Being a bereaved parent is lonely. We’ve been through what most people believe is one of the worst things anyone can experience. We are permanently, irrevocably changed. We’re trying to figure out who we are now that we aren’t the us of Before.
We are parents and always will be.
But when someone asks in casual conversation “How many children do you have?” what was once an easy question is now loaded with considerations.
I find myself doing quick calculations in that moment:
What is the likelihood I will ever see this person again?
Do I have any inkling of how they would respond to the full truth?
Is this just polite small talk?
If I don’t think I’ll see them again, if they seem uninterested, if this is standing-in-line just-passing-the-time talk, or if anything seems unsure, I usually keep things very simple.
“Three” I say. “Two boys and a girl.”
If this could the beginning of a longer or deeper relationship, the person seems genuinely interested and willing to stick around to talk awhile, or something just seems sympathetic about them, I’ll tell them the truth.
“Four” I’ll say. “Two boys and two girls, but our oldest girl passed away last year.”
But my calculations can be wrong.
And there’s no conversation killer quite like death.
Sometimes we all need a little bit of advice now and then. Do you have a burning question you’d like to ask us?
Do it! Ask the band.
The Band, I’m in a terrible funk right now.
I’m having some kind of weird mid-life crisis, though I don’t know if being just shy of thirty counts as “mid.” Either way, my main problem is that I just want to be left the hell alone. Of course, wanting to be left alone and actually being left alone are two completely different things, and the sad truth is that I will never be left alone.
It’s not due to the bipolar depression, although I know damn well it’s a contributing factor on my worse days; it’s simply because I’m tired. I’m tired of going through the motions of my daily life, getting up early to tend to all manner of things. I’m tired of everyone in my household demanding something from me at all times, whether it’s my daughters, who want/need all of my attention since they are both so young, or my husband wanting to constantly have sex, or even the damn cat for bitching about not having food even though his food bowl is completely full. (The cat is an idiot.)
I have no friends – all of them live in a different state because we moved away 2 years ago in order for my husband to pursue a new job opportunity. We have family not too far from us, but we barely see them as it is, so they wouldn’t dare step in and watch the kids in order for me to get the hell away for a little while.
A few days ago, one of my friends told me to come visit her so we could go on a bender, and to be honest, I would fucking LOVE to! It would be an opportunity to get away and have some fun for once, since all of my hobbies have gone to shit since becoming a stay-at home-mum five years ago. However, even if we still lived close by, that bender would never happen because my husband, while a great guy, is insecure as fuck, and at times errs on the possessive side of things. He would be paranoid about me cheating on him even though I’ve been a million percent faithful.
Pretty much all of my time I try to reach some semblance of reprieve by burying myself in my laptop: reading the news, blogs, messaging friends or (my secret shame) reading and writing fan fiction. (Now The Band knows my horrible secret!) Sometimes I listen to music. Music is a major way for me to unwind, and the advent of Spotify has been very useful since I can listen to stuff that I’m too cheap to purchase via iTunes. My husband thinks that I have some kind of bizarre internet addiction, but that’s so far from the truth.
I know this is a form of escapism.
I’m grumpy, I’m exhausted, and I’m just flat-out sick of everything.
This is my dilemma. I just want my family to back the shit off, but at the same time, it makes me feel like a terrible person. I don’t want to play with the kids. I don’t want to engage in “sexy time.” I don’t want to do the goddamn laundry or feed the goddamn cat.
During the month of August, Band Back Together is going to be publishing posts about loss and grief. These losses can be perceived or real as we know that loss is universal. We welcome you to share the stories of what and who you’ve lost – parents, children, animals, sisters, brothers. Please share your posts with us by clicking here.
This morning on the way into town, I had a flashback of a phone call. A phone call I’d had with hospice, seven months ago.
I remember it well. I was in the back room at my parents house where I’d been staying for the last week or so to help take care of my mom. She was sick. She had taken a turn for the worse. She’d had Stage 4 Colon Cancer for four years. It had been four years of fighting: first chemo and surgeries, and then natural medicine and a special diet.
She’d lived far longer than the doctors thought possible. She’d outlived the projections of every website and message board I’d visited in my obsessive need to understand what we were up against. Her CEA (tumor marker) numbers stayed low and nothing showed up in her monthly exams for a long time.
Then, the numbers started to creep up. After three years of nothing, they’d found a new spot on her liver.
It only took four months to go from finding that small spot to being in that back room on the phone with a lady from hospice.
Mom had been getting intravenous fluids the week before. As weak as she was, we would help her get dressed, get her to the car, one of us on each side to keep her from falling, drive her to the hospital and wait the two to three hours to get the fluids and then repeat the process to get her home.
