Resources Super Post!

Hi, friends. I hope you’re doing super excellent today. But in case you’re not, I wanted to compile some resources that you might find helpful. I am initially writing this as a blog post, but a less wordy version of this list will have a permanent home on the blog, in the main navigation menu (the teal bar under the header). So, you can come back to it anytime.

Postpartum Mood Disorders/Maternal Mental Illness

Here is a very comprehensive list of Postpartum Depression, Anxiety & OCD Symptoms, brought to you by the AMAZING people at Postpartum Progress.

I want to just take a moment to talk to you about that link, and what it means to me. I owe my life to the people at Postpartum Progress, because of that list. No joke. There were moments, before I entered therapy for PPA, when I wasn’t sure if I was going to make it. For the first time in my life, I didn’t have the words to express what I was experiencing. I was ashamed. I was terrified. I thought I was alone. All I knew was that I could not go on living like that. In the worst of it, I was barely sleeping, having panic attacks regularly, and only barely functioning as a real life adult woman. I was sure that I was a burden to my husband. I was sure that I was a terrible mother. I was sure that I would somehow lose my youngest son, and I was so afraid of experiencing that loss, and exhausted from living in (and carefully hiding) a constant state of terror, that I thought it might be easier if I just ended my own life. It was that bad.

One day, in a desperate attempt to find an explanation, I stumbled across that link, and it was like it was written about me. A sampling of the symptoms that I experienced, which are also on the Postpartum Progress list:

  • Racing mind. Unable to relax.
  • Always have to be doing something. Cleaning, knitting, washing, working. Doing. Doing. Doing.
  • Always worried. Will the baby wake up? Will the baby grow up? Will the baby get sick? Will the baby be safe?
  • Disturbing thoughts.  I started crying when I read that one. I had been struggling so hard with the horror movies that played in my head every time I walked my baby over a concrete surface, reading that this was a symptom of anxiety was life changing.
  • Pacing. I used to pace in the living room in the middle of the night, like a caged animal, while trying to stave off a panic attack.
  • Insomnia
  • Dread. The constant feeling of waiting for the other shoe to drop. The nonstop sensation that something horrible is just around the bend.
  • Having to do or say certain things, for fear that if I don’t, something bad will happen.

I had been screened for PPD at our Well Baby check ups, and had passed the Edinburgh Postnatal Depression scale every single time, because I didn’t have PPD. I had PPA, and they can look very different. Consistently passing the PPD screenings only reinforced the notion that I was alone, and just sucking at being a mom, rather than experiencing a nearly textbook manifestation of a widely documented mental illness.

That link saved my life. After finding it, I immediately used Postpartum Progress’ list of therapists who specialize in the treatment of postpartum mood disorders, to connect with the therapists that I have now been seeing for the past 2 years. So, when I say that I owe Postpartum Progress my life, I mean it. They made it possible for me to not only understand that my symptoms meant something, but they connected me with the women who have brought me back from the brink. Thank you will never be enough, but it will have to do.

Also from Postpartum Progress, an equally comprehensive description of the symptoms of Postpartum Psychosis.

Please keep in mind that you may not experience all of the symptoms on any of these lists, or you may experience some from each of them. Anxiety and Depression look different for everyone. Also, if you are experiencing any of these symptoms while pregnant, you may have antenatal/pregnancy depression or anxiety. This is also common, and also treatable!

General Depression and Anxiety 

If you are experiencing symptoms of depression or anxiety and are not a parent, or you just do not feel like the PPD or PPA symptoms resonate with you quite accurately, you may have a more generalized depression or anxiety disorder. There are a ton of resources out there for you to also connect with a therapist.

Does your employer offer an Employee Assistance Program (EAP)? An EAP is not related to medical insurance, and if it is a part of your benefits package, you might be eligible for some free counseling through that program. Most EAPs don’t offer unlimited sessions, but this is a great way to try out therapists for free, while you try to find someone who will be a good long-term fit. Talk with your Human Resources department to ask if this is available to you. If it is, I recommend getting a list of therapists from your EAP and then cross-referencing it with In-Network providers on your health insurance plan (you can get this list from your health insurance company). Use your free EAP appointments only for therapists who are also covered under your medical plan, guaranteeing that if you find someone you like, you’ll be able to stick with them after your EAP benefits run out.

Lastly, there are a ton of resources online that can help you connect with therapists in your area. Spend some time searching and meeting with therapists until you find the right fit for you!

Self-Care

Here are some of my favorite resources for self-care ideas and tips. I will add to this list as I find new things to share, and feel free to share your favorites, too, either in the comments or by sending me a note!

Ellen Bard’s Super Comprehensive Compilation of Self Care Wonderfulness (that’s not her title, but it’s what I have come to call this mammoth piece in my head) I keep coming back to this, and find something new every time.

Mindful.org Learn the ins and outs of Mindfulness and begin a journey towards a more present You.

Stop, Breathe & Think I use this app on my phone almost every day.

Susannah Conway Susannah has a variety of e-courses and workshops that I love. She has such a knack for opening up the connection with oneself through her writing and thoughtful photography. So, rather than link to any of her specific offerings, I’ll just send you right to her homepage – enjoy!

ASMR I’ve talked about ASMR before, so I’m not going to go into a ton of detail explaining just what it is. But I am including it here, because it is a big part of my self-care.  I’m just linking to my favorite ASMR content creator, but a quick YouTube search for ASMR will open up a strange corner of the internet that you never knew existed! Enjoy!

