Support and How I Changed

(Topic: grief after loss support, holidays)

Our mantle, stockings, and present area - no tree this year.

Hi Friends,

This year is different. This is our 4th Christmas after Charlie died, and every year has been different, but this year is really different.

For the last 3 years, my reaction to Christmas has been what you see in support articles: a combo of needing to be involved, but not wanting to be involved; feeling angry; feeling left out; feeling overwhelmed.

Titles of articles I'm seeing this year:
Grief at Christmas
What's to be Done About the Empty Stocking
A Letter to the Grieving Mom This Holiday Season

6 Ways To Survive The Holidays Without Your Child

Dear Santa: On Christmas In Heaven

10 Simple Reasons the Holidays Hurt

My Wish For Christmas After Child Loss

Getting Real About Another Holiday Season After Loss

7 Ways To Ease The Pain For Bereaved Loved Ones This Holiday Season

Five Simple Ways to Include Your Child in the Holidays

Dear Loss Mama: It’s Ok To Grieve This Christmas

The First Year – Navigating These Seasons When Your Child Has Died
Creating New Holiday Traditions

There is nothing wrong with any of these blogs and articles. They are all valid views, and many would have been comforting to me in the past and are probably helpful to new loss parents.

But this year is different.

I'm in a different headspace about the holiday, and it's really helping me. I wrote about a new approach, a new perspective, that occurred to me this year. Instead of being a grinch, and thinking about Mary as actually having a baby, which created a lot of jealousy, reframing it as a memorial birthday really helped. Now I think of it as a loss mom - not an infant loss mom, but still, related - who is remembering fondly the birthday of her loved one, and hoping to see him in heaven again someday. That, I can get behind.

That doesn't mean I didn't have sad moments.

I totally did. But they were isolated, and didn't tinge the whole holiday for me!

The moment that got me was singing Silent Night. It's a lullaby, and the alto part is pretty too, and it's about holding a silent baby - really, this author says it so well I cried again reading this article:

In The Pain And Holiness Of Silent Nights by DeAndrea Dare.

But over all, I had a good holiday, which was a refreshing change from the last few years.

I hope your holiday was gentle to you.

Yours,

Sarah

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Words About Death - Part II

(Topic: Words, Death, Reactions, Triggers)

Hi Friends,

A few weeks ago, I posted about 15 words related to death that I either liked or disliked, and shared my reasons why I find some to be better than others.

I don't often have a lot of people comment on my posts, here or on Facebook or instagram (where I share the links) but I often do have a few people reach out and chat with me about what I wrote. I love those conversations! Sometimes I learn a lot, too.

After that post about words, though, several people reached out to me, and not all of them were the people who most frequently reply! I wanted to address a couple of the concerns and points that were brought to my attention.

One of the concerns people had was that they had used a word that I found problematic. First of all, if you're doing your best, I'm not likely to be offended even if I disagree with your word choices. Second, if I find the word choice problematic, I will almost certainly let you know! I know that most people are well intentioned, and don't realize the deeper ramifications of their word selections. So I will likely explain and help you understand my reasons, but I will not be offended. Generally, I write posts like that to help people see my perspective, to give them some context for when they next have to choose words; I don't generally write because I have been super offended (opinionated, yes; offended, not usually!).

One of the other comments I got was that I'd missed some important words.
I limited myself to 15 because it made a good post length - there are so many words I could have included!!! I tried to hit the top several I personally consider to be either really bad or really good. But they were based solely on my own experience - several examples were given to me based on other peoples' experiences. They are just as valid as my own experiences, but simply didn't make my list because I haven't encountered them as much. If there are specific words or topics you would be interested in seeing me address, please feel free to reach out! If I have enough words to make another post (with enough context that I feel comfortable writing about them), I might make another list.

Thank you for reaching out and talking to me about what I wrote! I always hope that what I write is helpful or makes people think, and it's nice to hear people's reactions.

Yours,

Sarah

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

15 Words About Death and Infant Loss

(Topic: Words about death, opinions about effects of words)

Hi Friends,

One of the things I notice as the mom of a baby who died is that people sure use a lot of words about death that aren't dead! Some of these words are fine, but some are possibly problematic for some people. Many of the words below are fairly generic, and a few are infant loss specific. The opinions are my own, but also based on what I have heard others say within the infant loss community.

