Capture Your Grief, Day 22 – Dreams + Rituals

As I have mentioned before, I have a difficult time dreaming about the future. What you may not realize, is that when you dream about the future, you are doing so with an understanding that certain things will unfold the way that you expect them to. Certain people will still be in your life, everyone’s health will be in order and you will not be living alone in a refrigerator box under the interstate. You are able to dream about the future because you are confident that your future will unfold in a certain, desirable way. Some of you are nodding and see no reason why this simple understanding about the future would be a problem, but the anxious among you know. You see, anxiety is an expert in the art of taking the confidence you possess for the future, and taking a big old doody on it. Eloquent, I know.

Seriously though, my experience with anxiety has been such that, dreaming of the future is scary because I often have difficulty with the base of confidence that is required. I struggled with this during my first battle with PPA, and it has been even worse after losing Clara.

We put a lot of thought into becoming pregnant again, after my first battle with PPA. Obviously, I was afraid of my illness resurfacing. Ultimately though, our desire for another child was stronger than our fear of another anxiety battle. I felt well-supported by my husband and therapist and knew that, should PPA rear its head again, I had the resources I would need to heal. I had confidence in the future.

Receiving our diagnosis and subsequently losing our daughter was like winning the World Series and then having the title unfairly stripped away. I had been victorious! I had worked so hard towards my recovery and had been brave enough to risk PPA again in order to fulfill our dreams of another child. I was there!

And then it was all gone.

Clara was, in a symbolic way, the proof of my recovery. Losing her meant that terrible and tragic things can and do happen. The future is uncertain. Impermanence is the only guarantee.

So, how does one get the nerve to dream about the future, when you know all too well, what tragedies can befall? I’m learning that the answer is this, right here:

12507430_10205840906397370_155613904891545662_n

Me.

I have experienced an awful tragedy. My family has been visited by grief and loss. After a victory against anxiety, I am back here, in the trenches. And yet, I am still standing. I am still living (and thoroughly enjoying) my life and doing my best to share my journey, in hopes that it helps others. My visibility of the future may, for the time being, be obscured by my anxiety disorder, but there is no doubt about my continued existence. I am definitely still here. My marriage survived the hellscape of loss and we are closer than we have ever been. My children are healthy and happy. They laugh and play and excel at school and preschool.

The future is uncertain, that is an undeniable fact, but experiencing loss does not guarantee that your future will be a bleak and painful one. Anxiety is an illness of the mind, and the intrusive thoughts and spiraling fear does not herald a future wrought with nightmare.

Capture Your Grief, Day 18 – Seasons + Symbols

Little Moon

Once, I held the moon inside me
In my womb, it grew
Not twinkling stars, nor blazing sun
It was the moon, I knew

A little lunar lovely
To call our very own
But bad news came a-knocking
Into chaos, lives were thrown

I held my moon, my baby
In the quiet of my womb
My arms never knew her
But, in my heart, she has a room

These things, they do happen
And no one can say why
I know one thing for certain, though
The Moon can never die

She was just too big for life on Earth,
As any moon might be
So back into the sky she flew
To shine over you and me

I love you, Little Moon.

 

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 16 – Creative Grief

I don’t usually draft what I am going to write before I write it. Maybe that’s a bad thing. I do edit, a little, but my work here in this space is largely unpolished. Again, maybe that’s a bad thing. However, one thing that does happen, when you write like this, is vulnerability. My writing is not perfectly structured. It’s not professionally edited. I write the way I think, and the way I talk, so what we end up with is a conversation, and I quite like that. You’re getting me, just as I am. You’re getting unfiltered thoughts and emotions, a soul and heart laid bare.

This is a two way street, though, because while you get a peek inside, I get to let some things out. Since I don’t usually outline in advance what I’m going to write, I don’t know what’s going to come out until my fingers hit the keyboard. In this way, writing becomes a form of processing for me, and I didn’t realize how much I needed to process creatively, until I started doing it again.

For a short while, I was doing some freelance writing on the side. I took small writing jobs and spent my evenings and weekends working on blog content for travel websites and small businesses, some copy for a clothing catalog, that kind of thing. For a wordsmith, it was an easy way to earn some extra bucks. I did it for a few months, made a decent chunk of change and then abruptly stopped after having a job where I was asked to write a persuasive post, in favor of hair implant surgery. Yep. Hair implant surgery.

