by Band Back Together | Sep 13, 2010 | Baby Loss, Coping With Baby Loss, Grief, Help For Grief And Grieving, Livng Through A Miscarriage, Loss, Miscarriage, Neural Tube Defects, Pregnancy |
Our timing was so perfect. We tried casually to conceive for a couple months, then got pregnant the first month I charted my temperatures. Our baby would be born in May, a month I thought was perfect to have a baby. I’d be off all summer on maternity leave, and I’d still be thirty–a milestone that felt like a relief after our decision to start a family seemed to come not a moment too soon. I had almost made it to the end of the first trimester when I started spotting. We went in for an ultrasound and the baby measured 9 weeks, when I knew for sure I should have been closer to 10 weeks… but there was a heartbeat! We had some sweet relief for a week, in which I felt comfortable telling a few more people at work–because the chance of losing your baby after you’ve seen or heard the heartbeat goes down dramatically. But then my hormone levels seemed to be falling after another blood draw. Dr. Google told us that it was normal for HCG levels to fall later in the first trimester, so we tried not to go wild with worry over a weekend spent waiting for Monday’s ultrasound.
Our baby had grown and developed more in the week since we had last seen it, and there was still a heartbeat. The ultrasound tech spent a long time looking at the baby, doing things we didn’t really understand like examining the blood flow. She gave us a couple pictures and said “good luck with everything.” We went back into the waiting room for the midwife on call to let us know the results. They handed me the phone across the front desk and she started by telling me that yes, there was a heartbeat and that was a good sign, but… BUT. The nuchal fold looked thickened, which was a sign of a chromosomal abnormality. We would need further tests and they would help me get the screening scheduled. She was going to come in to talk to us more. I looked across the room at Jed in utter terror. He rushed over to me and I couldn’t believe I was getting this news over the phone in the middle of the waiting room. I started crying instantly and they ushered us into an empty exam room.
We held each other, crying and afraid, until the midwife came in to expand on the bad news. What the tech saw in the ultrasound didn’t look good–the thick nuchal fold and an omphalocele, I would probably miscarry. In the meantime we would go to a big nearby hospital for a better ultrasound. Either way, we would probably “have some decisions to make.”
That was a Monday. The next ultrasound was on Friday. Neither of us went to work that week. We stayed in, crying, devastated. I needed help getting out of bed every morning because the sadness was paralyzing. We distracted ourselves by painting the kitchen and baking zucchini bread. Our 4th anniversary was on Thursday. I was 11 weeks pregnant with a dying baby.
Friday arrived and we trekked through the hospital to Maternal and Fetal Medicine and one of the top ultrasound doctors in the country. The room had a second ultrasound screen on the wall facing the exam chair, so the mamas can have good views of their babies. I couldn’t decide how much I wanted to look. My husband wanted to punch the resident who hovered around, looking at the screen with barely veiled repulsion. I didn’t notice; I was busy trying to survive. After a really long exam, we sat in a meeting room with the doctor and a couple nurses, where the doctor explained that our baby had edema–cystic hygroma–all over its body, to a level that indicated a chromosomal abnormality so severe the baby wouldn’t survive. There was no way to predict how long I would stay pregnant. I could miscarry that day, or I could go to term and deliver a baby with a certain death sentence.
Termination for medical reasons was suddenly an option they would help me look into.
We went home in shock. It was impossible to comprehend the gravity of this most horrible thing that had ever happened to us. We made the heartbreaking choice to terminate our much-wanted pregnancy and scheduled the appointment. There were only a couple places in our area where I could get an elective termination, despite it being for a pregnancy with no chance of a positive outcome. My midwife wanted to help me but there was nothing they could do in their office.
While we waited for that awful date to arrive we both went back to work. I was like a ghost. People were sad for me and each hug made me cry. I also kept catching myself in “preparing for parenthood” mode—bookmarking an article about librarianship and parenthood, making note of the book about treating common childhood illnesses at home, realizing my new shirt would also make a good maternity shirt. Telling a coworker about how we thought we might dress up our 5-month-old as an acorn for Halloween next year. Falling silent and trying not to start sobbing. I realized my life wasn’t in that place anymore, but my heart hadn’t caught up. I hadn’t yet fallen out of the habit of preparing for baby.
