Capture Your Grief, Day 17 – Secondary Losses

In the United States, Spina Bifida affects approximately 1 in 1000 pregnancies. This incidence doesn’t sound as rare as one might think, but it is important to note that in many of these cases, the baby will have Spina Bifida Occulta, which is the least severe form of Spina Bifida, and generally causes no complications or symptoms. So, of that number, incidence of Spina Bifida Myelomeningocele, which is the most severe form of Spina Bifida and the one that Clara was diagnosed with, rates are lower. Furthermore, many cases of Spina Bifida are related to larger genetic disorders, such as Trisomy 18 (Edwards Syndrome). In our case, blood work showed no such genetic disorders, meaning that our specific case of Spina Bifida was likely just a simple physical mutation. A fluke.

You might say we were just unlucky.

To that, I would reply “No shit.”

What this unluckiness means, however, is that something terrible, rather unlikely and somewhat rare happened to one of my children. This sentence is important because it is comprised of all of my worst, most anxious nightmares.

Before we lost Clara, my anxiety disorder was under control. After going undiagnosed for 2.5 years, I had finally gotten myself to a great therapist and had been working hard, using Cognitive Behavioral Therapy, to get back to living my life without the shadow of paralyzing fear.

Losing Clara, and the reality of it being to a generally unlikely cause, was like rolling out a red carpet for my anxiety to return. Most of the work that I had been doing in therapy was reinforcing the improbability of my fears. I was convincing myself of the irrationality of it all. The problem is that when you conquer anxiety by convincing yourself that your fears are unlikely, and are then confronted by an unlikely nightmare coming true, well, it’s easy to see how I very quickly lost control of my mood disorder.

The way that my anxiety works, is that I am, and have been since the day he was born, absolutely terrified of losing my youngest son. Every cough, every fever, every bumped head is enough to set me into a tail spin of fear about what might be happening that I cannot see, and cannot control. I am terrified of lurking, undiagnosed illness. I am paralyzed by thoughts of the unknown future. In fact, I have a very difficult time dreaming of my son’s future, because I have trouble trusting that it will be full of wonderful things and not certain doom. I know. It’s awful. One of the techniques I am using to combat this fear of the unknown future, was given to me by my mother, who had the exact same problem when I was a child.

SCIENCE BREAKMood disorders such as Anxiety and Depression are generally thought to have a hereditary link, and people with parents or siblings who suffer from them have a much higher likelihood of experiencing Anxiety and Depression themselves. What’s more, researchers at Johns Hopkins conducted a small study a few years ago which uncovered that when specific alterations are present during pregnancy within two particular genes, they were able to reliably predict that a woman would develop postpartum depression. We still have a lot to learn, but one thing that this does tell us is that if your mother experienced a postpartum mood disorder, such as PPD or PPA, you are more likely to develop one yourself. This isn’t a doom and gloom message, though, because what this knowledge does is empower you and your doctors to be on the lookout for symptoms of postpartum mood disorders. When you are aware of a possible genetic pre-disposition, you can catch the signs faster and begin treatment sooner! Knowledge is power!

Back to our regularly scheduled blog post…

Anyways, my mother told me that she used to practice a specific meditation when I was young, which helped her to cope with the fear of losing me. She simply imagined me as an old woman. She would close her eyes and imagine what I might look like as a grandmother. She imagined what I might sound like, and what things I might like to do. It sounds simple, but it’s not!  So far, I have only been able to imagine my youngest son as a middle aged man. I have been slowly aging him in my mind, however, and eventually I am sure that I will be able to picture every wrinkle on his face. For the time being, I imagine him as a 30 something, with 2 kids and a loving partner. My son is obsessed with baseball and does seem to have a bit of natural talent, so I like to imagine him as a professional baseball player. A pitcher, specifically. Sometimes, I close my eyes and imagine that my husband and I are at one of his games, sitting down the 3rd base line, with both of his children, our grandchildren, in tow. His children have white-blonde hair, just like my son, and in my mind we are joined by his wife (though I’d be delighted with a Son-in-Law, too and don’t mean to assign a sexual orientation to him, I just keep seeing a female partner), whom I love and get along with grandly. Sitting just above the dugout, we are, the five of us, cheering him on as he approaches the mound, fit and strong and gorgeous as the day he was born.

I can picture this so easily, and the more I practice, the closer I get at being able to imagine him as an old man. This technique helps more than simply working to convince myself that my fears are unlikely. That argument has rather lost its potency after our experience with Spina Bifida. Instead, I am teaching myself to trust that the future holds wonderful things for this child, my beautiful youngest son.

