Wednesday, September 23, 2009

Blah, blah, blah

Tim and I had an appointment with our grief counsellor today, and she got me thinking. It's a good thing I suppose. A sign that all the money we are spending is not going to waste.

During today's session we were focused mainly on Tim, but when it came to me, we discussed the fact that I've got the blahs. I know I do. Very little interests me these days. Truthfully, I spend most of my days in the house, alone, surfing the internet - reading blogs, cruising Facebook, Googling random stuff. I do little 0f much else. Sometimes the TV is on for background noise, but I usually can't pay much attention to it. I take note of the tumble weeds of dog hair on the floor, the dishes in the sink, the laundry piling up and it starts to get to me (me, obsessive, compulsive clean freak) but then I just feel so blah about it all that I can't seem to do anything about it.

Often I feel a little stir crazy spending so many hours in the house, alone, doing nothing, that I think when Tim gets home in the evenings, I want to do something. But, then when I try to think of what to do, I just feel more blah. Walk the dogs. Blah. Go the movies, blah. Out for dinner, blah. So, the two of us just end up sitting together in the house. Tim watches TV, while I carry on surfing the internet.

Even when I drag myself out of the house, everything seems so blah. For example, I went to the mall today and bought some clothes for Tim and a dress for the wedding we are attending on Saturday. Usually I am so enamored by fall fashions that I get an overwhelming rush of excitement just thinking of the mall this time of year - cable knit sweaters, suede boots, wool suits, jewel toned blouses. But, not today. Nope, today the mall just made me feel, you guessed it, blah.

So, what do the blahs mean? Am I depressed? Sure sounds like it, right? But, my grief counsellor believes I'm not suffering from postpartum or any other form of clinical depression, just grief (another reason why I pay her so much - she isn't trying to label or medicate me). Apparently my blahs are the result of me shutting out the feelings associated with my grief. Rather than my denied feelings creating anxiety as they did before, now my feelings are overwhelming me to the point where I am not feeling much of anything at all. Blah.

She recommended that Tim and I both start privately journaling. Just thinking about what I would write in a journal forced me to acknowledge all the repressed feelings I am holding inside right now - sadness, anger, despair, sadness, more sadness, longing, jealousy, despair, lots of despair, a little more anger, and that longing, that powerful, powerful sense of longing. Oy! It's definitely all still in there.

So, now here I am, home again, alone and on the internet, and I'm thinking. I'm thinking about what it is I have been trying to do lately. I'm thinking about all the comments I have made on other blogs recently about trying to hang on to hope, trying to find the light, trying to see the roses. I think I have been trying a little too hard. At the end of the day, I want to heal. I want to experience joy again. I want to dance and sing and smile. I think I want it so badly, I have been rushing it a little. I have been trying to force it. And, it isn't working.

So, today I am reminding myself that I need to go through it. Head up, straight through it, and feel it each step of the way. Deep breathes. Feel it. The weight of my loss. The grief. Its so bloody hurtful to feel. I thought I was doing it. I really did. I thought I was living in it. Feeling it. Not denying it. But, our grief counsellor is so right. I haven't been allowing myself to feel. I was trying to skip to the finish line without running the race.

Maybe a finish line is a bad analogy. There is no end to grief. I will never "get over" Isla. The best I can hope for is to get to a place where Isla's death is a part of who I am, where I can feel joy along with the residual pain.

I think a better analogy is to think of death as a wound and grief as the healing. The death of a loved one, particularly a child, is an emotional wound, but thinking of it on a physical level, grief is like stitching up the wound. The scar will always be there, and sometimes it will get irritated and sore again, but the wound itself has closed, healed. Right now, only a few stitches have been laid, so rather than being stitched up my wound has scabbed over. And underneath the scab, I've got a huge gaping bloody wound and its throbbing. Only sometimes I can't feel the throbbing because my body's pain defences have kicked in and made me numb. I can continue to live like this, with a scab instead of stitches, but whenever I move, I am at risk of the scab tearing off, and when it does, I will feel the searing pain again. Much better to stitch the wound up properly, right? The catch - there is no anesthesia for these stitches. I've got to feel each one being laid.

The goal of our grief counselling is to teach Tim and I how to feel, but also how turn off our feelings so we can function with our grief. I'll be listening closely next week.

Monday, September 21, 2009

37 Weeks

Unlike some, I haven't been one to watch the calendar since Isla died. I did not mark the one and two month "anniversaries" of her birth and death. Those days came and went, just like other days. Apparently I still like to torture myself though, because just now, for some reason I myself do not understand, I went online to determine how many weeks pregnant I would, or rather, should be. The answer: 37 weeks. Full term.

