Grief Journey Q & A, Pt. V
Compiled by Kota Discussion Group

In Honor and Loving Memory of Our Children

Editor's Intro:
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.

The Q & A

Question 1: 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!

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


Question 2: 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.

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.


Question 3: 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.


Question 4: 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 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.


Question 5: 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.

Question 6: 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.


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


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


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.

Question 7: 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.


We'll have more Q & A in December...

About the Kota Discussion Group
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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