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

In Honor and Loving Memory of Our Children

Editor's Intro:
Welcome to Part VII 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 week or month 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

Q: What are the most helpful and touching words that someone has said to you since the loss of your child?

Answers:

There have been loads of people along that way have said or done something that at that moment touched me. I think on of the most important ones has been my mother in law. Every christmas she has a small ornament wrapped in the brightest paper, labeled to Andrew from Santa. I know because of my conversations with her she trys to very hard to support me. In the beginning she was afraid to mention Andrew's name, afraid of upsetting me, she now is one of the very few who even mentions him. And I adore her for this. -Angie

My Mom told me, "You will always be a Mom to Charles.  Even in death, the love you have for each other never dies."  "I care for you and I'm always here for you whenever you want to talk." -Katie

a long lost friend came back into my life after 10 years.  she missed the period of my life where i fell in love, got married, got preggers, cremated my firstborn who was stillborn, have lived dealing with grief since.  anyway, she wrote because she found one of my writings online when she was at work one day.  she said she sat and read it and cried.  she reminded me that her birthday is the same as my son's.  we marvelled at the "coincidence" and talked a little about how souls travel together.  somehow bridging back to her filled one of the fissures that was left after my son died.  it's been the most recent tangible comfort i've had. -Kara

I think the most helpful words were a quote that Stephanie posted one day that said something like...death is not real, i am only a little ways away, behind a door, waiting for you, speak of me like you would if I were there, nothing has changed.  i would love to say that it was something a family member or counselor said to me but the most helpful words to me were written by everyone on kotapress as i struggled through things and you all told me i wasn't going crazy and that it was ok to feel the way i did. -Mel

My cousin, Kyla, who was 10 at the time, wrote me a beautiful poem, and it basicly said, " I miss you Amanda Joy, I love you, I will never forget you." And from a 10 year old, who hadn't seen her or anything, it meant so much to me. She is and has always been my closest cousin, but that just cemented my love for her! -Stephanie

Q: How has your sense of fear changed since you lost your child?

Answers:

WOW this is a biggie for me. As most of you know shortly before Andrew's first anniversary my husband was diagnosed with cancer. This compounded my fears triple fold. It just drove home I have NO control over what can and will happen. Things blindside us. I do not like crowds, I don't like socializing. I have become a home body. Most of relationships online, beside family members. I am very active with BFO (bereaved families of ontario) even then I am on high alert. -Angie

I don't fear death death; however, I have a greater fear of suddenly losing other loved ones since I lost Charles so suddenly without warning. -Katie

Ha.  Do you have a few hours to read this?  Look, I was a city child.  I grew up riding busses and subways and exploring the city and taking cabs and just being out there.  But since Dakota died, I just don't want to do any of it anymore.  In fact I sort of dread it.  I hate flying for fear of dying when my husband is still here.  I don't mind flying together coz if it goes down, probably my hubby and I will die together.  Social situations are just so meaningless now that I dread them, too.  *EXCEPT* for the MISS Conference where I feel totally in context.  I can laugh there and no one thinks I'm "all better now".  But regular situation, well, I'm just out of context and uncomfortable.  Conversations come up about kids -- and there is the inevitable "how many kids do you have" or "do you want kids" or something.  I hate it.   Honestly, here's my dream that doesn't involve fear:  we live on a couple acres now.  it is bursting with Spring around here.  i'd like an afternoon of just sitting out there and watching.  maybe a little music.  maybe a little talking.  but just hanging out, no rush, just sitting, laying down, being there.  i don't understand what happened and why i can't do that now.  back in the college days, right, with alter-states though, we often just hung out on the veranda, did sidewalk chalk art, talked, listened to music.  when the hell did all that change? -Kara

My sense of fear has changed drastically since Lily died.  I still am afraid everyday that Rob flies that his plane will crash.  I am afraid he will have an affair.  I am afraid my kids will get sick and not live through it.  i am afraid i will lose more children.  I am afraid of every good thing, that it will turn bad.  I was not a generally optimistic person before Lily died, but instead of having a sort of sarcastic attitude, now I feel genuine fear in my heart and my gut and i try to cover it up with sarcasm. -Mel

I used to be a very outgoing person who was never afraid to talk to anyone, but after the loss of my child I became afraid of crowds, of strangers, and was quiet and reserved around friends and family.  Almost five years have gone by and I'm only just now starting to come out of my shell, but I don't know if I'll ever be my 'old self' again in that regard. -Poppy

Yes, I used to go skipping thru life, thinking that nothing bad would happen to ME. Then WHAM! Now, I am scared that someone will steal Charlie and kill him, or that Chuck will die at work, or that my mom or dad will die or people close to me will be killed or die in an accident. Whenever someone is just a bit late for something, the worst thoughts rush into my head! And until I see that person, I am frozen in fear that they are horribly mangled somewhere in an accident. -Stephanie

Q: If you had the opportunity to share with someone who has not lost a child and could not possibly understand the pain and grief we are going through. What would you say??

