Big News

(Topic: Pregnancy, rainbow baby)

Hi Friends,

As you may have noticed, there have been some large gaps between posts lately. I am about a year late in telling you this... I was expecting and now have a rainbow baby!

Please note, this post will talk about pregnancy and having a small baby, after having had a loss. If you are in a place where reading about someone's pregnancy and baby is hard, please consider not reading further. I will not be hurt or offended if you do not read this post.
If you do decide to continue reading, please be aware that I will be posting a picture of my living child in this post, but not until the very end, so if you want to read it but don't want to see pictures, you'll be able to. I'll put in a warning before the pictures.

.....

This whole last year has been one heck of a ride, and very overwhelming. You may have noticed that my posts became very sporadic last summer... We were moving, and things didn't go smoothly with the move, either, so I rarely found the time or energy to write.

Then at the end of July, I started noticing weird cravings, and my body feeling different. This is the same way I found out that I was pregnant with Charlie - weird cravings! This time it was for yellow summer squash, sauteed with onions, salt, pepper, and garlic powder. I normally hate any kind of squash!

So that weekend, I took a test with my husband standing by for moral support (it was harrowing either way. I'd been trying for a while, and every negative test was an adrenaline spike followed by sadness or anger or bitterness... ovulation tests became a thing of anxiety, and at some point we realized that I couldn't test regularly, for my mental health. So we were only testing anything if it really, really made sense, and only with moral support). I had geared myself up mentally for a negative result, like so many before, but at the same time, this one felt so different that I was simultaneously sure that this was the one.

My husband saw the result before I did.

It wasn't pale and sneaky, like some early results, or some of the false positives I'd had over the prior year. This was bold and dark pink, just like the other stripe on the test! I barely believed it even then, and yet it was so certain.

We called our family and close friends right away. We wanted 2 things: a network of support if something went wrong, and also every minute of celebration and hope we could get.

I found, over the course of the pregnancy, that I needed others to be excited, for me, because I couldn't manage to do it myself most of the time. I was excited, on one level, and hopeful, and yet I was terrified and anxious, and a total wreck.

This was not made easier by the fact that I get very, very ill during pregnancy, with Hyperemesis Gravidarum. With Charlie, we never got it under control, and I threw up for 9 months. This time, after a mad scramble to find an OB in our new town, I got some medications started pretty early. I threw up about half a dozen times a day for the first 6 weeks, but then got the appointment with the OB and got meds started. Although we had to tweak the regimen several times, and it wasn't perfect at first, we got it figured out to the point where I think I threw up maybe 6 times the whole rest of the 9 months, which is awesome!

But I'd been so miserable the first month or so, that for the next month or so I had NO energy at all. And even after that, you add in the anxiety too, and I wasn't much help around the house at all. Later in pregnancy I also developed Gestational Diabetes. It does go away after the baby is born, but you are at higher risk of developing diabetes yourself (and much higher risk of having it again for any future pregnancies). I was lucky that I was able to manage it using diet, no meds. But it was once again another hurdle in an already stressful time.

I wish I had been able to write, during those months. If you count backward, you'll see I did post a few times early on, but nothing related to what I was going through. I didn't have the words, and now it's hard to remember well enough to really write about. But I can tell you - the fear was immense. When the baby was too little for me to feel it yet, I feared miscarriage every day, every time I went to the bathroom. When the baby was big enough for me to start feeling it, but not consistently, I worried every time it wasn't moving. I went to the OB for many extra doppler checks, for reassurance. I am very grateful for an OB that understood the stresses and the extra need for reassurance that I had. When the baby was big enough to start having patterns in its movement, I was "blessed" with a baby who didn't really have patterns! I was constantly paying attention to the baby, to the point of ignoring many, many other things in life I probably could have been more on top of.

I had therapy every week, like I had been doing since Charlie died. But because we had just moved, I had to find a new therapist. The first therapist I went to was nice, but not a good fit at all. I felt like I got nothing out of those sessions. So it took some hunting, but I found another, who I still see, and who I really like. Sessions with her helped make the anxiety reasonably manageable. Interestingly, I tried attending an online group session for women who were pregnant after a loss, and I found that my level of anxiety was actually somewhat lower than those who attended the group - I actually stopped attending because it made me worry more. The opposite effect of what I needed...

Our plans for the birth were heavily influenced by our experience with Charlie, as you might expect. Toward the end of pregnancy, I was having weekly NSTs (non-stress tests, basically just having a machine "listen" to the baby's heartbeat, your contractions, and baby's movement. How they fit together gives an idea of how everything is going). At one of the appointments when I was also seeing the OB, we talked about plans for the birth. I know loss moms approach this in a huge variety of ways. In my case, I was balancing a wish for a very natural approach with trying to minimize risks. We had pretty much decided for an induction a few days before the due date, but at the 38 week appointment, one of the NSTs showed a slightly alarming result: during one contraction, the baby's heartbeat didn't slow during the contraction (normal), it dipped after... which can mean issues with the baby getting resources from the placenta (not a good scene). Despite it being a one-off result - all other NSTs and the rest of that one were normal - she didn't want to take any risks of the baby having a problem. Especially given our loss background - the last thing she wanted was to raise our anxiety or have another tragedy. So she told us that she felt we should not even go home - we should just go straight to the hospital for an induction. Luckily, because that appointment was when we were going to do birth planning, I had my husband with me. The OB gave us some time to talk it over, and unfortunately we didn't think about stopping for lunch on the way to the hospital! I was induced that day.

I had been somewhat proactive in planning for grief triggers surrounding the birth, so I had a folder in my suitcase with a door sign and a letter to providers, to clue people in about some of the requests I would be making. For instance, we made it clear that this was our second child, and that it was ok to mention Charlie. I asked for things to be explained in great detail to me, because knowing exactly what would happen helped keep me calm.

