They’re upset! That oil cost almost a year’s worth of wages! What in the world were you thinking, Mary?
And what does Jesus do while they’re reprimanding her and telling her just how expensive that container of perfume was? He shuts them down, and tells them bluntly to “Leave her alone,” that what Mary has done is to prepare Him for burial. He goes even further, and tells them that she will be remembered for what she’s done.
“Leave her alone,” said Jesus. “Why are you bothering her? She has done a beautiful thing to me. 7 The poor you will always have with you, and you can help them any time you want. But you will not always have me. 8 She did what she could. She poured perfume on my body beforehand to prepare for my burial. 9 Truly I tell you, wherever the gospel is preached throughout the world, what she has done will also be told, in memory of her.”Mark 14:6-9
And here we are today, learning about the beauty in the breaking of that container. The expensive and extravagant perfume was not wasted. In the breaking, Mary was honoring Jesus. In the breaking, she was shown incredible mercy by the Savior. In the breaking, Mary has not been forgotten. In the breaking, she played an important role in what would happen to Jesus just two days after she’d anointed Him.
What I would have given in that high school Spanish class, for a Savior to come to my defense. What I would have given to have been that spectacular to the Savior of the world, even though I’d been publicly admonished and according to the world’s view was guilty of sin.
The beauty in the breaking is something that we can all learn from. In order to prepare for something greater, we need to break the container. Release what’s precious, give it over to the Savior…and if we should come against admonishment, allow the one who saves to save us.
There is a term used to describe those who are in a role that they internally do not feel capable of, even if they are. It’s called Imposter Syndrome, and it’s more than just feelings of passing self-doubt. Imposter Syndrome is feeling like at any moment, you will be found out, and exposed as a fraud. Imagine that, a fraud! That is some extreme internal drama.
I feel a bit like a fraud. In truth, no matter which way I seem to go, I feel this way.
Do I stay in the world that I’ve been attempting to exist in, and hide the fact that in my home we pray, we blast worship music, we read daily devotionals? On the other side of this, do I completely come out of my shell and tell the world that I do in fact, love Jesus, that I feel all blessings come from a supernatural source, and in doing so lose the respect of people who aren’t religious (some who are so turned off by the mere whiff of Christianity, that they immediately scoff)?
I mean. Yeah. That second part. That’s what I am choosing.
This is not a decision I’ve come to lightly. I’ve been so wishy-washy with my faith in the past, that I’m surprised God hasn’t completely turned His back on me. I’ve lived such a worldly life, that I’ve been hesitant to make this change in my life public because, well, things like Google exist. My first page of Google results will show you that I’m not perfect, in my own words! The good thing about writing this blog, from my perspective anyway, is that it’s meant to show how imperfect we are, but that we are loved anyway. We make mistakes (daily!) and are loved anyway. We say regretful things, and are loved anyway. We do shameful things, and are loved anyway. You get my point?
The voice inside my head tells me that I am an imposter for doing this, for taking this blog in a direction that highlights my faith, because of who I’ve been in my past. That same voice tells me that every post will be scrutinized at a level that will cause discomfort. That I’ll be ostracised for speaking out in such a public way. That I’ll immediately have no friends (aside from the handful I know from church, such as the ladies from my bible study group whom I love dearly). That my coworkers will poke fun, and that even my job will be threatened. Future opportunities may be jeopardized, because who wants to hire a Christian blogger?
I also feel as if any argument that may come from this, I’ve already had…with myself.
I’m not a squeaky clean Christian. But, you know who else weren’t squeaky clean Christians? The Apostles. The Bible calls them “unschooled, ordinary men”, only qualified by the fact that they chose to be with Jesus. Already, I feel as if I’m at least on par with that. I’m choosing the same thing, to be with Jesus, and see where He leads.
In time, the feelings of inadequacy over going public with my faith may pass, I assume that they will. My inner critic may quiet down, or will at least get on board with what I’m doing, and become a constructive critic instead of telling me that I’m an imposter. Regardless, I’m still choosing to be with Jesus. Publically. Bravely.
“I’ve commanded you to be brave and strong, haven’t I? Don’t be alarmed or terrified, because the Lord your God is with you wherever you go.”
I get asked the same question every time I tell someone that I’ve started taking improv classes, “What made you do that?”.
It’s a seemingly innocuous question, that I’m sure people are expecting a simple answer to. Most of the time, I do give the simple answer, “Just wanted to try something new.” But, that’s not the total truth of it.
