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 10, 2010 | Abuse, Anger, Child Abuse, Child Neglect, Coping With Domestic Abuse, Domestic Abuse, Emotional Abuse |
My abusive ex is controlling me through my kids. He knows that’s my weak spot because I would do anything for my kids. It’s a power play.
He only takes the kids to spite me. He was uninvolved in their lives from the second they were born until the day he walked out the door. But, as soon as he left he decided he wanted to be a parent. Well, he wanted to portray the image of being a parent. He wanted the kids because I wanted the kids and he could never stand to give me what I wanted.
When he has them, they don’t eat lunch, they don’t sleep well, he emotionally abuses them. He leaves them with complete strangers so he doesn’t have to “deal” with them. He has told my 6-year old daughter that she is fat and ugly. He allows his girlfriend to call her a fucking liar (she’s not a liar). My 2-year old son has been strapped in his highchair for hours in time-out, not because he was bad, but because he was acting like a normal 2-year old boy.
It sickens me.
I know the emotional abuse that he is capable of and now I am required, by a court order, to send my children into this nightmare.
How to you explain that to your children? What do you say when they are begging you not to send them? When they tell you daddy is a bad person? How do you respond when they ask you to make it stop, make it better and you can’t?
I have escaped but I feel like my children suffer in my place. I am their Mommy. Mommy makes things right.
But how?
I have a contempt of court hearing at the end of October. He has been violating the custody arrangement for quite some time. I am terrified of this court date. I have witnesses who are going to testify about what they have seen. I hired a Private Investigator who has documentation and videos that show him willfully breaking the court order. But, what if! What if I don’t win? What if he still gets custody? How do I explain this to my children?
I have tried everything in my power to help them but it seems like everything I do makes things worse. The more I fight for them the worse he gets. I have even tried getting them counseling but state law requires BOTH parents to consent to counseling.
How is that right? It seems crazy to me. My children are being emotionally abused but I need the abuser’s signature to get them help. That, to me, is equivalent to asking someone who is physically or sexually abusing someone to give them consent to get help. No abuser is going to admit to abuse.
It angers me that the court isn’t acknowledging the long-term affects of emotional abuse. I may not have been beaten, my children may not have bruises but, we are hurting. Emotional scars don’t ever completely heal. I know that my children will suffer from what they are experiencing now and I can’t do anything.
We have so much love and support from family and friends but I still feel alone. No one can help me.
I just want to fix it and I can’t.
by Band Back Together | Oct 8, 2010 | Anger, Caregiver, Chiari Malformation, Chronic Illness, How To Help A Friend Whose Child Is Seriously Ill, How To Help A Friend With Chronic Illness, Marriage and Partnership, Marriage Problems, Migraines, Pain And Pain Disorders, Pediatric Caregiver |
Yeah. . . I don’t really know what I’m doing, but I have things to say (ed note: if you have things to say, you belong here), so here I am.
First of all, I am not the one in pain, so if you are reading this and you are and you want to tell me to shut my big fat mouth, because I don’t know what the hell I am talking about, feel free. However, the two people most dear to me suffer from chronic pain, and there isn’t a damn thing I can do about it.
Sure, I can provide comfort and try to make life a little easier, be sensitive, kind and gentle, remind my loved ones to take their medication (even though my husband’s on so much dope, it’s turned him into someone I don’t even know and I hate that). But beyond that, I feel helpless.
My husband was diagnosed with RSD (Reflex Sympathetic Dystrophy) in late 2004-2005 – 6 months after a “mundane” farm accident and three mother f-ing months too late for him to get the aggressive treatment he needed. He had a spinal cord stimulator put in that was supposed to “mask” the pain. Ha. The pain affects his right foot. He says it feels like someone poured gasoline on it and lit a match. Chronic depression has ensued; he was suicidal for awhile. AND THERE WAS NOTHING I COULD DO TO FIX IT!
Meanwhile, in 2008, our daughter began to have chronic headaches. Not just ordinary ones, but the kind with tons of pressure in the back of her had. She began to have dizziness, trouble with balance, nausea, vomiting, blurred vision. I thought it was PMS. (She’s thirteen now).
Really, PMS, dufus?
Yeah, well, turns out she has something called a Chiari Malformation with syrinx, which required surgery. . .on our baby. . . near her brain (duh, that’s why they call it neurosurgery). AND THERE WAS NOTHING I COULD DO ABOUT IT! Risks, yes. Would her headaches go away? Probably not, but she might be able to continue to have the correct use of her extremities and bladder if successful – a plus for an adolescent.
Now, in 2010, my husband is still in pain every day. He can’t walk. Our daughter wakes up with a headache every single day. I hate to see them in pain.
But, they are still with me. Our daughter has a relatively normal active life. Thankfully, the syrinx has significantly diminished – which is awesome and huge. We have each other. I know that I have so many things.
We live on a farm, so I’ve learned about taking care of livestock and how to charge a car battery and do a little work on a four-wheeler. I can cut wood to heat our home if necessary. I can shoot a gun. A country girl CAN survive, after all. I’ve learned I can be stronger physically and mentally than I’d ever thought. I’ve learned how to talk to doctors and ask questions, even if the answer might rip my spleen out. My heart has been broken so many times that I wonder if I even one left.
