I watched my father have several affairs when I was growing up. By “watched,” I mean he took me to his girlfriend’s house(s), where I sat in the front room reading a book while they disappeared into the back room for an extended period of time.
The conversation in the car when we left was always the same: “Don’t tell your mom we were at XXX’s house – she wouldn’t understand.”
“Okay, Daddy.” The day I said my first “okay” was the day I became keeper of my father’s secrets.
There were times I heard my parents fighting. My mom, yelling out accusations that he had been spending time with this woman or that woman, while my father denied it.
I stayed quiet.
I didn’t fully understand at six or even ten-years old what exactly was going on, or why my mom didn’t want us to be friends with all those nice women. But in my teen years, it started to make more sense.
When I was seventeen, I cheated on my boyfriend. I pushed down thoughts that what I was doing was the same thing my father had done years before.
It became easier a few months later, when I cheated with a second person. And even easier when I went back to the first guy I had cheated with and did it again. I kept it a secret.
My boyfriend started talking about marriage after I turned 18 – we went ring shopping. That night, I left his house and spent the night with someone else, where I also talked about marriage (we had been seeing each other for six months, and he had no idea about my boyfriend-turned-fiancée).
I poured out my heart in my journal.
Was I just like my dad? Would I ever be able to have a relationship that I wouldn’t screw up? I had to make a choice…right?
Instead of a choice, I added a fourth guy to the mix.
In our ten years, I have been faithful. (The fact that my husband is a very jealous guy helps – he would figure out something was going on quickly.) I don’t often think of my cheating past or worry that I will turn out like my father anymore, but today I read a book that brought it all crashing back – a book about a cheating mom and her daughter who grew up to cheat, just like Mom.
I felt the tightening in my chest. And unbidden thoughts of a guy who works at Starbucks that flirted with me two weeks ago come to mind. I have avoided that Starbucks like the plague since he gave me a free scone and told me I have beautiful eyes.
I don’t want to cheat on my husband.
But I realized today, I am still terrified that, one day, I will be unfaithful.
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.
By the time my first baby was born, I had been in therapy for about a year and a half. When I started therapy, I had reached a point where I knew I needed help, and the risk of reaching out for help was outweighed by the burden of sitting alone with the darkness I felt any longer. Therapy helped me a ton and I was in a much better spot when I became pregnant. My husband and I had been married for two years, and though the pregnancy was unplanned, I desperately wanted a baby.
Pregnancy was a roller coaster of emotions, with lots of vomiting. The last couple of months were good, and I felt strong and ready for childbirth, but still unsure of motherhood. My labor was not typical and there were a stressful three days and 20ish hours of active labor that led up to the birth of my daughter. By the time she was born, I was exhausted. The first thought I remember having when my husband placed my baby on my chest was “I don’t know how to do this,” followed by apologizing that she was crying and that I had been too loud during labor. I felt ashamed, like I somehow didn’t do it right. Then I felt doubly ashamed for commenting about the baby crying, because obviously babies are supposed to cry. And what kind of mother would think there is something wrong with her baby crying right after she’s born? No one was putting this on me or making me feel this way. There was also joy and a deep cozy feeling when cuddling my new babe but, mostly, I was scared, tired, and feeling completely unqualified.
The nurse let me “rest” for a few hours after the birth, during which my husband and baby took a nap, and I ate and took a shower. Then the nurse came back in to give me a bunch of instructions on baby care before sending me home with an hours-old extremely delicate creature who completely depended on me for survival. I told the nurse that I was too tired to remember anything and I wasn’t sure I was qualified to care for a newborn. She told me that newborns were made for new parents (which was oddly reassuring) and to set an alarm to go off every two hours all night long, so that I could wake up to feed the baby. She emphasized how important it was that I feed the baby every two hours and wake her up to feed if she was sleeping.
The first night was hard. I remember my husband waking me up because I didn’t hear the alarm going off under my pillow. I don’t remember if the baby was awake, too, in the cosleeper beside our bed, but I do remember that every time I tried to nurse her, she would fall right back to sleep. The next day, I called the nursing support line and they told me she was a “sleepy nurser,” and gave me some tips on how to wake her up to nurse. My mom stayed with us for about three days to help out and my grandparents came to meet the new baby. After about five days, my husband went back to work and I was very much alone at home.