We’d done this every day for a week, but the benefits of the fluids were starting to be countered by the difficulty of the journey. She was getting too sick to make the trip anymore. We’d talked to her doctor, the hospital, to anyone we could think of to figure out how to get the fluids to come to her. We felt certain there had to be a traveling nurse, or someone else who could administer the fluids. If the problem was that insurance or Medicare wouldn’t cover the cost, we were all more than willing to pay for it.
We just needed someone willing to do it.
When I asked the lady from hospice if that was something she could help us with, instead of answering my question, she asked some of her own: What did I think was really going on? What did I think the fluids were going to do for my mom? Would it be better to keep her going as long as we could, as she got sicker and sicker? Were we doing this for her, or were we doing this for ourselves?
We discussed that Mom’s body wasn’t benefiting from the fluids as well as we’d hoped. Her liver and kidneys had already begun to shut down, and we knew she was experiencing fluid retention. In fact, the fluids we were fighting so desperately for may have been doing more harm than good.
I had one of those moments when the blood thunders through your ears, the air is sucked from your lungs, and time slows down.
She was so sick. Every day she was getting sicker. Of course we knew she was going to die. But until that moment, I’d been in fight mode.
This was the first moment I realized the fight was really over.
The lady on the other end of the phone waited until I stopped crying, and we made arrangements for her to come over to talk to the rest of the family. We’d been fighting this disease aggressively for over four years. It was going to take some professional help to transition from that all-consuming fight to helping our Mom let go and…die.
She came over and we all gathered around the couch where Mom was laying, and we talked about the fact that she really was dying.
It was singularly the saddest discussion I’ve ever been a participant in. Everyone left my sister and I alone with Mom. We talked about how this was really it. We told her how much we loved her, how we would be there with her through it all, and how we would be there to see her on the other side.
I wonder how she felt at that moment.
I think about that moment a lot. I regret that moment sometimes. I wish we’d stayed in denial about her death so we’d never have had that discussion. Once it was out there, it seemed like any fight she had went away. She was ready for it to be over.
My sister, my grown niece and nephew, my aunt and I all took shifts staying with her and Dad. At first we gently tried to get her to eat and drink, but in retrospect that may have been a lingering need to fight for her life. Eventually, even that stopped.
I’d stay for two days, then leave for one or two. I would go to work on the days I was away. Work became a sanctuary where my mind was otherwise occupied. As I drove the hour and a half back to my parents, I felt the heaviness increase until I had to drag myself up the steps and into their house.
We’d brought a hospital bed into their living room so I’d see her the minute I opened the door. Every time I opened that door, I wanted to recoil in horror. Our mom was laying in that bed dying! It couldn’t have felt more surreal.
By then, she was drugged and asleep, and unable to talk much even while awake. It was a living nightmare.
A strange numb detachment descended upon me. I’ve never been like that my whole life. It was like my brain just shut parts of itself off. I felt made of stone.
We held her hand. We brushed the hair out of her face. We put chapstick on her lips and swabs of water in her mouth. We told her how much we loved her over and over and told her we were going to be okay. We promised that we would never stop talking about her to our kids so they would always remember her. We talked about our hope for the future when we would all be together again and she would be healthy.
I hope that she felt some comfort from us being there with her. I know she was scared; her brow and face would be scrunched up with anxiety and pain, even though she couldn’t voice it. The best we could do was give her the shots of pain and anxiety medication that hospice had left for her.
The last time I saw her alive, the truth is, I knew it would be the last time.
I should have stayed. I should have stayed. I should have stayed.
But when my niece came over for her shift, I left. To escape the horror, the impending doom, and the despair, I went back to my house. The next morning, I talked to my niece and she told me that Mom’s hands were getting colder, and I knew I should go back. I knew the signs of impending death by heart; I’d read them over and over in hopes of preparing myself.
But I didn’t go back. I went to work instead. My sister called me at work to let me know she was at Mom’s. She held the phone to Mom’s ear so I could tell her that I love her. She couldn’t talk, but I could hear her breathing loud in an attempt (I choose to believe this) to communicate with me. My sister then called my brother and they had a similar interaction.
My sister was on one side of Mom holding her hand, and my Mom’s baby sister was on her other side holding her hand when it started. They told her it was okay to let go.
It’s the type of thing you hope you can forget someday…then spend half your life thinking about it. It’s always in the back of your mind – like a song that stays with you after you turn off the radio; no matter what, the song repeats itself in a loop in the back of your mind.