1. Angel

This is a term commonly applied to a baby who dies. Some people love it and are comforted by the image of their child with wings. However, this is not a term I particularly like, although I use it often within the infant loss community because it's so common that it's easily understood. I try not to use the term to others, though, because there are several issues with the term. The first is that biblically, angels are a completely different being than humans, and have nothing to do with what happens when humans die. The second is that this is a Christian term, so it's alienating to any parent who is not Christian or not religious, and could make them feel left out, or guilty for not having that vision of their child.
Confusingly, outside the infant loss community, "angel" is often used to refer to children who behave well. This has actually led to several awkward situations for me personally - I have a shirt that says "mommy of an angel" but has a really obvious awareness ribbon (it should have been clear that I didn't just mean "well behaved"), but several people misinterpreted the shirt, and seemed uncomfortable when I pointed the awareness ribbon out and clarified.

2. In Heaven (in a better place)

Just like the term "angel," saying that someone's loved one is in heaven, if the parent didn't say it first, is assuming the parent's religious affiliation, and could alienate them if you guess wrong by using your own views. If the parent says it first, then they've informed you of their views, and it's probably safe to use. However, don't assume that heaven is a "better place." To me, and to many loss moms I've spoken to, the best place for a baby is in their parent's arms. Heaven somehow feels second best, and someone else telling me that it's better that he's there than here just feels like a slap in the face.

3. Dead

Honestly, I like the term dead. I mean, I don't love that my son is dead, but I love that when I say that, there is no ambiguity. No child will misunderstand me, and it's not a pat on the head like some terms for what happened. Watch the loss parent for clues, though: use the word they use, because it will most likely be the term they are most comfortable with. For me, the honesty and clarity of this term are important, but not all parents will feel the same way I do.
People also use "I'm dead" or "I died" figuratively when something is particularly funny or embarrassing, but this is not usually ambiguous because they are literally standing in front of you and clearly breathing.

4. Death

The same as "dead" - this term is unambiguous and direct, so I like it! For instance, I will say "since Charlie's death" rather than "since Charlie's stillbirth" or "since Charlie passed" because it's very clear what happened and doesn't mask it.

5. Died

 I'm going to start repeating myself here! Yup, it's simple, effective communication. "Died" is exactly what happened. In our case, Charlie died before birth, but in the second half of the pregnancy, which means that when I gave birth to him, it was a "stillbirth." But regardless of the situation, he died, which also means that before that, he lived. Simple, unambiguous.
(Note that same as above with "dead", some people do use this figuratively when they feel embarrassed or found something particularly funny - but they are usually obviously still in front of you and alive, so it's clear that they are using it figuratively.)
(Also note that in some religions, societies, laws, and cultures, life is defined differently. Some view life as beginning with sperm (and maybe egg), others as beginning with conception, others as beginning when the baby starts to move (or "quicken") in the womb, and others when the baby breathes for the first time outside the womb. I personally believe that 1) it's complicated, and 2) conception is scientifically an important part, and 3) this doesn't mean that the baby's life is more important than the mother's. That's as far as I want to go into that issue here, but from the perspective of loss parents, the "official" time of beginning of life is less important than the beginning of their hopes and dreams for the baby, which usually begin right around when a couple find out they are expecting a baby. For them, that baby is a living baby from that moment on, at least in some ways.)

6. Deceased

Actually, this is my favorite option. You know why? It's just as clear as dead/death/died, because it has no other meanings at all. But our culture often cringes at the stark reality of dead/death/died, and deceased has a higher register (i.e. usually used in more formal circumstances), so it gives us the feel that we have put a bit of distance between us and the gross tragic reality. When I talk to strangers and Charlie comes up, usually because they ask how many kids I have, I often say "I have one son, he's deceased." The stranger is immediately informed of his death with no ambiguity or beating around the bush, but they are not as shocked as they would be with the immediacy of the word dead.

7. Passed away

If you think about it, "passed away" doesn't really have too many other interpretations even if you try hard, but because it's not as direct, it's still difficult to understand if you're a child or if your first language isn't English. If you are new to English in any way, it is easy to accidentally parse this as "passed" + "away", which sounds like "passed by" or other versions of people walking past you. So this can be misunderstood in some scenarios. "Passed away" is a collocation or phrase that only has one meaning when the words are together, but the words each have separate meanings that can confuse someone who doesn't realize that they form a very particular phrase.
It is also just so distant from what actually happened. Our culture likes to muffle death in phrases that disguise it, which might be easier on those not involved directly, but it makes it harder to be straight forward, and means that people who are grieving don't have their loss recognized as easily.

8. Passed

Oooh this one bugs me. I know it's just a shortening of #7, but because this isn't a whole collocation/phrase, it's now 100% ambiguous and ready to be misunderstood! I actually know someone who was told that a friend had "passed" - but because the friend was someone they knew from college, the listener misunderstood it as having passed the course or completed the degree. Which of course was not what the speaker meant - but it wasn't clear. If the speaker had at least used the whole collocation of "passed away" it would have been clearer. Unfortunately, this shortening is catching on. I'm seriously tempted to always misunderstand so that people realize how unclear it is.

