Thank you to our guest blogger, Heather, who had a LOT to say about the new "rules" coming from camp SOBBS.
RULES, RULES, RULES … Do as we say, not
as we do
If you’ve been lucky enough to still remain a member
of SOBBS’s, Stories of Babies Born Still, Facebook community page, then you
have probably seen the new and improved “rules” of proper grieving according to
the SOBBS admin team. If you’re like me,
these “rules” have left you scratching your head in confusion at best, or have
left you angry at worst. I have to
admit…I’m a bit of both with a healthy dollop of chagrin tossed in for good
measure. If you haven’t seen them yet,
or haven’t had the time to read them, I’ve transcribed them here for you.
Why did I transcribe the “rules” instead of posting
screenshots? I really wanted to absorb
the words and understand exactly what was said versus the forced, and supposed
intent, of the “rules”. You’ll find the
SOBBS “rules” italicized and my sometimes literal interpretation in plain
script. Now, you’ll probably find
something strange in the text of the “rules” that looks like this [sic]. Now, while I personally find this to be utter
garbage and not worth the paper to wipe my…well, you know, with…the [sic] in
the text means that the preceding words are how Lori & company actually
wrote the “rules” and have not been altered or changed by me at all. It really just illustrates how much care and
attention they did not give to the
consideration of these so-called “rules”.
So, now that I’ve explained myself…let’s dive in,
shall we?
SOBBS Wall Policies
We, at SOBBS, are here
to provide a safe place for families to mourn, grieve, honor, share, cry, vent
and to begin to heal after the loss of a stillborn baby. While we 100% recognize the loss of a child
regardless or [sic] age, stage or
circumstance is a pain deeper than the ocean and wider than the sea we are a
group for STILLBIRTH. We exist to give
families of stillbirth a voice, a shoulder, an ear. While we know this is a painful, emotional,
exhausting, heart-wrenching journey and families are welcomed [sic] to share whatever they may feel here, there
are a few things we cannot allow on our wall for the respect of all member.
Now, if you’re like me, you don’t
care to be yelled at no matter the situation.
Lori & Co. are screaming STILLBIRTH
at us. They want to make sure you get
it. That’s all they care about is
stillborn children. Nothing else. Now, have they defined what stillborn is and
what they mean by that? No, they haven’t
and here’s why…they don’t know or they just don’t care. Period.
Now, I know, most of us regard stillbirth as a full-term baby, but ask
any mother who has miscarried at 8-weeks or at 14-weeks and they will tell you
that the baby, although not fully formed, was still at birth. That’s the point…they were birthed. And yet, Lori & Co. do not allow
miscarriage mothers onto the SOBBS Facebook page. They have a “SOBBS – Miscarriage Matters”
Facebook page that you can join, but only if the miscarriage is within a
certain number of weeks. I believe that
anything into the second trimester is not considered appropriate for the
“Miscarriage Matters” page and doesn’t fit in with the SOBBS main page. So what are those parents to do? Who cares!
If you don’t fit the mold, you don’t get to join. As a matter of fact, I heard from a loss
parent who had experienced a stillbirth and then a miscarriage. She was not allowed to talk about the
miscarriage in the SOBBS main page and she wasn’t allowed to join the
“Miscarriage Matters” page because she was already a member of the SOBBS main
page. So this poor woman has to choose
which child is more important to her to remember and get support on. Bad form Lori! Seriously bad, but let’s go back to the text
and see that she’s very poetic about oceans and seas…if you like nautical
themes.
1.)
We
cannot allow posting of anything related to the sale of any items other than
those items in our SOBBS store or SOBBS approved fundraisers. While we know this is a bit disappointing
this is to protect us as well as our members from any issues arising from
outside vendors. Please know all items
sponsored by SOBBS go to support our various awareness campaigns and give back
to the BL community. If you have any
questions regarding our items or campaigns please visit our documents section
or message one of our admins.
Now, I know. This
“rule” doesn’t seem too horribly unreasonable, does it? What I think is being said is this: buy our stuff and only our stuff, or what we
tell you to buy, because we really don’t care about your healing or about your
children or about you…we just want your money.