Answers:

In the beginning i was really forceful trying to get people to understand this loss, this pain. Now I surround myself only with people who I don't have to explain. And even when I am around people who have never experienced this I don't say anything. There are just some people who don't deserve to know me, to know my truimphs, my heartbreaks. And if they want to know, let them read a book. I had to. -Angie

Losing a child is the most tragic of losses.  Grief never leaves and time doesn't heal the wounds.  I learn to live and adapt to life and bereavement without Charles physically here.  I will always miss Charles.  I will forever love him.  And I will continually keep his memory alive within my heart and soul.  -Katie

I don't know.  I guess the best you can do is speak your truth.  Sometimes people hear it.  Sometimes they don't.  I have shared our experience with many people who haven't lost a child themselves, and they get it.  But usually, they've lost someone or understand being lonely till your heart breaks.  Then there are others who are like, "uh, okay, well, that was five years ago, so why would you even be talking about this now?"  It's like they don't get how the feelings travel with us.  They don't understand that grief is like laughter --  just like I could laugh at a good joke five years ago and still can today -- so too can I ache for my son, then and now.  But they don't get it. -Kara

You, know, I don't know.  I would tend to say they weren't worth talking to about it.  I don't think you can ever make someone understand how it feels.  I don't even think you can make someone have more sensitivity or sympathy.  I have tried to tell family and friends over and over the things that they say that don't particularly help and the things they say that do.  When it comes right down to it, it's hard to do the right thing.  It's hard to talk about a dead child (which helps), it's tough to acknowledge someone else's pain when it makes you uncomfortable.  It's hard to put someone else's feelings in front of your own.  -Mel

Even though I have never lost a limb, I equate the loss of a child to that sometimes.  Except it's not a limb you lose, it's part of your heart and your soul.  It never grows back and the void is always there.  As time goes by, you learn to function without it, but you're never the same again.  -Poppy

I have had this opportunity, at our local MOPS group. (mothers of preschoolers) On Oct 15th, I got up in front of the group and announced that it was pregnancy and infant loss awareness day, and I told them of Amanda Joy and how hard it was. And I asked them to remember her with me, for just that one day. Afterwards, several gals came up to me, and said that it was great that I was brave enough to do that. I am hoping it opened a door, that some of them who have also suffered losses, may come to me for support and care. But for those of them who were blessed, I hope it makes them appreciate their children more. -Stephanie

Q: Did you feel that your child knew they were going to die, or maybe you knew it subconsiously. Did you feel that you were some how "prepared"?

Answers:

No.... -Angie

I was totally unprepared.  I felt as if my vehicle crashed into a brick wall head on at 100 miles per hour with me being blind folded in the driver's seat.  My life forever changed in that split, second when I hit that wall.  -Katie

Yes, I knew it.  Well, not consciously exactly.  But it had been 24 hours since my son had moved inutero.  I got up in the wee hours and made dark black tea and decided I would make him move.  He didn't.  At that point, I sat on the couch and cried.  I pictured the next day at the doctor's office.  I knew I would refuse to birth him and would demand a c-section.  I knew.  But I don't think it prepared me at all.  When the next day came, I was fully shocked that it was really happening.  The night before, the darkness, the moon, had left me somewhat disconnected from it all.  Like I was seeing it, but not part of it yet.  But when the morning came and we were in the doctor's office and she said, "kara your baby is dead", suddenly I was whooshed into the scene.  Part of me died there that day. -Kara

This is a very scary question.  Throughout my preg. with Lily I was not very "connected" if that makes any sense.  It made me uncomfortable when people talked about it and when i picked out her name I subconsciously picked a dead woman's name (Harry Potter's mom).  I mean, i'm sure it was a little conscious but still.  However, I wasn't prepared for her death.  I never imagined her death.  When they told me, I was shocked and devastated.  I guess hindsight is 20/20.  maybe all those things were just little coincidences but maybe not.  I have never been a person who was very strong with intuition. -Mel

With Amanda Joy, I had no clue. But with Baby Bean, my miscarriage, I did. From the moment I found out I was pregnant, I couldn't just relax and be happy. I wasn't puking sick and that worried me. To me, a healthy pregnancy is a very sick first trimester. And I just felt that it wouldn't be a good pregnancy until I started throwing up. Of course I never did, and I lost the baby. And afterwards, looking back, I think I was preparing myself for the loss, by not becoming attached to the baby. Somehow I just KNEW that all was not well! -Stephanie

Q: Were you always the strong friend?  There when others needed you. How did people react after you lost your child? How did you react to them? Was it hard being in the helpless role if you were (before) always the strong one?

