Wednesday, November 27, 2019

Five Resources for Remembering Your Child at the Holidays

(Topic: Holiday traditions, memorials)

Hi Friends,

At first I thought I'd write about our personal traditions (which I will still include at the end!) but I realized there are so many good resources out there that I wanted to share. In this post you will find 5 great resources with their own lists of ideas on how to honor and remember your baby during this upcoming holiday season. Most are from some of the really big support and grief organizations, so take a look at what else they offer too!

  1. Now I Lay Me Down To Sleep is an organization in which professional photographers volunteer their time to take photographs of babies who die in a stillbirth or in the NICU. They have a Top 5 list for how to honor your baby this holiday season, which you can download. I believe one of their suggestions is their keepsake ornament, which is pretty large (usually about 4" across) but usually really nice. We've gotten one for the last three years!
  2. Star Legacy Foundation hasn't published a list yet this year (that I've seen) but they do great research about stillbirth prevention (as well as doing great grief support), and host a yearly conference. On their website and at their conference (as paper stars hanging from the ceiling) they list and remember any baby that has had their name submitted.
  3. Still Standing Magazine shared this list of ways to honor and remember your baby. Still Standing is a great blog/magazine/e-zine, and frequently also reposts some of their older articles on FB too. They have some great material and also occasionally accept submissions from loss parents.
  4. Unexpected Family Outing (a life-after-loss blog) published this list a few years ago, of ways to honor your feelings and your baby during the holidays.
  5. Return To Zero: Hope is an organization that was founded after the film Return To Zero came out. I have yet to see this film but have heard it's extremely good (and touching), and focuses on life after infant loss. Their Hope organization is active on Facebook, and published this post with ideas for the holiday season.

Obviously our own traditions are the ones that, over the last few years, we have found work for us. They may or may not be a good fit for you, so just see what feels right. I hope these ideas help!

  1. Lighting a candle (possibly with a picture next to it). This is a nice way to have a deceased loved one "present" without making it a huge topic of conversation. I recommend a long-burning candle so you don't have to worry about checking on it, just making sure you put it out at the end of the evening. We have a specific candle in tiger colors that we use for Charlie.
  2. For us, having Pookie (our weighted bear in Charlie's memory) present at family gatherings is a great way to have Charlie represented. He's also fun for other family members to hold! Not everyone is comfortable considering him a "character" (like Hobbes, or Pooh) but some of my family are, and they'll have him on their lap sometimes even if I don't! It makes me feel like my son is included in the love.
  3. We hang a stocking for Charlie every year (which I made for him!). It shows his place in the family. Honestly we hang one for Pookie too, because he's become a representative part of the family on Charlie's behalf (he often gets an ornament, board book, or small tiger or bear toy).
  4. We try to get Charlie a gift every year, always a new Christmas ornament and sometimes a small tiger-themed item, and I put it in his stocking, wrapped! It's unwrapped by me and my husband, which is a nice family moment. Also, my husband doesn't always know what I've gotten, so someone is still surprised and delighted!
  5. As you might imagine, sometimes I find more than one ornament that I like, plus we have now started getting the NILMDTS ornament (like I mentioned above in #1 of the first list), so the number of Charlie ornaments is adding up! Last year, for the first time, we decided to do a tabletop tree just for Charlie. I really liked the way it felt. It was a little 2-foot tree, we gave it its own strand of lights, and every ornament on it was a tiger, a bear (for Pookie), or a memorial ornament with Charlie's name on it. Actually, there are one or two exceptions, such as gifts that were given to us in Charlie's memory, which we consider "his" as well. It was truly lovely, and I hope to repeat it this year - so you see that even several years later, we still see what feels right and try new things.

As always, feel out what feels right to you, and communicate openly with your spouse or loved ones so you are on the same page. (This can include not attending certain gatherings if you need the space, for instance, or asking for a picture to be included, etc.)

May these holidays land softly and be gentle to your soul.

With love,

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

Saturday, November 23, 2019

Completed Folia Cowl (the "leafy cowl") post number 4

(Topic: Knitting)

Hi Friends!

Gosh, this one took forever. I'll check the dates on my first photos in a minute to get a ballpark of how long this took, but I'm thinking it was close to a year from start to finish.

... yep, I started it in late October 2018...

