by Band Back Together | Oct 18, 2010 | Breast Cancer, Cancer and Neoplasia, Grandparent Loss, Grief, Hospice, Loss, Sadness, Stroke |
Cancer sucks. My grandma, barely sixty years old, died from breast cancer when I was four. Even though I was so young, I still remember watching her suffer. I remember watching my mother and her sister suffer, too. Even though I was young, I still remember thinking if there was really a God, why would he put my grandma through all of this?
She never hurt a soul…and I loved her.
Cancer claimed my mother-in-law, too. I loved her as though she were my blood. Maybe even more than that because she never said a harsh word to me, or as far as I know, about me.
She had lung cancer and yes, she smoked. “I shot myself in the foot,” she said to me when she was diagnosed. She fought like the feisty Scottish lady that she was. She was diagnosed around Thanksgiving and lost her battle that following June.
Just about six months. DAMN! It was so quick! I know it didn’t seem so quick to her.
She went through chemotherapy and all of the horrible shit that went along with it. She did everything she was supposed to do. She did everything right. And then they found cancer in her brain. The woman never took a fucking pill in her life and here she was having fucking brain surgery! She made it through the surgery. My sister-in-law and I went into the recovery room and damn it if that lady wasn’t sitting up and talking right after having her skull busted open.
While she was in rehab, she had a stroke. It was a kind I had never heard of. It was progressive so it started out slowly. She knew what was going on.
Chef and I went to visit her in the hospital and at that point she said she had had enough. She said to us, “if they find any more cancer, I don’t want to be treated.” If she had known that she only had six months to live, she would have said, “Screw chemo,” and gone to visit her grandchildren in Wisconsin.
I know that because she was an open book. She had no secrets. What you saw was what you got.
The next day she could not speak.
We were the last of her children to carry on a conversation with her. When the doctors finally determined that she had had a stroke and that it was progressive, my sister-in-law decided to bring her back home. The doctors said she had less than a week to live, so she would come home to be surrounded by her children, grandchildren and her beautiful antiques.
My husband and his sisters took care of her for that week. Because my children were so young, I stayed home and came for the weekend. My two year old daughter stood by my mother-in-law’s bed and spoke to her. She called her “gammy.” My mother-in-law would grunt occasionally. Sure enough on day seven – just a week after we had our last conversation with her – my mother-in-law lost her battle.
I ask the question once again, forty years later… if there was really a God, why would he put my mother-in-law through all of this?
She never hurt a soul…and I loved her.
by Band Back Together | Oct 15, 2010 | Fear, Hypoplastic Left Heart Syndrome, Sadness |
My little girl, Jillian, due Christmas Day has been diagnosed with Hypoplastic Left Heart Syndrome.
I feel like everything has caught up with me today. Emotionally and physically, I’m just worn out. I’ve tried to be strong for the last six weeks but… I feel like that’s slipping away.
I’m starting to realize that I need to be honest with myself: Yes, I’m optimistic. Yes, I’m hopeful. Yes, I believe we’re making the right decisions. But I’m also hurting. Deep down, this just hurts.
Through all of this, I’ve had amazing people come forward in support for us. I’ve met some people who have gone through this and other things parents shouldn’t have to go through, too. And while all of that makes me feel better, it can’t heal the hurt. It doesn’t get rid of the guilt I feel and it doesn’t ease the pain. It doesn’t make it go away and it doesn’t answer any questions. I’d like to say that my heart is broken, but I’ve been shown now, twice, what a truly broken heart is. I’d like to say that something positive has to come out of this, and honestly I do feel that way, but why does there have to be so much pain first?
I’ve asked myself a million times why this is happening? Why does this have to happen to my family? Why do all of my kids that have to go through this? Why does it have to be MY kids? Why does it have to be JR? And why does it have to be me?
It’s not like I’d wish this upon anyone else. But I wouldn’t wish it for myself, either. It all just seems so unfair. I hate to host my own pity party- truly I have tried my best not to- but really? Two babies with heart conditions? Wasn’t one enough? And why three or more surgeries this time?
