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

In Honor and Loving Memory of Our Children

Editor's Intro:
The creator of this Grief Journey Q & A was Stephanie Marrotek; the current coordinator is Poppy Hullings who posts questions once a day or week or month and invites all members of our online discussion & support group to post answers. Some answer only to the group, some members have elected to share their insights in a more public way through this column as well. 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: After the death of your child, what, if anything, did you discover about yourself that you might not have otherwise?  Or what have you accomplished that you might not have otherwise?

Answers:

Poppy: I rediscovered my passion for poetry and for writing.  I have been published, won a few contests and I even have my own chapbook of poetry.  All of which, I believe, might not have ever happened had my grief journey not lead me to a pen and paper.   

Shannon: It probably didn't surprise anyone for me to take an interest in politics. I've always been pretty opinionated and I've always believed in the peoples need to be involved in government.

But it had to be somewhat of a jolt to see me thrust into politics so quickly. It wasn't quickly, it was 3 years coming, but when the law protecting other parents from what happened to us really began to take shape it was a quick sled right to the bottom of a very scary hill.

We were blessed with a very helpful state senator and staff and I had made some political friends in the previous 2 years that were able to iron out some of my own wrinkles which made me look better.

I was aware these problems existed in other states before it happened to us, and had briefly considered researching it in our state. But barely had that thought begun before this happened to us, and I think that nothing would ever have been done had it not happened to us.

Melanie: I'm pretty sure that I discovered some stuff about myself when Lily died. 
1.  I have an anger management problem.  I have no clue what healthy anger expression is and no clue how to apply the principles of healthy anger management to my life.
2.  I may have been the most naive, clueless person I know -- I really thought that tragedy of that magnitude could not happen to me.
3.  I learned that my faith in God(dess) is certainly different than I thought it was.  I hesitate to say stronger/weaker but it's definitely different.
4.  I have felt like a lousy parent every day of my life since Lily died.  That's not such a good thing.
5.  I have learned that there are sooooooo many people that are worth knowing and sooooooooooooooo many people who are not worth my time or energy.
6.  I have learned how incredibly weak I am and how incredibly overrated strength is. 
7.  I have found that the feeling of walking around everyday with intense pain was enough to make me want to die and still is.

Kara:  Such an interesting question.  I was definitely on a snooty academic track where the poets are on this insular merry go round of how they make a living, get published, and perpetuate the academic myths. 

When my son died and I wrote all this grief material, the academic world I knew was not interested at all in my "emotional" works.  And yet I knew that, not only was this the most honest work I had ever done, but it was also soooooooooooooooooooooo needed in the world.  Needed, precisely because the snotty academic presses weren't even looking at poetry therapy or the value of "emotional" works. 

So we started KotaPress our damn selves and started putting the works out into the world.  And I've tried along the way to help others figure out how to put their stuff out into the world without relying on that academic world that doesn't give a crap until they can make money off it.  I'm only slightly cynical, can you tell?

Anyway, I think before Dakota died, I was very caught up in the appearance of being a writer and a "worthy" academic, etc.  I was very caught up in the world of "women".  When he died, I discovered the world of expression -- something everyone has a right to regardless of whether or not they can afford the affluence of academia.  And I discovered the world of PEOPLE where both men and women experience things like love, loss, grief, joy, sharing, isolation, etc. -- as people, not as genders. 

So I guess death broke down wall for me.  Showed me that there isn't time for the bullshit that segregates people for whatever reason.  We are all going to be dead soon enough.  Why not find out as much about life as possible instead of putting barriers up to limit this person or that person for them to do this or that, etc.  If any of that makes sense at all...

Katie:  I rediscovered something that I originally discovered when I lost my brother in 1992.  For some reason in the hecticness of life and in my younger years of growing up, I forgot or maybe not forget but I put these little discoveries in the back of my mind without much thought.  I rediscovered the importance of life, love and heartache.  I realized once again how suddenly life can end without warning.  I was reminded how important it is to live each day as if it is my last.  I was reminded to enjoy the simple things in life...knowing the difference of what is and what is not important.  I realized the power of love isn't measured by time.  The power of love is a gift that can happen in less then a millasecond and last for eternity.  My accomplishments I credit my Son for in helping me reach my potential.  Whether he lived or not, I would still credit my Son.  I rediscovered my love for volunteerism after I gave birth to Charles.  I've remained active in three wonderful organizations since his stillbirth.  I also went back to school to work towards my goal for a career in child advocacy.  Without his loving spirit, I'm not sure if these discoveries and accomplishments would have come to me so soon.