I remember worrying about a lot of things and wanting to do everything right. I remember her gazing into my face as I rocked and nursed her, looking into her big dark eyes and feeling like I was falling down a very deep tunnel. Then weird thoughts would flash through my mind: “What if she can’t breathe while she is nursing, what if she knows I have no idea what I am doing, what if she is a demon? I am not emotionally stable enough to be a mother; what if someone finds out and takes her away from me?” This scared me to the point that I avoided looking into her eyes. I never wanted to hurt my child, but I was afraid of the things going through my mind.
I was especially scared of trimming her fingernails. They were so tiny and her fingers were so precious. I worried that I would snip them with the trimmers by accident. Several people suggested that it was easier to chew baby nails than to trim them, but every time I thought of this, a picture would flash into my mind of my sweet baby’s finger chewed to a bloody nub. Sometimes those flashes would come when I was trimming her nails and I started trimming them only when I was feeling well rested, for fear of having one of those thoughts and freaking out.
There were other things that I knew I weren’t right too. Anytime I saw one of those child safety tags they put on every piece of baby gear, I would visualize whatever horror they warned about happening to my baby. I would lay her in the Pack-n-Play, catch a glimpse of the warning label and have a flash of finding her suffocated. Same with the baby carrier, the stroller, and the baby bathtub. She would cry when my husband tried to put her to sleep at night and I remember worrying that my husband was sexually abusing her, and wrestling with that being a totally crazy thought, but still feeling that I needed to protect her from him. (Please note my husband has never and would never do this. I think this just came up in my mind because my mother had been sexually abused by her father when she was a kid and I was just having really bizarre thoughts). Instead of resting, I would stay awake listening to them on the baby monitor, crying and worrying until she went to sleep. Once she was asleep, I would lay awake in bed thinking about all the horrible crap that could happen, plus my to-do list, and what a fucked-up person I was.
These thoughts were scary to me, but they weren’t entirely new. During the deepest part of my depression a few years earlier, I had similar gruesome flashes any time I saw my husband’s X-Acto knife. That gruesome image was always of the knife slicing my wrists, which is why I finally went into therapy, though I never told my therapist of my concerns about the knife. I was afraid that if I told her, she would have me committed or the have the baby taken away. I was not suicidal, did not use self harm, and absolutely did not want to kill myself.
When my maternity leave ended, I went back to work. I was incredibly sleep deprived because my baby would not take a bottle while I was gone and would nurse every two hours all night long. Her weight percentage had gone down and the doctor was concerned about her getting enough milk and gaining weight. I kept up the night feedings, tried different things to get her weight up and worried about everything. The gruesome images and thoughts kept up for a while, too. I can’t remember exactly when I stopped having them, but I remember having them when some friends came to visit when my baby was about six months old.
Around that time I attempted to handle my anxiety by smoking pot or drinking after I put the baby to bed at night. This helped me numb out a little but, ultimately, it added to my anxiety. Before becoming pregnant, I drank and smoked a lot, and it was too easy to fall back on those unhealthy coping mechanisms. I stayed in therapy for another year and a half for post-partum depression, and my therapist helped me “fact check” some of my irrational fears, like that my baby was going to starve to death or that my husband couldn’t adequately care for her while I was at work. She also helped me figure out what self care was, and generally made me feel loved and supported. Even though I never disclosed everything that I was experiencing, having her support was extremely helpful. I will forever be grateful for how kind she was to me and how much she helped me during this time.
Eventually, my husband and I decided that we were both worn too thin with our work schedules, and figured out how I could leave my job and stay home. When I left my job, I also lost the mental health care coverage I had through my insurance. My therapist and I made a self care and emergency plan in case the depression came back. When I ended therapy, I decided to stop smoking pot entirely. Facing shit without an easy numb-out was harder than I thought it would, and the first three days, everything felt very intense. Even though I didn’t smoke “that much,” I knew it was important for me to quit and develop some healthier ways of being in the world. I also joined a support group, took an online self care class for moms, started exercising, and found a really cool mental health video game that taught me about different aspects of self care.
When my second baby was born two years ago, I asked for more support from my family after the birth and I had a community of moms to talk with. I kept track of my two week timeline for depression and was more aware of how that looks in my own mind. Although there were things that I worried about and struggled with, I did not have any of the scary thoughts or gruesome flashes as the first time around. I did feel overwhelmingly joyful about gazing into his newborn eyes. It was a totally different and less scary experience. Having a completely different post-partum experience the second time has shown me how much of my experience was PPD and not just typical new motherhood.