What did I do to deserve this? Was there something that I was supposed to learn after Ethan’s surgery that I didn’t? Some lesson that I was blind to; that maybe if I’d understood would have changed all of this? Did I want a little girl too much? Did I wish too hard for another baby to make my family complete when I should have been happy with what I had? Why do I have to excitedly yet apprehensively count down the weeks until she is born? Why do we have to try to put on a happy, brave face everyday when really we’re mad and scared and hurt inside?
Why do we have to face the fears that our baby might not come home with us?
I just don’t get it.
The rational side of me says that it’s just something in our DNA. One of those crazy things where you have to have two parents who carry a recessive trait and twice now that recessive trait has been expressed.
But then there’s the other side of me. The side that asks all these questions and wants answers that aren’t based in science. Who cares if it’s genetics? The fact still remains that this is happening to MY family. The truth is, it will be MY baby that I have to watch fighting for life- again. Something so many people take for granted. I don’t blame them. After all, that is how it’s supposed to be.
A newborn shouldn’t be required to fight for their life. Ever.
by Band Back Together | Oct 15, 2010 | Cancer and Neoplasia, Grief, Loss, Parent Loss |
Cancer might not have destroyed my childhood, but I sure grew up faster. I knew from the time that I was six that my dad was going to die. My family never hid Daddy’s sickness. Even though my parents were divorced and my dad went on to remarry when I was seven, we were always very close. I have great memories of my dad and he will forever be the one I compare all men to.
Nobody will ever be better than my own dad.
My dad was diagnosed with cancer when he was sixteen. It started in his jaw and he went through countless surgeries, had many teeth removed, radiation and chemo (all beginning in 1966 when cancer was very hush-hush and nobody talked about it).
Eventually my dad wound up having half his jaw removed. The cancer showed up again, this time in his lungs. Over the years my dad underwent countless surgeries, radiation, and chemotherapy treatments.
My dad didn’t have “Lung Cancer” and to be honest, I don’t know what he had, but he would get tumors that would grow in the pulmonary artery. Chemo would shrink it, but the bitch kept coming back. My dad never quit smoking though, and he made me promise I would never pick the habit up (which I have stood by and have made my own kid promise to never smoke either).
According to my aunt, my family believes that my dad got the cancer after cleaning up some land for some extra money. Years later, that land was found to be a toxic waste site. To this day there are efforts to clean up that land to make it profitable for the city where my dad grew up.
My dad worked hard even though he wasn’t supposed to do physical labor and when he would get sick he would be down for days, sometimes weeks. That didn’t stop him from moving back to NY when I was ten and buying a house on three acres in upstate NY, building a barn and putting up fence so he could have his own little farm. Nope. Nobody stopped my daddy. I’m fairly certain that if his doctors had known what he was up to, they would have committed him. My dad became a farmer when he was thirty-six. He raised cows, pigs, goats, chickens, ducks, rabbits, a horse named Rusty, and had an enormous vegetable garden.
I remember going with him to a chemo treatment when I was eleven or twelve. His chemo treatments were done seventy miles away in Cooperstown at the hospital there, so my dad, the trooper, made a day of it like it was just another day in his life. He had his chemo and then we walked around Cooperstown and then drove the seventy miles back home. Just another day.
I remember the last summer I spent with my dad. My stepmom took the kids to the store or something and my dad was watching TV. He called me into the living room and wanted me to sit with him. He looked at me and told me he was dying. It broke my heart. In my heart I had always known Daddy was sick but I will always remember that day. We sat there crying together. It was very emotional.
My dad died on February 25, 1991. He was forty-one.
I was fourteen.
Daddy died of pneumonia in the hospital. I had spoken with him two days earlier on the phone for our weekly Sunday afternoon call. My grandma, aunt, uncle and my dad’s cousin had gotten the call late at night to get to the hospital because he was fading fast, but they didn’t want me to see my dad in that condition. They didn’t want me to remember him that way so I wasn’t told anything until 6:00 the next morning when the call came.
I crumbled.
I fell apart.
I knew it was going to happen one day. I had expected to have my daddy longer, not to lose him just as I was learning about life.
