In Repose Blog

"I Don't Know What to Say."

Bet you've heard that one before.

One of the driving forces that keeps me writing for In Repose is the memory of other people's reactions after my brother's death. I used to think that one day I might write a book titled the way this post is titled. That was long before blogs existed.

I lost people who I thought were my friends during the time my family was grieving. My relationship with my real friends deepened. There really are things one should say, and things one should not say.

One of the very best pieces of writing I have ever read on the subject, and I have read a lot, was a recent blog article written by Carrie Stuckmann at Candid Carrie. Want to know what to say? What NOT to say? What to offer to do? What means the most to a person sick with grief? Carrie's article is the most heartfelt, concise and helpful information I have ever come across. If nothing else, bookmark this link and read it later. You WILL need to read it, because someday soon, someone you love will lose someone THEY love, and then you WILL indeed, know what to say.

Three Rules

When my husband first went in to the military years ago, his father shared with him these three rules:

1. Never pass up the opportunity to keep your mouth shut.
2. If you have something important to say, say it.
3. Do not confuse rule one with rule two.

Wise words and excellent advice.

I started thinking about these rules as I was at my infant bereavement photography session on Sunday morning. The mother wanted to put on a blouse for her photographs rather than have images captured with her wearing her hospital gown. The main photographer and the clergy person and the father, and I stepped out into the hallway for a few minutes.

The clergy person happened to recognize the photographer from a previous informational seminar about our organization, Now I Lay Me Down to Sleep. From the gist of the conversation, I gathered part of that seminar was a few photography tips given to non-professionals to help them take keepsake photos in difficult situations if a professional was not available.

The clergy person said those tips came in handy for him and proceeded to begin to recall a truly terrible story about a pregnant mother who was in a car accident. I will of course spare you these details. (Refer here to rule "one")

Remember, the father of the baby who had just died that morning, was standing right there. My stomach began knotting up.

I started thinking about the three rules. I started wondering what kind of professional trauma or grief training this person received.

After about two sentences about the other woman's child,  I interrupted the clergy person's story, loudly and forcefully by stating: "I do a lot of horse photography." I started talking about the rodeo and cowboys and where I get to stand at the stadium.

The father managed a weak smile and mentioned he used to care for horses in his younger days.

Blurting out the fact that I photograph horses probably doesn't quite qualify for the pure observance of rule 2, but the violation of rule 1 by the clergy person required immediate action and in a hurry.

Its all about empathy I think.

No one, not the doctor, the nurses, the family, the clergy person, the photographer....no one should do or say a thing around these people without first imagining that they were standing in the shoes of these poor people who a few days ago were excited parents-to-be, and who now were in shock, holding a very still and non-breathing bundle in their arms.

In this situation, and in life, we would all do well to remember these rules.

Now I Lay Me Down To Sleep

I am most pleased to announce that my application to volunteer for the organization, Now I Lay Me Down to Sleep, was approved yesterday.

Those of you who know me well, know that I had two high risk pregnancies.  I spent many months hospitalized, bedridden and terrified. Twice. At one point when I was 26 weeks along with my son, I thought we both were going to die. In the end, I gave birth to two completely normal children, at 37 and 36 weeks gestation. These experiences changed my life. They have also left me beyond grateful. My children were born perfectly healthy and normal. They are both beautiful and kind and accomplished, intelligent young adults.

What more could a parent want?

I have decided I am in a unique position to offer my photographic services to others not as fortunate.

     This nationwide non-profit organization that  aims to help parents who lose babies in early infancy has expanded its services.  In order to help families heal, Now I Lay Me Down To Sleep provides parents with heirloom photographs and DVDs of their infants free of charge. NILMDTS cofounders Cheryl Haggard and Sandy “Sam” Puc’ want families across the country to know that there are now 2000 photographers nationwide willing to volunteer their services, and that number is growing each week.