Now, I can hear you say “that’s not what’s being said…they do care about us!” I’d like to take this moment to point out
that their very first “rule” – the very first one – has nothing to do with how
you, as a loss parent, is to be treated or respected or anything of that
compassionate nature. Their first “rule”
tells you everything you need to know about the motives of this group because
their first “rule” is what is most important to them and that is money.
I’m sorry, but that is the case.
Please read it again. Just the
first sentence, and see if I’m correct.
I truly am sorry. I know we all
had higher hopes and expectations for this group.
And I know I’m being nit-picky here, but the reference to
“BL community” may leave people completely confused, especially if this is the
first thing they have to read before they can participate in the group. New loss parents may not know that “BL”
stands for “baby loss”. I would think
that writing it out may be more helpful than using an abbreviation that many
new to the community just would not know about.
So congratulations Lori & Co. for making new members feel stupid on
top of feeling like any step could get them in trouble! Hell of a way to make a first impression.
2.)
Please
do not post links to any other pages, groups, fundraisers or products on the
wall without express permission from the admin team. While occasionally we do share a link that we
find particularly useful we want to keep our space as it was meant to be, a
place for support. Too often members
posts [sic] seeking to give/receive
support, vent, cry, connect, share, love, feel [sic] get lost among posts of an advertisement nature. If you have found a site or link that you
would like to share please message one of the admin team so we may evaluate its
content. There is a one go-to place in
the documents section called “Good works
are links that form a chain of love.” Where you may paste a helpful link,
group, organization or product.
So, is this reasonable?
What part? Let’s break it down some. The posting of other pages, groups,
fundraisers or products…again, sorry to say, this points clearly to what is
most important to Lori & Co. and that is money. The posting of links
to other pages or groups or fundraisers or products would interfere with their
ability to make money off of you, the grieving loss parent. They don’t want you to bring attention to any
other page or group because that would take attention away from them and
promote competition in the market of loss.
What could you find on other pages?
Tips for maintaining a healthy home and body even though you don’t feel
like doing anything except crying. What
could you find on other groups? More
than likely the actual support you are looking for. There are a lot of groups out there who are
there specifically for sharing. I can’t
tell you how many of them I’ve been to that just want to be there for you and
are not trying to sell you something or guilt you into participating in a
fundraiser so they can make money off of you…off of your baby…off of your
grief. Loss shouldn’t be profitable, but
once again…I refer you to the very first “rule” which has nothing to do about
you, the loss parent, or your child – but has everything to do with your bank
account.
They want you to refrain from posting about fundraisers. But that’s what Lori & Co. do all of this
for, isn’t it? To raise funds for Cuddle
Cots? They say they can hold your funds
in escrow to put toward a cot with your child’s name on it and place it in a
hospital of your choosing. That’s what
they do, isn’t it? But you can’t post
any fundraising that you are doing to get that cot in memory of your child
because that goes completely against the no-fundraising “rule” unless it is a
fundraiser that SOBBS is putting on and those funds raised will go to whatever
pet project Lori is feeling like doing at that moment. What else does this speak to? If you raise the funds yourself, you might
actually find out that you don’t need Lori or SOBBS at all to purchase a Cuddle
Cot or place it or put your child’s name on the plate! Goodness me!
They just can’t have that, now can they?
Oh, and no links unless they want it, which means that
someone on the admin team wants the credit for finding said link. It’s sad, but true. Reflective glory on your personal stages of
grief. So, what else is there? Oh, yes.
Too often members post wanting to talk to someone because they need
support or to vent or whatever but with all the advertisements they can’t get
the support they need. Sounds like a
good thing but I’m going to burst that bubble.
I have seen documentation between Lori & Co. admin team members who
make fun of loss parents looking to connect with someone to talk or vent. Advertisements aside, the admin team at SOBBS
does not care about you or your loss.
They make fun of you for sharing.
They make fun of you for reaching out to other loss parents. And they doubt the legitimacy of your loss
and will go to any depth necessary to find out if you are lying. That to me is not a group of people that I
want around me. Do you want these people
in your corner? I can hear you now, “but
they don’t do that to everyone, just those that must have deserved it”. I say to that, in response, if they do it to
just one person, that is one person too many and there is nothing to stop them
from doing it to everyone. And
absolutely no one, and I mean no one,
deserves to be ridiculed for a loss…no matter what they may have done or said
within the group or to a member of the admin team. Everyone should be treated with dignity and
respect!