Late that week I felt like my symptoms were diminishing–my nausea was suddenly totally gone. I made a last-minute appointment with the midwife to check for a heartbeat. If there wasn’t a heartbeat, I wouldn’t have to go for the termination and I could stay in the care of my midwife for whatever happened next. The ultrasound tech–who I now reflexively hated–told me I didn’t have to look at the screen while she checked for, and found, the heartbeat. It felt so cruelly wrong that I had almost been hoping for the opposite. I wanted the suffering to be over, for us and my poor sick baby. The midwife understood my emotional state and emphasized that when abnormalities this severe are found this early, there is no chance of survival.
That weekend we went to have dinner at my parents’ house. We’re close with our families, and in a terrible piece of timing, my parents had been in France this whole time and dealing with our news on their vacation. This also meant seeing my sister-in-law who was also pregnant, with the same due date as mine. You read that right. She’s not the most empathetic person, and this was the first day of the next seven months she spent avoiding us.
The next day we arrived at the family planning clinic at a different big hospital in the area, first thing in the morning. The only other people in the waiting room were a small cluster of people centered on a very sad woman. They were obviously there for the same reasons we were–the pain bubbles around all of us were huge. We got in to see the doctor and asked if we had any options as far as anesthesia, because we had been told that today we’d decide with the doctor whether I’d be put to sleep. This seemed like news to the doctor, who kept talking about how it was less expensive to do it the way they usually did–local anesthesia only, awake the whole time. That was pretty much the last of our concerns, not to mention the fact that amazingly my insurance was going to cover it either way and we ended up paying $47. But we just numbly moved forward. It was happening. She flipped on the ultrasound and we saw our baby for the last time, laying peacefully in my womb, no heartbeat. I suppose we could have walked out right then, but it was over for our baby, and we wanted it all to be over so we could move on with our grief. Three hours later, the baby was no longer a part of me and we were on our way home, empty. The D&C was painful and traumatic. It couldn’t have taken long, but it felt like forever. The physical pain was a distraction, but so inconsequential to this pain I was positive was going to be lifelong.
Our terrible limbo was over, but this was only the beginning of our suffering. I write this now almost a year out from the nightmare, with a baby girl who appears to be healthy kicking in my belly, but the intervening months–and subsequent bonus chemical pregnancy just to show how very cruel life can be–have changed me forever. I will never have the innocence of getting pregnant and assuming I’m going to have a baby. I can still place myself right back in the pain and terror of the slog of grief.
by Band Back Together | Sep 11, 2010 | Baby Loss, Coping With Baby Loss, Grief, Help For Grief And Grieving, How To Help A Friend With Infertility, Infertility, Livng Through A Miscarriage, Loss, Miscarriage |
The first miscarriage was the one that destroyed me.
I lost four more babies; suffered a failed adoption; and barely saw my first born before she was yanked from between my legs – limp and drenched in a dark, life-sucking coat of meconium – then rushed to specialists trained to cheat death.
But that first loss, when my body cramped and convulsed and spit out a baby we so desperately wanted, is what shattered my heart. It robbed me of hope and started a years-long spiral into grief, despair and, ultimately, nothingness.
Exhausted by the anguish and terrified of feeling it again, I turned off as one loss became two. I numbed myself as two bled into three, and the doctors called me infertile. I became a shell and didn’t feel the fourth miscarriage or remember the fifth. I disassociated from my body when the doctors told me they intubated our first born and knocked her out after she had an eight-minute seizure. That person, sitting speechless and alone in the hospital room after they rushed our baby to a first-rate NICU at a different hospital in another city? That wasn’t me.
But it was.
I was 30 and married just a few months when I first got pregnant. I didn’t know much about babies, didn’t have friends who had them – or lost them. And I certainly never heard the statistic that as many as 1 in 4 pregnancies end in miscarriage.
We pored over baby name books at the bookstore and delighted my parents with the news. We heard the baby’s heartbeat and marked the due date on the calendar.
Then we saw blood. Just a spot. “It’s common in early pregnancy,” the nurse told us over the phone. “Try not to worry.” So, we didn’t. We believed her. We didn’t know enough not to. Idiots.