I hope that my story will encourage other moms to get the support they need if they are experiencing PPD after the birth of a baby or depression years later. It can be hard to see the symptoms when you are in the fog of it, and it is worth seeking help if you aren’t sure about what you’re experiencing. Healing is worth it. You are worth it.
We all have letters we’d like to send, but know that we can’t. A letter to someone we no longer have a relationship with, a letter to a family member or friend who has died, a letter to reclaim our power or our voice from an abuser. Letters where actual contact is just not possible for whatever reason.
Hello Ex #1. You were wonderful. You were kind, thoughtful, loving, attentive. You were there for me through a very rough time when my parents were divorcing. You were loved by all of my family. You were an amazing first boyfriend and I loved you with all my heart. Thank you for being such a wonderful first.
Hello Ex #2. You were revenge on my parents for splitting up and “ruining everything”. You were MANY years older than me. You were fun because you provided everything I needed to escape my shitty teenage reality. I drank and did drugs. You became a heroin addict. I became pregnant. I made an incredibly difficult decision to abort and then a really smart decision to leave you. Please stop trying to “friend” me on Facebook. I am never going to accept the request. You are in the past. Stay there.
Hello Ex #4. You were very charming, sweet and funny. We had so much in common. Eventually I moved in with you. Then you stopped working. I supported us (and your friend) for two years. I kept giving you chance after chance to make something of yourself. How could I leave you high and dry? You had no job. You’d be kicked out of the apartment. Where would you go? What the hell was I thinking? When I finally left, I did it all wrong, but you were just fine. You found someone else to take care of you. I pity her. I was proud of me for thinking more of myself and wanting more for myself than what you were giving.
Hello Husband. It took these exes and so many more for me to grow up and learn self-respect; to learn how to love someone else correctly. And to learn to be loved the right way. Yes, sometimes we argue, but you know what? Those arguments are healthy. It took me a lot of years to learn how to argue healthily. We communicate, we share our feelings and our points (sometimes loudly, but always respectfully), we compromise where it’s appropriate, and give in sometimes, too. We work together to make us work. You always think of me, my needs and how things will affect me before you make decisions. I’ve learned to do that, too. You love me so much. I love you equally. We have a beautiful life and three beautiful girls. We have had some REALLY hard times in the nine years we’ve been married. But we work through them together and we are stronger for it. My love for you grows and my respect for you grows. You have my trust.
If you are a friend, you’ve no doubt heard me refer to the young Prince and my daughter, Sam. You may not have heard me discuss My Dude, who will be 20.
My Dude has lead a life of struggle – he’s no angel, despite his problems and all of our efforts, we could not help him. We tried our best, we failed him, but when he is ready we will try again, and again, and again, and again.
This left his mark on each of our souls in this family; they say when one person has a disease, the entire family is sick. (Whoever the hell “they” are, that’s about the only thing “they” ever got right.)
He also left his marks on our house. Walls written on, slammed doors, the broken dishes. They’re really silly little things in the grand scope of things, when you consider how many times we’ve had to start over: house floods, hurricanes. When his lows were so low and the anger beast would rage out of his fists and into the walls, nothing was safe.
For years, the holes would multiply, weekly, monthly, until eventually, I learned it was silly to fix them because they would come back, bigger, with more vengeance.
So we stopped. We stopped fixing the holes, we focused on simply surviving the best we could. We made horribly hard choices that parents shouldn’t have to make. He grew bigger, stronger, and his disease became more pronounced while he became increasingly distant.
Two years ago this week, what little was left of my world crashed down.
My Sam-I-am, left for the university; she’s my only daughter, my first born, my best friend, the first thing I had ever done right, and my biggest confidant. I wanted her to escape the madness, to spread her wings and go, but the selfish child in me wanted my friend, my baby, my daughter to stay. Two weeks before she left, I received a medical diagnosis that I kept secret for three weeks so she would go, as she’s the kind of girl who would give up her life to stay behind and help.
The diagnosis was so shocking, the amount of research was mind boggling while coping and adjusting our lives and goals around it. But we did. A couple months later, Dude had a break down, freak out, and then he left.
I have spent one and a half years without him, though he did briefly return twice. It didn’t go well either time, and both times he left on bad terms. Once, after a physical altercation with me.