And one last thing…if you post a link, you must get express
permission from the admin team (who, by the way, cannot agree on anything and
change their minds constantly…I was let in to SOBBS and then removed and then let
in again before being removed once more because one admin said “yes” and Lori
said “no”). They have to check it out
first to see if it is quality material by evaluating its content. If you are posting it, that would, I’m
assuming here, be because you found it particularly helpful in your own
grieving process. By Lori & Co.
having to evaluate the content before allowing it to be posted, that is the
equivalent of them telling you that they are evaluating your mental state and
grieving process and will tell you whether you are doing it right! Who the hell are they to tell you whether you
are grieving properly?!
3.)
Absolutely
no cursing, cussing or name calling.
When cuss words are used in a post it takes on a whole different
inflection and some are truly offend [sic] by cuss words. Posts with
cussing or name calling will be removed without notice. In addition, we do not tolerate any
disrespectful, negative or crude comments or posts of any kind. Please do not come to the wall and air
personal differences with individuals, groups, links or drama that might be
happening on another page. That is not
to say you cannot disagree with each other as long as it is done in a caring
and gentle manner. Anyone who violates
this policy will be suspended from the group for a period of 3 days. After 3 days the member may be re-admitted to
SOBBS by requesting to join again. If
another incident occurs with the same member that member will be permanently
banned from SOBBS. If someone has made a
comment that feels malicious or hurtful to you please contact one of our
administrators immediately.
Again, I will be nit-picky.
Cursing and cussing is the same damn thing. And, once again, who are they to explain to
you what the usage of curse words will or will not do to a posting and sentence
structure? Seriously, are you guys a
bunch of 5 year olds or are you mature adults who know what to post? But who am I to judge the no cuss words
“rule”? Well, I’m just a loss parent who
has been through the grieving process several times and not a single one of
those periods of grief were ever the same.
So Lori & Co. are again telling you how to grieve. No curse words! People grieve differently and some use curse
words because those words convey the hurt, the anger, and the futility of the
loss of their child! How many loss
parents are going to censor themselves and not be honest about their
feelings? Gee, let’s see…how is “John
Doe” doing today? I think I’ll ask
him. And then John just wants to respond
that he feels like shit. That’s an
honest and to the point response that adequately expresses how he feels. But Lori & Co. can’t have that…so poor
John has to use extra energy and mental processes to find other words that can
accurately and succinctly express himself because he can’t use the words
immediately available to him. Lori &
Co. won’t let him. Again, folks, this
points very clearly that they don’t care about you.
And to further the “we don’t care” pattern, you can disagree
with each other, but not with the SOBBS admin team and if you don’t follow the
“rules”, you will be suspended for 3 days.
Well, that’s what they say, but in truth…you’re being kicked out. But you can always ask to join again after
the 3 days are up. But if you screw up
again…you’ll be dropped and blocked from ever joining again and you’ll never
find them again. Ask around. There are lots of loss parents who were
removed from the group and automatically banned for no other reason than who
they had in their Facebook friends list or because they disagreed with Lori or
they had a simple question regarding the funds that they raised and donated to
SOBBS for the purchase of a Cuddle Cot in their child’s name. If Lori feels threatened, whether the threat
is real or imagined, she will take swift action against you. Don’t take my word for it though. Lori & Co. are telling you this
themselves.
Have you ever heard of the “three strikes” rule? It’s a common rule in baseball. Three strikes and you’re out! Well, for Lori & Co. you only get two
strikes before you’re out. Cast into the
shadows of a yawning abyss of guilt, grief, and now, abandonment. Yes, it isn’t fair. But people who actually care about you will
pull you to the side (in a private message) and ask you what’s going on with
you. See, people sometimes lash out in
anger in their grief. Grief is
numbing. Anger at least lets you feel
something other than the emptiness.
Truly compassionate people understand that and give you the space you
need to do this. Lori & Co. will
just cut you off and wash their hands of you, and your grief, and your
baby. They say it’s to protect the other
members, but really it’s just because they are too self-absorbed and lazy to
care about you.
4.)
