Compiled
by Kota Discussion Group
In Honor and Loving
Memory of Our Children
Welcome to Part V of our
Grief Jouney Q & A.
The content here is generated
from an online discussion
and support group for
bereaved parents. The
creator of this Grief
Journey Q & A is Stephanie
Marrotek who posts questions
once a day or once a week
and invites all members
of the discussion group
to post answers. In addition
to answering on the group,
some members have elected
to share their insights
in a more public way through
this column. Our hope
is that you will find
some spark of inspiration
or comfort or help here.
These words are not offered
as prescription for the
ways we "should"
handle grief. These are
just insights into how
others are managing day
by day after the death
of a child.
If you have older
surviving or subsequently
born siblings, and they
have an icky day when the
come to you and say, "I
just miss my brother/sister
who is dead," what
do you do to help them?
Charlie routinely
says this. We'll be driving
down the road to school
and out of the blue he will
say that he misses his sister,
and wishes she hadn't died.....It
makes me want to just weep....but
I then talk to him about
her and that he saw her
and was able to touch her
and hold her....and that
maybe someday we will have
another baby, God willing.
It is so hard to help him
thru this. But I just try
to make our home a safe
place for him to talk about
her and the fact that he
misses her!
Stephanie
I give them a hug and
sit down and talk with
them. Sometimes they feel
better just by talking,
sometimes it is a trip
to the cemetery that helps
them. Abby likes to sit
in the rocking chair in
front of Nora's cabinet
and listen to our Nora
cd and look at her pictures
or hold her baby things....
Corey likes to journal
or draw pictures of Nora...
Now that its been two
years, I know what helps
them and I direct them
in that path. Just listening
I think is the best thing
for them, just like for
adults, sometimes we just
need to talk ...Christine
: Often with the
death of a child, there
are other losses, too. ie,
loss of home, loss of money,
loss of job, loss of friend
& family... How have
secondary losses since the
death of your child affected/effected
your view of the world?
When Amanda died, I felt
like I lost my ability to
be the friend that I was
before....I feel like I
judge other moms and how
they treat their kids and
take them for granted, etc.
I lost my fertility (hopefully
just for a season) and that
has made me bitter at others
who have no problems concieving.
It all has made me alot
more pessimestic than I
have ever been. I look at
situations and say, "well
IF it all works out then
you will have this"....where
before I used to go thru
life like "LA LA LA
LA it is all beautiful and
my life is great!"
I see the world as a dirty
and scarey and hurtful place,
it is no longer a beautiful
garden. This makes me very
sad.
Stephanie
I find I have to work
much harder now to believe
in abundance, to believe
that I can care for myself
and my family. After our
son died -- as if we hadn't
lost enough -- my husband
lost work from the .com
bust, we lost our house,
we lost decent communications
with our other kids, we
were at one point homeless
living in our car. We
have built back slowly.
We are okay-ish now. But
I find that I jump to
being cynical very quickly
now. I find that even
when good things happen,
I spend about half my
time waiting for the other
foot to fall with the
pain of the bad news.
So it isn't just like
before when I could breathe
and do my zen meditations
and believe wholeheartedly
in some good life if I
just "stayed centered"
and "manifested abundance"
-- blah blah. I was doing
all that when my son died.
He still died. That sucks.
So anyway, I just have
to work harder to meditate,
quiet my cynic, feel cared
for, feel the ability
to care for others. It
kinda stinks to not be
"la la" innocent
anymore.
-k
32) October is
Loss Awareness month. It
is also the season of Day
of the Dead and All Soul's
Day. What, if anything,
have you done this month
in honor and memory of your
child who died?