Now, I am all about people doing whatever makes their skirt fly up, so long as it doesn’t harm you, or anyone else, but I have a hard time encouraging people towards any kind of cosmetic surgery because, well, I believe that you’re fabulous darling, just how you are! That said, if you think you need hair implants to be your best self, then like, go for it dude, but I’m not going to be the one who tells you that you need them. Needless to say, I had a hard time writing the post. I did it, but I do recall inserting a line which encouraged the reader to not succumb to societal pressure or antiquated beauty ideals… they probably didn’t end up using my work. Heh.

By taking this freelance writing work, I thought that I was scratching a creative itch. It wasn’t until the hair implant piece that I realized I wasn’t scratching anything. Instead, I was wasting my time (and my talent, maybe?) writing about stuff that I didn’t care about. I was making pretty sentences for someone else, when what I really needed was to make pretty sentences for me.

This blog is the result of that realization. After we lost Clara, I realized that I had a lot of emotion just under the surface. Feelings and thoughts seemed to slip in and out of my consciousness, but I just couldn’t grab ahold of them. Navigating my days was like climbing across a water bed, I just couldn’t seem to steady myself. I turned to writing at the suggestion of one of my therapists, who already knew that it was a favored creative outlet of mine. I started by writing a few tepid lines of, I don’t know, poetry? I scribbled them in an old and dusty moleskin journal that had been sitting, unused, in my craft room. Immediately, I felt relief. The next day, I sat in the library, with the window open, and wrote some more. Again, relief.

About a week later, having spent some time thinking about the best way that I could tap writing as a method of healing, I opened my laptop, created this blog, and wrote Clara’s Story. It was a game changer. Putting our story down allowed me to process the trauma and pain in a way that I had been unable to before. In addition to that, it rocketed me into all these new communities of people; bereaved mothers, women who have had terminated pregnancy for medical reasons, postpartum anxiety survivors, mommy bloggers, and so much more. With one post, I pretty much obliterated the isolation I had been drowning in. And that was before I even had any readers!

Since that time, this blog has been slowly transforming into an incredible, and incredibly diverse, community of people joining together to read and share. We find solace in our commonalities, we find comfort in not being alone in our pain and struggle. We find inspiration in the encouragement and kindness of each other, and we take one day at a time, but we take them together.

Thank you for allowing me this space to creatively process. Thank you for your comments and your kindness. Thank you, thank you, for helping me to do away with that pesky, damn water bed.

Sending you love, and hard, steady surfaces.

Capture Your Grief, Day 14 – Express Your Heart

I have an interesting confession for you. I never really thought about having children when I was younger. I was not one of those girls who always knew or hoped she would have children. I did not babysit. I did not take Home Economics in school. I was an only child, and nearly the youngest of all of my cousins (which are not many to begin with). I never disliked children, I just never gave the idea of having children a particularly great quantity of thought.

How funny then, that Mother would be one of the words which I hold on to most dearly, when examining my own identity. My own journey in first becoming a step-mother, having a child of my own and then losing my unborn daughter have been defining moments of my life. Where once I was a girl who never thought about becoming a mother, I am now a Step-Mother, Biological Mother and Bereaved Mother. I am a mother, thrice over. I am a woman who writes about being a mother. I am a woman who gets on stages and speaks about being a mother. I am a woman who uses my own experiences to advocate for other mothers.

Mothers are my people.

It is rather cliché to say, but you just never know where life will take you. Something never considered, could one day become defining.

Here’s to staying open to whatever may come, friends.

 

Capture Your Grief, Day 13 – Regrets + Triggers

I have spoken before about triggers on this blog, and about how I believe that, ultimately, my triggers are my responsibility. A goal that I have for myself is to reach a point in my grief, and especially in the management of my anxiety, where being exposed to one of my triggers does not cause a week-long downward spiral and recovery backslide. I do not want to live in a world where conversations are policed by trigger warnings, and people walk on eggshells during conversations with me. I want to be equipped with the kind of coping mechanisms that allow me to face my triggers and forge ahead. This is especially important considering that one of my biggest anxiety triggers is my youngest son being sick or injured. Clearly, I cannot navigate life as the Mother of this beautiful, rambunctious human without being faced with him catching the odd cold or without the occasional bump or scrape. Even as I write this, right now, I can feel my heart rate beginning to pick up pace. I detect a slight tremor in my hands on the keyboard. My intellectual mind is working hard to push away thoughts like:

“You are talking about him and illness. Now he is going to become terminally ill.”
“Just the very mention of him and illness virtually guarantees that he will become ill.”
“You know he will. You know it”

You guys, seriously. My brain is an asshole sometimes. The truth is that my youngest son is going to get sick from time to time. He is, at this very moment, battling strep throat (and on antibiotics) and a cold or virus of some sort (which we are heading back to the doctor in the morning for). I have to be able to function when things like this happen. I have to be able to take a deep breath and Mom. So, yes, I have triggers. I have anxiety triggers, I have grief triggers and they are often very different. My therapist and I have spent some time addressing some of the ones which I am aware of, in an effort to inform my intellectual brain, so that it has ammo when anxiety comes-a-knockin’. As new ones crop up, as I am sure they will, we will continue this process of recognizing, examining, understanding and undermining.