Nobody at home understood what I was going through. Most of my friends took off, not knowing what to say or do. My best friend, the girl I knew I could count on for anything, was the one who stayed… the only one. The one who I am still best friends with to this very day.
My gram, Dad’s mom, died five weeks later of colon cancer that was diagnosed not six months earlier. I think she just gave up after she lost her youngest son.
After my dad died, my stepmom deeded their house back to the bank, took their three kids and moved to California to be with her oldest daughter.
Without telling me.
I will never forget calling on Christmas morning to wish them Merry Christmas and getting the this number has been disconnected message. I sat and sobbed. I frantically called my dad’s cousin who couldn’t believe that this woman didn’t have the guts to tell me she was moving. She didn’t have an address or a phone number for her because she hadn’t contacted her.
I didn’t hear from my stepmom until 3 ½ years later when my mom passed away unexpectedly. She wanted to play mother-figure to me and at the time we got along fine, cordially. I didn’t see my siblings for eight whole years. My sister would call now and again to say hi, but we never got the chance to be close. My brothers don’t talk to me at all.
I don’t speak to my stepmom.
My kid has my dad’s middle name as his first. I wanted to name him after my dad outright, but my stepsister went and did that first. He wasn’t even her dad. I tried the reverse, but it just didn’t sound right.
I miss my dad every day. It never gets easier. The pain changes but it never goes away. I see my dad in my own son every day, in his mannerisms and his kindness… in his temper, too.
He lives through my son, yet I still miss him so much.
by Band Back Together | Oct 12, 2010 | Anger, Feelings, Grief, Infertility, Loss, Post-Traumatic Stress Disorder, Sadness |
Sometimes you don’t even realize what you have been running from, or for how long.
Until the night (why is it always at night?) it knocks you down, sits on your chest and forces you to stare directly into the eye of the storm. The night when you turned your head too casually and found it, there, staring at you from your peripheral. Angry for being ignored, pained for not being nurtured.
It is on this night that you pay for the days, months, (years in my case) of composure, the relief you have culled from choosing to ignore your demons.
And oh, I paid dearly.
Six years ago, I woke up from anesthesia an altered woman.
I have never allowed myself to mourn what I lost that day and how much of my soul has been scraped away since. I have been too busy ‘looking forward’ and ‘moving on’ and ‘being thankful’. I have kept a smile on my face and I have continued to placate myself with thoughts of ‘it could be so much worse’ (it could) and ‘I still have more than others’ (I do). But last night night, I was not thinking of how much worse it could be, but how bad it is, not caring that I don’t have it as bad as others because my situation is looking worse by the day.
And it all fell down. My feelings of frustration and inadequacy. My overwhelming pain over never being able to do what I always thought I would and could do.
It honestly became exhausting to hold down my feelings about losing part of my body, of being let down for the past four years by other parts of it. My arms and my heart gave out from the weight of it all. I have been holding my hand over that little girl’s mouth for too long but last night she was allowed to wail and cry and stomp her feet for what she has lost. For the life she felt promised, but was never and may never be fulfilled. For being the exception to the rule and for being held at arms length from almost every goal she ever set for herself.
Today, yes, I will try to get back to my zen, a place of acceptance and a place where I can build from.
Last night though, was about how much has been lost and destroyed.
by Band Back Together | Oct 12, 2010 | Brain Cancer, Cancer and Neoplasia, Coping With Anxiety Disorders, Coping With Domestic Abuse, Domestic Abuse, Helping Someone In An Abusive Relationship, Parent Loss, Pediatric Cancer, Postpartum Depression, Single Parenting, Things That Are Bullshit |
Cancer took my Daddy not even three months ago. The rest of the year hasn’t been much better.
2010 was supposed to be a fun year. A great vacation with my little girl – she was turning 5. We were so excited. First inkling that 2010 would NOT be cool? My 5-year olds dad would not allow me to get her a passport to take her on a cruise. The bastard didn’t think I’d bring her back! Wha? Obviously he knows me even less than he did when we were married. Idiot.
So my dreams of a Mama and Gigi vacation were put on the back burner.
February 2nd, I turned 32 and I wasn’t happy about it.