I lit candles and said
a prayer for all of our
babies. -Keny
I helped a friend who
organized a Walk to Remember
on October 4, I contacted
the local newspaper suggesting
they do an article on
pregnancy & infant
loss awareness, we attended
a Pregnancy & Infant
Loss Remembrance Day service...I
also bought a couple of
star punches and a rubber
stamp quote about stars
as they embody Adam's
spirit for us.~Nisa
On October 5th I participated
in our local remembrance
walk. I also made the ribbons
for the event and had several
left over. With those I
them to attached a card
which indicated what they
were for. On the back of
the card I listed as many
angel names and dates as
I could. I sent them to
our local Children's Hospital
NICU and to the labor &
delivery nurses at the biggest
hospital here in Seattle.
I brought some to work and
was surprised that I ran
out. I had a dozen or so
co-workers ask me where
they could get one and I
had run out :(
~Krista, Madison Elaine's
Mommy
Rob, Robbie, Jake and
I did the Walk to Remember.
I also spent some time
at a hospital to take
care of myself in honor
and memory of Lily. I
have also decided to put
a pic of Lily in the living
room -- although I haven't
actually done it yet.
I am hoping to have Robbie
and Jakie help me make
a frame. ~Melanie
We had our own personal
candlelight ceremony for
our babies and wore pink
ribbons on the 15th. We
have also set up our offrenda
for Nora and our other children,
a tradition which we learned
here on
this board, it has become
such a warm, loving tradition,
something tangible we can
do for Nora and with her
things....~Christine
Katie's answer: To honor
Charles during Loss Awareness
month, I have done a number
of things with NeoFight
Inc and the IN MISS Chapter.
I participated in the
annual Walk to Remember
by St. Francis Hospital.
I was able to read a poem
I had written for Charles
called, Heavenly Dreams.
Everyone that attended
the Walk was able to take
home a potted mum in their
child's memory. I am pleased
to say that his mums,
which happen to be his
birth flower, are still
going strong with beautiful,
vibrant colors! I was
hoping they would still
be in good condition for
his birthday. It looks
like the Mums will continue
to survive, and I will
be able to transplant
it into a garden for Charles.
Since September and going
through November, the
IN MISS chapter has had
an ongoing teddy bear
drive in our children's
honor. The monthly IN
MISS Chapter meeting was
held on Infant Loss &
Pregnancy Awareness Day
by Crissy Tohm and myself,
Co-Facilitators. I lit
a candle in recognition
of all children that have
died. On October 25th,
National Make a Difference
Day, I volunteered with
NeoFight to visit area
hospitals NICU's and Labor
and Delivery units. We
handed out our support
information along with
baby blankets for babies
in the NICU. A nurse shared
with me that a lady lost
her first born the day
before our event. I gave
the nurse a baby blanket,
some support information
and my phone number if
this patient wanted to
talk. My prayers continue
to be with her each day,
since I learned of her
loss.
At our Local MOPS on the
15th, I announced that it
is loss awareness month
and briefly told them that
I had lost a baby. ~Stephanie
This has been an odd
month. I really wanted
to do celebrate Day of
the Dead all month, but
things have been so hectic.
I have three friends who
have declared their own
need to be with me on
Nov 1 for Day of the Dead.
We'll be meeting in the
big purple yurt to do
a bit of ritual -- make
an alter or piece of art
to symbolize a stability
for hawk and I -- something
about maintaining my connection
and parenthood to Dakota
while at the same time
moving forward in time
in life with stable housing,
continuing my mission
of outreach, making art
a part of the fiber of
living. We'll see
how it goes. ~K.
33) When you have
a day that feels very lonely
and difficult and empty,
what tangible thing do you
do or have to hold on to?
For instance, do you have
a pillow to hug or a lock
of your child's hair you
touch? Or some tangible
ritual you do to take care
of yourself?
I have a bear that was given
to me in the hospital, it's
dressed in the first outfit
that we bouht for Raeyn,
when I am particuarily low
I hug my bear and think
about my angel girl...I
also find alot of
solace in working on her
website. -Keny
nothing tangible. I've
never thought of doing
this actually. When I'm
feeling lonely, I tend
to isolate myself and
I ask to be left alone.