     Now I Lay Me Down to Sleep (NILMDTS) was founded after Cheryl and her husband Mike made the heartbreaking decision to take their six-day-old son, Maddux, off of life support on Feb. 10, 2005.  Knowing they wanted to remember their baby through photographs, Mike called Sandy’s company, Expressions Photography, after seeing her portraits of babies displayed at Presbyterian/St. Luke’s Hospital in Denver.  Sandy and her staff gently accommodated the Haggards’ request that photos be taken both before and after baby Maddux’s respirator was removed.  The remarkably distinctive photographs and extraordinary DVD set to music created by Sandy filled Cheryl with a sense of peace and pride.  Almost immediately, she knew she wanted to help provide other grieving parents with the same types of precious memories that are helping her heal.  The experience proved to be a profound one for Sandy as well.  She and Cheryl co-founded NILMDTS on April 8, 2005, exactly one month before Mother’s Day.

      “The purpose of Now I Lay Me Down to Sleep is to connect families experiencing an early infant loss with photographers throughout the nation,” said Cheryl.  “Calling a photographer to take pictures of a dying baby is the last thing most parents think of during such a traumatic and confusing time.  Since Maddux was our fourth child, we knew we wanted to remember him through photographs.”

     “Having those precious photos and DVD brought us a sense of closure,” she added.  “This organization comes from our hearts and our experiences, in the hope that other families will find a shorter path through heartache to healing.”

     Sandy said photographers from all over the nation, and several from other countries, are volunteering their services because they understand the power of the memories they create.

     “When there’s a hurricane or a fire, what is the one thing besides their children that people try to save?” she asked.  “Their photos.”

     “When a family loses a baby, their bodies and their minds are in shock.  They can barely remember the experience.  But with these photos, they can go back and really look at their babies--their faces, their hands, their toes.  They can see who the baby looks like.  It takes away some of the pain.”

     “Photographers who have taken pictures of these babies tell us it’s the hardest, most difficult thing they’ve ever done,” she added.  “Yet when they turn those images over to the families, they are never more proud.  Those images will last forever.”

      NILMDTS volunteer photographers will visit interested parents at any hospital in the photographer’s general vicinity (listed on the web site), providing a printable CD file of the images, plus a DVD set to music, free of charge.  Tax-deductible donations may be sent to Now I Lay Me Down To Sleep, 1153 Bergen Parkway, #M103, Evergreen, CO 80439. 

 Now I Lay Me Down to Sleep

8 Things in the Back of my Closet

I got tagged for a meme by Lauren of  Can you be a Part of My Life? . I'm not going to tag anyone else, but I'll play along.

1. Ironing board. I hate to iron. It can stay there.
2. A few stuffed animals of my children's that I can't bear to part with.
3. A beautiful velvet riding helmet I bought in Germany but don't use. I bought it before the slim, light helmets were out and I look like a bobblehead if I put it on.
4. A basket of scarves and little evening bags. Neither of which get much use anymore.
5. Some vintage dresses that were vintage to ME when I bought them 20 years ago.
6. Some vintage shoes that I saved for my daughter whose feet ended up a size larger than mine.
7. A box of old letters. A real treasure since so few people actually put pen to paper anymore.
8. But the most important thing in my closet is a box of my brother Randy's last effects. I have his wallet, his eyeglasses, some letters and other items that I am only brave enough to hold and touch and smell a few times a year.

One item in that box that remains so special, so sweet, and so my brother Randy is this envelope I found in his desk when I was cleaning out his apartment after his death:

That's his handwriting and inside are four beautiful white whiskers from his cat "BC".

My brother would have turned 45 years old this coming Wednesday had he not been mowed over by a reckless one-eyed teenage maniac 19 years ago.

Grief does soften a bit over time. It has to, so that people can keep living. But it does not ever, ever go away.

I miss you Randy.

John Lennon Died 27 Years ago Today

I think John would have been OK about being our little rat boy's namesake. After all, our Lennon was sweet, wise, courageous and fun to be around.

Both of them died suddenly and before their time. John's death affected the world. Lennon's death affected my and Lauren's world.

Yoko Ono writes a letter to John and you can view some video of him by clicking on the link below.

Imaginepeace.com

The Replay

So I have been doing it.