Where was my life? Not where I wanted it even though I did everything the right way. I graduated high school, went straight to college, graduated college, married college sweetheart and waited the right time after the wedding to have baby. We thought that three years was a good amount of time.
Uhhh…not so much.
Marriage was not a happy thing for me. Every day, I was put-down. My self-esteem shattered. I found out I was pregnant (because, you know, that’s what happens when you have sex and don’t use protection. After, all it was “cheaper” to use condoms instead of birth control pills. Or something like that).
All my life I wanted to be a mother. My pregnancy was awful. Not because I was sick or anything but because my husband was an asshole. He called fat and crazy, I started believing him while I wondered what the fuck I was doing with this bastard? Well, I needed to work things out because we were having a baby. And not just a baby…MY daughter, the one that I been waiting my whole life to have.
She was born on a freezing cold St. Patrick’s day. Came screaming into the world and was…perfect. This child was sent to save my life, I knew that the moment I saw her. We named her Grace (I call her Gigi online for “privacy”). I promised that little girl on the first night of her life that I would never let ANYTHING hurt her. ANYTHING or anyONE.
Life went on with a colicky, very super-attached-to Mama infant. That child cried more than I thought anyone could ever cry EVER. I wore holes in the carpet walking with her jiggling her and whispering “shhhhhhh shhhhhhh” to get her to sleep. We moved to a brand-new city when she was five months old. Because it’s REALLY a good thing to uproot a mom with severe postpartum anxiety and depression from her only support system (her family) and move her with her colicky infant to a new place where she has to “bring home the bacon” while he leaves at 6:00 am every day to get a fancy-schmancy MBA. I was in a really good place in life. /sarcasm
Two months into the hell that was this move, I was on the phone with my mother while I was pumping in a dark, cold, hidden office at my work. I told her how awful The Husband had been. I told her that he’d said he would “rather me be dead than be Grace’s mom.” (Now there was more that happened but I’ve blocked most of it out. Some broken closet doors, a night spent sleeping with 911 dialed on my phone in front of my daughters crib and some other stuff)
Somehow, this didn’t concern me for ME…but for her. My mom decided that she and my father would hook up their trailer that night and make the 3 1/2 hour trek and move us home the next day.
The next morning I got up and dutifully kissed my husband goodbye. I called my parents as soon as he was out and could no longer be seen on the road. By 12:30 we were headed “home.” I called The Husband and told him that we were gone and things needed to change before we came back.
I fully believed that we WOULD be going back. But then? Then my colicky cried-all-the-time-unless-she-was-attached-to-Mama’s-boob became Super Happy Confident 7-month old. What? My child was picking up on every single source of stress in me and reacting from that. Weird. I’ve always said she is my heart and she truly was…we have been cosmically connected from the moment of her conception.
Anyway…4 years and much angst, tears, anger, hurt, hearings, court sessions, lawyers and judges later – I was declared free and divorced from The Husband. Whoopee! But yet I still had to hand over a piece of me every other weekend and every Tuesday evening. Grrr. I still hate him even though he is now The Ex.
Anyway…2010 was a year of promise. It was going to be good. I had a job that was as close to my dream job as I could get (or at least as close to my dream salary being somewhat geographically challenged). This was going to be a GOOD YEAR.
And then? It wasn’t.
February 4th. My Mama took a slip on the ice. A couple of scary moments where we thought she was bleeding in her brain. BLEEDING in her brain. That was bad. I took off work and ran to rescue my child (whom my mother took care of and didn’t know if she was at school or not because she wasn’t quite sure when or where she fell – a severe concussion will do that to you).
February 5th. I got fired from my job. FIRED FROM MY JOB. I’m a single mom who bought her very first house not even 5 months before and my jackass bosses FIRED me. I won’t get into reasons but let’s just say they aren’t exactly all “legal.”
Then my Daddy starts having health issues while we are still dealing with my Mama’s issues. Now yes, I’m 32 years old but when I say I’m close with my family – I am CLOSEWITHMYFAMILY. Multiple conversations with each of them a day. These people are not only my blood relations but my best friends.