The truth is a bit more complex than that. First off, I wanted to break out of my introverted world in an attempt to gain more self-assuredness and confidence.
My life had become so comfortable that it bordered on boring, and I figured that it was time to find a hobby.
Also, I made the decision to end my marriage last year. My ex isn’t a bad guy, we just weren’t existing on the same wavelength as far as goals and overall responsibilities were concerned. (This is an entirely different topic that I may cover in the future, but for now, let’s get back to improv.) I was a year into the separation, had just filed for divorce, and I guess I was feeling a bit like a cliche. You know, newly single, trying to “rediscover myself”, blah, blah. A scene from the Julia Roberts/Richard Gere movie, Runaway Bride kept popping up in my mind.
Richard Gere plays a reporter named Ike who throughout the movie interviews Maggie’s (Julia Roberts) exes, to gather information as to why she always runs away at the altar. One question he constantly asks is “How did she like her eggs?”, to which each of the jilted men would reply with a type of egg, ‘scrambled’, ‘poached’, ‘egg whites only’, with the added response of ‘just like me’. The point being that Maggie had lost her own identity along the way, down to knowing what her own preference of eggs was. She had to separate from the crutch of a relationship, to discover that she likes Eggs Benedict.
Improv for me fell into the egg-preference category. It was something that I’d always been interested in trying, but never did because it didn’t fit in with the person I was trying to be for someone else.
It took a year of being by myself, without dating a single person, to realize that I had the power in me to Google and subsequently sign up for a six-week improv course. While driving to the first class, I almost turned around and went home…several times. My head was playing games with me, repeating my ex’s voice on a loop stating a sarcastic, “Who told you that you should be a comedian?” over and over again. This was a phrase he would often say to me if I made a joke, or tried to be funny. I know he didn’t mean for the words to hurt, but they did.
To my utter relief, the instructor told us that we should not focus on being funny, that we should instead focus on releasing whatever words or actions we needed to. That small phrase made a huge impact on me. Over the next 2 hours, I immersed myself in the improv experience. I walked around the performance space pretending to be a zombie, said whatever popped into my head during scene work, stumbled over my words, giggled at my own awkwardness, and it was all fine. All of it. No one got hurt, a few laughs were had, and I’d made the first step out of my comfort zone. I met some very cool people, all of whom were there for their own reasons, all of whom were fantastic. On the drive home, I felt something that I hadn’t in a very long time, elation and pride in myself.
Six weeks later, I held a certificate in my hand stating that I had completed Level I, and was ready to continue on to Level II…which I have. If I keep going, I’ll have the chance to do something I literally NEVER thought I’d do—perform in front of an audience.
It’s been great to release what I’ve held inside of me for so long, through improv. Do I look like a weirdo sometimes? Yeah. Am I sometimes funny while doing it? Occasionally. Am I finding out who I am? You betcha.
Turns out, I like my eggs baked in a muffin tin with bacon (or smoked salmon), tomato, red onion, and cheese. Isn’t that funny?
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.”
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.
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.
I’ve been thinking a lot about the past. This is difficult for me to admit on a certain level, because I’ve prided myself on being a person who takes life, and all those things that come with it, on a case by case (day by day) basis.
But the nature of what I do, writing memoir, and writing this blog, is to delve into the past. The more I write about it, the more I think about it. The more I think about it, the more the memories come flooding back…often at midnight when I’m just trying to get some sleep.
The past can be a kind reflection; that trip to New Zealand where I ate green-lipped mussels the size of my hand, or that time when I was rocking my precious baby girl to sleep after a feeding and the sunlight poured in and settled on her fuzzy little head causing her to resemble a cherub.
On the other side of this are the memories I’m not proud of. The lies I’ve told, the hurt I’ve caused, the embarrassing moments that I’d rather forget (like that time I tore my skirt on an old chair in front of my entire 9th grade Spanish class).
As much as I cringe at some of the choices I’ve made along the way, agonize over the things I’ve said, or feel as if I never, ever, ever want to talk about the embarrassing moments, I realize that everything has been a roadmap to becoming who I am (and will become).
I’ve learned from my mistakes—granted, sometimes that lesson had to be learned a few times for it to “really sink in”. What’s more, I look at my mistakes in a different way now. Each one has been a learning tool, and when I stop and think about the past, in several circumstances, it almost feels as if I’m examining the life of a girl I used to know. That reflection is priceless, and gives me peace of mind to know that those mistakes I made were just that—mistakes, made by a woman who was still learning.