Replaying the day Lennon died.  Over and over again, going over every detail. I try to stop, try to think about something else, but the memory of his little warm furry self sneaks in and I start the replay again, countless times during the day. I don't want to do this. I don't. But I am very good at it.

When my brother was killed in 1989 I remember the "replay" thing being perhaps the most surprising and hardest part of the shock and grief to deal with. The replay of the words, all the scenes of the event; the crash site, the people coming to the house, over and over. Over and over and over again, at all times during the day and even at night during my sleep. I could not stop the thoughts no matter what I did, no matter how hard I tried.

I replayed what it was like to be told the news; what Randy's last moments must have been like. What the policeman said to my father. (Boy is there a future post in that little detail) What it was like standing in the kitchen with my family, suddenly only numbering three, when just an hour before there were four of us.

I have been doing the same replay thing with Lennon.

I DID, I did take him back inside the clinic after checking out and starting the truck, I replay that particular scene a lot, probably to try to beat my guilty heart down.  I pulled back into my parking space and walked right back in to the vet's office and said "Something is not right with Lennon."  I was positive something was not right. But I was assured by the staff his behavior was consistent with being post-op.

I do wish I would have been belligerent and insisted on a re-examination by the vet. No matter it was Friday at closing time. But she couldn't even come out of the back room (She had already begun another surgery)  I am not sure anything could have been done additionally for him (I have yet to have a direct conversation with the vet, we keep missing each other's phone calls.)

I replay the hours of holding his little failing body. I replay the hours of wondering and trying to feed him a grape. I replay the moment I held a bit of brie cheese in front of his nose and then knowing for certain when he made no move to lick my finger, he must be dying.

I replay the worried phone calls and the frantic rush to the emergency vet clinic and the cool feel of the wall when I pressed my cheek against it when they told me Lennon was dead.

I have been feeling guilty, only in my heart mind you, not my head. My head holds no guilt. I know I took the best care of the little guy possible and tried to make the best decisions for his comfort and his health.

But my heart, still broken, nags at me that I could have somehow done more, or been louder, or more insistent, done SOMETHING...somehow fixing what was wrong.

The whole incident does make me wonder about the "replay" thing.

Why does the human brain insist on this? I used to think that maybe I would replay the events around Randy's death to try to make the day end differently.

But of course, it doesn't work, no matter how many times you hit the replay button.

Lennon died in my arms last night.

Lennon died in my arms last night.

The thing is, he didn't really have to, and if I had somehow realized what was happening just a little bit sooner, or we hadn't done the surgery, he might not have died at all.

But we tried to do the right thing. We really did.

Lennon was one of four in a litter of brothers, and we brought them all home in January 2006. When I say "we" I mean my daughter Lauren and I. The rest of the family like animals well enough, but the "boys" were mine and Lauren's. No question.

We named them on the way home from the rescue shelter. Ciello for the grey clouds of that day and the grey on his fur. Angelo, for the boy who was funny and quick and just a bit nearsighted. Dante' for the handsome studious one with the dashing stripe on his face. And Lennon, for John, of course and because he seemed so wise and he was so beautiful, and his fur was softest of all.

We loved all the boys but Lennon, well, he became our favorite quickly. Some days when I was stressed and wiped out, Lauren would carry him to me and say, "Here mom, you always feel better after holding Lennon." And I would. I would indeed.

Lennon had a tumor before. It started out small but grew quickly. We had it removed earlier this year and it was very traumatic for him and also for me and Lauren. The incision was so big and was hard to keep wrapped. We literally spent nights not sleeping, to make sure he did not bite out his stitches and bleed to death. Those weeks of convalescence only made Lennon more loving and more wise and more dear to our hearts.

He learned new games like hide and seek, and had VERY specific places to stash his special toys we kept nearby to keep him entertained while watching him.

So when we found a new tumor a couple of weeks ago we were very worried and concerned. Last week Lauren had me check, and sure enough, it had doubled or more in size in just a couple of days. We consulted the vet. Together, we all decided to remove the tumor immediately, while it was very small, so that hopefully Lennon could manage the surgery easier.