So, while I may have lost control of my anxiety after losing Clara to Spina Bifida, I am working hard to regain the upper hand.

Play ball!

Capture Your Grief, Day 7 – Memory

I almost opened this post by saying something about not really knowing Clara, since we had to say goodbye to her before she was born, until I realized that this isn’t true at all. I knew her well, as I believe most pregnant women know their unborn children. This sensation, this powerful, primal connection before birth, is difficult to articulate. The best I can do is to describe it as both instinctual and spiritual. We shared a body, she and I. My womb served as her sanctuary in life, and in death. Oh yes, I knew her.

It is strange then, to think that this little person, who has impacted my life so profoundly, occupies very few actual memories in my mind. There is one, though, that stands out.

It was the day that we found out that her ventricles were enlarged. The day we were alerted that there may be a problem, but before we had our actual diagnosis. Before we knew how bad it all was. I had spent the entire day navigating the red tape labyrinth of our health insurance, and was emotionally and physically exhausted. Unfortunately, when parents are distraught we are rarely afforded the luxury of appearing so. Not wanting to scare my children, I came home from work that day and promptly asked my husband if he would hold down the fort so I could take a bath. He, of course, agreed and so I quickly kissed heads and removed myself to the bathroom.

I went to the bathroom to cry. I went to the bathroom because I needed to turn on the vent and run the tub as loudly as possible, so I could cry unreservedly. I disrobed and eased myself into the warm tub, releasing my muscles and with them, a shuddering sob. I held my swollen belly and cried to her. I told her that I wasn’t sure what was going to happen, but that I loved her. I sang Bob Marley to her, and in the process, tried to make myself believe that every little thing would be alright. I, though not a religious person at all, begged God to make it all okay. If there is anyone up there, pulling the strings, I begged them. I begged them until my throat was sore.

Eventually, spent of my pleading and reassurances to Clara, I sat naked, hunch-backed and bent over my belly, in the now cold and near-to-overflowing tub, pulled the stopper and sobbed, “My baby. My baby. My baby.” until I was shivering and both I and the tub were drained.

Heart wrenching as this memory may be, it also holds some peace for me. In this moment, I was Her Mother. I was not a woman with a devastating diagnosis. I was not a writer with a tough story and a penchant for sharing it.

In that moment, I was Clara’s Mother.

Capture Your Grief, Day 1 – Sunrise

Here we are, friends. As promised, my next series of prompted writing begins today. There is a reason that I am starting today, of all days. You see, today is Clara’s due date.
                                                                                     *deep breath*
Today is a hard day. It is hard right now, at least. It is a milestone, though. One that I hope will bring some calm on the other side. Today marks the end of the time that I was supposed to be pregnant, but it also marks the beginning of the time that I was supposed to have her in my arms. So, does it signify the beginning of a healing period? Honestly, I don’t know, but it is the closing of a chapter and the opening of another, without a doubt. I think that counts for something. Capture Your Grief is a 31 day, mindful healing, photography and journaling prompt series that is usually held during the month of October, to honor Pregnancy and Infant Loss Awareness Month. However, I felt like it was a very fitting way for me to honor Clara’s due date, while also exploring my own grief, by starting this series today. So, without further ado, on to the first post.

Capture Your Grief, Day 1 – Sunrise

This morning, I snuck into the library while everyone was getting ready for their day (I took the day off to allow myself the space to grieve), and watched the sunrise from the little green arm chair by the window. It is cold here, in our little corner of the Midwest, and the sunrise felt strangely crisp, since one typically associates the sun with warmth. I dug my toes deeply into the soft, furry blanket that we keep draped over the library armchair and let myself watch the sun climb through the bare branches behind our house. The library is Her room. I know we gave it a new identity by turning it into The Library, but I think it will always feel a little bit like Her room to me. It isn’t a sad feeling, though. There is no regret or pain in that association. Her room is now a place for us to congregate. It is a place to house the friends we make between the covers of a book and we, delightfully, have so many books, and thus, so many fictional friends. It is the place that my husband goes to play guitar, sitting on the edge of the green ottoman, feet buried somewhere in the ridiculously shaggy, grey rug that I dreamed about owning and ecstatically bought for the room. Sometimes, I imagine that he is playing for Her.