Q: Can you name at least one thing that reminds you of your missing angel(s) and why?  It can be anything you see, smell, hear, taste or touch.

Answers:

Christine: Rainbows remind me of Nora. When I first found out I was pregnant, we saw a double rainbow and the night before she died, I saw a triple rainbow. And oddly enough, we had picked out Noah's Ark for her nursery which of course has the rainbow as part of its biblical meaning... rainbows definitely remind me of Nora.

Melanie: The smell of lilies reminds me very much of Lily's funeral and of her death because she was born/died very near Easter and because her name was Lily, many people sent lilies and her gravesite was covered with them.  My friend, Kara, from college also sent me a huge bunch of white lilies that had the spiciest, strongest lily smell and they lived for a long time after the funeral.  My house was so small then that it seemed that the smell was taking over. Nighttime also is a big reminder of Lily because she died in the middle of the night.  So part of me wishes night would come faster everyday but another part of me must dread it because I still wake up at the time when she died almost every night.  The night she died, I thought I just felt the hardest kick ever and I thought my water broke but later the Doc told me she was having a seizure because my placenta had detached and she wasn't getting any oxygen.  I guess I am blessed/and cursed that we decided her name would be Lily a long time before she was born.  Now I can't see a picture of a lily without thinking of her.  I am glad that we named her something that has a tangible presence because it makes it easier for me to commemorate her in my life.  We have so many pics of lilies and lilies planted outdoors.  Of course, every little girl I see makes me think of her.  Probably because I have little boys. 

Kara:  Weird things.  Usually it is Dakota's name coming up somewhere.  Like recently Katie was looking at blue prints for houses and discovered that the one she liked best was called what?  Dakota.  Sometimes, it is reading a verse and really liking it -- then discovering it is from the Dakota tribe verses.  Sometimes it is pulling into a parking space -- the only space available out of thousands in a parking garage or mall lot -- and the car next to us is a Dakota.  Driving up north toward Neah Bay and pulling into a park where there is a boulder that has DAKOTA spray painted across it.  Hiking up to Paradise at Mt. Rainier and finding the word DAKOTA written in the snow bank.  I guess I could chalk all of these occurrences up to "coincidence" -- but that feels like ignoring the bricks that are falling on my head.  Or like I'm ignoring the subtle energies of this world -- ignoring the magic or the Spirit or the unknown or something.  ??  Anyway.  It is his name that seems to show up everywhere.

Katie:  Butterflies remind me of Charles, because every year on his birthday anniversary, November 6th, a single butterfly manages to find it's way to me in the late autunm climate in Indiana.  I feel the butterfly's visit is a little heavenly gift from Charles letting me know that he is okay and is with me always in heart, soul and spirit. 

Q: Here in the KotaPress Discussion group, we've talked about how pregnancy books should include a chapter on what to do (or not to do) if a pregnancy ends in miscarriage or stillbirth.  What are the three most important points you think this chapter should cover (granted there ever is one)?

Answers:

Poppy:
1.  Give documented research and personal accounts of the positive and negative effects of seeing and holding stillborn babies so that parents can make a well-informed choice.

2.  Inform the parents of ALL their rights in regards to miscarriage and stillbirth.  Since laws and such may vary in each state and county, every hospital should go a step further and have up-to-date pamphlets to give bereaved parents. 

3.  List several resources where a bereaved parent can get more information and support.

Katie:
Point # One:  There is no time line for grief. 

Point # two:  How to care for yourself in the first year of grief with lists of support organizations to contact for bereavement care and support. 

Point # three:  How family and friends can offer support after a loss. 

Kara:
1) Encourage people to admit they are afraid of death and to tell their healthcare provider that they fear seeing their child after they've been born because death scares them.  This way the healthcare folks around them -- the midwife, the nurses, the doulas, the doctors, whoever -- can help them to work through the fear and create a beauty around the connection between parent and child.  