So…winter turns to spring, I may or may not be enjoying a bit of unemployment fun and playing the “stay at home mom” gig. Never thought it would happen as I’m a single mom and well, I have no sugar daddy.
April…my fabulous Daddy is diagnosed with fucking brain cancer. BRAIN CANCER. It seriously doesn’t get much worse than that. He died not even three months after diagnosis. Motherfucking cancer and the motherfucking staph infection that came with his surgeries. I am not prepared to be half an orphan. I’m too young for this crap.
Then my sister…ahhh…my sister. There are not enough words or space on this site to even get into her. I love her, she drives me crazy and I love her 4 children as my own. She moved them 3 hours away. 3 hours away! Not the best choice given everything going on (and by everything I mean that this storyline could rival any soap opera…I’m NOT KIDDING). So my dad dies, my sister moves, my daughter-my heart-my sidekick in everything starts real life school and I have NO FUCKING JOB.
Add onto this that my nephew (0ne of the 4 that my sister has birthed) has leukemia. Yeah…unfortunately after everything we’ve been through this year that is an afterthought now. Poor kid. But he is doing well so that’s always a positive.
So…that’s my story. I have no “home.” This story could go under abuse (which I grazed with my marriage to The Ex), Divorce, Cancer, Parent Loss, Grief, Economic Struggles, Infidelity if I got into my sisters story, chronic illness if I went into all of my back story (Ulcerative Colitis), Depression, Anxiety, Postpartum Depression, Family Relationships, Pediatric Illness and it could go on and on. So I just choose to categorize it as “Things That Are Bullshit.”
So my Band friends, this is a small piece of the fucked up-person that is me.
I’m in a full scale “life sucks” moment now and just hope eventually maybe I can shit rainbows and see unicorns again. Maybe after I kick this damn strep throat that I have right now. School cooties.
by Band Back Together | Oct 10, 2010 | Anger, Anxiety, Birth Defects, Birth Trauma, Encephalocele, Fear, Feelings, Generalized Anxiety Disorder Resources, Hope, How To Cope With Post-Traumatic Stress Disorder, Loneliness, Medical Mystery Tour, Neural Tube Defects, NICU, PICU, Post-Traumatic Stress Disorder, Sadness, Stress, Trauma |
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
I instinctively checked the monitors as I approached my daughter who was sprawled out, getting a sunbath underneath the warmer. Her stats were picture perfect, I noticed, breathing a little more easily, and I made my way slowly to her bedside where she was sleeping peacefully.
I slogged my soggy bottom from the wheelchair onto the rocker that had been shoved into her tiny NICU room; barely even a room, more like a broom closet. She was sandwiched in between two misbehaving (“misbehaving” means that their alarms were constantly blaring) babies who I could hear misbehaving.
Most of the NICU, I noted as I was wheeled past, was full of Feeders and Growers. That’s NICU slang for babies that were, for whatever reason, finishing their gestation outside of the womb. It”s always evoked a pleasant picture of a garden of freshly hatched babies. A Baby Garden.
Of the other babies that I could see cooking away merrily in their incubators, Amelia was the biggest, fattest, and likely the only full- term baby there.
According to her room placement, though, she was the most ill.
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
My ass firmly planted now onto the chair (I’d had a traumatic vaginal birth mere hours before), I held Amelia’s lone sock as a talisman, hoping it would ward off the Bad News. I was preparing to nurse my daughter again, just waiting for our nurse to come and help me sort through the tangle of wires my daughter was attached to.
It was hard to believe only thirty or so minutes had passed since we’d heard “there’s something sinister on your daughter’s CT scan.”
Our–Amelia’s–nurse walked in and introduced herself to The Daver and I. I was openly weeping, holding onto Mimi’s sock and my iPhone – where the Pranksters live!- as a life preserver. The Daver was pale(r) and stalwart.
I handed off the box of Kleenex that had been pressed onto my lap as we left Mother/Baby and my daughter was brought back to me, hooked up to so many wires that she looked like an electrical outlet. The nurse stood there, kindly talking to us, but not revealing anything.
We still had no idea what was wrong with our daughter. A diagnosis would take weeks. Her life, as far as we knew, hung in the balance.