Then I bled more and they asked us, ever so calmly, to come in to the office. “Let’s just take a look.”
I sat in the passenger’s seat while Kent drove down the interstate and I tried not to think this was anything more than typical bleeding. Truthfully, though, I feared otherwise. Kent excitedly pulled an ultrasound photo from his suit pocket as we readied for the doctor; he couldn’t wait to compare the growth from the last appointment to now.
Ten years later, I can still see the inside of the car and the exit from the highway as it was that day that changed everything. I see the inside of the doctor’s office and Kent fiddling with the black and white photo.
“Put it away,” I snapped nervously. Sure he was jinxing the luck we needed.
And then, quick and impersonal as a business transaction at the bank, the doctor inserted the ultrasound wand, marked the top and bottom of the little bean with an X and explained that he didn’t see a heartbeat.
“Put your clothes back on and when I come back in we’ll talk,” he said.
We left the office in silence, a short, poorly-written book about miscarriage in our hands and an appointment for a D&C on the books. The tears started in the car and rushed with scary abandon once I crumbled on to the couch at home. I hid my face and howled into a pillow. Angry, terrified, lost.
Kent made phone calls to my family, talked to my boss. He tried to explain what we didn’t understand. How it happened. Why? When.
I agonized over the “when,” made myself sick flipping through the calendar as I tried to imagine what I did the day our baby died. Because, of course, I killed the baby. We went camping a few weekends before: did scrambling over rocks and hiking to exhaustion kill the baby? I spent too many hours at the newsroom: did I drown the baby with the stress of deadlines, interviews, and vapid politicians?
The baby fell out of me in horrifying pools of blood and fluid and mangled clots the night before the doctors planned a sterile procedure on a cold operating table. I was alone in the house, doubled over with cramps when the first gush sent me running to the toilet. Over the course of the night, Kent phoned the doctor several times to ask about the shocking volume of blood spilled in the tub, the toilet, the bed, on the floor.
We left the doctor’s office the next morning in silence. We stopped for bagels – because I was famished after losing so much blood – and ate without a word: chewed food, swallowed milk, stared past each other. Like robots, if robots could eat.
Kent went to work while I called in sick the next few days, stayed home and wept with little reprieve. I listened to angry, pulsing music at deafening volume to drown the mournful wails of my heart. And I wrote a letter to the baby I held in my belly but never felt in my arms.
“Today we were supposed to see you once again, all flickers and squirms and holy, miraculous life,” I wrote. “Instead, we shall say goodbye. We came to church to do it. We had hoped the baptismal waters would rush one Sunday morning in June as the priest held you aloft and the congregation craned to see your pink body and dark hair. God would welcome you then, we thought. We didn’t know He’d want to take you now…
“Now, we entrust you to Him. Though we wanted so desperately to hold you and touch you. Love you. Watch you. Clothe and bathe and feed you. Nibble your feet and tickle your ears. We couldn’t. But we did love you. And we will miss you. You can be sure.”
I signed the letter, then Kent did too and we traveled to church to leave a pink tulip at the base of the baptismal font, a symbolic gesture to signal the start of our healing.
Ten years later, I pulled the letter from the envelope and found a leaf from a Japanese maple and a helicopter seed tucked in with it. Signs of life lost, just like our baby.
I changed, but I am not healed.
by Band Back Together | Sep 10, 2010 | Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Grief, Help For Grief And Grieving, Loss |
A little while after Charlie died, a girl I volunteered with at the Ronald McDonald House shared her idea with me about the grieving process. She had lost her 5 year old to Cancer a few years earlier so she had experience and was already a member of the “Moms of Angels” club.
She said grieving was much like a rock in your shoe.
And you can’t get it out. Can’t take the shoe off and shake it out. It is there and always will be.
At first it cuts into your heel and ball of your foot causing you to bleed and be in pain. Then after a little while, you can wiggle it around and get it into a spot where you can’t feel it too much.
But every now and then something will happen and make that rock get under the heel of your foot – causing you to bleed and be in pain. So you go through life with this rock in your shoe that sometimes causes you a lot of pain and sometimes is just “there”.
