Sometimes, you lost something so devastating that you don’t know if you’re going to be able to breathe. The Band is paying tribute to the losses you’ve had. Please share with us a loss you’ve experienced (doesn’t have to be a person, can be a dream, or a pet, or an item).
I am infertile.
We have been trying to have a baby for years to no avail. I will spare you the details, but I was approached by a potential birth mother who is a friend. She is pregnant, doesn’t want the baby, was going to have an abortion and decided she didn’t know if she could go through with it. She asked if we might be interested in private adoption.
YES, oh YES, it would be a dream come true.
I did it. I got my hopes up against all logic and warning from everyone.
I got a text today that says she is not going through with the pregnancy and is having an abortion. I am so sad right now. I am heartbroken at the needless loss of a life that could be my baby.
I had such a tight lid on this I never let myself feel this hope or dream. I let the lid off and now I am devastated.
Where do I go from here?
This year, it’s time to take action. It’s time to pull our heads out of our asses and make some plans for world domination.
How? By telling the world, not what we want to do this year, but what we will.
So what will YOU do this year?
It’s already been a rough year for me. Just seven days in, my five-year old son was diagnosed with Leukemia. It has floored me. I am still in shock. Daily I struggle with the WHY WHY WHY of it all.
Still, I can make this year my bitch. I cannot – and WILL NOT – let the whole year be a sinking ship.
I will take care of myself. This means giving myself a break, letting myself off the hook, taking days off work when I need to, continuing my healing through therapy, taking naps… It also means getting dressed every day, showering, and not letting myself slip into a depression. I will continue to do things that bring me joy – like travel – and try to let go of the worry.
I will be there for my son. I will advocate for him and help him create good memories to balance out the less palatable ones. I will continue to give him a stable home life with structure despite the bomb that has gone off in our life.
I will keep working toward my goals – personal and family goals. My husband and I have plans for this year and next – plans we’ve been working toward since we met – and I will not let them get derailed. It would be easy to push everything aside, but the RIGHT thing is to show our son how to live in the face of adversity.
I will nurture my primary relationship. I’ve been stressed and overwrought and altogether tapped out emotionally lately. It’s okay to have low points, I know, and my husband and I are helping each other as best we can. Our relationship is important and provides a foundation for our life as a whole. If we take care of our marriage, the rest of our life will benefit.
I will allow myself to stumble.
I will give myself permission to be less than perfect.
I will celebrate my victories.
And I will make it through this year.
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.
And she did.
I am so sad I wasn’t there when it happened.
I am also grateful.
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.
She is my ray of sunshine.
Guys, here’s the thing. I’m tired. Not like “I might grab a nap” tired. More like “I would like to lay down, and become one with the ground and let flowers sprout out of me” tired.
I have to admit that I’m a fighter. I’m a single female with a house, yard, full time job, two dogs, a cat, some fish, a couple hobbies, anxiety, depression, and an autoimmune disorder.
The bit that gets me is that part of my job is helping piece together information on death investigations. There is nothing more soul sucking than a steady stream of autopsy reports, except for maybe watching the slow demise of another human being. That’s eight hours of my day. I love my job. I feel committed to it, and we do good work. It’s just so hard.
When I come home, I have lovely beautiful friends who need me. They need me to support them, and have their backs. They have problems, and I feel like I should help, but I’m tapped out. I’m dry and crumbling. I want so badly to help, but my well is dry.
I don’t know what to do anymore. I don’t have anyone to tell.
I always thought that PTSD was something soldiers developed – I was naïve; had no idea anyone could develop Post-Traumatic Stress Disorder. After my teenage son began to get into trouble, I assumed we’d become another statistic – a family with an out-of-control teen.
After we started family counseling, my therapist suggested that I try private therapy. About a week into it, I was diagnosed with PTSD. The therapist said were several things that led to PTSD.
PTSD, or Post-Traumatic Stress Disorder, can occur when something horrible or traumatic has happened in. It causes stress every time you encounter a situation is similar to the previously-experienced traumatic events.
I’ve had a few types of traumatic events. I had a rocky relationship with my father growing up and then his death was both very sudden and very traumatic. An abusive relationship with my ex. I’ve experienced abuse from my son. Lastly, I was bullied by a girl from second grade all the way through high school.
My reactions to everyday situations can be more intense than they need to be – but whenever I am in a stressful or threatening situation, I relive past experiences. It’s hell, reliving the same horrible day over and over.
Once, when I saw my grade school bully in the grocery store, while I was there with my kids and we were checking out. The sound drained out of the store. My heart began to race. Blood pumped in my ears. My face got hot. As soon as I was able, I grabbed my kids and ran for the car. I must’ve driven break-necking speeds home, but I don’t remember getting there.
I had a panic attack after seeing this woman! We live in a small town and the odds of running into her are probably higher than in other areas, but I never see her. When I did, I hit fight or flight mode, and flew! That was six years ago.
Since I began therapy, I’ve seen her again. My daughters were with me, and this time I made sure to make eye contact with her as I turned to my daughters and said, “Girls, let’s go check out. I think we’ve got all we need now!” I turned and went to check out. As we left I felt so proud of myself for facing her, and not fleeing like a chicken facing slaughter!
Thanks to the ways she traumatized me, I always tell my kids, “Don’t take anyone’s crap at school!” Recently my daughter was getting harassed by a staff member at her middle school. I contacted the principal and reported her. This woman has not bothered my daughter since I reported her; threatened to file a sexual harassment suit against the school.
Since starting therapy, I stand up more than I used to. Despite all the reasons my therapist thought that I was traumatized, I think the bully and my father’s sudden death were the two that really affected me.
I was a victim of domestic abuse, but I came to terms with it, and took a stand. I left my then-husband and married the man responsible for making me feel like I was worth more. I call him my White Knight because I was considering suicide when we met – he saved me.
My son and I have resolved many of our issues and are working on our relationship; things are getting better.
I still have issues with my dad’s death.
See, I was blamed for him dying. He died from cancer 14 years ago and afterward, I was told that being around stressed him out – caused his cancer to return after it had been in remission.
Being blamed for his death is a hard thing to overcome. But this year, I was able to make it past his birthday and the anniversary of his death (exactly a month apart) without being a total mess!
To all those out there who have been bullied, abused, or lost a loved one, don’t assume you are strong enough to deal with it on your own.
PTSD snuck up and took over my life. I’d been miserable for years because I didn’t know what I was trying to cope with on my own. I suffered for years without understanding why, until I didn’t want to live any more.
Now, I cannot imagine having missed one day of my kids lives. Good or bad, I want to be there for it all. When they graduate from high school, when they get married, go off to college, when they start their own families. I want to be there, protect them from the problems I had. To tell them, “You’re better than this!” Or smile for them after they avoid bad situations entirely!
Don’t hesitate to get help for PTSD. It really does make a difference.
I never wanted to go to therapy every week, but I am, and I am doing much better. My therapist told me last week that he thinks I am nearly ready to be done. I think that’s a remarkable thing to hear – I am better, I can do it.
My therapist told me recently that I’m a remarkable person for dealing with what I’ve experienced, and still managing to smile. I told him that despite any issues I’ve had, I have great kids and a loving husband.
That’s all I could ask for!