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.
by Band Back Together | Oct 7, 2010 | Anger, Anxiety, Coping With Divorce, Divorce, Loneliness, Marriage Problems, Sadness, Shame |
It was August third, 2001. A Friday. It was hotter than Hell outside, and it had been a long week. We’d talked about what we should do that night, and going out to a movie seemed like a good idea. I made dinner. We ate. You went upstairs to take a quick shower: “to wash off the day,” you said. I lay on the couch under the ceiling fan, dozing, and waiting for you.
When you came downstairs, I stirred. You smelled clean, ready to go. You sat on the loveseat across from me and said, “I need to tell you something.”
The rest is a blur, really.
I remember hearing the words, “I’ve been thinking about leaving” come out of your mouth and hit my ears like boiling lead.
I remember simultaneously wanting to vomit, hit you and run away.
I remember screaming, “NO! This isn’t high school! You can’t just ‘break up’ with me!! We took vows! In front of our friends! In front of our parents!”
I remember having a hard time catching my breath and my top lip swelling like it does when I cry really hard.
You were cold, despite the August heat. Firm. Unswayable. I wonder now how many times you’d practiced telling me that you were done. I wonder if you rehearsed in the shower and in the bathroom mirror just before you came down the stairs: “I’m leaving. No, I’m thinking about leaving. Yeah, that sounds better.”
I ended up begging you desperately: “Anything. I’ll do anything you want, just please don’t leave me,” I said. But your heart was closed. You were already gone.
The rest of the month was almost unbearable. The heat. The shame of explaining what was going on. The feeling of utter abandonment and failure. Hearing you move around upstairs in our bedroom while I tried unsuccessfully to sleep in the guest room below. Moving through the days numb, dreading my return home from work to see your things slowly leaving in boxes, headed for your new apartment. Crying on the phone to my mother and my friends about how you’d changed my chemistry and how there was no fucking way I was going to be able to go on without you.
And then it was September, and—just like that—you and the dog were gone.
I moved into a shitty eighties town-home that I loathed. My last living grandparent died, and I felt nothing. The Twin Towers fell, and I began to fall apart. I had one-night stands. I drank alone—something I’d never done before. And when I’d start to get disgusted with myself, I’d blame you. If you just hadn’t left me, none of this horrible shit would be happening to me. I’d be at home with you and the cats and the dog, hanging out. Being your wife. But you didn’t want that, and everything had turned to shit.
Somehow, I woke up each day and lived my life. By April, I’d lost forty pounds, dyed my hair aubergine and pink, and gotten a promotion at work. I began dating. Then one day I looked at the calendar, and more than a year had passed.
I was still alive.
Life was still happening, even though you weren’t a part of it anymore. Big, important shit was going on, and it was no longer my first impulse to pick up the phone, call you to tell you about it. And one day, I woke up, and loneliness and abandonment were not the first things I felt.
Letting go of my anger toward you was a like digging to China with a teaspoon in the desert sun. I hated you and wanted bad things to happen to you. I don’t anymore. I survived you, and I want to thank you. You leaving taught me how strong I am. You showed me how deeply I am loved and supported by my friends and family. I’d always suspected as much, but when you left, I became more confident of that strength and love than ever before, which set the foundation for the biggest challenges, the most terrifying and thrilling adventures and deepest love of my life.
by Band Back Together | Oct 2, 2010 | Anger, Anxiety, Faith, Fear, Guilt, Hope, Loneliness, Love, Marriage and Partnership, Military Deployment And Family, Romantic Relationships, Stress |
Today is Day 1.
The first day of this deployment. Familiar in a sort of comforting way, but also strange and surreal.
You see, this deployment is my husband’s choice. It is a civilian deployment for his everyday job- an electrical engineer at a company that makes military radios. He is installing them in vehicles in Afghanistan. He didn’t have to go.
He chose to go so that we have a chance to get ahead financially. A choice that he felt he couldn’t say no to. I feel awful that soldiers who are putting their lives in more danger are making so much less money. It just doesn’t seem right. My husband says, “hey I served, I don’t feel bad that I am taking this opportunity.” But still somehow it bothers me.
He is not responsible for the lives of 100 people this time, only his own. Later in the day I realized that I feel like this is cheating. Last time I felt guilty that he spent most of his time on base and rarely had to go outside the line. When meeting other wives, whose husbands were in further outposts and doing more dangerous jobs, I never told them how lucky I felt that most of the time, I was pretty sure my husband was sitting at a desk, a desk in Afghanistan, but still a desk and not kicking down doors or looking for IED’s.
If I felt guilty last time when he was serving as a soldier, its no wonder I feel so strongly like we are cheating now. I will be surprised if I don’t get into some sort of fight with my mother-in-law this year. She loves to get on her podium and proclaim to the world how hard she has it because her son is gone. Sorry, not my style. even more so this time. She was just posting some crap on Facebook (a picture of my kid wearing an Army hat) and commenting that my husband was leaving Sunday; to remember the sacrifices soldiers make.