Most days I am thankful for the blessings we have.
Some days, like today, I’m angry as hell.
by Band Back Together | Oct 8, 2010 | Addiction, Addiction Recovery, Adult Bullying, Alcohol Addiction, Anger, Blended Families, Bullying, Marriage Problems |
The man I married was a drunk. Hm, he used to be a drunk? Well, what do you call him now? When his then-wife served him divorce papers, not a month after their baby girl was born, he lost it. He fell head first in a vat of beer and really didn’t resurface for quite awhile. He struggles daily to not drink. And let me just say, some days are easier than others, boy howdy.
Before we started dating, I was pretty straight forward. I won’t marry a drunk. I’m a daughter of a drunk, and I won’t live like that. I refuse. I still, slowly, started dating him.
When she got information that we were dating, let me just say, the proverbial shit hit the fan. It went everywhere. She said she was going to move and he’d never see his kid again, she was going to get his rights taken away, and she thought about how to get us to break up. Just for the sheer enjoyment of it, I guess. This woman had put this man onto the streets because of the amount of child support he had to pay. Imagine. Imagine having to live in a camper with no running water and no electricity, just to pay child support.
Right now, I can’t tell you the story about WHY he quit drinking. Not yet that is. I’m sure one day I will be able to, without crying and feeling anger and well, wanting to puke. But let me just say it wasn’t pretty.
Fast forward about six months.
7am: there’s a knock at the door.
In my sleepy haze, I stumbled from our tiny room to the front door, hair stuck straight up, and climbed on the chair so that I could see out the front window. Blue car. Crap, its her car.
THIS EARLY?? Ugh. *heart thumping in throat* For half a second, I considered turning around and going back to bed. Letting him deal with it. But nope, I swung open the door and woah, who is this man?
He asked for my husband. More drama.
This is where we learned that his ex-wife had DIED.
She FREAKING DIED. This …this woman who made our lives a living hell, went and DIED ON ME. What the hell?
This “woman” who had put us through so much had just DIED in her freaking SLEEP. I never got to vent my anger at her. She used to hold his child -my stepdaughter- hostage for months. At that point, we hadn’t seen our daughter in nearly six months. SIX FREAKING MONTHS, man. I never got to go to her apartment and beat the ever living snot out of her like I wanted to. I never even EMAILED her to try and get any sort of explanation out of her. I was trying to keep the peace. I just pretended like she didn’t even exist.
So, now I ask you, what do I do with my ANGER?
There are days I just want to scream. ALL. DAY. LONG. There are days when I want to ignore everyone. How do I make that stop? How do I get past this?
How?
by Band Back Together | Oct 7, 2010 | Anxiety Disorders, Coping With Depression, How To Cope With A Suicide, How To Help With Low Self-Esteem, Major Depressive Disorder, Sadness, Self Loathing, Self-Esteem, Suicide |
I’ve battled depression since I was a teen. I didn’t know what it was until late into my twenties. I just felt as if something was wrong with me or like I was a bad person.
I’ve been on medication for the last year. It was working. Working really well. My mood had greatly improved. I was no longer hearing a baby cry random times of the day. My anxiety had lessened. But the last couple of months it’s stopped working. I thought I was just in a funk. It happens from time to time. When I’m in a funk, I feel down and I lose all interest in housework, my kids, my husband, and my life in general. The one thing that keeps me going is school. I love going to school. I love doing the homework. It gives me purpose.
I started to feel down this summer.
I don’t have any friends. People say “you must have some friends,” but the truth is: I haven’t had a friend in over 10 years. When I met my husband it was wonderful. He was my friend and that was all I needed. Truthfully, I think I need more friends. I need someone to connect with. Someone to talk to besides him. I hate this feeling of being alone. I know my anxiety keeps me from talking to people and I need to work on it.
I was in therapy the first seven months that I was taking my medication. My counselor thought I was doing wonderfully. I wanted to be doing wonderfully. But the truth is, I was still having anxiety. Anxiety about leaving the house. About meeting new people. About about being a good enough parent or spouse.
I’m back to the dark place. I’m having thoughts of suicide again. Sometimes, I think sometimes everyone would be better off without me. I’ll think of how easy it would be to wreck my car while I’m driving to school so everyone would just think it was an accident.
I know I need to change my meds again. I need to call and set an appointment up. But I have anxiety about that, too. I don’t want to admit I am a failure. That once again I am not okay. And I worry, what if they don’t believe me? What if I am just overreacting?
What if I get in to see the doctor and I don’t have enough courage to say what I’ve said here?
(ed note: why don’t you bring this post in with you if you’re afraid you can’t talk about it? Any doctor will take you seriously.
Much, much love. Please remember that suicide is never, ever the answer. The Dark Place is a place that many of us have been before. There is hope.
If you are seriously considering suicide, this is the phone number for the National Suicide Prevention Hotline:
1-800-273-8255
Please know that you are loved. And you are never alone.)