As for regrets, while I am certainly not perfect at living a life free of regret, my honest opinion is that they serve little purpose in your life and so I will let Edith Piaf answer that one for me.

Peace and love to you, friends.

Capture Your Grief, Days 10 & 11 – Words & A Glow In The Woods

Hey everyone!  Sorry for my absence yesterday, except not really, because the truth is that I needed to take care of me yesterday, and well, today too. So today’s post is not only going to be a combo, but a shortish one. I love you guys, and I love talking with you, but I have needed some self-care from places other than my laptop for these last couple days, and so I’m just popping by to share a little, and then retreating back to my blanket fort.

I’m going to use my words (see what I did there? meh. yeah, it’s a writing prompt cop out) to explain what’s been going on, and then tell you about what helps me to heal.

So, what’s been going on is that my anxiety has been in full force for about 5 days now. It has been exhausting. There have been tears. There have been near panic attacks, brought down only with the aid of Xanax. It hasn’t been pretty. My therapist and I did some work trying to figure out what set all this off, and I think we uncovered some helpful info, which is actually contributing to a blog post that I’m working on, to be posted on a later date. However, this has largely just been a setback, plain and simple. It has been frustrating, because I was feeling as though I was making progress in therapy, so to slide back so drastically has been very discouraging, but I am trying to keep my head held high.

The “Glow in the Woods” prompt is actually a reference to a grief resource that Carly Marie (the creator of these prompts), found helpful. Glow in the Woods is a website for bereaved parents. Truthfully, I haven’t visited the site. Since I am battling anxiety as well as processing my grief, I’m nervous to go read anything that deals with the loss of children. I believe it will likely be triggering for me, and so I am staying away. My therapist is nodding her head in approval right now.

However, I do want to share with you some things that have helped me, both in processing my grief AND in managing my anxiety. I will list them, in no particular order below:

  • Xanax. Okay, this one is in a particular order. Honestly, it’s probably helped me the most in keeping anxiety from ruling my life these last few months. I promise the rest of this list is in random order, though.
  • ASMR– Okay, so, a bunch of you are probably about to think that I am crazy, but some of you will either already know what this is, or thank me for the rest of your lives for introducing you to it. ASMR stands for Autonomous Sensory Meridian Response, and rather than go into long detail explaining it, I am going to link you to some helpful information and share my favorite ASMR artist with you (p.s. – the sound in that video is binaural, so I recommend using headphones). If it does nothing for you, your brain may just not be susceptible to ASMR, and that’s cool. If it relaxes you or mesmerizes you like woahyou’re welcome.
  • This blog. This space has been an amazing source of healing for my grief. Sharing my experience with others is a balm for pain like no other.
  • My therapist(s). I started with one therapist, who originally diagnosed my PPA. She helped me dig my way out of the trenches the first time I battled this monster, and it is because of her that I know there is an end in sight. However, I am now seeing her colleague, because my new, current therapist is trained in EMDR, which is a trauma recovery therapy technique that we have not yet attempted, but have been laying the groundwork for. We haven’t really had a chance to give it a shot, because I’ve been on and off in crisis mode. Eventually though, we’re gonna give it a go! Even without beginning EMDR, my new therapist is just as great a fit for me as her colleague was. With a mixture of compassion, humor and Real Talk, she is able to say exactly what I need to hear, when I need to hear it. My ah-ha moments have been 100% based on things that she has said, my decision to take the medication which is currently making my life functional was bolstered by her encouragement, and my grief, which I tend to keep locked in a box inside a cellar which is also locked, bricked over and has a lovely garden planted on top, is now slowly beginning to come out, be observed and is beginning to heal, all because of her gentle pushing and well-leveled patience. Not trying to kiss any butts here, but my therapist is awesome and if you are currently battling PPA, PPD or any other mood disorder or unhappiness, I highly recommend you locate a therapist, post haste.
  • Self-Care. Obviously, this includes my meds. It took me a while to realize that was obvious, but it is. Meds. In addition to that, sleep. Also, seems like it should be obvious… but it’s not always. As for the rest, do what makes you feel restored. It can change, day to day, but take a moment and ask yourself “What do I need?”. This is an amazing, and huge article on self care. Peruse it, bookmark it, keep coming back to it. I’ll be honest, I suck at self-care. I am so busy “doing” that I often forget to stop and check in with myself. Today though, I rocked the self care. Just during nap time today I, gave myself a manicure, drank a cup of tea while reading my book in the library and ate a bowl of honey nut cheerios for a snack. See?  A+ self-care today. This was especially made possible by my excellent husband who cleaned most of the house yesterday, paving the way for me to have a day where I didn’t feel like self-care meant slacking on house-care. Speaking of that wonderful man…
  • My husband. He cleans, he cooks (well, sometimes), he holds me when I have panic attacks and reminds me to take my medicine. I married the best one, sorry ladies. Whether you have an amazing partner, an amazing best friend, or an amazing parent, I think it’s important to have someone who you can confide in. Someone who can be available when things are not so great, and who can celebrate with you when things are excellent. If you’re feeling isolated, a great place to start can be a support group. I’ve linked to PPD support groups, but there are support groups for just about anything and lots of info about where to find them online. If you don’t need a support group per say, Meetup.com can be another great place to meet like-minded individuals and make new friends. Hopefully this goes without saying, but if you’re meeting internet people, please make sure you use good judgement and meet only in public places. There are great people on the internet, and I’ve made a lot of real-life friends that way, but there are not so great people, too. Be smart and safe.