Recently, I was asked a question, and while thinking about the answer, I was suddenly overtaken by the memory of that day. It came upon me like a hungry tiger tearing me to shreds and leaving me a disemboweled lump of myself where only moments before I was a thinking, feeling, functioning man.
Cotton candy.
The smell of it floating through the air, sweetening each breath. This, in no small part, is making the day better. What else could I ask for? Not only did I get to ride The Bullet this year (a big kid ride if there ever was one), but I also got to walk in the parade, too!
I am eight years old, and my father and a group of his “friends”(other men who lived their lives in the bottom of a bottle) are members of a Veterans group for people who saw combat in Viet Nam. They have been asked to bring their families to walk in this year’s parade during the regional Franco-American festival.
We have known about this for weeks so I hardly slept last night. We each have on a little t-shirt with the logo of the Veteran’s group on the front. I couldn’t be more proud. Some of us have little flags while others pass out bumper stickers, but we’re are all having fun. There is something about everyone looking at me, waving, and just generally having a good time that puts a smile on my soul.
Next, I’ll run for Senate and become an Astronaut. I am on top of the world.
Now, we are being addressed by the Governor of Maine. He is speaking of things I can’t and have no interest in understanding. I have better things to think about at my age: baseball cards, my next birthday, how to stop that stupid girl at school from pulling my hair everyday. I start to imagine pushing her down the next time she does. My imagination runs wild while the speech continues.
I wish Knight Rider would come out next.
That would make this day complete.
In the middle of my fanciful daydreaming, my father taps me on the shoulder and says, “Let’s go.” I don’t know where we are going and I have little time to ask before he starts walking.
Walking with him is always hard. He walks with fast, long strides that eat up the ground in front of him in big gulps. Today is especially hard because there are people everywhere, milling lazily around looking at the trinkets being sold by the vendors and watching the children on the Merry-Go-Round. I am small and not exactly built to push my way through a crowd.
We walk only a few short blocks when we come to this house. It looks like every other apartment house in Lewiston. Run down and begging for paint; sheets in more of the windows than the shades that are popular now. There are huge chunks of the asbestos siding gone to the years of harsh winters with bitter cold. There is a bicycle chained in front that is missing both tires, and the chain has discolored the concrete of the sidewalk from years of sitting there rusting. The body of the house is yellow with a dark brown on the windows and one door that once had glass in the top third of it. A condemned sign wouldn’t look out of place here.
My father knocks on the first door we come to after entering the building. We enter after a yell from inside. I know already what is in store for the rest of the day. I can smell the distinct odor of old beer that has been sitting in the can and getting hot and stale, a smell I loathe.
I see that the room holds the men from the Veterans’ group, and I can also tell within moments that few, if any, had stayed as long as we did after the parade. The slurring of their words, apparent in their voices, says that they have had a few drinks already. Five, maybe six, men and a woman who must be one of their wives. They are sitting around a glass-topped table with legs made of what looks like bent pipe – four separate pieces, connected, shaped like a large squarish C. The walls are dirty from years of cigarette smoke and not being cleaned, making what should be white look as though it were river mud; yellowish brown with hints of green.
In the adjoining room there are two other kids, so my brother and I know that these are our friends for the day, and we run off to see what games are currently afoot. This room is the same color, but much smaller, containing a couch which I am sure has come from the side of the road. The smell of cigarette smoke and body odor lingers everywhere, and I know it is safest not being seen or heard for the next few hours if we can help it.
The afternoon progresses like most of this nature; there are beer runs and arguments, the voices get louder as the hours pass by, and the thoughts get less coherent. I have been in this situation as often as I have been in a room with a window, so I am playing and not really paying attention when it happens.
Why? To what end? Have I looked too much like I am having fun? Was there an instant where I looked too much like my mother? I do not know. What I do know is there isn’t a warning – no loud crash or even an instant where I can feel the malevolence building. One second, I am playing happily, waiting for word to get ready for the few miles home with my father weaving on the sidewalk, and the next there is a hand on the back of my neck and it is squeezing. Hard.
I instinctively try to duck and run, but it’s too late. I have been caught unawares, and the fear grips me like a blanket wrapped around me in a restless sleep, getting tighter with each attempt at escape.
“Come ‘ere, I wan-na show you summten.”
His breath hits me in the face, and my stomach turns, making the terror that has settled in me even worse. It smells of cheap beer, Marlboro reds, and the not-unfamiliar stench of hate. It’s a seething anger that I know well; he had it rough, and I was ungrateful for all his sacrifices. I am just a spoiled little brat that doesn’t know how to be a good little boy – stupid and too much of a sissy-boy for his tastes, in need of a little mettle in my blood.