2) Encourage people to ask questions about how long they can have their child, can they bathe and dress their child, can they take their child home and then to the furneral home themsevles -- and if they can take their child from the hospital with them, then what is the follow up care offered to facilitate them through the process of hospital, home, funeral or whatever they decide.

3) Ask to see films like Losing Layla or Some Babies Die -- ask to see them in the hospital, with the healthcare provider sitting next to them, and see them before signing any paperwork.  Ask to see these films so you can see what some of your options might be after your child has died.  If you are scared to see them because you fear death and what it might look like, admit that and ask your healthcare provider to work through it with you.

Sonya:
[This] question...really got to me.  Here in New Zealand we have 4 million people (one small city for most countries) and the process for parents is quite ingrained here, as far as the hospital staff being fully aware of the options parents have after they lose their baby. 

In most hospital/maternitys they hold Moses Baskets (government funded from Lotteries mostly) with a booklet with all the options like handprints/footprints/hair, camera, gown and options like autopsy/the funeral directors/taking baby home.  All women in New Zealand get a book when they go for their first pre-natal visit which includes a section on miscarriage/stillbirth.  But the problem for me was I wasn't in the space to remember this chapter because when I read the book "It was never going to happen to me".  So I took no notice and then when it did happen, I didn't care about books. 

I feel we are sometimes an overbearingly politically correct little country (no nukes, hate GE), but feel it also means we are very enlightened when it comes to things like death.  I think a big reason is we are a bi-cultural country with the indigenous people Maori having an open approach to dying with a "tangi", open casket, in the meeting house on a marae, all the family from all over the country gets together whenever a baby of any age is lost they are a member of the wider 'whanau' or family, so it is their send off to the spirit world if you like.  I even know of a family member who had to terminate having a tangi and burial. 

So it is very much becoming a part of the culture of the whole country within all the different groups of people who make up our country. We had Kali at home for three days after we got her back from the Coroner.  I am half Maori which meant the family came from all over the country, to the dissapointment of family I chose not to go to the marae because my partner didn't want to so we put mattresses on the floor of the living room and all 50 of us slept together for the three days before the funeral with Kali in the middle by us.

After all that, I think all I am trying to say is my preference in a perfect world is that all parents/family who lose a baby automatically get these precious things like a Moses Basket, a box for precious memories Poppy talks of and all the necessary information, booklet, contacts for peer support for them to make informed decisions.  And instituting a Protocol of sorts for all healthcare workers to know what to do and what not to do.  I just keep coming back to the "It's never going to happen to me" syndrome of most people and as the event happens quickly usually, making this chapter that "must be given to all parents who suffer a loss" type chapter/booklet instead would make a lot of sense.  I wonder if the UN would vote unanimously for that?

Q: What have you learned since your loss about life? This is ever changing, but this is a "so far" thing.

Answers:

Melanie: This is ever changing, but this is a "so far" thing. I have learned that "life" is so much different than I thought it was.  I am not owed happiness or success.  Things will and have happened to me that I don't "deserve" or that I didn't "earn" and I have little control over these things.  In a more gaggy, syrupy answer -- I have learned in my head that each moment is to be at least acknowledged -- and in the best of circumstances -- treasured and loved, because that's what "life" is about.  Now, whether or not I actually do that is a very different story.  Achievement, success, etc. are not as highly valued in my life now.  At least in the ways they were before.

Q: How do you handle people who say to "get over it" these days?

Answers:

Kara: Depends on my energy level.  If I have the energy, I'll launch right in there with the lesson plan to try and raise awareness (which doesn't always work).  If I don't have the energy, I walk away.  I might do one of those half insane, really weird smilie faces, like a grin that says I might be insane, and then walk away.  It's sad but that weird face is sort of throwing the twisted energy back at them.  Freaks people out.  Amuses me in a sick and twisted way.  I know I know.  That's messed up.  But there's the truth of it.

Melanie: You know, no one recently has given me that crappy attitude but I'm sure once this baby comes (dead or alive) I'll be given some sort of, gawd, isn't she over that yet, crap and I'll have to say -- go to hell.    really.  i'm pretty much at that point and have been since christmas.  if someone wants to test me on it again -- i'll tell them.  go to hell.  i'll talk about my daughter when and where i want. 

Q: Do you think people are generally for you or against you in your grief??