All of this, it doesn’t make me sad. People talk about the beauty of grief and, for a long time I believed them to be just completely and entirely mad. How could grief be beautiful? How could it be pure? I think I understand, now. In these moments, sitting in the library, or listening to my husband strum his guitar, my heart is near to her, and it is not sad. It is grief, yes, but it is a serene sort of pain. It is beautiful. A cold and crisp sunrise may not hold the warmth and drama of a summer sun, rising over the horizon in a show of pink and purple glory. It is more reserved. Almost tentative. Although shy, it is lovely, and holds the promise of day, all the same.

May you find peace today, friends.

December Reflections, Day 29 – Home

I was born in Oklahoma, and I have made my grown-up home in Illinois. However, between the very formative ages of 2 and 19, I lived in Texas and so I will always consider Texas to be “home”. In about 6 years, I will have lived in IL for as long as I lived in Texas, though I am not sure it will ever feel the same way. I can still picture the wildflowers in my mind. Highway medians and grassy slopes painted in orange and purple. I can feel the August heat on my skin. I remember the way it feels to dip your feet in a Texas lake, when it has been warmed day and night by the summer sun. Quite different than the frigid (but beautiful) gargantuan lake that I am nearest to these days. My love for Texas is a purely geographical one however, since I stick out like a political sore thumb in my very much “red” home state.

In fact, if we lived in Texas, our experience with Clara would have been even more difficult, something hard to imagine. This is because Texas is one of several states which currently bans abortion after 20 weeks. The thought here is that, by 20 weeks, a woman should have already “decided” to have her baby or not. *deep breath* This line of thinking is so wildly misguided that it makes my head spin. I’m not going to break down all the reasons that I believe a woman has a right to choose, today at least, and instead I will focus on what happened to me. 

I decided to have my baby. I decided to have my baby before I was even pregnant, because my baby was an on-purpose baby. My baby was very much wanted. I went to the doctor appointments, watched the ultrasounds with bated breath and even bought a home fetal heart monitor because I was just so excited about this baby. At around 20 weeks, a woman with a routine pregnancy will undergo her anatomy scan. This scan is done specifically around the 20 week mark because that is the best and earliest time to check for very important anatomical development milestones and defects. It is also at this ultrasound where a woman usually finds out whether or not her baby is a boy or a girl, if she chooses to find out. We had our 20 week ultrasound right on time and were delighted to discover that we were having a girl. Our first daughter. We had exactly 3 days to dream about what it would be like to have a little girl, before we got the call. They found something and we needed to do a follow up, more detailed, ultrasound. Sick with fear and panic, I immediately called the high risk OB to schedule, but was unable to do so right away because well, insurance in America (we can get into this another time, I just don’t have it in me today). So, I had to wait for a bunch of yahoos who don’t know me from Joe to unwrap my future from all the red tape that they had wound around it, before I could even schedule the appointment for the follow up ultrasound. I think it took 2 days. On the 3rd day, approved referral in hand, I called the high risk OB that we’d been sent to, and scheduled ourselves for the following Monday (which was the earliest they could get me in – ugh). This would be a total of 6 days after the phone call, 9 days after the initial anatomy scan. I was now 21 weeks pregnant. In case you aren’t paying attention to the dates, that’s already too late for a Texan to receive an abortion, and I hadn’t even gotten my diagnosis yet. At the high risk OB appointment, we received the devastating Spina Bifida Myelomeningocele diagnosis, which you have probably already read about. If not, you can read that story here.

Now that we had a diagnosis, we had to learn. We had to soul search. It took us several days of crying, reading, talking and calling the doctor with questions before we landed on the decision that was best for our daughter, and our family. From there, it was going to take us another week or so to get our surgical abortion approved by insurance and scheduled. Unable to bear the torture any longer, we decided to schedule our procedure without waiting for insurance, and hoped that they would cover the claim later (they did, since our diagnosis was considered a lethal fetal anomaly). Even without waiting for insurance, we had to wait 4 days before we could get an appointment at the clinic, to begin the 3 day procedure. With no laziness or procrastination on our part, it took us 2 weeks from the initial anatomy scan where an anomaly was found to Spina Bifida Myelomeningocele diagnosis, to our eventual abortion. I was 22 weeks pregnant.

Due to the way a fetus develops, an anatomy scan cannot be performed with reliability much earlier than 20 weeks (some doctors will give this a 1 week swing on either side). When states put restrictions on abortion at or before the 20 week mark, they do not discourage women from ending unwanted pregnancies. Instead, they add hurdles and burdens to women ending a pregnancy for medical reasons. If we lived in Texas, we would have needed to travel out of state for our procedure. I am sure I don’t need to break down how awful that would have been emotionally, not to mention it is not ideal/medically advisable for a woman to travel and be unable to return immediately home after an outpatient surgical procedure.