I thought that was very interesting at the time. And now I know that it is very true.
I attended a visitation for a friend’s stepdad about 5 years later at the funeral home where Charlie was. I remember our visitation almost too vividly. I remember greeting hundreds of people (seriously, like 500) – local friends and friends who had driven several hours or had flown in for our 24-day old baby’s funeral. It was very humbling. I had been in that room for various visitations over the last 5 years with very little pain. But tonight for some reason when I walked in the room, I felt physically ill. Like I might throw up. I remember feeling that way the first time I went in the church where we had his service (my home church) and that morning they just happened to have a baptism and sang “Jesus Loves Me”. Again, I felt physically ill.
You never know what is going to trigger one of those “Moments” and the moment might not make you cry and get all emotional or anything, but it puts a knot in your stomach and makes your hands shake and just makes you feel that rock in your shoe.
But I’ll be able to wiggle it back out of the way and go for a little while until it decides to get under my heel again. This is how we are able to go on.
by Band Back Together | Sep 8, 2010 | Anniversary Reactions, Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Grief, Help For Grief And Grieving, Loss |
Ever since 2000 when our daughter Elli was born with life-threatening heart defects and nearly died three times the first three weeks of her life, I’ve experienced blindsides.
I wish I referred to the movie.
Blindsides are swift and completely unexpected emotional breakdowns, often experienced when sharing your story with a stranger or a group of strangers.
As the parent of a child with special needs, I have shared Elli’s story countless times with medical personnel, school staff, new acquaintances, and random strangers we’d meet out in the community. I have had the opportunity to share our story for some college classes for special ed teachers and therapists, and for potential donors to our hospital.
I never know how those presentations would go. Will a blindside slam me into a teary mush pile this time? Or will I be able to communicate clearly and strongly?
When Elli passed away a year and a half ago, the blindsides changed. They began striking at any time, in any place, doing anything or nothing at all.
Anything.
A wisp of a memory… her sister’s laugh that sounds exactly like hers.
A glimpse of a familiar-but-no-longer-visited place… driving past her aquatic therapy pool.
The scent of the hospital’s blanket warmer, so comforting after yet another general anesthesia.
The discovery of a long-buried personal item… her bath towel.
Anywhere.
…sitting at the piano in church on Sunday.
…driving down the highway.
…laying in bed, drifting off to sleep.
…watching a movie with my husband.
…waiting for my son’s school bus.
At first, they assailed me daily, even hourly. With time, less frequent and more unexpected… except in the fall near the anniversary of her death and in the winter near her birthday. Those are memory minefields.
At first, the pain was bitter, cutting deeply, exposing raw wounds. Now it’s more of a wistful dull ache, a pain of long separation, hidden under scar tissue and wrapped in hope of heaven one day.
Have you seen me? The random weeping girl in front of the yogurt at the grocery store? If you do, would you spare a tissue? I promise, if I run into you, eyes red, face puffy, I’ll dig one out for you.
Where’s the craziest place you’ve ever been blindsided? What helps you get through it?
by Band Back Together | Sep 8, 2010 | A Letter I Can't Send, Baby Loss, Child Loss, Coping With Baby Loss, Coping With Losing A Child, Grief, Help For Grief And Grieving |
[What to say when a friend loses a child is such a mystery. I was the mom at her daughter’s casket in the fall of 2008. So when a friend of mine lost her young son to a progressive fatal disease, I wrote her a letter somewhat like this. When my daughter died, I craved a letter like this.]
Oh my friend. My heart breaks that you find yourself here, where I have walked and wept. Every hour I lift you and your family in prayer, pleading with God to pour out grace and strength and rest over you.
I was so encouraged by the outpouring of support for you and your family at your child’s visitation and funeral. I well remember how exhausting that was, but how much the presence of friends both old and new holds you up in those initial days after. I pray that you drew strength from that love poured from so many who love you and loved your child.
Please consider me a willing listening ear to hear whatever you need to say, or to just sit in silence when the words won’t come. I’ve walked this dark road and would be pleased to walk it again with you, if that would help.
Even now, 21 months later, some of life’s moments still seem surreal. It’s like I step out of life and look at it in disbelief. Can this really be the life I’m living?