I begged the nurse to have the house neonatologist visit my daughter as the pediatric neurosurgeon was busily operating on someone’s head somewhere other than the NICU. It’s probably good I didn’t know where he was or I’d have stalked him down and dragged him to my daughter for a diagnosis.
The neonatologist – the one I’d met a lifetime ago in the delivery room, the guy who was always drinking a bottle of something – he came over to Amelia’s “room” and he told us that there was a “bright spot” on Amelia’s CT Scan. He didn’t mean diamonds.
I had no fucking clue what that meant and he didn’t follow it up with much, although I did see his lips move, I couldn’t understand his words.
Guess that’s panic for you.
After the doctor left, the nurse came back in to ask if we’d wanted to see the chaplain; rather to have Amelia meet the chaplain. A thousand times yes.
She was amazing. Just. Incredible. For the next year, it was her words, her warmth and compassion that I kept coming back to. She blessed my daughter. My daughter was blessed.
And she is so, so blessed.
We sat there in the NICU; just the three of us. I couldn’t tell you how long we just sat. Time in the ICU is timeless. 4 AM and 4PM are the same.
Soon enough, I had to go upstairs to change my undergarments and ready myself to see my boys. My sister-in-law was bringing my sons to visit, and I had to put on my Poker Face. Given the raw, chapped and bleeding state of my cheeks, was going to be damn near impossible.
Back in my room, I saw that I’d gotten some flowers and a basket from two of my Pranksters and it made me cry. Then again, I think the package of Saltines that had been ruthlessly thrown on the floor the night before might have made me cry. I wasn’t in a Good Place.
Alex and Ben came in a bit after I’d gotten cleaned up. I held Alex very, very close as Ben showed me some pictures he’d colored of Amelia. Ben knew his sister was sick but Alex (only 22 months old) had no idea what a “sister” was, let alone what being “sick” meant. I held them and faked normal until I got the call from the NICU. Time to nurse the baby.
Talk about being torn.
I cried as I said goodbye to my youngest son–my eldest just wanted to get home and I couldn’t find fault with that–and he cried and yowled “Mooommmmyyy” as he was led away to the elevators that would dump him back into the outside world.
By myself for the first time, I tearfully found my way back to the Secret Place, The Land of Tears. Never have I felt so sick to my stomach in my life. People stared sympathetically as I wept in the elevator, leaning against the walls for support.
I begged God to let her live, even if she was retarded and her IQ was 43 and had to live at home for the rest of her life, just please let my baby girl live. I didn’t care what was wrong with her so long as she made it out alive. I begged God to take me instead. I’d had 28 wonderful years on the planet already, and she was less than 24 hours old. Certainly, I’d give my life to save her in a moment.
Hear my prayer, hear my prayer, hear my prayer. Please God, hear my prayer.
After scrubbing the top 50 layers of skin from my arm and signing a reasonable facsimile of my name, I wobbled to her bedside. There she was, my girl. Perfect stats, thrashing about her isolette, pissed as hell and looking for something to eat.
In the brief time I’d been gone we’d gotten a new nurse.
When she came in to assess my daughter and saw me crying as I nursed my girl, for the first time in a day, someone asked me what was wrong. I explained that I didn’t know if my daughter would live or die. I told her that no one had told us what could be wrong with her, what that bump COULD be, why she was in the NICU, nothing.
She looked pretty aghast that we’d been told nothing, and for the first time, someone tried to reassure us. I remember leaving the NICU several hours later slightly less burdened.
That night, we ordered a pizza and tried to relax in my somber room. We tried to let go of some of The Fear. I didn’t feel much like celebrating anything, so no balloons, no stuffed animals, no signs that I had just given birth decorated my room. I could have been on any floor, in any room in the hospital.
The nurse brought me my Ambien and the NICU called to tell me that they would bring my daughter up to nurse every 2 hours (the NICU runs like clockwork. It’s no wonder that new parents struggle to care for their NICU graduate when they get home). I turned on the sound machine to blast white noise over The Daver’s snores, and waited, trying to fall asleep.