The birth went really smoothly. They had me on monitors the whole time since the reason for induction was the possibility that the baby wasn't getting enough oxygen or could have issues (the baby did fine throughout labor). They did a very good job of being sensitive to our requests.

Toward what felt like the eternal middle of labor but turned out to be near the end, everything started going very quickly and my OB barely made it in time! They were having trouble monitoring the baby because of how low the baby had gotten, so they were a bit worried and wanted to make sure the baby had enough oxygen. This was the only truly panicky moment for me, because the way to help the baby get more oxygen is to up the mom's oxygen - and I have a long seated terror of gas-type masks from a surgery I had as a kid.

The baby came out fine, though I later learned there was a loose cord around neck and shoulder. This did not cause the blip on the test that made us go in for the induction - that remained unexplained.

It was a boy! The OB held him up in such a way there was no doubt! He was a tad slow to respond initially, so some NICU doctors that were standing by rubbed him down and got him good and mad and squalling, while also getting his birth weight (7 lbs 5.6 oz). Then I finally got to hold my little darling.

....

(Pictures are coming up soon, so this is a good place to stop if you want to avoid those)

....

I think I'll take another post to talk about the hospital stay and beyond. This already covers a lot, what with pregnancy AND birth! I may expound another time on certain aspects of how grief intersected with pregnancy or with birth, as I see how writing about it goes, and if there's interest. I'd also like to talk specifically about how to support a loss mom going through this, based on my own experiences, for those of you who would like to have some ideas of how to compassionately support your friends who have been through pregnancy loss, miscarriage or stillbirth.

Here is a picture of our Sweetpea ❤️. If only there were a little 4 year old Charlie there too...

Our little Sweetpea

Yours,

Sarah

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Resource list: Visit my spreadsheet at www.tinyurl.com/infantloss

Father's Day Is Hard For Us

(Topic: Grief, dealing with grief, triggers, pictures, loss, stillbirth, pregnancy and infant loss)

Hi Friends,

Charlie was born on Father's Day.

This weekend is so, so hard for us, every year.

It's odd, how my mind works. It doesn't know what date Thursday was that year, or Friday, or Saturday - I only remember the date of Sunday because it was his birthday. But I remember what happened by the day of the week.

That makes Father's Day weekend hard, harder than his birthday date, actually. Because I remember (can't help remembering, which is akin to a PTSD type reaction) based on the time of day and day of the week.

This year, I'm distracting myself to get through it. We're still honoring Charlie with a birthday party, but overall, I'm focusing on other things (and you know, I have plenty of logistical stuff to focus on...).

But I'm triggered by so many things. Even last week, basically anytime in June, I'm much more sensitive. The year Charlie was buried, there were little blue dragonflies in the cemetery constantly. Last weekend I saw teal ones with black wings. Nothing alike, except the vibrancy of the color, and that they were dragonflies. But I cried. I'm on edge constantly, never knowing what thing might remind me.

This weekend is the worst, though.

Thursday was the night Charlie was still fine. The baby was still moving on Thursday, I'm fairly sure. We played a boardgame that night, and I felt him wiggling and shifting. I'd been having braxton hicks all week, so I knew baby was getting ready.

He must have turned to get into position that night, and turned the wrong way and gotten tighter tangled.

Friday something was off. He was sideways for a bit, and I wasn't believed about that, except by my hubby. Baby had been so consistently head down, so I couldn't possibly be right, right?

Saturday was the horrible day. The silent ultrasound. The hospital. All the medical side of it.

Sunday he was born, Sunday we held him.



It's so hard, being thrust into those memories by anything and everything. By noting the day of the week, noting the time of day, just being - just knowing, at this time, this happened.

I don't want to viscerally remember. I want the bad memories to be more distant.



I love Charlie so much. And there was such mixed emotion on his birthday. Seeing his little nose, laughing at his giant hands and feet, after I'd given my best friend such a hard time about her baby's big feet. So many things I remember and never want to forget, but there are so many things I wish I at least had more distance from. So much emotional pain, wracking sorrow.

So, this weekend is hard. This year, I'm leaning toward distractions, and have asked friends to help me find funny or silly or interesting videos to watch (but avoiding trigger issues), so I can laugh, and focus on something besides the deep ache inside me.


This is my baby. I love him, and I miss him so much.

Our family, complete.

My favorite picture from that day. Daddy, holding Charlie.

Yours,

Sarah

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Resource list: Visit my spreadsheet at www.tinyurl.com/infantloss

Not Weak OR Strong: Filling My Toolbox

(Topic: Vocabulary, Definitions)

Hi Friends,

A few weeks ago, I posted about the word "strong", and how it applies to me. Or more specifically, I expressed my frustration that the word has two meanings - but that the meanings are completely opposite.

I had several friends comment or chat with me, saying they thought I was strong - and then telling me how they meant the word "strong" - and I really appreciate it, because I now know how that person means it.

However, that doesn't actually help the issue, because the fact is, the word is ambiguous in our culture at large. And because of that, I still don't like that word. Our culture, as a whole, still uses "strong" in two ways, and often with emphasis on the idea of not showing emotion in public.

I had one conversation, though, that changed the question completely.

What if the question isn't "Am I strong?" - what if the question becomes "How am I dealing with my situation?" and "What skills do I have?"?

This changes the whole conversation (and, key point, uses words with no ambiguity).

For instance, an example of what had made me feel "weak" before: When the outfit I picked out the night before an event didn't end up fitting right, I panicked and got overwhelmed and cried, and couldn't even figure out a new outfit.

After this conversation with my friend, she helped me understand that my body (and bodies, being what they are, aren't great at telling the difference between physical trauma and emotional trauma) just knew that it was under attack (from grief) and that the attack was ongoing and needed attention. Thus, a minor setback (the dress not fitting right) became something extra to deal with - and was "too much". It's not that I've lost the ability to deal with a minor setback. My resources are simply all already used on the "attack" (grief) and thus aren't available for dealing with additional issues.