Every night I go to bed not knowing where my son is, if he has eaten, if he is safe, if he is alive. When my phone rings from another state or an unknown number in the middle of the night, chills run up my spine and I feel like I will vomit, as I prepare for that phone call that no parent wants. Because I don’t know. I beg him to get to a doctor. A hospital. A police station. A shelter. Anywhere.
He’s never had a job. He’s never driven a car. He receives no welfare, no medicaid, no anything, he’s not a drain on your tax dollar, but does have mental illness and he is walking around this country. How has he survived? I have no idea. He is good looking, very good looking. He’s also very smart, and a great con man. I love him dearly but I’m not looking at the world through rose-colored glasses. I wouldn’t want anyone to cross his path because honestly I have no clue what he is capable of: he hasn’t been on medication for over a year and I can’t legally make him take any, as he is an adult.
So for this past year and a half, when I don’t hear from him for a week or longer, and I worry, or I get a call of him just talking crazy I can sit on my stairs and run my hand over that hole in the wall and try to absorb some of his pain. Because I am his Mom. It’s my job. Kiss the booboo, make it all better, right?
But, I can’t. I have never been able to make it all better. He goes from loving me to wanting me dead in one deep breath. So I leave the holes in the wall to remind me of his pain, to remind me of how I can’t fix him, how I can’t help him. All I can do is love him, remember that he is real, even if he isn’t here.
Over the last three weeks he was calling 10-15 times a day, and full of tiger blood and all grandiose, like Charlie Sheen. For some reason the stars lined up and a guy who did drywall came by, so I hired him and paid him. My dad went in the hospital last Friday. I spent the entire day in the emergency room until he was admitted. I got home and at midnight I got a call from another State that my Dude had been picked up, they wanted to know about his mental health and he had asked them to call me. I had to say horrible things about him, to strangers, who think I that am a mother who doesn’t love her son. What they don’t know is I love him enough to say those things so they will get him help.
In a strange twist of fate. The law being what it is, I can’t find out if they have my son, if he is alive, where he is, how he is. Nothing. Tomorrow will make six days since I have had an update and it’s eating at me, yet I have to go on, with work and life and baseball games for the Prince, Sam-I-am turns 22 on the 11th and graduates on the 13th. Still, I know nothing about my Dude. I kick out jokes, posts, tweets, pictures, but why isn’t my phone ringing, DAMN IT? I am his mother, I need to know he’s okay.
I went to the stairs today, put my hand on the wall where the drywall had been fixed. I just sat on there and felt I couldn’t have betrayed him more if I had tried. I’m so sorry, Honey. I hope one day you will understand that I love you to beyond the universe and back.
To all the parents who feel like they are failing, messing up, being judged, on the edge or losing it: you will survive. While I can’t guarantee your sanity, you will survive.
Fortunately, my daughter Sam, who has ben recently diagnosed with Triple Negative Breast Cancer, has medical insurance through her employer.
As long as she can keep her job during all of her treatment, it covers a fair amount of some of her costs. At least after her catastrophic cap was met for the year (didn’t take too long to reach it).
We all consider the deductibles and copays, and prescription copays in our lives, but be sure to check your policy on investigative drugs. Medical trials. Travel and time off work. Did you know that many insurances do not cover care if the “Standard of Care” doesn’t work? Some don’t cover food unless it’s eating out instead of buying a loaf of bread and lunch meat. Some only will cover hotel rates available to AAA members in the 1950s. Some will pay a portion of their “idea” of what your gas should cost, but only on the DATE of your appointment, even if you’ve had to drive out of state the day before or after.
Pray you never need to know the intricacies of your health insurance. Even if you mange to jump though the right hoops and snag every receipt, it would take a team of dedicated government trained legal assistants to maneuver through the paperwork. Oh, and then you can wait for over a year for any reimbursement.
Moral of the story.
Including your 20-something year old child should have some type of additional policies, because my 20-something had never been sick in her life. She had to use her insurance for the first time and we learned a very hard lesson: chronic health issues and cancer do NOT care about your age, your gender, your race, your educational level, or your income bracket. Buy that add-on policy you pray you never have to use. I mean, yeah, it’s going to crimp on picking up that name brand mayonnaise, skip a few cups of designer coffee or don’t upgrade your phone to get it, because you don’t know how important it can be.
