October 15th, Pregnancy and Infant Loss Awareness/Remembrance Day and Wave of Light

(Topic: Pregnancy and Infant Loss, remembrance, grief)

Dear Friends,

Once a year, when October rolls around, the story that is a constant part of my life gets talked about a bit more, and noticed by more people who haven't been through it. This is because October is Pregnancy and Infant Loss Awareness month - it was declared to be so by Ronald Reagan in 1988. October 15th got established as Remembrance Day a bit later, in 2002. Another organization, I believe it was Bear Cares, started promoting a "wave of light" in 2003, the idea being that if people in every time zone light candles from 7pm-8pm local time, a wave of light in memory of babies would flow around the world. In fact, many buildings world wide light up in pink and blue (the colors of the awareness ribbon) for the evening.

This year, the candle we usually light is still packed somewhere, but we had the pleasure of being able to virtually attend a memorial and candle lighting ceremony held by a funeral home, where they lit a candle for us, in memory of Charlie, along with many others.

Last year, I placed candles on the graves of babies buried near Charlie. The backside of the tag had some resources.

The tall candle on the left is the one we usually light for Charlie. Last year I tried to light a candle for every baby I personally know the name of... It got a little out of hand and actually melted my table cover. But even when I don't get a chance to light a candle myself - like this year - I still hold all of them in my heart.

This year was interesting - it still makes me sad to miss Charlie, but it changes. The memory of him in my arms is not nearly as recent as it used to be - it's not less vivid, but I'm more distant from it.

I'd like to share a little piece I wrote on Facebook. I have recently started to realize that while nothing will change the fact that Charlie died, it is starting to be more important to me that he lived, and that he is my son.
Here's what I wrote:

Help me remember my son Charlie. He lived for 9 months inside of me, and Calvin and I got to know him - how he kicked like a little tigger and became our little tiger cub, how he danced to Joshua Bell 's solos. He was alive, and he is our son forever. Then his heart stopped beating, and I still went to the hospital and gave birth to him, and got to hold his beautiful little body. My son lived, and then he died. I loved him from the day we found out we were having him, and the fact he never got to breathe does not negate that he lived. I will love him till the day I die. He would be nearly 3-1/2 now, and I picture him playing his aunt's 1/8-size violin (edited to add: turns out it is actually a 1/16th size). It's one of the many dreams we had to set aside when we had to pick a cemetery plot and a gravestone instead. Help us remember him, and remember that in the United States, 1 in every 160 pregnancies ends in a stillbirth (a baby who dies after week 20 of pregnancy). This is too many. Help spread stories like mine, help mamas and daddies like us remember the children they love but no longer have with them, and support organizations that research prevention and spread knowledge to pregnant mamas.
#stillbirth #pregnancyandinfantlossawarenessmonth #pail #pregnancyandinfantloss #starlegacyfoundation
If you have questions or need resources, I'd be happy to try to help. ❤️ to all parents who have more children than you can see.



Yours,

Sarah

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

Awareness Ribbon Shirt

(Topic: Grief, being in public, explaining)

Hi Friends,

Remember this shirt?

A few days ago, I talked about how I altered the sleeves. Today I want to talk about wearing it.

Here's a picture of the front:

I first wore this in public on Mother's Day last year, and have worn it occasionally since. One of the reasons I like it is that it makes "being a mom" visible for me - I'm otherwise invisible as a mom unless you know me. I also feel that the awareness ribbon is fairly evident and recognizable. (I'll talk some other time about the pros and cons of the word "angel" in this context.)

Still, when wearing it, I have to balance being visible/recognized with being misunderstood or having to explain.

In fact, I've had two blatant misunderstandings, both leaving me baffled, when I thought the awareness ribbon shape is pretty widely understood in our culture.

Misunderstanding 1)
I wish my kid was an angel! (i.e. "well-behaved")

Misunderstanding 2)
I should have a shirt that says I'M an angel, for putting up with my wife!!!

I'm really baffled. I know I'm putting myself out there, by wearing a shirt like this, but I expected (like when carrying Pookie around) that people would say trite things and ask questions that bring Charlie up. I really didn't expect the self-centered misunderstandings that disregard the ribbon and the possible meanings of the text.

It's a truly unanticipated difficulty, honestly. I'm just not sure what to think.


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

Sophia's Wings walk/fundraiser

(Topic: Memorial walks for infant loss)

Hi Friends,

This is about something that happened last fall, that for some reason I hadn't gotten around to writing about.