I read grief articles
online or read boards.
I also journal and I read
books on loss.~Nisa
I made a very detailed
scrapbook. In it are dozens
of photos, momentos, poems,
etc. and if I am having
a bad day, really missing
my girl, I look through
the entire thing. I might
also light her candle or
hold her urn. ~Krista, Madison
Elaine's Mommy
Wow. I probably need
to think some more about
this. Rob got me a bracelet
with a charm on it that
said Lily's name and birthdate
but I lost the charm.
(yeah, I know, devastating).
I have bunches of stuff
of hers from the hospital
but it's still full of
bad memories for me. does
that make sense? Instead
of the smell reminding
me of how precious Lily
was, it reminds me of
death and horror. I think
in my own time I will
be able to make a kind
of a cabinet type shrine
-- I think Christine has
one like this -- that
holds Lily stuff that
I can go to when I feel
sad or happy or just miss
her. ~Melanie
I hold onto her blanket
that she was wrapped with
at the hospital. Or I have
a bear, my Nora bear, my
mom gave me this when I
lost Nora so I could have
something to hold onto,
she didn't want me to leave
the hospital with empty
arms. I just bought a little
angel tshirt for it, I hold
that and think of Nora.
~Christine
Katie's Answer: I will
wear a heart locket that
hold two photos of Charles.
The locket rests near
my heart where Charles
will always be...in my
heart! I will also sit
down for some quiet time
to refect on my Son. I
will look through his
memory album that I made
and write in my journal.
I have a doll that another
bereaved mom bought me.
She is the exact size and
weight that Amanda was.
When I am feeling real down,
I just hold that doll and
think of her. I also have
a teddy bear that my mom
and dad gave us when we
were pg with her, at Christmas,
just 2 months before she
died. The bear now wears
the preemie outfit that
she wore in the hospital.
This bear is very very special
to me. ~Stephanie
My tangible items sort
of change over time. At
first it was Kota's baby
book -- I would read it
over and over. Then it
was a lock of his hair
in a locket I'd wear on
a necklace. Then it was
a copy of his footprints
that I carry in my wallet
-- I still take out his
footprints and put them
on the table in front
of me when I attend workshops
and classes. And just
as of yesterday, a wonderful
woman who quilts for Project
Linus here in Seattle,
sent me this little pillow.
On one side is a duplicate
of a quilt square she
made for Kota for a memorial
quilt -- on the other
side she quilted that
Dakota Tribe Proverb!!!
I'm in awe. I love that
pillow now -- I was like
hugging it in the coffee
shop yesterday! :) ~K.
34) Are you planning
to do anything for Children's
Memorial Day in December?
If so, what? Is there a
local event happening that
you can share with the group
-- maybe someone else well
read and turn out to be
nearby and able to attend
the local event/ceremony...
I will attend 2 ceremonies.
One being on NCMD st The
San Diego Hospice, I hope
to be able to take part
in its planning next year.
Also, the weekend before
I will be going to the ceremony
at The Angel
of Hope statue in Lake Forset,
CA. I have abrick placed
in memory of Raeyn for her
1st birthday, it will be
placed before the ceremony.
-Keny
One of the support groups
that I attend has a service
and reception that takes
place for that day and
we will be attending it.
It's in Nashua, NH at
St. Joseph's Hospital-
we put our special ornaments
on a Christmas tree for
display for the month
of December.~Nisa
Planning on coming to Vashon
or going to the Compassionate
Friends ceremony in Bellevue.~Krista,
Madison Elaine's Mommy
I wasn't planning anything
but I read Katie's response
so I'll probably try to
get hooked up with the
Brooke's Place event.
Thanks! ~Melanie
I know of no ceremonies....
we again will have our own
private ceremony, we usually
go outside that night ,
with our 4 candles and look
up at the stars and reflect...