Well, as usual, I am long winded and my “short” post is anything but. Oh well. Hopefully you find something helpful here and I’ll try to be back tomorrow with another Capture Your Grief post, but if I’m not, you’ll understand, and I’ll appreciate you for it!

Lots of love to you.

Capture Your Grief, Day 9 – Family

We are very fortunate, in that my husband and I have remarkable families. Even better, all of our immediate family lives in the same state as us, with many of them just down the street. What this means is that, when things happen, we have a support network to fall into, and with the events of last year, we indeed fell.

When we received our diagnosis and made the decision to end our pregnancy, our family rallied. Trips were cancelled, days off were scheduled, meals were cooked, shoulders were available for crying, phone lines were tied up and everyone made themselves available for either comfort or counsel, often both. We do not take this blessing lightly. My husband and I are both very aware of our good fortune in the relationships we enjoy with our parents, grandparents, brothers, sisters, aunts, uncles and cousins. We both know, through loss or estrangement, what it feels like to be without family, and it makes us all the more grateful for these beautiful people who jumped in to catch us when we fell. We would not have made it through our loss without them.

Whoever your family, whether they be by blood or by choice, take a moment today to thank them for being in your life. We all need people to catch us when we fall.

 

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 5 – Empathy

Today’s prompt suggested that I write about what not to say to a bereaved parent, but I just can’t bring myself to.  Of course, people have said some pretty ridiculous (and sometimes hurtful) things since we lost Clara, but I have mostly been able to give them the benefit of the doubt. I know that they mean well, most of them at least. So, instead of talking about the empathy we expect from other people, I want to talk about the empathy we can provide to them.

I know this sounds crazy. I mean, I am saying that, as part of your grief process, you should show empathy to others rather than expect them to show it to you. But, hear me out!

People don’t know what to say when you are grieving. One of my co-workers recently lost his father and, on his first day back in the office, I said “Hi! How are you?” Moments later, I was horrified at my own insensitivity and beating myself up for such a ridiculous question. Particularly since I have been traveling my own grief journey since last Fall!  How could I ask him that?! The next time I saw him, I apologized for asking such a stupid question by saying “I am sorry. Earlier today I asked you a very stupid question. I would like to retract my original question and instead say ‘Hi. I am so glad to see you. I hope you are doing okay and finding peace.” Being the good-natured (and forgiving) guy that he is, he graciously accepted my apology and brushed off my embarrassment. It was humbling, however, to realize that, given all my recent experience, I could still be so insensitive to another’s grief.

He had the good grace to show me empathy, even after my woefully thoughtless display. I feel like I had already been doing a pretty good job at doing the same for others, when someone said something stupid in regards to our loss, but being on the other side really highlighted the importance of giving others grace.

I think the large majority of my readers are people who have experienced loss, or are currently suffering from a mood disorder or mental illness, rather than folks who would be talking to people like us. So, instead of trying to tell them what not to say, I’m going to tell you that they will say it. They will say all the stupid things. They will be flippant. They will be discombobulated. They will say “Hi! How are you?” Most of them mean well. They really do. They just don’t know the right thing to say. And really, is there a “right” thing to say, anyways?

So, give them grace. I promise that doing so will always feel better than giving them anger or hurt. You won’t get it right every time, but do try. Try to give them grace.

Peace and love to you, friends.