In October, which is PAIL awareness month (Pregnancy And Infant Loss), many organizations hold memorial services or memorial walks, and occasionally fundraisers (and sometimes the walks have minor registration fees that help continue the work of that organization).

One of the organizations that held a memorial we were able to attend was Sophia's Wings. This wonderful organization, "Offering free grief counseling to families suffering the loss of a baby through miscarriage, stillbirth, ectopic pregnancy, or neonatal death." They only have limited availability at this point, because their service is so wonderful! And, sadly, because many people are in the circumstances of experiencing pregnancy or infant loss, and getting therapy can be a big help in learning to live with grief. Here's the Sophia's Wings Facebook Page (Hubby and Pookie and I are currently featured on their cover photo as I write this!).

The walk they held began in a fieldhouse along the track, and also had activities, such as making an ornament for the Sophia's Wings office, and an area where children could build things with their parents after the event. The whole thing started off with a moving ceremony, with a keynote speaker movingly sharing their loss story, and music. Then everyone walked around the track, and those who wished could walk around the neighborhood on a course.

The ornament I made for Charlie.

Here's a picture of Charlie's ornament hanging in their office: Memorial Tree.

Pookie sitting next to the memorial luminary with Charlie's name.

Leah Vonne was photographing the event, and this photo by her is one of only a handful of our family, and means so much to us. Because of that, we used it as our Christmas card for 2018.

Here's the photo album of the whole event: Album by Leah Vonne Photography

Hubby and I make a point to participate in this kind of memorial when we can, for several reasons. One is that they offer important services, and we find it important to help support them. Another is that memorial services are a wonderful, touching, and wrenching way to remember Charlie completely openly and publicly. I find that no matter how I honor and remember him in daily life, this way of acknowledging him, hearing his name read out, and walking in his honor is helpful to us in knowing he will always be loved and remembered.

Yours,

Sarah

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

How common is Pregnancy Loss?

(Topic: Pregnancy and Infant Loss Statistics)

Introduction

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

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

Previous posts in this series include:

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

Please note that I have previously explored today's topic: By The Numbers, but that I try to make the numbers/statistics accessible today.

What is Pregnancy Loss, and how common is it?

How you define different pregnancy loss types definitely affects how the numbers tally up, so let's take a look at how things come together.

Early Pregnancy

Miscarriage (usually defined as a loss within the first 20-25 weeks of pregnancy) is a tricky one, since really early loss is sometimes so early that the mother might not even realize she's pregnant, and may think the loss is just her next period. Those are impossible to count, though, since a mom would never be able to report that she was pregnant and then lost it. Early pregnancy detection tests mean that people do find out much earlier than they used to, so more people are aware of early losses than in previous decades.

There is data out there about miscarriage frequency, but since it's hard to pin down (what if you only have one positive test and then a period? Was that a pregnancy?) the numbers are less concrete. Once I find solid sources, I will share.

Late Pregnancy

However, stillbirth (a loss within the second half of pregnancy, all the way up to what would be a full term birth) has more solid data. In the US, a stillbirth is considered to be any loss in week 20 of pregnancy or after. According to Global Health Organization standards it's the 25th week and beyond. In both cases, it is when the baby is not born alive (https://www.cdc.gov/ncbddd/stillbirth/facts.html).

In the US, the CDC (Center for Disease Control) is one of the main organizations that keeps track of health data, including death. They say that about 1% of all pregnancies end in stillbirth. That would be 1 baby in 100 - which is a lot. According to WHO (the World Health Agency), who is an international organization, the worldwide rate is actually about 1.8% - which is like 1 baby in 50, which is even more awful. Not only that, but many of these deaths could actually have been prevented (http://www.who.int/reproductivehealth/topics/maternal_perinatal/stillbirth/en/).
Note that these are worldwide rates...

In the US alone, which has about a 3 in 1000 rate of stillbirth death (GHO Stillbirth rates by Country), there are about 24,000 stillbirths a year (CDC, the data from 2013).

According to WHO, "Every year, worldwide, [...] 2.6 million babies are stillborn" (http://www.who.int/mediacentre/news/releases/2016/stillbirths-neonatal-deaths/en/).

I don't think I need to tell you how many devastated parents that leaves...

Pregnancies as a Whole

The number that is often thrown around is "1 in 4" pregnancies results in loss. I am having a hard time finding good sources to document this, but I would just like to point out that it is 1 pregnancy out of every 4, not women, not mothers, and this does seem to include stillbirth statistics, as well as the nebulous and hard to estimate miscarriage numbers I mentioned above.