The reason this took so long was not that I'm a slow knitter, but that this project got put in timeout several times for being complicated, and slow going.
The complicated part was the lace: the lace pattern was two leaves wide and two leaves tall, so for my total width in the cowl I did: edging, 3 repeats of the lace pattern including a purl 2 border between each one, and the edging again. This meant that my row was fairly long, and the lace pattern was 20 rows tall for both leaves. I had to keep track of where I was both horizontally and vertically, and remember to repeat the row of the pattern three times to actually complete a row of my actual cowl.
Because of several factors, it was slow, too: all that keeping track slowed me down; marking where I was on the pattern slowed me down; some of the fancier stitches slowed me down - but mostly because of counting to where I needed to put them, because the pattern was impossible to memorize, so I had to watch what I was doing more closely; and the yarn was scratchy which meant it didn't glide as smoothly.
And because of both the complicated and the slow, I got bored with it fast and didn't do long sessions of knitting as often, and didn't pick it up as often because it wasn't as fun.

HOWEVER, the pattern was pretty well written (if a bit over-complicating things a few times), and the chart was easy to follow (it was actually the first chart I worked with. This pattern was geared toward "ambitious beginners" and had a written version as well as a chart version, so that "rosetta stone" helped me figure out charts! I've since done others successfully). I ended up ending the scarf when the length "felt right" but it actually matched the number of repeats the pattern author suggested! The pattern, while tedious to make, ended up beautiful, and might have been a bit more enjoyable with a different yarn - I don't feel like I will use this pattern again, but if so, I'll make something smaller and with a better yarn and see if I like the pattern better and find it less wearisome.

The yarn: This is the same yarn you might recognize from the Cedar Leaf Shawlette I finished in October 2018. Here are all the posts about that one:
WIP Leafy Shawl, Sept. 8, 2018
WIP Green Leafy Shawl part 2, Sept. 15, 2018
WIP Cedar Leaf Shawlette Part 3, Sept. 22, 2018
Cedarleaf Shawlette WIP Update 4, Sept. 29, 2018
Completed Green Cedar Leaf Shawlette, Oct. 28, 2018
Completed Cedar Leaf Shawlete, Nov. 3, 2018

Here are all the prior posts about this cowl:

WIP Leafy Cowl, Oct. 27, 2018
New Folia Cowl, post 2, Nov. 10, 2018
Folia Cowl, post 3 (work in progress), April 13, 2019

The Shawlette sits farther out on my shoulders, so the yarn is less of an issue, but with the cowl, it sits right up against my neck if I'm not careful, so the scratchiness of the yarn is a bit of a downer.

The length and pattern progressing.

Trying to figure out what length to stop at.

Testing the length.
Figuring out where to put the closure.
A close-up of the pattern. The part between my fingers is one vertical repeat of the lace pattern.

Bound off!

The finished cowl!

Spread out in the shape I would wear it.
  
How it looks on me!

And, a year later, it's finally done! I haven't worn it with any outfit yet (the picture above was a trial run), so we'll see if it ends up being a wardrobe staple or not.

Yours,

Sarah

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

Wednesday, November 20, 2019

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

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

Wednesday, November 6, 2019

My Family Is Perfectly Imperfect Too: A Book Review

(Topic: Book, Children's Book, siblings, talking about loss)



Book:
Perfectly Imperfect Family
By Amie Lands


Just to be frank and up-front, I got a free advance e-copy of this book in order to be able to review, but my health prevented me from reviewing the book before it was released. The advance copy was not given with any financial incentive or any particular slant I had to write about (if I had hated it or had strong criticisms, they would be in this post! I actually really liked it, though!). I haven't read any other picture books intended for children subsequent to a pregnancy or infant loss yet, though when I do, I'll review them here too, even if I don't have advance copies! I promise I will always give you my honest opinion if I'm reviewing something, and will always tell you if I get any benefits (like the free advance copy in this case).
If you click the title above, you will be taken straight to the Amazon page for it, and if you click on the author's name, you will be taken directly to the author's own page about the book.