I have been asked a few times when telling Isla's story whether she was full term. I HATE that question. I always defensively respond by saying she was past the point of viability, and explaining that she quite possibly could have lived outside of me without any long term health complications. I wish I did not have to feel so defensive, but I also wish people understood the depths of my loss and knew not to ask such insensitive questions.

The past 12 weeks feel like an eternity. I feel like I have aged 12 years. I'm old, worn out. It is hard to imagine that I could still be pregnant with Isla now, and could be for several more weeks. Hard to imagine her living inside of me all this time. I can't help but wonder how she might look if she arrived today. How much would she weigh? How long would she be? How much longer would those long feet of hers be? How much bigger those big hands? How much more hair would she have? Would her little face look the same?

Isla was so incredibly perfect, it is hard to believe that she needed another 12 weeks or more of growing to be ready for the world. She was of course tiny, but she was big, very big, for her gestational age. She weighed 810 g, when the maximum range of "normal" birth weights at 25 weeks is only 759 g. She was also very long - 13 inches, when the average length at 25 weeks is only 9. It makes me proud to think of how big she was. How big, and and how seemingly strong and healthy. Like I did a good job of growing her right up to the point of her death.

We were given the preliminary autopsy report last week. Despite that the report was completed on July 7th, we did not receive a copy until last Thursday, when it was faxed to us because my OB decided it was not worth having us come in to discuss the results because the report said very little. Why did I have to wait almost 3 months to receive it then? And why, now, I am still having to wait another three months or more for the final report? So frustrating.

While the preliminary report said little, it did indicate she had pericardial and pleural effusions and ascites (collectively hydrops), suggesting that it was most likely an infection and not a placental abruption that killed her. Poor Isla. Poor big, strong, otherwise healthy Isla. Dead, gone, because of some infection.

While I am enraged by the injustice of it all, and of course wondering when and how she contracted an infection and what I could have done differently to prevent it, I am also somewhat relieved to know that it was likely not a placental problem that caused her death. If it was an abruption, after having one I would have a ten fold risk of having another and there is little, if anything, that can be done to prevent it. I also have spent much time concerned that it was an abruption and agonizing over whether I did too much walk or lifting in the days before her death to cause it. And, thanks to reading books about the importance of pre-conception care, I have also spent time fussing over the things I did before I knew I was pregnant with Isla that may have resulted in the growth of an unhealthy placenta.

With the final report we will hopefully learn exactly what type of infection she may have contracted. I am hoping it was something fluke, like Parvovirus B19 (Fifths disease/slap cheek), and not something reoccurring like Group B Strep. I don't think I will ever not feel absolutely terrified to be pregnant again, and well, like all of us babylost bloggers, I now know of five million other ways in which babies can die, but I am hoping if it is some fluke infection that killed her, the rational side of my brain will be able to reason that it likely will not happen again and that one day I may actually have a living, breathing child in my arms. A child who will hopefully grow inside of me for 37 weeks (and not a moment longer because it would be cruel for any doctor to expect me to last the full 40 or longer).

Thirty seven weeks ago tomorrow, January 6th, 2009, I started my period. At the time it was heartbreaking because my period was a painful reminder of the loss of Peanut. Yet thirty seven weeks ago I was also naive and full of unabated hope (well...almost unabated). I'm wiser now. Much wiser. Nevertheless, while my hope has certainly waned, it still exists.

Thirty seven weeks. Not so long. Less than a year. It's strange how 37 weeks can feel like an eternity. I guess that's what happens when you learn that 37 weeks is sometimes 12 weeks longer than a lifetime.

Sunday, September 13, 2009

This Man I Love

It's 12:19 a.m. Officially September 13th, 2009. My first wedding anniversary. Not the way I ever imagined spending it. Tim is upstairs sleeping in bed alone and I'm in the living room curled up with the cat (and the laptop of course).


Before I go snuggle up with my hubby, I wanted to take a moment to tell the world just how wonderful he is. I could not ask for a better partner, although I'm sure in recent months Tim could.


On November 9th last year, I turned 29. Eeek! My 30th year. Tim and I got to talking about the list of things I wanted to do before I was 30. I had never actually made such a list, but I, somewhat jokingly, and mostly fantasizing, said that I wanted to be married, own a house, and have a baby. Perhaps I should have said I wanted a million dollars too, because didn't my sweet little hubby decide he would make all my dreams come true?!


Of course, the marriage thing had been taken care of. So a few days later, rather spontaneously and without any real discussion, Tim decided we'd stop trying to prevent getting pregnant (I conceived peanut sometime around November 19th). On April 28th of this year, we purchased our first house (it was no easy feat with our student debt and Tim took on a second job so we could make it work). On July 1st, we had our first baby. Things didn't work out exactly as we had planned, but if Tim could control the universe, I guarantee I would be sitting here babe in arms.