That is the "how am I dealing with it" portion: my resources are all allocated to grieving, leaving me with little leftover. So then the "skills" part: the more skillfully I tend my grief, and the more extra skills I lay down for dealing with other things that come up, will mean that my resources will be more usefully allocated and I will "deal" with life better.

Skills such as noticing that I'm getting overwhelmed, and then employing tools such as meditation, relaxation techniques, or other techniques for calming down or removing myself from the trigger (all of which are tools, but still require practice to build skills in using them, too). And the more tools I have, and the more skills I have, the more I will function more normally, and the less the grief will overwhelm everything (time helps with this, but is definitely not the only factor).

So my friend says: we aren't "strong" or "weak": we're building skills.

I like that.

Also, I now also pick out two outfits the night before events: one that is pretty and might work, and one that is fine but comfy and safe. So I've added that "tool" to help avoid a situation that I know to be overwhelming.

As my friend always signs off:
You are loved, and you are safe. (She's a pretty awesome friend.)

With love,

Yours,

Sarah

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Resource list: Visit my spreadsheet at www.tinyurl.com/infantloss

Am I Strong?

(Topic: grief, strength, definitions)

Hi Friends,

Several times recently, I have been told I am strong. Over the last few years, it's happened a few times more. Most frequently I have been told this by strangers, who don't know anything about me, and who have just heard about Charlie - and if I'm not crying, then I'm "strong" and they don't think they could have done it.

Here's the thing: They could have done it.

I had two choices: live with it somehow, or don't live.

People don't seem to realize that what they're proposing as an alternate option is suicide, and get really uncomfortable if I point that out. Suicide was never an option for me, but I know people who have been suicidal or who at least wish they were dead - so they could be with their child. I get it. That's just not how I think of it (for me, personally). I don't wish I were dead, I wish Charlie were alive.

So, since suicide wasn't an option for me, I lived with it. With my new, terrible, sucky reality. Living with it does not make me strong. I see myself as weaker than before, actually. But let's take a sec to define what strong means, because that's actually the crux of this matter. What do people mean when they say "you're so strong"?

a) that I can deadlift 150 lbs?
b) that I don't show emotion in public?
c) that I DO choose to talk about hard topics in public?
hint: it's not a.

B and C are usually not used by the same person, because they have contradictory meanings. And that's where I run into issues. When strangers use the word "strong" on me, I have no idea what meaning they are using it as, and since our culture usually goes with B, it's pretty certain that's what the stranger means. But is that really strength?

One loss mom talks about strength here, and she seems to view "strength" as a mask you put on - so more like B. In fact, that definition seems to be pretty culturally prevalent, actually.

But admitting that something is hard - and being open about it - and being emotional and vulnerable in public - is actually more work, and so some people choose to understand "strong" to mean option C.

Unfortunately, option B and option C are completely diametrically opposed, and having ONE word mean TWO OPPOSITE THINGS is really, really problematic. So if someone says I'm being strong, I have no idea if they mean I'm repressing my emotion to appear unmoved in public, or if they mean I'm being "bravely open about it". As you might guess, I really don't find the first option to be a great or healthy idea. (I am not talking about whether or not you choose to share about your loss. That's a different topic entirely. I'm talking about how people respond once you do decide to share.)

A few paragraphs ago I mentioned that I feel like I'm weaker than before. Here's why I say this: In a world where I had one choice (in my mind), which was to live with what had happened - somehow - because the alternate was to devastate my husband further (and because I want to be with him, and wish Charlie were here, not that I were dead with Charlie...), in this world where I had one choice, I chose it. I lived. My reality sucks, sometimes, though. Before Charlie died, minor things going wrong didn't upset me as often, or to the level, that they upset me now. Before Charlie died, I wasn't overwhelmed as often. Before Charlie died, I could sometimes comfort or help other people without becoming upset myself. And because one of the prevalent views of strength in our country is to not need help - and being upset usually involves needing help, or comfort, or some sort of assistance - it did not and does not feel like strength. It feels like weakness.

But this is not the side of me that most people see.

Most people see me in "public" because they are the "public". I often reserve crying and shows of emotion for at home. In fact, our culture often expects men to "be strong" for their wife - which means that grieving men are expected to not show emotion when their wife shows emotion - which is not healthy for the grieving man, either.

Repressing emotion isn't healthy for any of us, but it can feel shameful, embarrassing, or weak to cry or show sadness or other related feelings (depression, anxiety, being overwhelmed, PTSD) in public. So, many grieving parents squash or hide it, and even if they choose to talk openly and passionately about their loss and even if they are activists for change in the world of pregnancy and infant loss, it often comes with the parent quashing the feelings that would be considered "weak emotion" when in public.

So if you ever want to say I'm strong, know that I'm struggling with how our culture usually defines the word, regardless of how you mean it. Please consider being more specific about what you say ("you are brave to speak out about your child" or "I feel like I would cry all the time. I bet it's hard."). Each loss parent has different phrases or topics that might be difficult, so think about what you say - but don't let that stop you from talking to us. It's hard to reach out when you are grieving, and it can be isolating. If I don't say yes right away, don't force me, just be patient and ask again another time. And if you aren't sure about whether something you say would be a phrasing that might bother someone, explain what you are trying to mean, and ask them how they would like you to say it. I know I truly appreciate the people to take a minute to try to understand my worldview, and language is an important aspect of it.

Love to you and all of yours,

Sarah

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Resource list: Visit my spreadsheet at www.tinyurl.com/infantloss

Thoughts about Easter

(Topics: Grief and Anxiety, mental health, Easter/Religion, cemeteries)

Hi Friends,

The other day, I spent the day with Charlie.