~Christine
Katie's Answer: Brooke's
Place for Grieving Young
Children will be holding
their annual candlelight
Children's Memorial Service
on December 9th. The Purdue
Men's Choir will be there
to sing. I will be volunteering
with NeoFight at the craft
table before the service
to help decorate luminaries.
I have submitted a photo
of Charles for this event.
The program will show
all the photos on a big
screen of children that
have died.
I will probably light a
candle and think of her
and work on her scrapbook.
I do not know of any local
events. ~Stephanie
We are having a National
Children's Memorial Day
(NCMD) event here on Vashon.
Second Sunday of December,
at 5pm, at the Hardware
Store. (it's not really
a hardware store) We only
have an hour there and
cannot light candles really.
So I'm hoping to use the
hour to have the children's
names said outloud, to
offer everyone a chance
to add something to an
ofrenda at the front of
the gathering space. And
then maybe, if I can find
funding to provide this,
I'd like to have little
candles available for
everyone in attendance
to take home with them
to light at 7pm that night
as part of the international
CMD event. ~K.
35) Have you read
any books that were particularly
helpful to you at some point
on this grief journey? If
so, will you share title/author
info with us?
Dear Cheyenne by Joanne
was the best thing I could
have read in the beginning
of my grief walk....I learned
that I was not alone or
wrong in my feelings.I learned
that I would survive and
Raeyn would
too...through me. -Keny
In the months following
my loss, I found books
on loss and grief very
difficult to read so I
avoided them. When I was
ready, I found Silent
Sorrow by Kohn and Moffitt
and that really helped
me the most - it had the
info that I needed to
write my letter to the
hospital, asking that
changes be made to how
they treat parents who
are experiencing loss.
At first when I finally
got Empty Cradle, Broken
Heart by Davis (a few
months after my loss),
I felt as if I had already
gone experienced and worked
through much of what the
book talked about so I
only skimmed it here and
there. Just recently,
I've picked it up again
and found it is benefitting
me more now than it did
when I first got it.~Nisa
When Bad Things Happen
To Good People ~Harold Kushner
Empty Cradle, Broken Heart
~Deborah Davis
~Krista, Madison Elaine's
Mommy
Mrs. Duck and the Woman
Dear Cheyenne
100 Ideas for Healing
a Parent's Grieving Heart
After the Death of a Child
(I really want Honored
Babies -- I bet that's
a good one!)
A Grace Disguised
The Day My Life Changed
Forever
Harry Potter -- sorry,
had to add, keeps my mind
off bad and on good.
~Melanie
Finding Hope when a child
dies- Sukie Miller
A Decembered Grief- Harold
Ivan Smith- excellent for
the holidays
The worst loss- Barbara
Rosof
Holding on to Hope- Nancy
Gurthrie
~Christine
Katie's Answer: The three
top books that continue
to be very helpful during
my grief journey are:
Mrs. Duck and the Woman
by Kara L.C. Jones: This
sweet, little book gives
insight to one's loss
of a baby. It helped me
know that I can still
be a Mom to my Son even
in death. It helped me
understand that even in
death...he will always
matter!
I Am Wherever You Are
by Nancy Noel: Another
little book of comfort.
It offers loving quotes
and beautiful angel children
of Noel's artwork. This
is a special book, because
my Mom gave it to me on
Charles' one year anniversary.
Hugs for the Hurting.
I can't remember the author,
but there is a whole series
of different types of
'Hugs For..' books. This
book was given to me by
a friend soon after my
loss. It has many short
stories. None of them
were specific to my loss,
but many of the feelings/emotions
people dealt with in each
story were similar to
what I was feeling. After
each short story, there
is an area for journaling
your thoughts for reflection.
I was able to jot down
my private thoughts in
this touching book.