In my current home state of Illinois, abortions are banned after 24 weeks. This is not much better than Texas, to be honest, but it was enough for us to be able to stay in state (though we did have to drive almost an hour there and back, 3 days in a row).

Today was going to be a simple post, an ode to the big skies and wildflowers of Texas, but as I wrote, I realized that I had bigger things to say about my beloved Lone Star State. I understand that abortion is a touchy issue. I do not expect us all to agree. However, what I hope is that people will listen, and understand that there are more reasons for abortion than just unwanted pregnancy (though I firmly believe that bodily autonomy makes that an okay reason, too). There are many assumptions about abortion, and about the kind of women who have them.

Assumption is a dangerous thing.

 

December Reflections, Day 27- 2015 Taught Me…

2015 taught me…

…to stop, look up, and see.

…to feel gratitude in a way that I never imagined possible.

…to trust my support network. I would not have made it without them.

…that I am way more brave than I ever give myself credit for.

2015 taught me that the sun still rises, after even the darkest of days.

December Reflections, Day 26 – Real Life

Contrast is an interesting thing. Many people, when asked to share their primary goal in life, would likely say that it is to be happy. However, I think this is an oversimplified articulation of the truth. The truth is that you cannot appreciate happiness without sadness. So, perhaps a better way to state this goal is to say that we want to have a life of feeling. Of course no one really wants to experience sadness, loss, anger, frustration…but without them, how would you distinguish joy?

This fantasy of perpetual happiness is just that, fantasy. It is no more possible than it is interesting, and it wouldn’t be very interesting. It is contrast that makes real life, real. Our experiences, in all their great variance, add depth to our character and give our lives the richness of feeling. For me, this is the ultimate goal. I want to be happy, of course. But more than that, I want to be able to appreciate my own happiness.

Back when I was pregnant with Clara, I signed up for an expectant mother’s mailing list. Coupons, samples and the like. Unfortunately, there is no way to un-sign up. You get where this is going… Tonight, we came home from holiday festivities to a package on the porch. After so many days of joy and delight, family and fun, we arrived home to a reminder of the little girl who is not coming home.

Contrast.

I will donate these samples to someone who will make use of them, along with any other samples and coupons we receive. And I will remember that even the saddest reminders provide the contrast to make joy shine.

December Reflections, Day 13 – A is for…

A is for… Align with Source!  This piece is a Lisa Loudin original (full disclosure: my Bonus Mom is the artist… Yes, I have super cool parents!), and it hangs in our library. The library is the room formerly known as the nursery, formerly known as my oldest son’s room. In preparation for Clara’s birth, my oldest son had moved into another (larger) room in our house. In fact, we finished moving him the weekend before our SB diagnosis. On that fateful day, the nursery was empty, save for a new white crib which leaned, still disassembled, against one wall.

After our diagnosis, the empty room was painful to look at. After we decided that the right choice was to say goodbye to her now, rather than later, the empty room was a torment. After the procedure, when my womb was empty but my breasts were full, aching with nourishment for a baby that I no longer had, the empty room was unbearable. It had to change.

And so, instead of our daughter, The Library was born. I won’t get into a big spiritual rant, not today at least (I make no promises for the future), but I do believe very strongly in the importance of connecting with the Source. Make of that what you will, but I think that statement can be applied across virtually all belief systems. Would you like to connect more closely with God? Great! That applies here. Are you attracted to the idea of exploring your own divine purpose and ability to manifest the kind of life experience that you dream of? AWESOME! That applies here, too. What it boils down to is this – when you are connected to the Source (whatever your “Source” is), things happen. I recommend checking out the teachings of Dr. Wayne Dyer. It’s a great place to start.

Anyways, since losing Clara, I’ve had several moments of feeling very, very connected to Source. I suspect that may be normal whenever we lose someone dear to us. I think that through Clara’s journey back, I was very near to Source, and I felt that closeness. In those connected moments, I felt more at peace than at any other time. I felt more sure of myself, and of the future. I felt comforted. Having this reminder hanging in the library is one way that I honor the room that should have been Clara’s, while also nudging myself to keep chasing that divine high.

Stay open, keep listening, never stop sending out love. Align, align, align.

Peace and love to you all.