And P.S., everyone makes mistakes. Everyone. Your boss, your parents, the ‘holier than thou’ mom at school who can’t understand why you aren’t “more involved”. Everyone.
Thinking about the past can also be great for inspiration. As a writer, I reflect on my past to fill in the blanks of a story, to glean ideas for blog posts (Hey!), and to use those memories to start a discussion that helps others find an emotional connection that they might need to start their own healing. WHEW. Yes. I use my reflections to write stories for people in need—so they can find an emotional outlet and begin to heal.
Speaking of; I can’t tell you how many times I’ve heard people tell me that they feel as if they can’t complain to me, because of what I’ve been through in life. First of all, thanks? Secondly, no! I enjoy hearing other people’s stories! Honestly, it’s hearing what others are going through that makes me feel like part of the fabric of humanity.
The sharing of experiences provides a great perspective on life. So, if my journey through the fires of parenthood gives you some perspective on what you’re going through, then cool. I can guarantee that there will be times when I look at what you’re going through and think about how blessed I am, and that’s fine. Sweet, sweet perspective.
Sometimes I think about the past to remind myself just how far I’ve come, and to remind myself that I still have a long way to go. That book I have been thinking about for years, but have yet to complete. The weight I want to lose. The promise of being more in touch with family and friends.
I’m making headway with these goals, and thinking about the past struggles and triumphs helps keep me going. This is especially true in the case of long-term goals, which have a way of becoming stagnant (boring). To help overcome this, I set smaller goals along the way, that are reflective of the larger goal. Such as:
Writing a book —> Taking writing classes that force me to have deadlines.
Lose weight—> Reduce carb-heavy foods and learn to love (healthy) salad dressing.
More in touch with family and friends—> Taking the time for a girls day out, and talking to my Mom more frequently.
I realize that thinking about the past might bring up a large elephant in the room for some. What about when these memory-dives involve past relationships? Well, I think that all of the above points apply. If you’re being real about the mistakes made (yours too, not just theirs), and you’re using the past to examine what went wrong, as well as what went right, then you’re fine. I’ve found that looking back can help me to move forward, I can admit that now. And, I’m using what mistakes I made in the past to course correct in my present. Finally, I can look back and give myself permission to forgive and let go. That doesn’t mean that I forget what has happened, quite the opposite. But, I can forgive, and that gives me more freedom than holding on to any past hurt that may exist.
If you are ready to examine your own past, here’s a writing exercise that I’ve used to bring up some past memories.
Look at the question below, and write about the first thing that comes to your mind. (If you feel so inclined, share with me in the comments! I’d love to see where your reflections have taken you.)
Think about a time in your life when you traveled outside of your comfort zone. It could be to another state or country, or it could be across the cafeteria to sit with a stranger.
I heard this quote in church on Easter Sunday. It was crowded, every seat filled at Elevation Church in Charlotte, North Carolina, with every kind of church goer; the ‘never misses a service’ the ‘only attends on Easter and Christmas’ and then me, along with my daughter, the ‘we try to make it every Sunday, but it’s more like every other Sunday, or every other, other Sunday’.
“The starting point of faith is fear.”
The pastor of Elevation is Steven Furtick. He’s not your typical church leader. He is handsome, young, and buff. He’s also passionate about what he preaches. This particular sermon was about finding the way to grace through our failures.
If I look back on all of the things that have ever worked out in my life, those things that I am proud of, those elements that make me who I am…the starting point of all of those times has been fear. Fear of failing, fear of changing, fear of the new, the different, the unknown, the fall. But at each one of these points, I pushed myself to go forward.
When I got pregnant with my daughter, I was afraid of being a mother. Actually, I was afraid of failing as a mother. I didn’t know if I could nourish a child in the way that it should be nourished; soul, body, and mind. Would I be a positive and guiding force in her life? Would I know what to do if she got sick? Would she grow to be a decent human being with me as her role model?
When I moved to Las Vegas after living most of my life in Southern California, to pursue a relationship, I was afraid. Afraid of leaping into love, afraid of trusting another person, afraid of giving up the safety of what I’d always known.
When that relationship ended, I was afraid of moving on and being a single mother again. I was afraid of finding a home that I could afford, and of taking care of not only my daughter’s school and extracurricular activities, but her medical needs too, while holding down a full-time job. No safety net, no relief if something went wrong.