Unsurprisingly to no one, I couldn’t get anywhere close to sleep that night. This made the tally of nights without sleep 3.
I was about to lose it.
Somewhere around 4 AM, after someone had barged into my room to empty the wastebasket, waking me from the lightest of light sleep, I panicked. I’d sent Dave down to the NICU to sit with our daughter in the vain hope that having him at her side would set my mind free.
I was alone. The panic that had been a constant dull buzzing had morphed into something much more sinister and I knew what was about to happen.
Frantically, I paged the nurses station because I knew I needed help. I explained as carefully as I could that I was about to have a panic attack and that I needed my nurse NOW. My nurse came in, I don’t remember what she did, but she didn’t want to call my doctors because they would be rounding in a couple of hours and I could ask for something for my anxiety then.
Fucking bitch.
She told me to “relax” and then left.
I tried to “relax” which was as useful as punching myself in the face with a hammer. It didn’t work. I put a call back into the nurses station, begging; pleading with them to call my doctor. I begged for help.
My last rational thought was to quickly inventory anything in the room with any sort of calming properties. The best I could come up with was a bottle of Scope.
I didn’t end up drinking it, but I did call the NICU and beg Dave to come back up. A nurse passing by my room took pity on me and called my doctor, who prescribed me an Ativan. A swarm of people all happened to come into my room at the same time: a partner in my OB practice who looked terrified by me but discharged me anyway, a nurse with that beautiful pill, a tech to get my vitals, and my husband.
It sounds, in retelling this, that they were all there to help, but it wasn’t really like that. Dave and the nurse were trying to calm me down, but the tech, the doctor and whomever was washing the floor were doing their jobs. With spectacularly bad timing.
Ativan on board now, I was trying to gulp some calming breaths and stave off the panic. They’d turned off the lights, and covered my still-swollen body with fresh sheets, cleaned off the bedside table and turned on the white noise machine.
Finally, I began to relax and beat the panic away, if only slightly. Dave held my hand and told me over and over and over again that my daughter was just fine, she was perfect, she was wonderful, she’d done great overnight, she was beautiful, she was going to be just fine. It was soothing to hear, but what would have been MORE soothing? Having her bassinet next to my bed where it belonged instead of three floors below.
Then (dun, dun, DUN), the absolute worst person to show up did.
Lactation services.
Lactation Services showed up, because they say they’ll come by every day you’re in the hospital with a new baby, and they do. It’s awesome for people who need help because breastfeeding is nowhere NEAR as easy as it looks on those weird Lamaze videos.
(also: why are people in the Lamaze videos always naked?)
But I didn’t need help. And when she showed up and saw me shaking in bed, being held by my husband while the nurse clucked around me like a mother hen, lights off, white noise blaring, she should have excused herself. This is not a debate about breast and bottle feeding, this is about decency. But no, she didn’t get the hint.
No.
She introduced herself perkily and asked me how breastfeeding was going, and through clenched teeth, I answered that it was fine. Kinder than the situation warranted.
I expected this to be enough for her, but no, she followed that up with, “Do you have any concerns about breastfeeding?” Wrong question, dipshit. Time, place, all that.
“You know what?” I snarled, “I’m MUCH MORE concerned that my baby is going to die than if I have proper latch, okay?”
Again, she could have gracefully bid be farewell. But no. She kept on keeping on.
“Well, what about your concerns with BREASTFEEDING?” She asked, just not getting it.
I responded with, “Look, if she’s dead, I’m not going to give a FUCK about colostrum, okay? Please!”
I began to sob heavily again. It was the very real truth that my daughter could die. We all knew it. Nursing her wasn’t going to help an encephalocele.
Dave told her to get the fuck out of our room.
Finally, with a DO NOT DISTURB sign on my door, I slept for a few hours.
I awoke when The Daver bounded in and announced, “the neurosurgeon ordered an MRI! And he’s really nice! And not concerned! He thinks it’s an encephalocele! It’s a piece of brain or something that’s herniated out! We can go home after the MRI! And follow up with the results next week! Oh, I wish you’d met him. He was so, so nice.”
And just like that, we went from critical to discharged in less than 36 hours.