9. Lost

"Lost" is a term that gets thrown around a lot but is actually quite problematic. Think about it: what does "lose" usually mean? It means misplaced, it means re-findable, and it means that it was someone's fault or negligence. Is that really what we are trying to say if we say "Susan lost her pregnancy" or "Sally lost her baby"? No! They can't find the baby again, the baby is dead. The baby isn't just misplaced. And it certainly wasn't Sally or Susan's fault or negligence in pretty much most cases. And it minimizes their grief a thousand-fold. What should you use instead? See what the mom and dad use. If they use "died", please be just as direct. If they use "passed away", mimic them and honor their level of comfort and directness. But please avoid the term "lost" because it has a HOST of guilt-inducing unintended meanings.

Additionally, this one is frequently misunderstood by older siblings of the baby, who are still young. Then they think there is a chance that the baby can be found, and get re-saddened when it is explained to them. Please just avoid this one.

10. Loss

Compared to "lost", which is a verb and implies action or neglect in the mother, "loss" is a noun and means that something is missing or gone. I actually like this word, in most uses and contexts. There is a loss in my life, of my son. The loss of his milestones. The loss of seeing him grow up. There are many "losses" associated with death and grief; more so the younger the person was who died. I suffered the loss of my son, because my son died (not because my son was lost - that would imply he misplaced his compass while hiking and could still be relocated). A "loss" is like a hole - a void where something was, that has been removed and is irreplaceable.

11. Gone

I bet you can guess what I'm going to say by now! "Gone" has too many other meanings to be used for death and still be clear. If I say that George is gone, does that mean he's dead? Or did he just leave the office early for a dental appointment? Seriously, this is sooooo vague. And again, not clear to children, which is one of my biggest pet peeves with our euphemisms. I would suggest avoiding this one entirely.

12. Left us (too soon)

I have mixed feelings on this. "Left us" is, like "gone", really vague and has many other possible meanings. That said, when used in the phrase "left us too soon", this seems not to be used much except regarding death, usually the death of a child before a parent (at any age). I actually did use this on Charlie's gravestone, but on a gravestone is not an ambiguous place to use it. So I would use this phrase very cautiously, and only if it is going to be completely clear; for instance, if it has already been clearly said that the person is dead, and this is an added comment. However, I might suggest that this be left for parents to chose to say, rather than something you can say to them - because it could come across as you making assumptions. This is not as bad as others, though, since the assumption basically implies that the parents miss the child (likely) and that they would rather have the child back, safe and alive (also extremely likely).

13. Body

 A few thoughts on terms for the actual corpse. "Corpse" is generally considered fairly vulgar or technical, depending on context, so I decided to not give it its own number in this list. I suspect most people will shy away from it, even blunt people about their own folks (I consider myself fairly blunt, but would not generally use the word "corpse" to refer to Charlie). However, let's take a look at "body" briefly: it's very, very matter-of-fact. It's not exclusive to dead people (whereas corpse is) but it is usually used in contexts that are very clear. It's fairly blunt, but not gross and not false. I will talk about Charlie's "body" occasionally, but usually I just talk about Charlie (I'm more likely to say "we buried Charlie" than "we buried Charlie's body" - but I'm fine with either - I just usually don't feel the need to specify "body" because that's obvious - unless I am being specific when talking to someone who just mentioned their child's ashes, for instance). I really included "body" because it contrasts with the next two words.

14. Remains

The "remains" are what are left behind. So the word "remains" implies that something has been removed or has left the body. I think this is used in our culture because there is a pervasive idea that the "self" of the person has somehow gone away - whether as a Christian soul (other religions have similar concepts) or whether simply as a form of "self". So what "remains" is the body, which can be called "remains". I would like to point out, though, that anything resulting from what we do with that body still end up being "remains" too - whether we embalm, or whether we cremate, or whether it's later and it's a mummy or bones. All of these - bodies or ashes or bones - are "remains".

15. Cremains

So to follow on that concept, if we cremate and what is left are still "human remains" but in the form of ash, who thought up this ridiculous word? UGH - this one gives me hives. Human remains are human remains, whether ash or bone or embalmed or mummified. So - if we have to say "cremains" (WE DON'T), then are bodies that are embalmed "emb-mains"???? I thought not. Say "ashes" if you want to be super clear about it not being a "body".