As I am being dragged across the floor, trying to wrestle myself from his grip, and getting nowhere, nobody seems to notice. There is no apparent lull in conversation. No people crying out for my father to release me; nothing out of the ordinary going on here at all.
“If you don’t quit squirming you little mother fucker…” the threat left open, allowing me poetic license to finish as I see fit. The things that my brain offer are no less frightening than anything he would have managed.
Where, I don’t know, but from somewhere there appears a set of handcuffs. The metal ones, not exactly police issue, but not the cheap ones with a lever that will unlock them if you can manage to get your finger on it. He reaches down, seizes me by the wrist, and clicks the first bracelet on me before I see what he has. The other people in the room have stopped talking. They have all noticed that something is happening and are transfixed by the spectacle of a man dragging his son across the room. They watch, fascinated as it unfolds; rubber-neckers to the car wreck that is in front of them.
Before he clicks the other bracelet in place, he runs it under the leg of the table so my wrists are together with the three inch chain under a leg of the table. Had he been compassionate and put the other bracelet around the leg, I would have had some movement. He is desperate to blame someone or something for the ruin that is his existence, and it is my turn.
Again.
My struggles to free myself prove fruitless very quickly, and I start to cry. Not a whining wail or a screech – just tears, silent and accusing, dripping from my chin, streaming down my face and washing streaks of red into the pale color of my face.
I am too young to tell if this is uncomfortable laughter or if the hate has spread to the others through osmosis.
I get tired fast, and my struggles start to come in spurts. I sit and try to find a comfortable way to position myself in order to rest between attempts to free myself. I try everything. Picking up the table. Pulling helplessly against the pipe. I am just too small and weak to get anything accomplished. My father insults me and pushes me down with his foot while the other men laugh at his words and even a chuckle or two at my tears.
It always makes these type of men feel better to see someone suffer and writhe in pain. It makes them forget that they are miserable human beings, each lost in their own tragedy.
After I have been sufficiently humiliated and defeated, I become boring, and they lose interest. They resume the conversation as though I am not even here. The woman that is here waits until it is obvious that she will suffer no ill will for doing so and gets up to find the keys. I have been under this glass table for almost an hour, and the men are no longer even glancing through the glass to get a look at the kid trapped down there. The woman comes back with a bobby pin, because there are no keys in evidence, and says something about how mean they are. This is greeted with some vulgarity and a warning to mind her business lest she finds herself locked there in my stead.
My wrists are hurting from all the pulling and moving about, red and scraped from the cheap metal of the handcuffs. My shoulders are burning from the struggle with my father as well as the exercise of trying to lift the table.
I run into the living room where I was playing so quietly only an hour before. There will be no more playing for me. Not today. Not for a few days. Once again, I have been reminded of my station in life and the reality of it all.
The woman comes in behind me and eventually does release me from the other bracelet of the cuffs. It takes her a few minutes, and the men start calling to her to forget it, get it later. Eventually, she tires of their remarks and risks their wrath by saying something back. I do not hear it against the thunder in my eardrums that is my heartbeat. I internally beg her to stop. Scared that her mouth will make this day worse for me.
I watch as she walks away after freeing me from the second bracelet. She sets the handcuffs on the table and grabs the beer she left there to help me. She sits down and tries to steer the conversation away from herself by saying something light and funny.
I sit on the couch, scared to move for fear of being noticed again. The tears are slowing, now but a trickle down my face as if they’re not sure I am finished needing them. Each one releases more of the emotions I have paralyzing me where I sit – washing away the pity and the anger that consumes me.
This time when it happens, I hear his chair. It drags across the floor ever so briefly. It sounds like nails on a chalkboard – not fingernails, but nails. I am afraid to hope he is going to the bathroom. Too frightened to turn my whole head and watch him, I try to use my peripherals to see, but the question is answered when I hear the clink of the handcuffs as he picks them up. I try to make myself smaller. Try to climb into the couch as if I were really the cockroach he makes me feel like.
The tears start afresh as his shadow comes near me. This time the sobs over take me. They are so powerful and deep, the world swims around the edges from oxygen deficiency. I do not fight him this time. Years of life with him taught me to know that I am better off not resisting him too often. It doesn’t matter, though; his grip is a vice around my wrist and the nape of my neck.
He is saying something that I can’t hear. The anxiety and fear have deafened me to anything other than my thoughts. I wonder why he hates me; why his love always hurts. What I do hear is the click of those handcuffs as he starts putting them on me again. Snatching me around like a doll to put me under the table once again. This time he puts them on so tight I think they are cutting into me.