Community

Besides therapy, one of the most helpful things that I have done is to seek out community. Surrounding myself with people who understand maternal mental illness, or who simply share interests similar to my own, has been pivotal in erasing the isolation of Motherhood. Because if we’re all Misfits, no one is. With that in mind, here are a few of the communities of which I am a part. I recommend you seek out Facebook groups which mirror your own interests and hobbies, as well as seek out support groups for people experiencing PPD, PPA, grief, or generalized depression and anxiety disorders.

Motherhood Misfit on Facebook

Postpartum Progress Warrior Moms

The Offbeat Empire

Failure:Lab See the Failure:Lab talk I did here!

Ravelry All my fellow knitters and crocheters – If you’re not already on Ravelry, get signed up, post haste!  Then add me so I can creep on your projects!

You may notice that there are no grief support or parental bereavement communities listed here. I think they can be a wonderful source of comfort for many, but my anxiety disorder and the fact that I am intensely triggered by the loss of children, means that those communities tend to be more upsetting for me than they are helpful. So, I know there are some great resources out there for parents who have experienced loss, but my own anxiety boundaries keep me from being a part of them.

Okay, friends, that’s it for now. Thanks for sticking with me if you made it this far!  As I mentioned 10 years ago, when you started reading this post, a condensed version of it will have a permanent home in the main navigation menu (right below the header), which I will add to as I find new and helpful resources to share!

Capture Your Grief, Day 27 – Self Portrait

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Life is a series of moments, and this is one of mine.

When I look at this photo, I see an invisible battle being waged.

I am living with an anxiety disorder, and every day, in almost every moment, I am fighting. I am fighting my anxious brain with my intellectual brain. I am fighting the terrifying voice which tells me that I have to use a certain coffee mug every morning, or say a certain phrase at bedtime, or else my child will die. The voice which somehow turns the most benign of tasks into life-altering decisions.

I see a woman falling through life, somehow managing to look like she generally has her shit together. On closer inspection, though, I see the chipped nail polish. I see the breakouts on her skin. I see the bags under her eyes. I know the larger stories these small details tell.

I see eyes which have known great loss, and great fear.

But, I see something else, too.

I see a woman who, despite the daily battle, works hard to advocate for women’s health issues, both mental and reproductive. I see a woman who has decided to own her story, rather than hide from it, because there is a chance that it could help someone. I see a woman who went to work today, who went to therapy today, who adulted pretty damn well on all fronts, despite the endless barrage of triggers that she has experienced in the last 3 weeks. I see a woman who swallowed her pride, and then swallowed her meds, and did her best to get back to the business of living.

I see a mother and wife who loves deeply. A love so deep that, in the darkest moments, it was the only thing that kept her here.

I see the battle. I see the pain. But, one thing I do not see, is shame.

Keep fighting, friends, because every day you are a freakin’ hero.

Capture Your Grief, Day 23 – Love Letter

sun-heart-autumn-leaf-39379.jpegAn Open Letter to All Parents Who Chose To Terminate a Pregnancy For Medical Reasons:

Since losing Clara, I have often been lumped into support groups or bloggers whose focus is Pregnancy and Infant Loss. This association is one that almost always makes me uncomfortable. I am hesitant because our loss was voluntary… sort of. I mean, our diagnosis meant that Clara would have been very unlikely to survive outside my womb, but still. I sometimes don’t feel comfortable being included among women who have spontaneously lost pregnancies, or who have had stillborn babies. I am often afraid that my presence must be insulting in some way. I am honestly not sure if I am welcome, and I feel like a fraud in their company.

Occasionally, this sensation is so consuming that I find myself being vague about how we lost Clara. Not wanting to offend, I sometimes leave out just enough information for our story to sound like a pregnancy loss, rather than an abortion for medical reasons. Some days I just don’t have the courage to weather the potential judgement. Some days my heart is just too sore.

So, I see you. I know. I know how hard it is. I know how much it sucks. I know the isolation. Among bereaved parents, we are a sort of sub-group, and one that does not get a lot of time in the spotlight. Sometimes, it feels as though we are the murky underbelly of pregnancy loss and parental bereavement. No one really knows where, or if, we belong.

The decision to end a pregnancy, for any reason, is a painful and heavy decision to make. Choosing to end a pregnancy when that baby is wanted, so, so wanted, is a waking nightmare. It is every bit as traumatic as unexpectedly losing a pregnancy or child, but it is different.

Do not let the isolation make you despondent. While we may not have an official awareness month and we might not feel as though we always belong among those Walking to Remember, we still have each other. We are not alone. You are not alone.

I don’t need to know why you ended your pregnancy. You don’t need to justify it to me, or to anyone. I know that, whatever your reason, it was hard, and I am so sorry you were ever in that position. I know that belonging to this particular group is sometimes scary, because it can bring judgement from people who really, truly, do not understand. It can bring angry words and vitriol. Hate and condemnation.

I will do my best to bring balance by telling you this:

I love you. I love you for being brave. I love you for making what felt like an impossible decision because you had the presence of mind to know what was best for you and your family, and then the courage to follow through. I love you for being here, for searching for your community. I love you, because you have found us. We are here. We are not the murky underbelly of pregnancy loss. We are Mothers and Fathers, bereaved. We are humans who, when faced with devastating circumstances, had the courage to make a difficult decision. As if that wasn’t impressive enough, you are still here to tell the tale. You survived. Every new day is a victory. Every new day is an opportunity for more healing, and for more growth. I love you because you are still moving forward. I love you because you inspire me to do the same. I love you because when I feel like I am on an isolated island of loss and pain, you remind me that this place, our little island, is far from empty.

I love you, because you are here.

Stay strong,

Kelly

 

 

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:

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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.