Answers:

I was always the more stable friend. When that role changed i lost my friends. -Angie

I've always been told that I'm the strong one.  I've always been there for my friends.  However, when I lost Charles I felt abandoned by these same friends that I had helped in the past.  Clueless friends would tell me that I was young and could have other children.  Some would tell me it was meant to be.  Some just stayed away and avoided me like the plague.  I tried to explain my sorrow, but they did not understand.  They abandoned me and I gave up on them.  I did feel helpless, but I also formed new friendships with other bereaved parents that did understand.  I didn't feel so helpless when I found understanding from the care and support of others.  -Katie

Ha, ha, very funny.  Yeah.  Why the hell else would I go straight from c-section surgery and the memorial service to writing and publishing books and zines and doing outreach.  I couldn't stand being helpless.  I sought to learn as much as possible about it all.  We lost our son in the Spring.  We had created the company KotaPress by the Fall.  I think some people saw me go right back to work and creation and so they thought we'd be "over it" and "have closure" soon.  But in my heart I knew that starting KotaPress and doing this work, would give me a lifetime of saying my son's name outloud, of evolving to learn to life without him yet with him, and that it would make my parenthood as tangible as is possible in this physical world where normally "seeing is believing" -- if that all makes sense. -Kara

I have most of my life been the strong one because I am an oldest child.  I have 4 younger siblings and my parents divorced when I was 13.  I wouldn't say I was that person with my friends but I have never been very "open" about problems or feelings.  I would much rather listen than share.  It is still difficult to feel the need to be helped and it probably explains much of why i still have a ton of work to do.  I think leaning on people and asking for help is valuable but it is not a skill that I do very well. -Mel

Yes, I was always the strong friend, always there and ready to help when someone needed me.  I had many 'speechless' reactions.  The best they could do was give me a sympathetic look and hold my hand or give me a hug.  I found that comforting because there's really nothing they could've said that would've made me feel better anyway.  Just knowing they were there and that they cared was enough.  My in-laws reaction was different when we saw them several days later, but I was still in the *numb* phase and wasn't too terribly bothered by their ignorant responses.  It makes me upset to think of it now though.  -Poppy

Yes, I have always been the stong, level headed friend. The calm one who re-assures others that it is all going to be ok! After Amanda died, everyone came to my "rescue" with food and bible verses and comfort and care and love. I felt smothered. But I just sat there and took it. I didn't know what else to do. When Baby Bean died, just a couple of my friends even knew I was pregnant, but they came to the ER with me and held my hand as the Dr. told me I was losing the baby and there was no hope, they cried with me and held me as I collapsed. One friends hubby came and took Charlie that am and they kept him the whole day. It was super hard being the "helpless" friend. I felt like such a fool, crying and not knowing what to do next, so encompassed by my grief. I felt like I was lost and stupid for getting lost. But now, looking back, I am glad that my friends were there for me!!! -Stephanie

Q: How has the death of your child affected the way you moved through the holiday season?

Answers:

We continued our family traditions-- Advent, decorating, church  etc as we always have but this yr we had Madison in our thoughts as we moved thru all of these things wishing she was with us physically. -Heather

I'm four years into my grief, and I just make the best out of each day especially the holidays.  I allow myself to cry and feel however I want to feel whenever I feel like shedding tears or whatever.  Knowing that Charles is with me in spirit keeps me going on a daily basis.   -Katie

This was our second Christmas without Raeyn, the first was a blur as she was born into Heaven on November 9th, 2002. It was very emotional trying to include her in any and every part of our holiday
celebration. I hung stockings this year, one for all of us and it was just so sad to me that I knew she would not be with us to enjoy our celebration. In addition, we tried to include our sub. baby as he's
due soon, so he had a stocking too. I had mixed feelings about being able to celebrate with him and not my daughter. -Keny

It seemed that the way that I felt was uncontrollable during the holidays.  Most of the time I wanted to do the normal things and  be happy and participate but my body and my mind simply wouldn't let me.  Of course I wanted robbie and jake to enjoy christmas and to remember their sister.  the things we did just us, as a family, were warm and comforting.  it was the extended family stuff that was horrid. -Mel

 

Q: During the holidays did you do anything special to honor your child's memory and/or to include him/her as part of a larger family celebration or gathering?  If so, what did you do?