We
cannot allow any member to be discourteous to any member of our administrative
team. If you have a concern or a problem
with one of our team members please contact us directly. It is our heart [sic] to be loving, inspiring, and helpful, never judgmental, or
hurtful. So please give us the chance to
fix a problem before it escalates. In
addition, SOBBS admins reserve the right to delete ANY post at ANY time for the
serenity of the group. If a post gets
out of hand or turns ugly it will be removed without notice. If you have a question regarding this policy
please feel free to message an admin. We
will not discuss or debate a removed post on the wall. Anyone who violates this policy will be
suspended from the group for a period of 3 days. After 3 days the member may be re-admitted to
SOBBS by requesting to join again. If
another incident occurs with the same member that member will be permanently
banned from SOBBS.
They’re trying to step in between you and your grieving
process yet again. Removing you for 3
days is being judgmental and is extremely hurtful. Please know that when they say discourteous
toward a member of the admin team that they mean you can’t disagree with them
or call them on their bullshit. You just
can’t do that. They know how to grieve
better than you do. They proclaim that
they are concerned with the serenity of the group and have the right to remove
any post at any time…but it isn’t for the serenity of the group at all. I hope by now, you’re seeing that they think
you should grieve in a certain way and if you aren’t doing it their way, then you
are doing it wrong. Grief is not
pretty. Grief is not serene. Grief is ugly and raw and inconsistent! Some days you’ll feel numb to everything and
other days you’ll be raging and pissed off!
That’s part of the process and everyone does it differently. Why should the reality of losing a child be
sanitized on the SOBBS wall? How is that
being supportive of your grief? It isn’t
to keep delicate members from being offended!
It’s to keep Lori & Co. looking like misty mountaintop gurus who
find beauty in mourning the loss of a child.
In a word, this approach is unrealistic and places undue stress and
strain on a loss parent for not being perfect in their expression of mourning
and grief. The serenity of the group
being touted above the raw, gut-wrenching reality of grief is ridiculous. Fuck serenity! No one suffers a loss in silence. Cry, scream, curse, rant and rave! You deserve to grieve your child. You don’t need to be supervised to ensure
correct grieving procedure is strictly adhered to. That’s what they’re doing, you know. Why else do they need to constantly threaten
you with 3 day suspension and permanent banning from the group? Yet another indication that they do not care
about you.
5.)
We do
ask that if you are posting regarding a rainbow please begin your post with
“RAINBOW ALERT”. Also if posting in
regards to your sunshine child please also begin your post with “SUNSHINE
ALERT”. This is to protect members who
are not at a place where they can read about pregnancies and can [sic] be spared the emotional upset. Also we do ask if you want to post pictures
of your sunshine/rainbows please in the post you are making write pics in comments
and post the pictures in the comments.
Please remember that even though this news is genuinely prayed for SOBBS
members, sadly, grows daily [sic]. Many, if not most members, are at a very raw
stage of grief. Some just coming back from their child’s funeral services. As we all come to learn that time and grief
changes us we must be sensitive to each others [sic] needs. Journeys and progress
are very personal and we cannot assume others can feel happy about this news in
the beginning stages of their suffering.
Posts that do not adhere to our wall policies will be deleted.
Let’s go back to the very first paragraph of the
“rules”. Not “rule” #1, but a little
before that. Remember the capitalized
shouting of STILLBIRTH? As in, that’s all they do? Yeah, well, why are they making a to-do about
the posting of rainbow and sunshine posts?
Those posts should be banned if you follow the other “rules” preceding
it. What’s more horrible to a new loss
parent…the curse words or pictures of healthy, happy babies who survived? I’d bank on the pictures of the living
children being more devastating to a new loss parent. They shouldn’t be allowed but they are
because Lori & Co. want the opportunity to brag on their living
children. You guys are a captive
audience for them. Get out while you can
and find another group who will actually give a shit about you. SOBBS is strictly for stillbirth and nothing
else. They shouted it at you! S-T-I-L-L-B-I-R-T-H! Not for miscarriages or pregnancy concerns
after a loss or for good news and sharing pictures of living children! Stillbirth.
Period. Nothing is more
polarizing than being confronted with your loss time and again by looking at
pictures of other people’s kids that they had after their loss. Is it inspiring? It could be, but the timing is circumspect. Let me share with you my experience. I had a loss and was invited to a baby shower
that was given after the baby in question had been born. I just couldn’t go. I couldn’t be happy for them and I couldn’t
stand to see that child, so I didn’t go.