Pray you never need it, never have to walk this walk or fight this fight while being financially sucker punched at every turn.
Traveling 400 miles for treatment in Houston, TX, at MD Anderson alone adds up. Lodging is expensive. On her third trip out of state, she and I were in Houston away from home and family for several weeks straight. After that, we’ve got weekly visits for treatment and tests will go on for the foreseeable future.
Imagine you are just finishing college. You’ve invested all these years into student loans and grades and worked from the bottom up in a field helping others, so you’d be all set in your field after just one more test. You’re 20-something, but you’re invincible; you’ve never been sick.
You’ve got all your ducks in a row and have considered every possible decision.
You have spent your entire life on college student budget working your own way through school, accumulating debt, but going into a field where you are guaranteed to be a super star. Soon, you are going to kick open the doors and rock the world.
You dream of the vacations you didn’t take because you had to write papers and pay for copies and laundry, and you begin to plan them in your head. You go to sleep, dreaming of how great it’s all going to be now that you’re done. Once that last test is passed, you can consider your future. You have dreamy conversations with your parents about how one day not only will you buy a house, but this will have a little retirement cottage in the back for them, and they won’t have to worry about anything.
You tell your baby brother to keep up his grades, you bribe him and tell him to work his way to and through college, but you will be there for him if there are any hiccups along the way.
Your phone rings on a Friday afternoon as you’re in a store looking for a pink bow tie for your little brother’s prom coming up this weekend. It’s the doctor you saw, and out of nowhere, he says you have cancer and he will see you again next week. Just like that.
You’re alone. All alone.
You’re holding a bow tie for the baby brother you adore and have dressed his entire life. Your life just changed. The air is sucked out of the room, and nothing moves. You walk over to the dress shirts and begin looking for his size, but now you can’t remember for sure if he has that adorable little boy neck or of he has now grown into a lumberjack.
You call your mom to check, but instead, “I have cancer” falls out of your mouth.
Everyone’s life just changed and it all hits you.
Imagine dropping everything to live in a city far away for a month while still having to pay rent, utilities, and a car payment. Leaving your bed, pets, plants, and family behind. Being afraid of checking the mail or answering the phone: there will be bills in there with numbers that look like jackpots for the PowerBall.
Seeing things you never wanted to see. Learning a language you didn’t want to learn (Cancer Speak). Realizing you aren’t in invincible 20-something with the world at your feet, that you now must depend on the kindness of strangers when you don’t even recognize yourself in the mirror.
In the meantime, you travel every week to Texas, three states away, sleep, eat, get prescriptions, anything else you might need. Make sure you keep your job so you can keep your insurance and have a life when this is all over. Oh, also, you’re fighting cancer, so we are going to dump some of the most horrible chemical combinations known to mankind into your body and you are going to be sicker than you could ever possibly imagine.
Lucky that our family is tight. We pull together we pull through. All of my kids have sacrificed what they have and the course of their futures for family members and this is no exception. WE ARE LUCKY.
Samantha’s cancer is rare, which means she’s interesting to the scientific world, which opens us up to the option of seeing the Most Genius Medical people on the planet who study her type of Cancer. WE ARE LUCKY that we were able to get together the resources to get her to the people who could try to help her in the first 3 months.
WE ARE LUCKY that friends, family, and strangers have taken it upon themselves to raise money, cook dinner, open their homes, offer a ride, send a card, give a hug, and pray for us.
We are simply terrified, we know the first chemo regimen and treatment plan failed. We see the doctors and nurses faces when they hear her diagnosis. We realize what it means to be in trials, research programs, and testing studies. We know that we can only get the only hope kind of help out of state. We don’t feel very lucky because we know as a family that as the expenses, bills, costs pile up, the income has gone down on several fronts. Things like car repairs, broken air conditioners and power going out don’t stop because of cancer.
We don’t feel lucky because there’s interest on the credit cards and interest on the payments, and we are paddling like a herd of ducks in a hurricane just to get thru every day. We don’t feel lucky because it’s unnatural, it’s unnatural and soul-emptying to be a parent whose child has cancer. We don’t feel lucky that ”she’s grown up.”
We are her parents and she will always be our child. We don’t feel lucky that “at least she doesn’t have kids,” because she loves children and wanted to be a foster mom, because that’s who she is.
We don’t feel lucky because no one who has cancer is lucky.