When I found love again, this time with the man who would become my husband, I was incredibly frightened. Would this person break our hearts? Would he let us down? Would I be able to let go and let him love us? Would I be able to lean on him as an equal partner?
And when we moved, this time as a family, cross-country to North Carolina. I was afraid of starting all over again. Afraid of working for a huge corporation, in the financial industry, afraid of being a failure. It was frightening to think of how we would all make new friends, how I would find the right doctors for my daughter, how she would transition from a small private school to a large public one. How our careers would play out in this new city.
The point to all of this is, that every single time I’d been afraid—I was actually positioning myself to move forward. This forward momentum only worked because I had faith that it would work. I believed, every time, that what lay on the other side of fear was freedom.
I’m sure that throughout my journey, there have been naysayers who have scoffed at me behind my back. I’m sure that at times, my journey hasn’t made sense from the outside looking in.
I’m also sure that it doesn’t matter what others think of my journey. It’s mine to take. If I fall, and I do fall sometimes, I know that I’ll get back up and keep going. My daughter shares this mentality. She’s smart and kind and compassionate. She’s a better version of the vision of who I dreamed she’d be. I think it has actually helped that she’s seen me fearful, seen me fall, and watched me move forward in faith. And that, isn’t a failure. It’s a bona-fide success.
The migraines are new. This time they hung around for a week like a wet cough that refuses to run its course. Pounding, right in the middle of her forehead. The pain so intense that while I couldn’t feel them for myself, I could see the effects of them on her face, in her mannerisms, in the way that she just wanted to lie down in our guest room with the blackout curtains drawn and the lights out. She didn’t even want to look at her iPad, her technology she calls it, because the blue-light was just too much to bear. A week without it. Like a self-imposed punishment befitting a teenage girl. I would slink into the room every hour just to make sure she was all right.
I’ve gotten used to doing that, a mother’s habit. I slink in, make sure she’s still breathing, placing my hand on her forehead to make sure she’s not feverish, checking the water bottle on the bedside table. It’s the habits that help keep me sane when she’s not herself. Her eyes are so dark. Like someone has taken a permanent marker and drawn in crescents under each socket. It scares me to see them this way. Reminds me of horrible memories from years past, horrific flashbacks of swirling red lights and excruciatingly loud sirens. There was always that one car who would try to outrun the rapidly approaching ambulance, would burn right through a left turn, forcing the ambulance driver to slow down and forcing me to scream and throw my middle fingers up in the air at the utter jackassery of the self-absorbed driver who forced an emergency vehicle with a seizing child in the back to slow down just so they could make the light. Yeah. We’re all in a hurry, aren’t we? And I’m so sure that you’re on your way to something way more important than the emergency room.
She finally slept last night. A great sign. She thought that her dad visited her in the darkened guest room a couple of days ago. Said that she sensed his presence in the room. That scared me since she wasn’t talking about my husband, who she also calls dad. But since she was talking about her biological father, who died a week before Christmas 10 years ago. I don’t want her getting visits from dead relatives when she’s so sick, or ever. But especially when I’m so worried that the headaches could be indicative of something more serious than migraines. I actually walked out of the room and told ‘her dad’ that I was perfectly capable of dealing with my kid, and that he could politely and quietly go away now. NOW. GO. I got this…k, bye.
Today she woke up and felt better. On day 7, when we were preparing to call the doctor to have her admitted to the hospital. I’d asked for prayers, had prayed over her myself. I felt a calm wash over me and over the room, and today…she’s better. I’m better.
It seems like such a small thing, a prayer. But, when fear is taking hold, and the only thing you have left is hope and an emergency plan, I figure that lifting up a prayer really doesn’t hurt. Hope is such a funny thing to me. It used to be just a word, a sort of tossed around phrase, like when people use the #blessed about their morning bagel. Hope, and for that matter, blessed, have taken on a new meaning for me.
This morning, her eyes were brighter than they’d been in days. She smiled at me when I gave her a flurry of forehead kisses this morning. She knows she’s loved. I know I’m blessed.
We’ll start this weekend with a quiet calm. No brain on fire, no sharpie’d undereye, and an episode or two of Gilmore Girls.
“Mom, would you be upset if I eloped?”
“I wouldn’t be thrilled. I mean, I’d want to be there to support you and share that moment with you.”
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.
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.
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.
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.
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.
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.