Side note: baby vs fetus, and other thoughts about asking personal questions in public
Occasionally you will hear loss parents complain when a medical professional - or worse yet, someone in everyday life who may be retired from medical life - call a baby who died during a pregnancy "a fetus". Here's why we complain: while they are technically right (embryo and fetus are technically two phases of development of the baby in utero), the fact is that to the parents that is their baby, with all of the associated love and feelings. To have someone use a technical term that feels like it negates the love and hope, that's extremely hurtful. There are doctors who realize this, and when talking with parents will only call it a baby, but some don't realize. I've had this happen to me (with a retired labor and delivery nurse, who had not realized the pain and dissociation she was causing). I tried to explain it to her, several times, and ended up leaving a group when I realized she was not going to even try to change her terminology despite knowing that it was hurtful to someone right in front of her.

Please try to listen and observe loss parents you come in contact with. While some of what they request might be personal preference, most of what they say will be helpful for you to consider applying broadly to any loss parent, or even more broadly in life in general. For instance, asking if someone has kids or how many kids they have is almost always a more complicated question than it sounds like (did they have fertility issues? Pregnancy or infant loss? What about custody issues or legal issues with their children being taken away?). I suggest not asking, or asking very obliquely if you have to ask. Many parents will volunteer the info they want you to know, and the rest is (respectfully) none of your business.

Thank you for listening to my suggestions, as a fairly outspoken loss mom, on the topic of words concerning death. I hope that my thoughts are helpful to you, and that you take a moment to chose the word you really mean, the next time you speak of someone who died.

Lots of love,

Yours,

Sarah

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

What's the Reason? A Book Review

(Topic: book, illness, grief, what to say)

Image credit: Kate Bowler's Website

Book:
Everything Happens For A Reason: And Other Lies I’ve Loved 
By Kate Bowler

This is probably not a book I would have picked up on my own.

Lately, I read mostly fiction, if I read. I don't read nearly as much as I used to - picking out a book that's "safe" (not heavy emotion, and no pregnancy or infant death...) is a lot of work, and then having it be good, engaging, something that has me coming back to finish it... I struggle with reading more than I used to. So I pick a lot of light stuff, when I read.

This book isn't light.

It's not written densely, and it doesn't delve super deeply into the topics it brings up, but it involves very big, very deep topics, so even a shallow treatment is heavy at times. My husband has an interest in books addressing death (and our society's reaction), religion, and philosophical exploration. This book touches on all those themes. He read it, and chatted with me about it, to the point that I was curious and interested to read it for myself.

The author has cancer, and is struggling with religious questions, and life questions, and generally with life, and whether or not she's dying. She has a toddler son and a husband, and she loves them both dearly.

She addresses aspects of her upbringing and research (on the "prosperity gospel": in short, the idea that if good things happen, God is blessing you, and if bad things happen, God's either testing you or punishing you. This perspective doesn't let the earth be a broken place with happenstance or "shit happens", and doesn't allow room for God to grieve with you. I'm not an adherent of the prosperity gospel perspective, but it's pretty pervasive in American culture and thinking). She also addresses aspects of the Mennonite traditions, because she grew up surrounded by a Mennonite community and married a man who grew up in that community. The Mennonite community appears, from her comments, to view suffering as a tragic part of life on earth, and something that people should be supported through.

What's interesting, is that she wrote this during. This book seemed to me to be a way she was processing. Processing what was going on to her, but more, processing how she sees the world and God, and what she actually thinks about what people are saying to her.

She came to a lot of similar conclusions to what I found. People like to say things that "fit" with what they think, usually from a place where they haven't been through senseless tragedy. They want the tragedy they see us going through to fit the "rules" they think the world runs by (side note: it doesn't. The world is arbitrary, and has accidents, and illness, and senseless tragedy). Her book seems to show that her notion of God resolved to a new (different) clarity, how God is love and not human interpretations of what God is.

She ends the book with two helpful appendixes. Even if you are not interested in the book, pick it up in the bookstore and just read the appendixes before putting it back on the shelf. The first appendix is 10 things not to say to a grieving/ill person. They all fit with the same things I've struggled with people saying to me. The other appendix is a list of things to do, to help. The main theme that comes through is to be with, and not to try to explain to the griever what they are feeling (they already know) or why they are going through it (chances are, there really isn't a good reason, and you cheapen their pain by trying to explain it away).

This book is a quick read, and again, she doesn't go super theological or super medical, or really super technical in any way; this is a fascinating exploration of her own experience and thought process as she goes through a cancer journey.


Yours,

Sarah

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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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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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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

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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

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What can I say? Ideas on how to talk to and help a grieving friend

(topic: loss, grief, communication, helping)

Introduction

This is a post in my series of posts honoring Pregnancy and Infant Loss Awareness Month. My goal is for these posts to be shareable - if you are a loss parent, I hope you find this post helpful to share with your friends to help them understand you, what you are going through, and how to help.