Answers:

My Mom and I hang a stocking for Charles every year and place little love notes inside of it.  I also purchase an angel ornament to add to the collection of angels that rest around his urn in my room.  I consider my holidays to start in October, because that is Infant Loss Awareness month.  I participate in the annual Walk to Remember memorial program and balloon release through a local hospital.  November is extra special, because it's Charles' birthday anniversary.  Thanksgiving used to be quite depressing for the first two years of my loss; however, now I use that day as a time of reflection.  I find thanks in the small things and big things in life, like the amazing support I've received from wonderful friends that are also bereaved parents.  The more I move forward with my grief, the more enjoyable Christmas and other holidays have become once again for me.  I never thought I'd enjoy Christmas again.  The past two years have been very nice in that regard.  I still have my good days with my bad moments and vise versa, but I'm a survivor and I'm doing okay. -Katie

yes, we decorated at her grave site-- she had a tree and a wreath complete with babies 1st Christmas ornaments.  We got special ornaments for the tree.  She had gifts under the tree and we included her name on our holiday cards.  We also donated toys for Toys for Tots in her memory. -Heather

Again, I hung a stocking for her,we lit a candle and bought her a bouquet of flowers to represent her at our dinner table. It's amazing too...the flowers are still alive today. -Keny

Yes, Rob and I both purchased gifts for Lily that were meaningful for us.  We also bought a Baby's First Christmas ornament for her.  Much of our family also did something special to remember her.  -Mel

Q: We all know that grief changes over time.  If you had to really look at what your first bereaved week was like compared to today (regardless of how far out from the date of death you are), what could you say about how grief has changed for you?

Answers:

I've learned to grow with my grief and learn from it.  The first week felt like life was over for good.  It was dark, cold and very lonely.  I feel much more warmth now and see much more light.  I never thought I'd see the day where I would find more sun than rain.  Grief was more like an enemy during that first week, now grief is more like a life long partner. -Katie

The first week, month, months went by in sort of slowmotion, I felt everything but I felt nothing. I was so consumed with such raw and varied emotions that I couldn't control. I didn't know what to do with or how to deal with my pain. It was draining. Now I feel that my pain hasn't left, but it's mostly bearable...I'm able to control my emotions to some  extent and I'mabale to see now that Raeyn's life had/has a purpose, that she lives through me and that I will see my angel baby again one day. -Keny

The first week I was numb and just went thru the motions of everything. I honestly don't know how things got done.  The grief will always be there but I have had a 9 month look at things and with lots of help, prayer etc. I do find joy in my heart that my daughter is in heaven.  This does not mean that I don't wish she was here with me. I wish she was every day.  My grief has been tripled with the loss of my Dad in Sept and my Grandma in Oct.  All 3 within 6 months has been so hard to deal with. -Heather

My son passed away nearly two years ago, and there are times when I still feel like nothing at all has changed. I can say, however, that from the first week - maybe even the first month or year - I was entirely numb. I was aware of my loss, of course, but it really didn't feel like it effected me.  Now, I feel.  I feel the pain of his loss, the emptiness of my home, the insensitivity of others - and it's really a rather miserable existance.  but I also feel greatful for the moments I had with him, joyful at the thought of a future time when we might be together, and appreciative of the things of his that I have. -Josie

Grief has changed in that it is much more overwhelming how than it was then.  At the beginning I was doing everything I could to run from the pain and loss.  I was also very very very full of guilt and blame toward myself and my body.  I hated myself and was very angry at myself.  These feelings prevented me from really dealing with loss -- People say to turn and face the pain -- that it is the only way through it but I think that is a very very very difficult thing to learn to do.  I am much better at finding ways to escape.  So I am trying to learn to change grief from being about me to being about how I feel about living without Lily. -Mel

Q: If money and time and schedules and other people were of no concern :)  what is the one thing you would most like to do on this earth before you die? 

Answers:

I'd like to make a difference in my future children's lives and in the lives of other people's children that I help.  -Katie

I'd like to cahnge laws and opinions of people who are on the outside looking in. I'd like for the world to acknowledge all of our children whether 1 week gestation or 3 years old. I'd like for parents to have access to resources, be it emotional or financial, without the political b.s. -Keny

I would like to own and run a women's shelter, training program that would teach parenting, cooking, crafts, job skills, health care, to disadvantaged women as well as community leaders. -Mel

Q: Are you able to tell other people how you really and truly feel on any given day?  If no, why not?

Answers:

Yes, and sometimes I feel like they get sick of hearing it...LOL!  I am not shy to express my feelings to anyone. -Katie

It depends on the person but there have been occasions where I have let my guard down and let it flow out and I am sure there will be many more. -Heather   

Absolutely not.  I don't even tell other greiving parents how I feel.  I am ashamed at myself for being the way I am and feeling the way I feel. -Josie

Yes, usually. Sometimes, depending on the topic I may shy away if I feel unable to debate the topic. -Keny

Nope.  I'm a big fat liar to most people -- even my closest family and friends.  Why???  Because I'm deficient in being able to trust people with my emotions.  I expect too much and am crushed by disappointment so I'd rather just keep it to myself.  This is not helpful -- and I am trying to change -- plus it's a really bad example to my boys.

 

We'll have more Q & A next month...

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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