I saved myself the heartache and pain of it all, but those of you who
are subjected to these happy posts in SOBBS can’t avoid it. It doesn’t matter if the pictures are in the
comments! Not all comments are
suppressed and pictures are visible. You
can’t scroll through them quick enough to make it to safety! It’s irresponsible to encourage such
postings. Seriously, folks…they just
don’t care about you.
6.)
And
finally if you feel like you may be suicidal please seek the help of a crisis
center/hotline in your area immediately.
SOBBS is designed as an on-line support group and can in no way take the
place of professional services required to treat and assist suicidal thoughts
and feelings. Please know we take talk
of suicide very, very seriously here at SOBBS.
If posts of this nature come up on our wall we do our best to point the
aching heart in the direction of help.
If a second post comes up from the same individual again expressing a
possible suicidal tendency we will do our best to contact authorities, family
members or friends to get the person the help they need. In addition the post will be removed from the
wall as well as the person posting. Some
of our members new to grief just do not have the emotional store to read or
field such things. We love each of you
and hope you all understand. If you have
any questions or concerns please do not hesitate to contact an an [sic] admin.
Also, below are a few numbers/hotlines we recommend. The first is sponsored by First Candle. The second ask for you to leave a message and
someone will call you back with in [sic]
24 hours. The third one has someone
answering the phone during daytime hours and they can connect you with a parent
bereavement specialist right away.
Phone Support Hotlines
*First Candle: 1-800-221-7437. Grief Counselors are available 24/7.
*Caring and
Beyond: (403) 294-1131 – this is a baby
loss support group in which individuals can call/visit and share their
experiences, grief, and feelings over their loss.
*National SIDS,
Stillbirth & Miscarriage Hotline: (1-800-221-7437) – offers individuals
who’ve from baby loss information [sic],
literature, crisis counseling, and the like.
In care, concern and
in the name of healing,
~The SOBBS team
Okay, I am extremely upset with
this last “rule”. If you are suicidal,
get help and for the love of all things in this world, do not turn to them
because they’ve even said it to you, in plain English, that if you are suicidal
and you post it twice, they will contact your family, friends, co-workers,
police, etc., to get you the help you need but…and this is a big but…you, and
your post, will be banned from the group.
Period. Suicide is not something
to joke about. It is serious and should
be treated with all the care, compassion and dignity that you, as a suicidal
individual, deserve. Yes, deserve. So scrap the numbers they recommended. (Two of those hotlines are actually the same
hotline with the same number. And no
hotline should take 24 hours to get back to you if you are suicidal –
ever! Every minute counts in the
preservation of your life when suicide has become an option for you.) Those numbers are for parents who are deeply
in the grieving process but have not come anywhere close to being suicidal.
How do you know if you are
suicidal? Are you wanting to die? Do you want to kill yourself? Do you have a plan to kill yourself? If you answered yes to any of the last three
questions, you need to seek immediate medical attention. Here’s what I would suggest you do.
If you are under the care of a
psychiatrist, psychologist, or therapist – call them immediately and tell them
what is going on with you, then follow their instructions.
If you are not under the care of a
psychiatric professional, please go to the nearest emergency room and tell them
what is going on with you. Tell them
that you are suicidal and that you want to be admitted for observation. You don’t have to worry about packing a bag. The psych department has everything you could
possibly need to get through your stay with them.
As a last resort
call the National Suicide Prevention Lifeline at
1-800-273-8255. They are
available 24 hours a day, 7 days a week!
They are available in English and Spanish. For more information, please visit their
website at
www.suicidepreventionlifeline.org.
Please, if you aren’t convinced now that SOBBS and Lori &
Co. don’t care a fig about you, what has to happen before you’re convinced of
it? Whatever it is, I sincerely hope
that the point of no return does not cost you your life. You do not deserve to be abandoned by them,
or anyone, for grieving your child. And
no “rules” will make your grieving process fit their ideal of what grief looks
like. The fact is, grieving, like war,
is hell! So please find another group
that will give you the support you are looking for.
You deserve to be treated with dignity and respect.