It is a picture book, with only short amounts of text per page. I believe it is clearly comprehensible to young children. The illustrations are simple and touching. They are not overly busy with detail, but clearly show the love in the family, and include enough texture and small details to be realistic and interesting, rather than blank feeling (such as wood grain on the floors, there's a potted aloe plant that has spots, etc). The family featured is Caucasian, with a mother, father, and two living boys, both younger than the sister that is the featured topic. The main character is the oldest living boy.
The first thing I like about this book is that it is matter-of-fact. There is no beating around the bush, euphemisms for death, or overly religious metaphors that would not be clear to children.

The book doesn't specify whether the first child - a girl - died as a pregnancy loss or after birth as an infant loss, and honestly, that is great - it makes this book much more versatile. It is specified a bit more at the end of the book, but not during the story.

The book sweetly shows how the family integrates the sister into life, through pictures, memories, and rituals. Several holidays are specified with examples (Thanksgiving, Christmas), and the main character - a boy who looks to be about 6 - compares his birthday to how they celebrate his sister's birthday, with a family gathering, cake, and a ladybug release.

The ladybug release is actually the only caveat I would comment on - it is a great suggestion as an alternative to a balloon release (which is actually deadly to many animals, and many families decide that causing death in memory of a death is not fitting). However, if you choose to release butterflies, insects of any kind, or even planting flowers, please do a bit of research and make sure that what you are releasing is friendly to your environment and won't cause harm.

The book continues by addressing common thoughts that siblings might have about a sibling who died before they were born, such as what they might have been like, and concludes by reinforcing that the sister's death affected their life, but primarily through love.

The book concludes by having a section where the reader can think about how their family honors their own missing sibling, and write in their answers in parallel to examples from the book. There could have been more examples, but I think this book is aimed at a pretty young crowd - maybe as young as four? - and I think the hardback version may be a board-book format, so the small number of blanks keep it straightforward for a young crowd, and fits the physical format.

I really like how simple, direct, and loving this book is. I hope to someday own it, actually.

Yours,

Sarah

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Saturday, November 2, 2019

Pink Lacy Cowl - from Cast On to Bind Off!

(Topic: Knitting)

Hi Friends!

This project was a quick one between others, with a pattern that I could easily memorize and let my fingers work on while I watched tv or listened to music. At one point I listened to one of my sisters play in a concert via a livestream, and knit on this project the whole time! The pattern was simple and repetitive, so it was easy to automate.

The original pattern picture.
I was petting a store model, which is what convinced me to buy both the yarn and pattern. Interestingly the store model had a mistake row about halfway up, so I was super careful the whole way because I wanted mine to be right!

Initial cast on. The markers are to help count.

You can see how after joining, this ended up being a pretty tight circle.

I ended up casting on twice, because initially I used the needle size that the pattern recommended, but wasn't sure it would end up draping at all! So I went up a needle size and tried again. The gauge seemed much better the second time.

However, in hindsight, I wish I'd thought to use a very stretchy cast on. The cast on edge, and even the slightly stretchy bind off edge, are very firm and much smaller in circumference than the bulk of the cowl.

I believe this is of the second cast on.

Starting to take shape!!

You can see the lacy form taking shape. The pattern basically alternated between purl rows and a lacy row, so it was easy to memorize.


Getting close to done! The tiny bundle is my tail from casting on and just needs to be trimmed and woven in.

One of the few minor annoyances with this project overall is that my skein had a knot. That's annoying, and tends to be a large company thing. So my project has one knot in the middle, if you look really closely. Pooh.

As I got close to the end, it became difficult to know how many rows to go. I felt like I was playing "yarn chicken" for probably the last 20 rows, because the yarn was so fine I kept thinking a row would use more than it did!

I ended up trying a few different bind off techniques. I wasn't happy with any of them - all of them created a tighter edge than the lacy fabric.

Finished! This is doubled - a little tight to put on, but snuggly.

Draped version. Note that the edge closer to my neck is BOTH bound off edges... it naturally folds in half because the bind off and cast on are both much tighter than the fabric, which has amazing drape.
Overall, this was a great project because the instructions were clear (aside from not suggesting a particular cast on or bind off), and because it was easy to work and memorize. It was a great filler project between more complex items I was working on (and needed a break from!).
That said, I'm not as impressed with it as a product. I probably could have cast on and bound off with bigger needles and then used the pattern size needle for the body and ended up with a more even hand, but because I followed the pattern, it has strange edges. I love the softness, but not the style, so I'm not sure how much I'll actually wear it.


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.

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