I don’t hear the second one click. I hear my innocence being severed from my eight-year old soul. I hear my sanity as it grips the edge of the cliff and struggles not to fall into the darkness that awaits it. I hear the sobs of the little boy that I once was as I enter a maturity I won’t catch up with for almost twenty years. One I still struggle to keep in front of me.
When I think about it now, I can’t remember how long I was locked there the second time or how I got out. I can’t remember going home or if my father tried to be nice to me later. I can’t remember anything after the snap. If you ever ask me what I once wanted to be when I grew up, you will see me think about it, but I won’t remember. I can’t. I don’t remember ever wanting to grow up. I can’t remember anything about that child – who he was or what he dreamed about. He is a far away little boy that couldn’t be invisible.
Couldn’t not look like his mother. Couldn’t find love in a world he never asked for and never wanted.
That little boy is still handcuffed to that table. Still struggles to free himself. Still hasn’t hated himself. Still doesn’t think of death when he wakes up in the morning. He still hasn’t found the release of drugs and alcohol. He will never be mean to someone because he thinks that is how to deal with disappointment. He will never love anyone, ever again. That little boy still sobs in my heart late at night as I try to fall asleep and reminds me that I deserve what I got coming.
That little boy will never hurt anyone because that little boy is trapped in a room somewhere in Lewiston, Maine.
So it’s time to Band Back Together for Birth Defects. Share your stories. Tell your tales. We need to learn about the birth defects that have touched YOUR life. Let’s rock out and tell the world OUR stories.
It’s YOUR turn, The Band!
I’ve only ever lurked on Band Back Together, but I feel like I need to tell my daughter’s story.
The pregnancy itself wasn’t bad, just the normal aches, pains, and nausea. Emotionally it was tough – there were issues found on ultrasounds, and my OB felt like it was her duty to present the worst-case scenario every time we spoke. I decided that if we had to hear bad news, I wanted it to be delivered by someone who was kind and knowledgeable, so we switched doctors and started seeing a maternal-fetal specialist.
He told us that there would be kidney issues when she was born, but nothing emergent.
My water broke 2 days before my due date. I had a good, quick labor. There was meconium in the amniotic fluid, but otherwise it went well. She was born just after midnight, with good Apgar scores. She weighed nearly nine pounds! She had no interest in nursing, and she wasn’t into the formula they offered, either. A couple hours later, her blood sugar started to drop, and then she stopped breathing. They took her to the NICU for observation. I’d worked a full day before my water broke, so by the time they took her away I had been awake for almost 24 hours. I was sent to a recovery room without my baby.
That day and the next are a blur. This was my first child, and I had no idea what to expect from a normal birth or a brand new baby. I only knew that this was not what I expected. I alternated between recovering in my room and sitting with my daughter in the NICU. She would barely take any food and kept even less down. There were multiple doctors coming in and out and multiple tests being done – blood draws, x-rays, upper and lower GI, etc.
Finally they determined that she had intestinal malrotation. That means her intestines were jumbled and twisted and not anchored in any way. If untreated or undiscovered, it quickly damages the bowels and then leads to death, essentially by starvation. Surgery was set for Friday night, the same time that I was to be released. I had no choice but to hand over my 3-day old baby to be intubated and placed under general anesthesia so that a surgeon could cut open and rearrange her guts.
My husband, my mom, my mother-in-law, and a close friend were with me during the surgery. Around midnight, the surgery was finally complete. They would only allow 2 people in the room with her at a time, so I stayed there while everyone else took turns coming in to see her. I can’t even describe how it felt to see the 3-inch incision across her tiny little belly. She had wires and tubes everywhere, and we were not allowed to hold her. I could tell she was in pain – when on a ventilator, the vocal cords don’t make noise, but I could see her screaming.
My mom and dear friend knew what kind of comfort I needed – they just held me and murmured words of consolation while I tried in vain to keep it together. My mother-in-law was not so in tune with what I needed – she wanted to touch her, and exclaim over her, and it was all just too much for me. I was completely helpless and broken. I had my husband make everyone leave, and then I left, too. I left my silently screaming baby in the care of total strangers, Band. At that moment, I was certain that the nurses could do more for her than I could. Now, when I look back, I am unable to forgive myself for leaving her.
That night turned out to be the beginning of a long journey. She had 2 more surgeries and lots more testing; we found out that she has a genetic anomaly that seemed to be the cause of her birth defects. She was 9 weeks old when we were finally allowed to take her home – just a few days after my first Mother’s Day.
My daughter is now almost 3 years old. She has very low muscle tone and is still quite delayed, and she is a beautiful, happy, easygoing little girl. She wears her battle scars with no complaint, and despite my failings, she loves me completely.