Answers:

Kara: Us or them, aye?  I don't think anymore that it is this personal -- it isn't about me or my grief.  It is about the other person and their fear or lack of fear about grief & death.  And generally, people fear grief and death.  So they don't understand my life, my work, my passion.  And, yes, I used to think that made them "against me".  But really it is them against their own demons.  I really try to do the "rock" exercise -- you know, I carry a rock in my pocket.  When something comes up, I take the rock out.  I look at it.  I look at them.  And I say, "Oh, no, see, this here, this is my rock.  That issue you just brought up, that is your rock.  And I don't have room in my pockets for your rock.  Thanks anyway."  And RUN away :)

Melanie: i think that the worst part is people 'think' they're for you so they're all self-righteous about their "for you"ness" but really they're against you because they can't see past their own noses.

Q: What would you like to see done because of what you've gone through/are still going through...3 things??

Answers:

Kara: Tacoma General Hospital has a WALL in public view that lists the names of every baby born there.  Added to everyday.  Where are the names of the miscarried and stillborn?  Not on that wall.  I'd like to see a wall in every hospital that honors the names of the children who have died there -- all of them, regardless of age or cause.  The marketing department would hate that, but phuck them. a family advocate on call at every hospital, birthing center, or home birth... a *trained-in-bereavement-advocacy* family advocate. safe houses in every city, that are well funded and kept, where there are family advocates on staff, grief materials always available, play rooms for siblings, warm water for tea, a place where community members who "get it" could volunteer to offer services like music therapy, henna arts, or other alternative, expressive therapies for bereaved families. 

Melanie: i would like to see death, in general, demystified in our society.  i would like to see families (especially mine) be more open to getting into other people's buckets instead of pouring theirs in. I would like to see myself be able to take my rock out of my pocket, look at it, stroke it, and then take the pile of rocks that other people hand me out of the backpack on my back and throw them at them.  figuratively, of course.

Q: What has this taught you about your family?

Answers:

Kara: Family is not about blood.  Family is what we create.  Family is the people we WANT to gather around us.  Family is others who are gentle, who are willing to listen and be still, who will throw rocks with you when you feel like crap, who will send you little emails five years later to say "you are still dakota's mommy", who might be blood related, but many aren't blood related.   And that whole notion of blood family being soooooooo important that you put up with them "not getting it" or talking about you or telling you that you are crazy or refusing to acknowledge ALL your kids -- well, I've come to realize that if i embrace the belief that they are soooo important that I must put up with all that, then I am CHOOSING to submit myself to that abuse.  And it is abuse.  Neglect of who I really am.  Fake bonding because they don't know me and I certainly don't care who they are anymore.  And if I put up with it -- if I CHOOSE to put myself in the middle of an event where these people will be -- then I do it fully knowing that I CHOSE to be there and I can CHOOSE to leave any time.  I am worth more than abuse.  I am worth honesty, understanding, sensitivity, relationships built on mutual respect.  And more than "me", my kid is worth that respect.

Melanie: My little family, meaning rob and i and robbie and jake and lily and this baby are ok.  i mean, we're not great, but we're okay.  we're kind of like stringy strong.  i mean, not oak strong or owl wise but kind of like , hanging on strong.  and that's ok, for now i guess. my extended family is all sorts of fucked up *excuse the language please, it was the most appropriate word*  and they were before my loss and they will be until the end of time, i'm sure.  difference is that now i'm not going to put up with their rocks.  at least i'm going to try.

Q: What has helped you as you go through this?

Answers:

Kara: ALL OF YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  If I didn't have the sounding board of other bereaved parents, I would have driven into the Sound a very long time ago.

Melanie: People here have helped me.  books have helped me.  other, more self-destructive things have helped me make it through minutes or hours, like cutting or drinking or "escaping."  looking at pictures of other dead babies has helped me.  having a funeral for lily helped me.  having a headstone helps me.  being able to help other people helps me.  i mean, not like on a wide scale but little things.  sending a card to an acquaintance i know had a loss or making sure a friend who miscarries is taken care of, those kinds of things.  writing has helped me.  but mostly reading.  frankly, not one therapist has truly helped me and i don't think the anti-depressants did a damn bit of good.  but who knows?

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.