I have been feeling really, really sad and overwhelmed lately. Sometimes, when I'm feeling heavy, it's very hard for me to figure out why - and knowing why makes it easier for me to either live with the feelings, or to find something to do to help.

I felt like I've been having a harder time than usual staying steady when life threw me curve balls (as life always does, on smaller and larger scales). When my hubby also commented on that, I decided to call my therapist to see if I could get in for an extra session.

(Side note: there is NO SHAME in asking for extra help! I know it's hard. It's hard to know when to ask, and it's hard to ask. It can be hard to admit that you aren't able to do it all yourself. I encourage you to set up support systems so it's easier to ask for help. For instance, I have friends who I trust, who know my whole story and things I struggle with. I can easily vent to them, because I don't have to explain anything. But I also don't want to burden them - so I also have a therapist. Therapists are AMAZING, guys. If you try a therapist, and you don't feel comfortable, it's ok to go to a new one. FIND THE RIGHT FIT FOR YOU 💗💓. Once you find someone you like, the point is that they are trained to help and trained to listen - but they are OUTSIDE the situation. They won't get hurt feelings, and they won't get mad. They JUST HELP. And it's AMAZING 💕💓.)

I got an extra session to get help, because even things that seemed like they should be little were feeling big. My therapist is my outside perspective, and helps me find my rational brain but also helps me acknowledge my emotions.

In this session, she helped me identify stressors that were overwhelming me, or stressing me out, or triggering my grief - even when sometimes it was super subconscious.

I actually prepare a little for my sessions by taking notes on rough days, of what bothers me or big things that happen. This helps guide what we talk about and helps me feel like we use the time a little more effectively (this is not everyone's style - you do you!).

Above the line, notes to tell the therapist.
Below, notes written afterward, with some of what we talked about.

After we went through my list, I asked - WHY?? Why is everything so hard right now?? And she literally sat there and counted things off on her fingers, guys. Counted things back off to me, that I had told her about, but also helped me identify a few more things that had been in the background, that I had not yet seen clearly enough to name.

One was that, the last time we moved, it was not only right after Charlie died, it was literally because Charlie died. We had planned to wait to move until he was 3-6 months old before we moved. Instead, we were in our new place about a month after. So since we're moving sometime this summer, that might be a reason that packing and planning is so hard for me to work on.

One of the other things she pointed out is that Easter is - like Christmas - about a mother, but this time about the son dying. And coming back again...
Mary is a complicated figure for me. Really complicated.

So after we'd identified what some of the triggers were (there were about a half a dozen others, too....), we talked about how to find some relief. Some comfort, and a way through, through the sad and the pain, because the stress isn't as heavy when the sad isn't weighing me down.

The other day, I spent the day with Charlie.

The main solution she suggested was to let myself feel. To spend some time with Charlie, if I could, but to remember and feel and cry and just be, with my pain and sorrow, and weep if I need to.

The universe (God?) listened to my need. I had been worried that I couldn't find time, since it's a decent distance to Charlie's grave; and to sit and feel, I couldn't be rushed. But one of my scheduled items got cancelled, and suddenly I had a whole day ahead of me, to go to my little boy.

I spread out my blanket, and opened the umbrella to keep the sun off (and in case it rained), and I sat down with Charlie, and lay with him, and talked to him.

I told him how much I missed him and how much I wanted to hold him... and I wept.

Tears do cease, at some point. The pain behind my sternum, the pressure in my throat does ease, as though the tears wash out a tightness and release something.

I weeded his garden, and touched some of the decorations and memorials we have for him there.

And I lay with my chest over where he is buried. The closest I can come to holding him.

The other day, I spent the day with Charlie.

It means so much to me, to have a place to care for, that is just his, and his alone.

I have a complicated relationship with Mary, Jesus' mom. Her baby was born alive, which hurts at Christmas. She gets to see him grow up. But she suffers through his death. I imagine that she hurts inside, behind her sternum, so tight it hurts to breathe. I imagine she weeps so deeply she convulses in Joseph's arms. I imagine she knows this pain. But. He lives again. My Charlie doesn't yet.

Jesus died right before a Jewish holiday. That meant that his body had to be dealt with before the sun went down that Friday, and couldn't really be tended to properly until the Sabbath and the Passover was over. Joseph of Arimathea was the guy who put the body in the tomb in the right cloths. He made sure the basics were taken care of, that were important.

But women went to care for his body, to lay him to rest and to say their last goodbyes. Those are the women I watch, in this story. They prepare the ointments to rub on the body, to do the rites of burial and death from their culture, to make things right, as much as you can when someone dies. They go back after their holiday, to finish things.

We know who those women were, because they were the eyewitnesses that Jesus was gone (alive, risen, back).

I care who they were, because they were the grave tenders. The ones who would have placed the headstone and served the funeral lunch and planted flowers with his mom, if it were now.

The book of Matthew says it was Mary Magdalene and the other Mary. The book of Mark says it was women including Mary Magdalene, Mary the mother of James the younger and of Joses, and Salome (so that was a pretty large group). The book of Luke says it was the women who had followed Jesus from Galilee, and also lists them as Mary Magdalene, Joanna, Mary the mother of James, and the other women. In the book of John it's only Mary Magdalene.

No matter who it was, they cared. They took the time to go, and planned to care intimately for his body, hands on. I wish so hard I'd been able to do more of the funeral care myself, for Charlie. This isn't something our culture is used to, anymore. And I did not know to ask for it, and I don't know if I would have wanted it at the time -- in hindsight, though, I miss caring for my little boy, giving him the final kiss in his coffin.

I saw a picture, last month. It was a mama and a papa, tucking their baby into his coffin, into his "forever crib". Seeing that, suddenly my heart longed for having done that for Charlie.
To care for a body, to minister to their last cares on earth, is an act of pure love. Of closure. Of peace within sorrow.