He was scheduled first thing Friday morning. I picked him up that afternoon. Right away I knew something was wrong, he was acting "different" than he did the first time post op. The staff, and I do not fault them for their thinking, told me his behavior was consistent with the meds and the event of surgery.

I held him in my lap the whole way home.

I never put him down for a second. Not after calling the vet a couple of hours later, and worrying and crying, and having my husband race to the emergency after hours vet clinic. I even tried to breathe for him, when I was sure he had stopped, just two blocks from the ER.

Racing inside the clinic I saw the entire room filled with people, their hands on crates and leashes. I was crying and saying how sorry I was but Lennon was not breathing...and I insisted on rushing to the front of the line. They took his limp little body from mine immediately, but I already knew he was either dead or very close to it. They soon brought me to a room, and then came in and said "We are so sorry."

There really is pain...isn't there? A realy physical agony of sudden grief? We stood in the little room only a minute or two longer, waiting for them to bring Lennon back.

A nice little old lady patted my shoulder while I was slowly walking out the door, quietly crying and carrying my still warm little Lennon. She had tears in her eyes. I don't know if they were there for me, Lennon, or for her and her pet or for all of us. But I am grateful for her words, "I am so sorry."

The worst part of all was driving home, knowing I had to tell Lauren, who was at that moment, playing in a musical competition. Hours passed before I could let her know. She had played well enough to move on to round two in her region. Her joyous announcement would be cut short with this terrible, sad news about her beloved Lennon.

We picked Lauren up from the band hall and I held her in the back seat of the truck while she processed the shock and began to weep. We cried and I stroked her hair and told her everything that happened. I told her I kissed our boy 500 times and 300 times were for her...and when we got home we buried Lennon. We wrapped him in his favorite fleece bed and put in his favorite feather toys and put fresh white lilies into the box next to his little body.

Watching the box go into the ground, and our tears dropping along side of it I could not help but remember when Lauren first asked me, years ago, if she could have a pet rat.

A PET RAT???

I literally almost vomited my lunch.

Everyone knows rats were vermin. Everyone knows they were disgusting creatures that bore disease and were vile things worthy only of extermination. Everyone knows rats were vicious, biting, scary and ugly rodents.

Who knew that in reality, domesticated rats can be wonderful, loyal, loving pets? Who knew that that the actual facts are that they are smart, clean, play games and are litter box trainable? Who knew their fur smells like grape soda, they can learn their names and that scientists have proven they actually giggle when people play with them? Who knew that above all else, domesticated rats want nothing more than the physical loving touch of a human being?

My life, and my daughter's life are richer by far, for having known and loved, our beautiful beautiful boy Lennon. We will miss him terribly. We will miss his little kisses and snuffles in our ears, the way he LOVED the tiny pancakes we cooked for him, the way he kept me company on my shoulder while I folded laundry, the wise little eyes looking softly deeply and quietly into our own.

Lennon 2006-2007

Rest in Peace Lennon. We will remember you always, and we will miss you every single day we have left on this earth.

 

We Do Not Speak of Them: Mourning Practices of the Manouche

An article By Raya Wolfsun

When our loved ones pass on, a terrible emptiness is left where they used to be.  We try to cope with that void by filling it with memories, and many of us do this by talking about the deceased to whomever will listen.  It is certainly difficult to imagine not talking about them.

Yet for the Manouche, a gypsy population in central France, death is dealt with in silence.  They do not talk about a dead person unless practical matters oblige them to, and even then they do not utter the person’s name.  More than that, they avoid things associated with the deceased--such as favorite foods and entertainments--and stop using objects that belonged to them (outright destroying such items, in some cases).  Sometimes they will even desert the place where the person died, declaring it a mulengri placa (place of the dead) and setting up subtle signs to let other Manouche know not to settle there.