While I was growing Isla, Tim did everything he could to tend to my every need (and mood swing). He prepared every meal and washed the dishes after. He fed me dinner in bed in the early days when I was often too tired to hold my head up after work. He held my hair while I lost my breakfast every morning for the first trimester. He scooped the kitty litter every other day (despite that I brought the cats into the relationship and he swore he would never touch the litter box). He walked the dogs morning and night. He cleaned the house. I could go on and on. He did all of these things willingly, without being asked, and with a smile.


Since losing Isla, Tim has not stopped taking care of me. Seriously. He cooks dinner every night and insists on doing the dishes. He scoops the kitty litter. He walks the dogs. He cleans the house. He does it all, and when I try to help, he insists that I sit down and focus on taking care of myself.


Of course he does so much more than physically tending to me and the house. He holds me while I cry. He kisses away my tears. He listens when I speak. He sides with me when I am angry. He is patient and kind and caring. He is my best friend.


And oh, how I love him, both for what he does for me, but more importantly for who he is. This man I love.




Oh, and in case you didn't notice, he's incredibly handsome too.


Happy First Anniversary Baby. As the song goes, all I know is we are better together. Together we can survive anything, even losing Isla. Thank you for being you and for all you do. I love you. xoxoxoxoxoxoxo


Tuesday, September 8, 2009

I Can't Hide My Love Away

I started this post a few days ago, but could not finish then. I sat, fumbling for words and feeling frustrated and angry. Very angry. Too angry to write. I'm in a different place now, so I'm sure this will end up being a different post than the one I would have written on Tuesday, but I'm going to pick up where I left off...


On Monday on our local classic rock station there was a top 50 countdown of Beatles tracks. Despite feeling particularly bereft and frustrated and anxious, in hopes of lifting my spirits, I kept radio tuned into the station as I drove to pick up flowers to bring to cemetery. While I think the song was written about homosexuality, the lyrics of "You've Got to Hide Your Love Away" resonated with how I have been feeling lately:

Here I stand head in hand
Turn my face to the wall
If she's gone I can't go on
Feelin' two-foot small

Everywhere people stare
Each and every day
I can see them laugh at me
And I hear them say

Hey you've got to hide your love away
Hey you've got to hide your love away

How could I even try
I can never win
Hearing them, seeing them
In the state I'm in

How could she say to me
Love will find a way
Gather round all you clowns
Let me hear you say

Hey you've got to hide your love away
Hey you've got to hide your love away


Hide my love away. Hide my grief away. Hiding my grief away is hiding my love away, for what is grief other than an extension of our love for those we have lost?


In our North American society, grief is socially unacceptable. When a loved one dies, not matter the relation, we are told to "be strong", "keep busy", "smile, she would want you to". It seems as though once a funeral has been held and the casket closed, society expects us to have closure on the passing of our loved ones and for grieving to end.


Its particularly shocking that here in Canada, where employment and human rights are (relatively) ably enforced, that the Employment Standards Act provides that an employee is entitled to only three days bereavement leave when an immediate family member dies, including a child.


Last September while honeymooning in Greece, Tim and I ferried from Athens to Santorini. There was a mix-up with our travel provider and rather than on a direct sail, we ended up on an island hopper. Enjoying the sunshine on the bow deck, we did not mind one bit. As we approached each port, we would stand at the deck rail, camera in hand, trying to take in as much as we could of each of the tiny islands we stopped at.


I believe it was in Naxos when a casket was unloaded. I heard the wailing before the ship was even docked. Twenty or so mourners, all adorned in their mourning clothes, stood waiting for the casket to be rolled out. The women sobbed loudly, and one woman, who I presume was the deceased's mother, wailed. She wailed with such fervor that the boat's engines did little to drown out her cries and pleas. She threw her arms in the air, let out noises I had never heard before, and allowed the others to catch her when her knees buckled.


Tim and I, and our fellow travelers, watched from the boat as a priest splashed the casket with Holey water, and then as the men picked up the casket and the mourners all paraded away together, carrying their dead, praying, sobbing, dressed in their mourning clothes.


How sad I thought, and then how dramatic?! I asked Tim if he thought the emotion was real or whether it was forced, like some sort of show. I wondered if the mother felt obliged to carry on that way, and whether if in Greek society, the bereaved would be judged if they did not make such a production out of the death of a loved one.