As I lay with Charlie, my breast filling the hollow in the earth beneath which he rests, I felt complete and yet bereft. Filling the hole in my heart, the gaping hole in my life with the closest thing I could.

The other day, I spent the day with Charlie. 

While I was there, I read a book to Charlie. We read to Pookie regularly, and it's a thing we can hold onto - one of the things we'd looked forward to, so much. So many other things were taken away, but that we can still do.

I also read a graphic memoir, called Rosalie Lightning, written by a father whose daughter died of SIDS. His experiences - his raw emotion - reading that while visiting Charlie -
He talked of how a loss parent's attention can be grabbed by other children of the right age, how we can stare, stare at what could have been.

Today is the day before Easter. The in-between. The waiting - for us, who know how the story ends. For those back then, the second day since. Counting life based on the life-changing moment. For me, two days ago was 2 years and 10 months. Since.

Charlie is nearly three. How do you plan a birthday party for the 3rd year since a death?

I'm always aware of how old he is/would be/would have been.

Today is the day before Easter as I write this, Saturday. Some churches hold a vigil, traditionally held from before midnight until after midnight, to celebrate the moment of Easter at the turning point of the night.

We went to an evening vigil service. When the priest was preaching about the Easter life, the Christian life, is to focus on LIFE not death - all I could think was, how intrusive is death. How hard, not to think of loss, even with the promise of life.

Right then, two 3-year-olds started to get restless and play.

My Charlie.

I should have been dealing with a restless Charlie.

Every day, I spend the day with Charlie.

No matter what, he's on my mind. This is a holiday (holy day) about life, promise of life, promise of future life, power over death.

My son is dead.

My religion gives promise, hope.

But everyday, my son is not in my arms.

My son is on my mind. My son is in my heart. Everyday, he is with me. I'm the one staring at your son, thinking of what my son might have said, might have done, and hurting.

I'm the one rocking a teddy bear, because my baby is dead.

I understand the hope with my head, but not yet with my heart. I have to take any tiny bit that my heart can understand.

To the lady who passed the peace to my bear, please know that in my heart, you passed the peace to my son. Thank you. I may cry, but my heart is lighter.

💛

Yours,

Sarah

To subscribe, find the "subscribe by email" note in the left column and enter your email there. Links to posts will be emailed directly to you whenever I post them! Nothing else gets emailed.

Resource list: Visit my spreadsheet at www.tinyurl.com/infantloss

Grief Language and Mental Health Issues related to grief

(Topic: Talking about grief, mental health and related items, and the language that we can use to talk about them)


Dear Friends,

*** NOTE: I AM NOT A MENTAL HEALTH EXPERT, OR A DOCTOR. THESE ARE MY OWN OBSERVATIONS. IF YOU FEEL YOU NEED HELP, PLEASE CONTACT A MEDICAL PROFESSIONAL ***

One of the things my husband and I have noticed is that we have developed a bit of our own language to discuss some of the mental health issues going on (basically all of which are resultants of grief).

Fascinatingly, there are multiple mental health issues that are a natural extension of grief. I've only really read about grief following infant loss, so my observations are based on my own experiences, and on what I've read - in both cases, this is limited to pregnancy and infant loss scenarios. Grief is a funny beast. Like other issues that affect your mental health, it's hard to figure out how to explain when you're inside it because it affects how you think and act, and it can be hard to understand when you're outside it, because it seems to alter the personality of the person you're trying to understand.

Overall, though, some common reactions seem to be anxiety-style symptoms, depression-style symptoms, and PTSD-style symptoms. I'm phrasing it like this, because often the person who has these symptoms doesn't have enough or quite exactly what would be truly diagnosed as full anxiety, or full depression, or full PTSD. There are many other manifestations too, such as sleep issues, a feeling of empty arms, and many other things. They are, simply, grieving, and grief is a many-sided thing.


There is an aspect of mental health issues that is purely medical: for instance, depression (when on its own) is actually your brain not doing its brain chemistry right. In this instance, then, one of the more obvious treatment routes can be medication, to re-balance the chemicals. (This is parallel to, say, diabetes: your body isn't doing sugar chemistry right, so you use medication to help re-balance the sugar chemistry so you feel better and are more healthy.)

Another aspect isn't as directly medical, and is much more emotional. That's where it gets seriously complicated to put into words. Since grief is a complex set of feelings and reactions based on an emotional event, a lot of grief falls into this messy category. And because it's a messy beast, and impacts YOU in your current age, place in life, and personality, it can mean that the resulting mental health effects can vary hugely. In this case, I have found it extremely helpful to go to a therapist, because they have the training to give me tools to cope with the issues better, and the distance from the emotion and the issues to have a cool head and an outside/third-party perspective

One of the things I do with my therapist is get her help figuring out which definitions fit me, and how I relate to the technical details of what I'm experiencing. I actually feel I deal better with what's going on if I have words to put to it.

Because so much of the grief experience is personal, it was helpful to me and my hubby to create a bit of our own "code" for talking about what we are experiencing, too. This enables him, for example, to alert me that I'm acting like my anxiety is bothering me, but in a fun way that doesn't make things worse. It's not necessarily obvious to outsiders, either, but that wasn't the point - it really started as a nerdy joke and just worked for us.

Specifically, the word that we use is based on a quote from my favorite Shakespeare play, Hamlet. Towards the beginning, Hamlet's dead father, as a ghost, says that he can't tell Hamlet about where he spends his time - but if he did, it would shock Hamlet so much his hair would stand on end like porcupine quills. Here's the quote:

That last line, particularly.

This is the picture my particular copy has!

 The term "fretful porpentine" is the phrase we latched onto. Because when I'm anxious, I often act fretful! So now, we talk about my porpentines acting up, or running around.