Sorry lady (and I use that term loosely), I don’t even know where to start. I’m not usually a freak about letting people know he is out of town, but I haven’t put it all over Facebook yet. Its really my business to share that my husband is leaving for a year. Thanks for putting that out there. If they are our friends/family that matter, they already know. After reading that, I sent her a brochure about Operational Security (OPSEC) and the things that are appropriate to post online. I think she was pissed, but I don’t care.
And that reminder about the sacrifices that soldiers make?
Again, he is not going as a soldier.
I feel it is disrespectful to those service members over there to put them in the same sentence.
Last time I had ways to show I was proud of him – blue star flag, wearing his unit pin, etc. this time I feel as if I have none of that. Luckily, I have my battle buddies, the wives who banded together with me the last time when our husbands were all deployed. But still, it’s weird because people realize that he must be getting paid a lot. It makes me feel greedy and ungrateful for all that we do have. It makes me feel guilty that I am excited we will be able to pay off the house.
I have been trying to hold it together for a few months now. When I do this, I give the impression to people that I am a cold-hearted bitch. Because I usually am very practical and pragmatic about deployments. What good does crying all the time do? Do they just expect me to fall apart because he is leaving or gone?
The first time, I said to myself and them “Someone has to go. When some guys have to go 3-4 times, who am I to think my husband deserves not to go at all?” and we were both okay with that deployment.
We were tired of waiting for the Army to pick a time to send him. And at least he was going with his own unit. This time, we are both okay with the sacrifice because we are hoping to pay off the house. Both times, it feels like people didn’t understand how we could be okay with this. Sure, we will miss each other, sure it will be hard. (I think it is hardest on the kids) but I am proud to be an independent wife and I want to teach my girls self reliance too. We never have been the type of couple that has to go everywhere together.
Since the Army has been a part of our relationship since I met him, we are pretty used to the short-term separations. Cell phones and email has made it easier. When I first met him, he didn’t have a cell phone and had to wait in line to use a pay phone. So I got pretty used to not hearing from him. Also, as an only child, sometimes I relish my time that I get to myself. My new job is great for that as it allows me to help other military families, yet get some alone time in the car traveling.
i don’t usually get upset about deployment in public, and I don’t usually get upset about it at home, because you see, with two kids, two dogs and a house to take care of, I have more things to do than wallow in self pity. So usually the magnitude of it all doesn’t really hit me until the night before he leaves.
Yesterday, I had to drive him to the airport in the late afternoon and it was my day that I allowed myself to be sad. I let the girls have cookies for dinner, eat in the living room and watch a movie while I laid in bed and watched my own TV shows.
This morning I had to move past that and get my daughter on the bus. Somehow I was reminded of the song “This Too Shall Pass” by Ok Go. I couldn’t stop listening to it today.
Somehow it made things better.
by Band Back Together | Sep 28, 2010 | Anger, Anxiety, Coping With Depression, Depression, Loneliness, Major Depressive Disorder, Mental Health, Stress |
Depression often lies to us, tricking us into going off our much-needed medications.
This is her story:
I wanted to see how I could be without the Prozac. So did my therapist. I had been on it for about 7 years – the same 20 mg dosage the whole time. My therapist openly disapproved of the medication. So I self-weaned off. I felt great for the first few weeks. Then the depression set in. It was mild at first. Just moodiness and more yelling. Then it would lift and life would be great. The cycles went like that for a while. Then there was The Week From Hell.
I ignored my husband completely. I did the bare-bones necessities to get through the day. I did not want to see friends or family. I didn’t want to do anything. I cried all the time, about nothing. I was never like this before. I wanted to eat salmon (which I am severally allergic to) so my throat would close and I would die. Nothing brought me joy. Nothing.
I didn’t talk about this with anyone. When I mentioned suicide to my therapist, he didn’t even blink or comment. This threw me into a greater depression. You know you are doomed when even your therapist doesn’t care.
My husband cried and said he wanted me to talk to him. I told him it didn’t help to talk. I needed medication. So I made an appointment with a psychiatrist (my previous Prozac came from my OB/GYN as medication to handle PMS). It took weeks to get in.
Even though I had been battling depression for years, this was the first time I ever saw a psychiatrist. She was very nice and knowledgeable. She went through all the background questions. When she asked about family history, I laughed and asked how much time we had. She nodded in understanding.
Her diagnosis was that I had mild depression that could go into a severe depressive state if I didn’t medicate myself. She said that since the Prozac did work for me without any side effects that she was putting me back on it, going from 10 mg up to 30 mg gradually.
Today I am at the 20 mg dosage. I feel pretty good. However, my darkest swings are 1-2 weeks before my period, which is still a while away. I am worried that the Prozac won’t be enough anymore. The psychiatrist said there are other similar medications I could take if Prozac didn’t do the job.
I am also worried that I am putting my trust too much into a pill. Why can’t I just be happy? I look at the people around me who smile and laugh and have it all, and want to be like them. But I am just not a happy person. Never have been, and probably never will be.
So I say, Hello Prozac my old friend…. I’ve come to take you again.