Mommy, please don't cry
by Linda DeYmaz
Remembering with Love by
Elizabeth Levand and Sherokee
Ilse
Tear Soup by Pat Schwiebert
and Chuck DeKlyen
When Grief Breaks your Heart
by James W. Moore
Empty Arms by Pam Vredevelt
When Life is changed forever
by Rick Taylor
Cry until you Laugh by Richard
J. Obershaw
An Early Journey Home by
Mary Ann Froehlich
When God Doesn't Make Sense
by Dr. James Dobson
Roses in December by Joni
Eareckson Tada
Goodbye my Child by Sara
Rich Weeler and Margaret
M. Pike
I'll Hold You In Heaven
by Jack Hayford
Empty Arms by Sherokee Ilse
A Time To Be Born by Julie
Martin
The Grief of Parents When
a Child Dies by Margaret
Shandon Miles
Dear Cheyenne by Joanne
Cacciatore-Garard
When I'm Alone by Ron DelBene
Songs for Sarah by Paula
D'Arcy
~Stephanie
Tons and tons of books!
I've posted reviews of
many books at Kota Loss
Journal. But just quickly:
"Finding Hope When
A Child Dies" by
Dr. Sukie Miller; "Stillborn"
by Dr. John DeFrain; "In
the Midst of Winter"
by Mary Moffat ~K.
36) Who was the
last person you talked to
(in person) about your dead
child? What was the conversation
about?
Two days ago I had a conversation
with a perinatologist in
the E.R., he told me that
if I lost this "fetus",
I should move on and plan
for the next one. I was
so thrown off by his attitude
that I actually had to take
out Raeyn's picture and
try my best to explain to
him that she and this child
were not "fetuses"
to me...they are my children
and no one will replace
them.
On a better note...I have
received several visitors
wishing me the best for
her birthdate. It makes
me proud that my tiny angel
has touched so many people.
-Keny
My daughter - she was
telling me about the paintings
she did for each of us
- mom, dad, her, Adam,
Grandpa, her grandmother
and her aunt. She always
includes Adam as well
as her Grandpa when she
talks about the family.
~Nisa
Hmmm.... other than a fellow
bereaved mom? I suppose
it was my co-worker and
she was asking about how
it felt now a year and a
half later. It wasn't too
lengthly a conversation.
~Krista, Madison Elaine's
Mommy
The last person I talked
to Lily about was the
mother of the guy who
is moving in across the
street -- I went to highschool
with him and knew his
mom back then. She mentioned
going through breast cancer
the previous year and
losing her father and
I mentioned what a hard
year it was for alot of
people and that we had
lost Lily. She was very
gracious and thoughtful
and shared that she had
3 miscarriages and an
ectopic pregnancy in her
childbearing years. ~Melanie
There are not a lot...
in person, or on the phone
would be my husband or my
mother.... the only two
who still talk with me about
Nora. Mom tells all her
patients at the hospital
about Nora and that
makes me feel that Nora's
life had a purpose. ~Christine
Katie's Answer: The last
person I talked to in
person about Charles is
my friend, Michie. We
were discussing what to
do for Charles' 4th birthday
anniversary. I have the
day off from work, and
we will be going out to
lunch together. We usually
do something special together
every year for Charles.
I talked to a lady who
I did a Homemakers Idea
Company party for. She also
goes to the Assembly of
God church we are checking
out. I told her about our
loss and trying again, and
she said that she would
pray for me. ~Stephanie
Yesterday I met with
another facilitator who
is offering grief support
to teens on our island
after the very tragic
murder of a young girl
here in our neighborhood.
She was asking about how
I came to have all these
outreach materials and
grief materials available.
And I told her (briefly)
about Dakota.
~K.
We'll have more Q &
A in December...
This is a discussion and
support group held online
thru the free services of
Yahoo Groups. Stephanie
Marrotek is the host of
the Grief Journey Q &
A. The full group is moderated
by the staff of KotaPress.
The answers given in this
Q & A were offered by
the generous hearts of the
members of our online group.
We cannot thank you enough
for your candor and honesty.
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