Why do I find this helpful? It helps me distance myself from how the anxiety feels. It helps me say "it's a feeling I'm experiencing, it's not my whole world." It also helps me realize that I can regain some amount of being rational, and helps me prevent spiraling into panic or into a dullness similar to depression (depending on the reasons that the anxiety is being an issue).

 I'm not saying that everyone with grief or grief-related issues does this. I'm guessing some people do, and I'm pretty sure many people don't. Hubby and I are both language-y and word-y types. We both love to read, and write, and pun, and play with words. So for us, this was a natural way for us to work through and deal with the issue.

Yours,

Sarah

To subscribe, find the "subscribe by email" note in the left column and enter your email there. Links to posts will be emailed directly to you whenever I post them! Nothing else gets emailed.

Resource list: Visit my spreadsheet at www.tinyurl.com/infantloss

Copyright anxiety

(Topic: Anxiety, copyright, right-of-usage)

Hi Friends,

I'm not sure if you've noticed that I try to post twice a week. Generally on Wednesdays I try to post something specific to life after loss, and on Saturdays I often keep it lighter with pictures of something I've made.

Recently, though, on January 26th, I missed a day without letting you know. And after that post, any pictures in my blog have had a copyright notice on them, either as a watermark or as text across the picture. Why?

Well, a blogger friend of mine has been having issues with her images and sometimes text being used without linking back to her blog (attribution), and without permission.

If someone wants to share one of our blog posts, it's easy: copy the link in your browser, and paste the link wherever! If you paste in Facebook, then your post in Facebook will have a preview of the post with a link and a picture. If you paste the link in Pintrest, it will let you choose which picture to show.

What you should not ever do, is save a picture and use it as though it were yours, without saying where it comes from. ALWAYS give credit to the person that the picture is from!