The day Ellie died I felt myself split in two. I remember riding in the ambulance with her and yet looking at the scene and thinking, “Is this really IT? Look at the way they are working on her. I think she is gone. Is this really happening? Is this really the way it’s going to end?”
And that numb detached feeling persisted through the funeral planning, the visitation, and the services. Whenever I’d step back into my life, I was saturated with sadness. I remember thinking that I had to figure out how to stop crying because it hurt too bad. My sinuses and eyes were swollen, throbbing, aching. Grief is a physical pain. So I would step back out when it got to be too much.
Ever so slowly, the crying slowed, though it will never stop completely.
Ever so slowly, I could move through a day a little more.
Grief is exhausting. I had no idea. I needed help with food preparation, clean-up, housework, laundry… for weeks. Every task took everything I had. Things I had done before without a thought took every ounce of concentration so that I didn’t leave water running or the stove on or milk on the counter.
At the same time, all those days I couldn’t figure out what was taking so much time and effort. Without Ellie and her needs, the days gaped empty. Again, another surreal element of that time. Those days finding your way through is so awkward. You feel the yawning emptiness in your family: Folding laundry and folding your child’s things for the last time, and then having one less pile of clothes. Their empty bed. Their silent equipment. I constantly looked for what I was forgetting, constantly counted heads because I wasn’t confident I could keep track of everyone anymore.
It took at least a month for my energy to return.
If I may offer a bit of advice? Many will say, “If there’s anything I can do…” Take them up on it. Mention the lawn that needs to be mowed, the dirty dishes, the vacuuming, the leaf-raking, the snow-shoveling, watching the kids so you can sleep, writing thank-you notes (I personally think that a grieving parent should never be expected to send thank-you notes.), doing laundry. It will give you rest and they will love to be of some small help to you.
And in the midst of crying your own tears and asking your own questions, your other children have fears and questions. They are worried for their parents. They make valiant efforts to understand death and funerals and where their brother or sister is versus where their body is.
I write in hope that knowing others have walked through this gives you hope. I hope that you can feel my arm around you as I weep with you.
Love and prayers,
Joy
by Band Back Together | Sep 7, 2010 | Baby Loss, Post-Traumatic Stress Disorder, Stillbirth |
Twitter was there when I returned to my OB’s office for the first time after my newborn daughter died. I grew anxious as the minutes passed and she didn’t pop into the exam room. But, somehow, knowing people were out there listening as I was stuck in a tiny cell filled with pregnancy memories, I managed.
This wasn’t the first time Twitter was there for me. I reached out through Twitter and blogs just a few days after Cora died. Social media gave me purpose those early days. I wanted to share Cora, share her beauty, and the best way I knew how was by talking about her. I did constantly. And, people listened, reached out, let me talk about her. On days when I couldn’t find the words to speak, I could always find something to write.
Some of you might be aware of Cora’s story, but in case you aren’t, here goes. I had a healthy pregnancy and delivered Cora November 30, 2009. She lived five healthy days, no signs of a problem. One morning, I was breastfeeding her. I looked up for a second and looked back down and she was dead. Suddenly. Out of nowhere. It’s so traumatic. I sometimes worry I give people PTSD just sharing her story. We rushed her immediately to the hospital, but it was too late.
Turns out she had an undetected congenital heart defect. The coroner told us a few days later. We looked up congenital in the dictionary, and I took to the web. A Google search was sort of helpful. But even more helpful? Connecting to real live people that picked up on my tweets naming Cora’s killer.
What’s helped me more than anything is giving back. Cora changed me so much. I’ve never felt such love. She was stunning, in so many ways. I instantly felt a need to make sure that beauty multiplies. On most days, the only thing that keeps me from losing my mind and crawling into bed and never coming out is sharing her. Knowing she’s reaching people and saving lives.
I never thought I’d get out of bed each morning because of blogging and Twitter. I remember feeling silly at first emotionally spewing everything on my blog, but the silliness was outweighed by the support. By all the people that felt like they knew Cora and wanted to help spread her story.
Blogging gives Cora a voice. Cora lives.
People are what got me through ultimately. The power of the good of people. And, the blogging community? Full of some of the best.