Please note that usually my Wednesday posts are loss related, and my Saturday posts are hobby-themed. Due to extenuating circumstances, I missed Wednesday this week, and this post (a day late), which would normally be a hobby post, is making up for Wednesday. Thanks for your patience with this little hiccup in routine!

Why Are We Talking About This?

There are several reasons why pregnancy and infant loss is incredibly important to bring into the open - such as helping the medical world realize that this needs to be studied and the rate of loss needs to be reduced - but why is it important to discuss how to talk about it?

Well, in my experience, our culture doesn't talk about death much, and when we do it's either joking or morbid, or it gets really, really awkward. And when talking about grief, we are smack-dab in that third category. It's tough to talk about, which unfortunately means that our culture teaches us to respond with platitudes and sayings, none of which are really very helpful to the person grieving - and some of which are actually quite hurtful.

There are many articles out there on the hurtful things people say, and sometimes why they are so painful. In the past, I have discussed some of them myself (What Do I Say? from May 2017), while trying to address some helpful things to say instead. Today I'd like to focus on some helpful ways to approach talking to a loss mom or dad, and some other ways to help a grieving family.

What Can I Say?

First off, be sincere and think before you speak, no matter what. Usually, when someone is hurtful, it's usually because a) they are just trying to leave the conversation, b) they are saying a phrase or saying without thinking about the deeper meaning, or c) are comparing to something, like something they've been through, rather than just listening.

What exactly you say is really up to you and depends on your relationship to the person you are talking to. Generally though, being open to the grieving person's experience is extremely helpful. While you might see what they are going through physically, you have no way to know what's in their head and how they are perceiving it. Be patient and open, and willing to listen and try to understand. If they tell you that they don't want to talk about a particular aspect, or do want you to do something, like talk about their baby by name (rather than as a miscarriage, stillbirth, fetus, or even "the baby"), please respect their wishes and either don't or do talk about that when in a conversation with them.

What if you are just meeting someone new? Really listen to how they are approaching topics - any topics! And listen to see what they are comfortable sharing. Don't push for information, but rather let the conversation take a natural tack. If they bring up their loss, and it makes you uncomfortable, here are some helpful phrases you can riff on:
- "I can't imagine what you are going through"
- "I'm so sorry to hear that"
- "What's his/her name?" (very few people ask, and I wish more did)
- "I'm here for you"
- "Would you like to tell me about him/her?"

Some things to avoid are religious platitudes, anything that is an "at least" type statement, or any comparing of grief situations. Also, if you decide to ask questions, please be thoughtful and careful about not only how but also what you're asking! I don't care how nicely you ask, whether or not my uterus is healthy enough for more kids is between me, my husband, and my doctor (for instance).

I could list many things that are unhelpful, but really the key thing is to truly listen and pay attention, and think before you speak, because the most helpful things people have said just indicated they were happy to listen (and not pry) and the least helpful things were people saying religious or trite platitudes that felt diminishing or demeaning, or questions that were truly invasive.

Is There Anything I Can DO??

Yes! There's plenty you can do. The better you know the person, the more you can do. Some things to think about:

• Tomorrow, October 15th, is Pregnancy and Infant Loss Remembrance Day, and at 7pm (through 8pm) people are lighting candles in memory, each in their own time zone. This means there's a constant wave of light flowing around the world, time zone by time zone, in memory of all the little ones not in the arms of their parents. Light a candle! If you know a family well, sending them a picture of your candle, letting them know you were thinking of their baby, is a very sweet thing to do.
• Let them know you're thinking of them. Whatever means you usually use is great (text, call, email, social media, card, skywriting 😊), or a handwritten card/note is always nice.
• Use their baby's name, especially if they do. Many families (me included) really like to know that you haven't forgotten the baby.
• If they have pictures of the baby, and it seems appropriate, ask to see them! Not everyone is comfortable sharing, and not everyone has pictures, but many who do would love to share. Think about it: most parents show pictures of their kids all the time. Well, I want to, too - but I only have about 50 and that number is never going to change, so I don't have new cute ones to share. But I'd love to show you Charlie again and again, any time you ask!
• If their grief is fresh, ask if they need help with concrete things around the house. The more specific you can be, the better. "Can I come vacuum for you?" is more helpful than "Do you need anything?" because especially early in grief, making decisions, and seeing what you need help with, is very hard. If they seem hesitant because they think it's a burden on you, then you can insist. If they are saying no for other reasons, though, please respect their boundaries.
• If the grief is fresh, bringing meals can also be helpful. Make sure you're aware of allergies. Foods that can be frozen are also helpful, in case they got too many in a week (also because early on some people's appetites are low).
• If their grief is slightly older, beyond the first month or two, reach out again! This is the time when I felt like the initial wave of help was done, but I wasn't fully functional yet, and my fears of Charlie being forgotten were really high.
• If you are close with the person, make note of dates that they might find meaningful, and remember them with a card or text or something. The birthday of the baby is especially poignant for most loss parents. Some other dates that might have meaning: Date they found no heartbeat, date of conception or date they found out they were expecting, Mother's Day and Father's Day, date of the funeral, October 15th (remembrance day), date of a particular memory (I have one in February because that was the first time Charlie kicked back when hubby put his hand on my tummy!).
• Support an organization that helps! You can use smile.amazon.com to donate as you shop, or you can donate directly to an organization. Ask your loss friend - they'll often have one or two they've really connected with. There are plenty out there. Some take photos of the baby right after birth, some make weighted bears, some do research to prevent further pregnancy and infant loss, some provide pro-bono counseling... there are many options!
• Support an organization in memory of the baby, and let your loss friend know. For instance, we had a friend who bought us a tree, through an organization that re-forests after forest fires, and the tree is in memory of Charlie. Or if the loss friend has a symbol for their baby (many do, often an animal that represents the baby, sometimes connected to a story about the baby), you can donate to a cause they support that ties to that symbol.