To sum up, worldwide, 2 in every 100 babies dies in the second half of pregnancy. If we add the whole pregnancy, it might be as many as 25 in 100. That's a quarter of the babies, folks, 1 baby in every 4. This is a huge problem.

Yours,

Sarah

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

Wave of Light

(topic: Loss, Remembrance)

Wave of Light 2017

Don't forget! TONIGHT, Monday the 15th, light a candle (or one for each baby you know) or turn on a battery candle, or light a candle at a place of worship...

If we all do this in our own timezone, from 7pm to 8pm, a rolling wave of light will flow around the world, in memory of all our little ones 💗



Yours,

Sarah

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

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

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

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

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

Pregnancy and Infant Loss Awareness Month

(Topic: loss, grief, awareness)

What is this Awareness Month?

This month is a special one in the USA, but I don't know if other countries officially observe it. Back in 1988, President Reagan specified October as Pregnancy and Infant Loss Awareness Month (Full text of the official declaration at this link).

The idea is to help people who have not gone through a loss to know that it still happens. If people know it's a problem, this helps in 2 ways: 1) they might feel less betrayed if it happens to them, and less like a single aberrant case, which is a lonely stance, and 2) researchers will be more likely to pick up the topic to potentially develop both ways to support people going through it and ways to prevent it in the first place. As he said in his declaration: "It also enables us to consider how, as individuals and communities, we can meet the needs of bereaved parents and family members and work to prevent causes of these problems."

You may notice elements of the awareness "campaign" if you see things like a half-pink, half-blue awareness ribbon; you may see posts about people's babies who died or some friends may go very quiet on social media for the month. Some newspapers or television stations may even do features about some of the support or research organizations created to help parents going through this type of tragedy.

Awareness ribbon with cockade, that I made for our door (a tiger is the symbol we use for our son Charlie). We have had one on each door to the house since we moved in.

What will this blog do?

I will be posting a lot about loss this month, but will have posts about topics that will be helpful, I hope, to share with non-loss friends to help them understand.

Post topics will include:

• What is helpful to say or do for a friend who lost a baby?

• How common is Pregnancy Loss and Infant Loss?

• Words associated with Pregnancy and Infant Loss

 Please feel free to comment below or on Facebook or Instagram @being_charlies_mama with any other things you think it would be helpful for me to write about.

Why is this month special to this blogger (Sarah) personally?

My son Charlie was born (stillborn) in 2016, and since then, October has been a month were we make time to visit Charlie at the cemetery (we go other times too, of course!) and where we make sure to talk to others about him. There are also memorial ceremonies and walks that we take part in, and it really helps us feel that our otherwise invisible son is acknowledged and remembered. October was also the month we found out that I was pregnant, back in 2015, which adds an extra layer for us. You can read more of our story by choosing the "Who is Charlie" link at the top of this page, or clicking here.

Related Dates

October 15th is Remembrance Day, specifically, so many ceremonies and remembrance walks are scheduled on or right around this date. There is also a "wave of light" - lighting a candle at 7pm, that many people around the world take part in. By lighting a candle in memory of a baby, or multiple babies, from 7-8 pm in your own timezone, there will be a continuous light going around the world as people in each zone light their candles.

Wave of Light 2017 at our house. I lit a candle for every loss family (and each baby thereof) that I knew personally. Too, too many. Love to every single one. The white/orange/black candle with a tiger ribbon is for our son Charlie.

What can I, the reader, do?

• Share this post! Talk about the issue, post about the issue, or share links about the issue. The more people know about this, the more likely it becomes that the people who can do something about it will hear. Also, the more people know about it, the more supported loss-parents will be. Please feel free to post links to this post or any other post on this blog. If posting on Facebook, link the @beingcharliesmama account or me personally, Sarah Warner. Direct link to this post is https://clothespress.blogspot.com/2018/10/pregnancy-and-infant-loss-awareness.html

• Light a candle from 7-8pm on October 15th. It can be in memory of one specific baby, multiple babies, or if you don't know anyone, light one in honor of all the babies who died too soon. If you are in a dorm and can't have candles, you can use a nightlight or battery candle, or light one at a local church or chapel or house of worship if that's available to you. It isn't the candles per se :) it's the love and thoughts and memories!

• If you know someone who lost a baby, whether during pregnancy at any point or after birth, let them know you're thinking of them. Just sending a quick text or PM, or a card in the mail - whatever your normal way of chatting with that mom or dad might be. Don't forget the dads! They miss their children too.

Yours,

Sarah

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

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