It may seem that these practices are aimed at shutting out the deceased, but in fact they work to intensify memories of them.  If you suddenly cease to talk about someone, you will think of that person every time you have to stop yourself from mentioning their name--or if you start refusing a particular wine that your deceased friend adored, every time you turn down the drink it will underscore the absence of your friend.  Furthermore, the practice of avoiding items that are mulle (connected with the deceased) is especially personal, since individuals decide for themselves which objects and practices they will regard as mulle.  Similarly, silence keeps one’s memories purely one’s own by not allowing outside discussion to tamper with them.

The answer the Manouche give for why they set about things in this way revolves around the concept of era (respect).  To them, one of the worst things a person can do is disrespect the dead, and to misrepresent the deceased--even inadvertently--is anathema.  Yet misrepresentation is all too easy, because nobody’s memories are perfect: everyone sees and records the world through the filters of their personal perspectives.  We are more likely to paraphrase what someone said than repeat their words exactly, and even if we can recount a person’s actions we cannot speak for the intentions that lay behind them.  In some ways reminiscence is just speculation, and among the Manouche it is felt that the dead should be beyond speculation.

Places of the dead and mulle objects and practices also require respect.  For this reason, if it is thought that keeping these things will deprive them of due reverence, they will be removed from circulation.  Sometimes this is done by hiding or destroying them, while in other instances they are given away (usually to people who are not Manouche and usually for very little remuneration).  The latter is often the case for places of the dead that become too conspicuous, especially to non-Manouche eyes.

Interestingly, the Manouche still bury their dead in public graveyards.  In fact, Manouche graves take on the opposite character of Manouche private mourning practices: they are prominently decorated with flowers and trinkets, and further attention is drawn to them since family members tend to be buried in plots that are clustered together.  The graves may be made even more conspicuous by the groups of people who are seen visiting them, for when a group of Manouche are going through a town where some of their own are buried, they will make a point of paying their respects.

This contrast is not as strange as it initially seems, if you bear in mind that the Manouche are a marginalized population in an overwhelmingly non-Manouche world.  Many aspects of their lives reflect a dual existence between their own sphere and the wider world of Gadzos (their term for non-gypsies).  The Manouche tend to present themselves as a homogeneous group when dealing with Gadzos, leading out their individual existences only within their own circles.  So it makes sense that the generic commemoration of the dead happens in ways that are highly visible to Gadzos, whereas the intensely personal mourning practices are confined to the private Manouche world.  Either way, the message is clear: the Manouche care deeply about their dead.

(For further information, see Patrick Williams’ book Gypsy World (ISBN: 0-226-89929-2), which informed this article.)

Grief is Good

Grief. It is experienced in many different ways. Cultural and individual differences not to mention the relationship with and the circumstances surrounding our loved one's death affect the way we mourn.

Personally I believe that it is not a good thing to deny grief. When my only sibling and brother was killed suddenly in 1989 I remember some people in my life who suggested I do just that.  Not only was denial impossible, I really believe it would be, and is, incredibly unhealthy to pretend we should not or do not need to grieve.

While researching grief for In Repose I found this site that presents a stunning variety of grieving thoughts.

My friend James at Grief is Good lost his sister who was also his only sibling. Here is his story:

My big sister and only sibling died of cancer at the age of 42 in August of 2005. As a way of coping, I began writing her letters even though I knew she would never receive them. After realizing how comforting an exercise this was, I thought that maybe I could turn this letter writing process into a creative endeavour and put a call out to friends who had lost loved ones and see what would happen. The response was quite positive. Initially, I wanted to compile letters via email for a potential book of letters, but with the emergence of the blog as a medium to interact with others, I decided to start "Grief is Good" at the beginning of this year. I entered the blogosphere thinking that perhaps my friends and I were not alone in finding solace in letter writing.

 

The whole process thus far of writing, compiling, and reading messages has played a huge role in helping me put in order so many of the thoughts and feelings I have experienced since my sister's death. I really, really feel like I have somehow managed to turn the tragedy of her death into something bearable. I will forever feel the loss of her, but I am certain that she would be proud to know that her little brother found a way to get through things.

I have been crafting my own submission for Grief is Good.  I encourage you to consider participating  as well.