I know that's a lot to think about, but there are so many ways to support your friends it's hard to stop telling you! I'll leave it at that right now, but if you have questions or other ideas, feel free to share in the comments - I'd love to hear your ideas! The key point is that you respect the loss mom or dad and how they grieve, no matter what.

💟

In love,

Yours,

Sarah

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Museum of the Alphabet

On Monday, September 18th, my husband and I had the opportunity to visit The Museum of the Alphabet, outside of Charlotte, NC. In fact, we knew nothing about it before we got there, having found it by chance when looking for interesting museums to visit while we were in the area.

The museum is run by and associated with JAARS, ILS, and the Wycliffe Bible Institute. Essentially, the organization wants to be able to provide Christian Bibles to all peoples, and to do so, they sometimes have to help create alphabets and writing systems for languages that have heretofore been purely oral.

The museum appears to have been created to help educate the public about that last aspect of their work. Aside from a few instances where the museum leans biblical-literalist, the exhibits are fantastic and do a wonderful job of explaining how various cultures and individuals through the ages have invented or adapted ways of putting language into a written system. I had the impression that some of the staff's opinions were much more literalist, but the exhibits were fabulous.

The museum starts out with a short film, and then a staff member introduces an interesting steel sculpture of the tower of babel, representing how multiple languages formed on earth. This is the only exhibit where the display took the Bible completely literally; the remaining exhibits were based on language research and language history.

For instance, the lovely tree of written language evolution, shown here in a postcard I purchased from their little gift-nook (sorry the quality isn't high level. Wish I'd taken a picture myself. Basically, the top row is modern writing systems, and the branches show what was influenced by what other system or older form of the same system):

Once past that tree, the museum is divided into alcoves that each address a particular language or alphabet, and how their writing system came into existence and how it functions. There were also interactive portions, allowing you to answer questions, decode alphabets, or make sounds.

I was particularly fascinated by two exhibits, which I got permission to photograph:

This chart is a FABULOUS explanation of various things that affect the crazy English spelling! Each tree matches the color of the paragraph below, which explains the cause of that particular type of spelling change or effect on modern spelling, and the leaves give example words.

I also was fascinated by this one, explaining that Korean orthography is actually based on the physiology of sound production. I have not researched this myself, so I am dependent on the museum's research on this - but if this is true, this is awesome.

To return to my mention of Biblical influences, I would like to mention that each language exhibit has a Bible there, simply as an example of the orthography of that particular language. Given the purpose of the organization as a whole, I find this a completely reasonable example to have on hand.

The exhibit on Hebrew (the original form, not the modern form), posits that Moses himself came up with the alphabet when writing down the 10 commandments. Whether or not that is true, the concept that the ancient Hebrew alphabet came into existence in about that same era is still worth paying attention to.

Later exhibits focus more on the JAARS/SIL/Wycliffe work: since they are often working with languages that still have no written form. In these exhibits, there are examples of the linguistic work they do, which is fascinating to see! The linguists involved in this project learn the languages, try, at least in most cases, to find a writing system that will make sense with that language, and then also work on establishing and supporting literacy.

In all, this was a truly fascinating museum. It is small, but there is no entrance fee, and they do not accompany you on your tour, so you have as much time as you need and want to read all of the information - or to skip past it if you prefer!