In the United States, by writing something, I own what I wrote ("copyright"). So anything that I write in my blog in my own words is mine. Out there for people to read, but it's mine! So to remind people, I put a copyright notice at the bottom of my blog.

~~~

Well, I had a conversation with my friend on how to prevent unauthorized usage that doesn't give her credit, such as adding a copyright notice at the bottom of her blog, adding watermarks or text to her images, and such, and talking with her on how to report Facebook or Pintrest posts that use her work without linking to her blog or giving her credit, and also advising her how to contact site administrators for other websites if people there are using her material.

I hope this conversation helped her.

Unfortunately, it had the side effect of making me worry that the same sorts of things were happening to my pictures and my posts. It's not as likely (her topic is much more sharable than mine) but it worried me so much that I couldn't post that day. Or the next day. Or the one after that.

The downside of life after infant loss is that you often end up with side-symptoms, like depression symptoms or anxiety symptoms or ptsd symptoms (though often not enough for a full diagnosis of that thing, interestingly). In my case, I have grief with a side of anxiety. This means that small things loom really large, and the idea of adding watermarks going forward was already difficult, but add to it the thought that someone might be stealing Charlie, and that I should add watermarks going back through all the old posts too!!! You might imagine that this ended up becoming a pretty hefty roadblock, mentally.

Once I worked myself back up to it, I started adding watermarks and text to my images just on the posts I was writing new, though I am also slowly working on older posts too. I'll be keeping my eye out for people using my material without permission - but if you see it first, please let me know!

In the meantime, if I post something useful, that you want to share, PLEASE DO!!!
JUST BE SURE TO DO IT BY COPYING THE LINK, NOT THE PICTURE!!!

Thank you all so much!!!💗💕


Yours,

Sarah

To subscribe, find the "subscribe by email" note in the left column and enter your email there. Links to posts will be emailed directly to you whenever I post them! Nothing else gets emailed.

Resource list: Visit my spreadsheet at www.tinyurl.com/infantloss

My new hat

(Topic: Knitting)

Hi Friends!

Today I got to take part in a really cool local yarn shop's knitting workshop. I rarely make things for myself, so making a hat FOR ME, and also IN ONE DAY, and WITH FRIENDS was a super cool opportunity!

Here are some in-progress pics, and, at the bottom, me wearing the finished product.

The top, made first. It's a wonky shape, but it comes out awesome.

Starting to be more hat shaped. I'm in LOOOOOVE with this color! It's a high-quality 100% acrylic yarn.

Done except tassel!

Yeah, love this yarn shop. 💗

Handmade tassel.

Done!!! So pretty!!!

I batted at the tassel for a full minute. I finished it about 2 hours ago and haven't taken it off yet. Super comfy!

Quick post, because I was at the yarn shop all day!!! I think I actually knitted for 10-1/2 hours today, making the hat from start to finish. It is a simple project but I think it is really cute, and I'm thrilled with the result!


Yours,

Sarah

To subscribe, find the "subscribe by email" note in the left column and enter your email there. Links to posts will be emailed directly to you whenever I post them! Nothing else gets emailed.

Resource list: Visit my spreadsheet at www.tinyurl.com/infantloss

Empty Arms, Weighted Bears (And Bonus Halloween Pictures!)

(Topic: Weighted bears, grief, grief recovery, infant loss, also Halloween!)

Our Molly Bear, one weighted bear option

Introduction

This is another shareable post! Please feel free to share the link to this blog or this post specifically.

In honor of Pregnancy and Infant Loss Awareness Month, I am focusing on topics that will help friends of families going through the loss of a baby, geared toward making common topics accessible to people outside the "loss community".

Previous posts in this series include:

Pregnancy and Infant Loss Awareness Month (an explanation)
What can I say? Ideas on how to talk to a grieving friend
Wave of Light
A brief glossary of pregnancy and infant loss
How Common is Pregnancy Loss?

Please feel free to share any of the above links or today's post to anyone you think would benefit from it.

Why Empty Arms?

After an the death of a baby, the mother often has a physical reaction to the loss in addition to the grief and mental health issues that can often result.

One of the common physical symptoms is a feeling of lack, emptiness, wrongness, or too-lightness in the areas of the arms, wrists, and hands. This is due to the expectation of having a baby to hold, but it goes beyond just a mental lack, it truly is a physical ache or emptiness. Whether or not a particular mother has this, or if so, whether she finds it disruptive, can certainly vary, both in presence and in degree.

For me, personally, I have found this symptom to be very uncomfortable and nerve-wracking to experience.

Getting some extra snuggles before a plane trip (weighted bears look weird on X-ray, so it's safer to leave them home)

Why Weighted Bears?

One of the methods that people have come up with to deal with that empty/lack/ache is to hold something heavy - even something as simple as a bag of rice, or a hot water bottle (I have one with a tiger cover, which means something to me, so this was a super helpful option when I couldn't have my bear).

That evolved into creating weighted bears, and, more meaningfully, weighted the same as the child you lost. There are several groups that make them, each with their own guidelines, but they are often not-for-profit and try to keep the costs to the loss parents either zero or very low (such as shipping costs).

Who makes them?

There are several groups that make bears weighing the same as the baby. I don't personally endorse any one over others. I will list all of the ones I'm aware of. The reason I personally have one from Molly Bears is simply because that's who I heard of first when I originally got one!

HEALing Embrace	https://www.healingembrace.org/	You can request care packages and weighted bears, themed or personalized in some way based on your story.
Heart to Hold	www.ahearttohold.com	stuffed items weighted same as child
Molly Bears	www.mollybears.com	Make teddy bears that have the weight of your baby. When you order, you tell them some meaningful themes/ideas and they will personalize the bear in some way.
Alexa bears	https://www.facebook.com/alexabears/	Weighted bears
Comfort Cubs	https://www.thecomfortcub.org/

They're Family x2

Weighted bears are a representation, or a form of avatar, for the child who died. In many families, the bear will be present at family gatherings and in family photos, holding the place of the baby. Imagine that you had a dear relative, like a grandma or an uncle, who passed away. Maybe at Thanksgiving you might set his or her place, and put a picture of that relative on the plate. Similarly, many people's bears are in a place of "representation", and not a toy. However, also look at how the mom and dad are behaving around the bear.

In our case, the bear has his own name (beyond the name of the child he represents), and his own imaginary personality (something like Calvin interacting with Hobbes, or Christopher Robin with Winnie the Pooh). So in our case, he's a bit like a toy, a bit like a family member, and a bit like a place holder for our son Charlie. He's family in two ways: as a representative, and as his own "Person" (as Pookie, our bear). So to me, a picture with me, hubby, and Pookie is just as valid as a family picture as one with me, hubby, and little Charlie - especially since we can never get more with Charlie.

Note: Here's how Pookie got his name: Charlie's full name is Charles Peacock [+last name], and we nicknamed him Charlie - based on his first name. The company we got the bear from uses full names, so they named the bear Charles Peacock Bear... which is fine, but I wanted to make a distinction about when talking about the bear vs. the baby (not everyone does, many would just say "Charles Bear" and that's fine!). So based on the middle name - Peacock - we came up with Pookie!

Bonus Halloween Pictures :)

Not everyone dresses their bear, but I do! Pookie Has his own dresser and everything :)
He has a yellow rain hat (currently misplaced, which is driving me crazy), and people would call Pookie Paddington when he wore it - Paddington's hat is not yellow except in one stuffed animal version - the hat should be red if you look at the original book. Since people kept thinking of Paddington, though, Pookie decided to be Paddington for Halloween this year! Pictures below :) Enjoy!

Pookie and his pumpkin! Also the new tiger toy he picked out at Ikea.

Pookie reminded me that I'd promised he could wear his pumpkin pajamas last night! The white parts glow in the dark!

There he is, all set! Ready for travels and adventures, with his jar of marmalade :)

My little PaddingPook!

Yours,

Sarah

To subscribe, find the "subscribe by email" note in the left column and enter your email there. Posts will be emailed directly to you whenever I post them!