Shoe Rosettes

Hi Friends!

Over the past few years in my free time, I've been translating an instructional article from a German magazine called Der Bazar, which was published in the 1800s. This particular article, from 1861, explains how to make fancy bows ("rosettes") to put on women's slippers, shoes, and boots to make them fancy! Rosettes and cockades were worn to decorate items like shoes and belts for ladies, but also worn as brooches, memorial pins, or even political pins!

Here is the original (the text is on both pages; the pictures that go with the article are on the 2nd page):

My translation is below, for those of you who want to try it!

Most sincerely yours,
~ Sarah

Shoe Rosettes

With 10 illustrations

With this rich selection of rosettes we offer our readers the opportunity to do justice on their own to the elegance required by fashion in regards to one's chaussures.

We provide the rosettes in various levels, as well as their size and their original accoutrements -- from the simple little cockade to the trimming decorated with lace and pearls as befits the costly velvet mule, the bridal boot, or ball shoe. A few of the originals shown in the given illustrations are only fitting for this type or that type of footwear due to their style, as pointed out in the note given with the individual descriptions when appropriate; no footwear is out of the question for the use of the remaining rosettes. For indoor slippers or mules, as well as with boots that one wears to the theater, in the carriage, or with evening clothing, fashion dictates that rosette decorations are a color that contrasts with that of the shoe, yet is in harmony with the rest of one's toilette. With walking boots, though, choose trimmings that do not contrast.

No. 1 Rosette á la Pompadour

Materials: 90-100 cm black satin ribbon, 2 cm wide.

The ribbon specified above is basted into very small pleats and is set in a spiral onto a 4 cm round foundation, starting at the outside of the foundation in rows spaced as closely as possible, so that the pleated lines of ribbon stand up.

This rosette can also be made larger, in an oval shape, in which case the foundation is cut in the appropriate shape and, naturally, more ribbon is also used.

No. 2 Cockade Rosette

Materials: 40-44 cm black satin ribbon, 1 cm wide; one small steel buckle.

Lightly singe the ribbon, and tack onto a 3 ½ cm round foundation in 3 or 4 rows in a spiral; slide the buckle decorating the middle onto a smooth piece of the same ribbon.

No. 3 Rosette Impériale

Materials: 70 cm black lace, 2 ½ cm wide; 77 cm currant-red wired chenille; 19 middle-sized foam beads. *Translator's note: Schaumperlen is unclear. It could be foam beads or foam pearls. I mostly see this word used to describe seafoam, so I'm not sure what kind of bead it's referring to.*

Pleat the lace, and baste in 3 tiers in a spiral onto a 3 cm round foundation. Fasten 8 chenille loops between the first and second lace tier. Every loop should have a black foam bead in the middle. Fill in the center with a tuft of chenille loops, the outermost and innermost of which should likewise be decorated with beads.

No. 4 Rosette for Morning Shoes and Mules

Materials: 67 cm brown satin ribbon, 4 cm wide.

In terms of the arrangement of the 6 individual bows and both of the ends that comprise the trimming, we refer you to the illustration, since for this rosette, looking at it is the surest explanation. The bows appear to be held together in the middle with a loosely attached short ribbon loop, but you can pull this smooth through a wide curved buckle to give the whole thing the true character of a shoe rosette.

No. 5 Rosette, Noeud Papillon

Materials: 40 cm black satin ribbon, 1 cm wide; 20 cm of the same ribbon, 2 ½ cm wide.

To arrange this rosette, form 4 individual bows of a 5 cm ribbon length each, and tack these in a half circle to the foundation.  The inner decoration is a cockade made of the narrower ribbon, done just as in No. 2.

No. 6 Boot Rosette

Materials: 140 cm brown satin ribbon, 2 cm wide; a steel buckle.

The long, narrow shape of this rosette makes it suitable only for decorating boots. Cut the foundation for it in a tongue shape, 8 cm long, with one end 4 cm wide and the other end 2 cm wide, and rounded on both ends. Begin on the narrow end and attach the ruffle in two single rows, so that each forms a half circle. On the third row, which follows the second in the same shape, continue the ruffle straight away continuously around the wide end of the foundation and then towards the middle in spiraling oval rings, as far as it reaches. The empty space remaining within the ribbon decoration is covered with the buckle, drawn upon the remaining brown ribbon. The illustration will truly enlighten the understanding of the arrangement described here.

No. 7 Rosette, Noeud Papillon

Materials: 40 cm ponceau satin ribbon, 4 cm wide; 15 cm black lace, 3 cm wide; a small steel buckle. *Translator's note: ponceau appears to be a bright red-orange.*

Make 4 individual bows from the ribbon, each made from a 5 cm length; additionally, make 3 shell-shaped leaves, just like those given in the description of No. 11 — and arrange both sets on the foundation cut in the shape of the rosette — the 4 bows in a half circle on the outside, the 3 leaves in the middle, and the two separated by the black lace. The point where the 3 leaves meet is covered by the buckle drawn onto a piece of the ribbon. When placing this rosette, the straight flat side is put toward the top.

No. 8 Rosette for Morning Shoes and Mules

Materials: 78 centimeters gray taffeta ribbon, 2 to 2 ½ cm wide; 70 cm black lace of the same width.

The foundation of this rosette must be 6 ½ cm long, 4 cm wide, and in the middle, in the shape of the rosette, somewhat narrower. Form 12 individual bows, each made from a 5 cm length, and tack them to the foundation in threes on either side, in horizontal rows and alternating with a crinkled black lace. Fill the gap between these trimmings with 2 small bows set opposite, one pointing up and one down, and cover their attachment with a flat ribbon drawn through a curved buckle.

No. 9 Lace Rosette

Materials: 66 cm black lace, 2 ½ cm wide; a small piece of wide currant-red ribbon or silk cloth; a steel or bronze button.

Cut a 3 ½ cm round disc from strong paper, cover it on one side with lining gauze, and on the other with the colored silk cloth. Divide the black lace onto it in 2 pieces, one 23 cm long and one 43 cm long, and baste each piece in very small pleated folds. On the back, halfway up the width of the lace, draw a fine black silk thread through each pleat, to hold them in evenly in place. Set the longer of the two trimmings around the edge of the round piece, so that it extends beyond the edge by 2 cm all around. Pull the shorter trimming together into a rosette and place it in the center of the red backing, so that it it only appears through the airy lace background.

No. 10 Rosette with Tassels

Materials: 78 cm dark blue taffeta or satin ribbon, 2 ½ cm wide; 33 cm black lace, 3 cm wide; 7 cm very narrow black lace; 2 small blue silk tassels; one small steel buckle.

To make the 15 petals of the rosette, cut the blue ribbon into 5 cm pieces, leaving a 2 cm piece to secure the buckle. To make each individual petal, do the following: Fold both corners of the upper long edge down to the middle of the lower long edge, in opposite directions, so that you form a triangle. Turn the triangle over, and fold both corners from the sides down and somewhat overlapping, so that they extend beyond the bottom edge of the triangle, and so that the top forms the dahlia petals you can see on the illustration. Trim the points that overlap and point down, and fold the lower side corners to the back, so that the the petal gets narrower toward the bottom. Form all the petals in this way, and then decorate every one of them with 3 steel or gold beads in the top of the opening, which you string together and fasten with one vertical stitch. Baste the petals in 2 open circles onto a round stiff foundation you have cut from tulle, gauze, or linen, which has a diameter of about 3 cm, and on one side, following the shape of the rosette, it must be bent and flattened. The arrangement of the petals can be clearly seen on the illustration. Gather the wider lace and surround the rosette with it, by basting the lace to the back of the stiff foundation all the way around. The two tassels can either be thread-covered or made of creped silk. Fasten them in the middle of the rosette such that they hang down through the open side of the surrounding petals. Finish the entirety by taking the narrow lace, pull it together into a small rosette, tack it to the remaining space, and then slide the small horizontal buckle onto the piece of ribbon set aside for this, and fasten it on top. This rosette should be set upon the boot or shoe in such a way that the tassels fall toward the toe.

No. 11 Rosette à Coquille

Materials: 88 cm white satin ribbon, 2 ¼ cm wide; 38 cm white blonde, 2 ½ cm wide; a small steel buckle.

The shell-shaped leaves making up this rosette are folded individually from an 8 cm piece of the ribbon given in the “materials”. Lay the folds from the middle of the bottom edge diagonally toward the corners of the top edge, in 3 folds, first on one side, then the other, which simultaneously form the veins of the leaf and have to reach over one another somewhat in the middle of the leaf. Due to the folds in the middle, the leaf obtains a length of about 3 cm. Trim the bottom to form a straight line.

Cut foundation of this rosette in the shape of a heart, 4 cm tall and 5 wide, and then stitch down the white blonde along the outside edge in folds. On top of this, first place the 7 outer leaves and then the 3 inner leaves as seen in the illustration. A leaf also covers the center, and place atop it the buckle drawn onto a piece of ribbon in a contrasting color. Instead of a leaf, you can take the ribbon that is through the buckle, pull it tight, make a small bow, and stitch in the middle with the buckle. When placing this rosette on a shoe, the pointed side of the rosette should be on the lower side.