Resource list: Visit my spreadsheet at www.tinyurl.com/infantloss

In A Different Light

(Topic: flowers, mental health, light)

Dear Friends,

Lately I have been admiring the lily.

Not Plato's Lily, not some ideal idea of a lily... I've been admiring the beautiful double lilies that grow in the garden of the house I rent. Beautiful salmon-orange with red and a touch of gold, with curling edges and the "double" multiple layers of petals. The ones that seem to spring forth fresh every day, yet provide a constant show of exuberance couched in a verdant bed of leaves.

Those lilies.

~

Several days ago I posted a message on Facebook that I was having a tougher day - not bad, but that I would really appreciate something cute or happy to look at or think about. Amongst the many cheerful, positive, and uplifting statements was a suggestion to go outside and spend some time with flowers.

At the time, I was involved in an activity I couldn't leave, but that evening I did go out and pick this lovely bouquet from our garden:

5 stems, each with one bloom. I initially snipped out the center parts to try to eliminate pollen in the house, but then realized that some of the center petals are actually stamen and fascinatingly had little curls of pollen at their tips, so each of the blooms had some minor trimming before being arranged in the vase.

It really did help me feel somewhat better for a bit, and I even set the table nicely and made a salad!

But then those lily flowers didn't last. By the next day, they'd closed up and shriveled, and I was very disappointed. But there were other buds on those stalks. I had no idea if they'd open, so I had a strange flower arrangement for a few days.

I took these three pictures, from the same perspective. Take a minute to look at them...

The only difference between left and right is lighting and focus, and the middle one has a filter that plays with tinting.

But isn't it funny, how the exact same lily stems look so different? On the left, they are just silhouettes, with no potential. You can maybe guess what the picture shows, from the shape, but it could be something dry and done, like seed pods. In the right picture, when the lighting is changed to focus on the lilies themselves, the potential is suddenly there. You can see the buds, the slight orange tint, the hint of possibility. And all three show a beauty, I think, of form. The middle one makes me think of upward motion, and makes me think of Heaven, just a bit.

~

I don't know what I'm trying to say with this. That things have different sides, that you can see things in different lights? Maybe. You could certainly apply that metaphor to my life in a thousand obvious and less obvious ways. Maybe I'm just saying thanks, for helping me take a moment to see, and to notice.

~

And they did bloom again.

Yours,

Sarah

To subscribe, find the "subscribe by email" note in the left column and enter your email there. Posts will be emailed directly to you whenever I post them!

Resource list: Visit my spreadsheet at www.tinyurl.com/infantloss

Dear Charlie's Mama, Are You OK?

(Topic: Emotions, Support networks for grief)

Hi Friends!

This is a FAQ!!! I have enough readers now that I've started getting occasional questions, and this post will be structured based on that. Thanks for all your feedback and support!


You seem sad. Are you OK?
 
Thank you for your concern! Yes, I'm generally ok. I have hobbies, a therapist, a great family, and fabulous friends. Having something to do and people who care means that even if I have a sad moment, I can get through it to a neutral moment or a happy moment too.

While I may seem to focus a lot on sad topics, that is because of the way I've structured this blog: While Saturday posts are generally about fiber arts and emotion-neutral, Wednesday posts tend to focus on grief related issues. That does not mean, though, that I experience these grief issues every day, or constantly, or am always down. But having you check in on me is great, thank you - if I were really struggling, I might not think of reaching out for help, or I might not emotionally be able to.

Sharing things like hotline numbers is important, and I'm sharing one for infant loss and grief support below. But sometimes it can be daunting to call a stranger. If there is a friend you haven't heard from in a while, reaching out to them and just checking in can sometimes be a huge help. It can be very hard to admit you need help, and sometimes even harder to ask for it.

For grief and loss support. Image from First Candle's Facebook page.

Is every picture on your blog something you made or photographed?

In short, yes. Unless I give credit to someone else, all photos are taken by me, all artwork is by me, and all knitted and sewn items are mine. I'm very careful to give credit when I use an image from online that does not belong to me, though I sometimes forget to give my family credit if some of the snapshots of Pookie and such are by them! It's not intentional, though: I try to always give proper credit or citations if I use anything from anyone else. The only exception is that you may notice me anonymize things for people's privacy, and that is still with their knowledge if at all possible.

If you see a drawing I made, or a photo of something I handcrafted, and want to know more about the project, or the inspirations or materials, just ask in the comments below that post!!! I'd love to answer.


Where do I find your blog?

If you are reading this, you've found me! If you'd like to share, though, here are the places that Being Charlie's Mama can be found:

• http://clothespress.blogspot.com
• Email subscription, instructions here for how to subscribe (The day I post something. No spam or other emails, just a preview and link to the actual blog post)
• Instagram @being_charlies_mama (links to the actual blog posts)
• Facebook site www.facebook.com/beingcharliesmama (links to the actual blog posts, and occasional reposting/sharing of articles from other resources)

So far I haven't gotten many more questions that aren't covered by these, so please comment below if you have more questions!

Yours,

Sarah

To subscribe, find the "subscribe by email" note in the left column and enter your email there. Posts will be emailed directly to you whenever I post them!

Resource list: Visit my spreadsheet at www.tinyurl.com/infantloss

Post-MWAH Wrap-Up

(Topic: grief, habits, art, religion/spirituality)

 Dear Friends,

If I can say one thing, it is that adding a daily discipline - other than the habits I'm used to - is hard! No surprise, there, but that's the short explanation of why I didn't do MWAH every day this month. Additionally, it's extra hard if it has you thinking about and confronting complicated and uncomfortable emotions... Motivation has been something I've struggled with, anyway. However, I'm glad I did even just the ones I did, since for me this is not just about my own healing and mental health, but is also a way that I can parent Charlie, too.

To wrap up the month, I'll recap the ones I did (essentially the first 7, give or take), with some notes about the inspirations and influences that inspired them. None of these are meant to represent finished pieces of art: they are, instead, pieces of thought, pieces of emotions, being processed visually and tactilely.

Prompt: Sunrise. This is probably one of the more obvious inspirations. You may notice that the question in the middle has been changed, slightly, to reflect my experience.

Prompt: Beginnings. My inspiration here is biblical. "in the beginning God created..." "without form and void" "in the beginning was the Word" (this is primarily from Genesis and from the Gospel of John). Charlie's grave is on here, which is PART of God's creation, Charlie and Charlie's grave.

Prompt: Anxiety. To me, this can be what anxiety feels like. I was going to add more lightning, in reds and oranges, from the sides, with more questions and critiques, but ran short of time and energy that evening.

Prompt: Grace. I was stumped on this one for a long time, because I find it hard to find positive things about Charlie's death, except for Charlie himself, and while granting myself grace/forgiveness is something I work on, it is harder to put into a visual form... But I do find that a piece of God's Grace came down when Charlie was baptized into the family of God, and I felt connection with the many other baptisms I have participated in or witnessed.

Prompt: Mother. This prompt came up, apropos, on Mother's Day. I got frustrated at how much marketing is done at the "traditional" "normal" mother - one in a 2 parent household, with 2.5 children, all biological, conceived and born with no issues at all, of course.

Prompt: Name. Probably obvious, this is my son's name! The tiger stripes are because he kicked a lot and we nicknamed him "our little Tigger", which stuck, and now tigers and tiger cubs, in general, represent him for us. Peacock is a family name.

This is not from a prompt, but from a small Facebook support group I'm in. I offered to include names of the babies in the group in a drawing. Charlie is on here too, upper right.

Yours,

Sarah

To subscribe, find the "subscribe by email" note in the left column and enter your email there. Posts will be emailed directly to you whenever I post them!

Resource list: Visit my spreadsheet at www.tinyurl.com/infantloss