I do not wonder such things anymore. I now understand that those noises were primal screams, and on tiny Greek Islands, it is okay to let them out. The mourning clothes are like the "My Baby Died" t-shirt I wish I could wear so people would understand my tear stained cheeks, puffy eyes, short temper and inability to make social niceties. Now I wonder, how long it is socially acceptable to wear mourning clothes in Greece?


Here in North America, we are given a few minutes or so to scream and wail when the news is delivered, a few days or so to cry openly, and, at best, a few weeks or so to finish up the business of feeling sad and to get on with our lives. After ten weeks, my grief has already outlasted others tolerance of it.



I've posted before about the lack of support Tim and I have received from our friends and family members. Knowing I have real world readers, I have been hesitant to get into much detail for fear of offending anyone. It is not that I actually care if any of my real world readers are offended, because quite frankly, this is not about them right now, but I am loath to create any conflict or drama that will just make the situation worse for Tim and I. But...at this point I do not know if it can get any worse, and this is my space for sharing and growing and healing, so here goes...


A certain family member, lets call her M, has been relentless in her pursuit to force us to "get over" Isla. She has been not so subtly suggesting we should be "back to normal" for at least six weeks now. She made it clear to both Tim and I that after four weeks, her expectation was that we should be back to work full-time. When she learned that Tim was gradually returning to full-time hours, she advised me that she had decided that an appointment would be scheduled for Tim and I with the family doctor to get anti-depressants because it was, "enough now".


In the initial days following Isla's death, Tim and I made a conscious decision to face our grief head on in order to heal, and that we would not deny ourselves the opportunity to mourn the loss of our daughter because we understood that grief could not be avoided, and suppressing our emotions would only delay inevitably feeling them. We also decided we needed to balance grieving and living. And, truthfully, I think we have been doing a really good job.


When M began suggesting it was time that we started to feel better just a little over a week after Isla's death, Tim and I tried to explain to her that grieving was healthy and necessary and that without grieving, we risked long-term emotional health problems. We also tried repeatedly to explain how profound this loss is to us, despite the fact that Isla was not born alive and we did not have an opportunity to bond with her outside of my body. She did not get it. So we tried again. And again. And again. And again, to no avail.


With each passing week M has become more insistent that we should no longer be grieving and more forceful in her attempts to make us feel and behave the way she wants us to. It has escalated to the point where, on Sunday night, she advised Tim that he required psychiatric help because he should no longer be feeling sad and that Isla was "just a late miscarriage" and we should be over it by now (wrong on so many levels, I know).


At first I tried to be patient and to rationalize that her instinct is to fix things for us, to take away our pain. I'm sure that is a big factor in what is happening here. But, I've decided it is more than just that. She is the ultimate by-product of our grief denying North American society - emotionally stinted as a result of her own unresolved grief and seeking to perpetrate the same denial of grief that has been imposed on her.


We do not talk about death, and particularly baby death, and more particularly stillbirth, so there is little reference for what a "normal" length and pattern of grieving is. We deny the bereaved the opportunity to express the emotions associated with grief. We encourage grief avoidance patterns by rewarding the bereaved for "being strong". And, perhaps most concerning, we label those who still have the ability to express their grief despite these social pressures, as being "overly emotional" or "crazy".


M genuinely believes that ten short weeks after the death of our daughter, Tim and I are suffering from some sort of pathological mental health problem, because we are not "over it" and "back to normal" yet. I have discovered that no matter how often I try to explain to her that our grief, and the feelings associated with it, are normal and to be expected, and that regardless of Isla's gestation, Tim and I are grieving the loss of a child, our child, a real baby, she just cannot get it.

So, alas, I have given up; thrown in the towel (or in this case the tear soaked, snotty Kleenex), and built a thicker emotional wall between myself and M.


I'm not angry anymore. Disappointed maybe, but not angry. Her own social conditioning has left her struggling so much with her own repressed grief from other losses and the loss of Isla, that she is incapable of feeling her own emotions, let alone understanding ours. And you what? While she may not be offering Tim and I the support we so desperately need, she is teaching us a lot about grief and its important healing value.


And this has me thinking about the need for this space, lost baby momma blogland. This is our own little society where our grief, and all the emotions associated with it, are socially acceptable and support is unconditional. While I am so grateful for this space, I am also saddened that it is necessary. What does it say about our society, and our friendships and our families, when we, bereaved parents, must conceal our grief in the real world and turn to people whom we have never met for the unconditional support we so desperately need.


Hide your grief away. The message is everywhere. It is in the lack of cards and phone calls from people who really should acknowledge the death of your baby. Its in the the phone calls and visits that stop after a couple of weeks. Its in the gentle and not so gentle prodding for us to "get back to normal".


Hide your grief away, to me, feels a lot like hide your LOVE away, and, as a mother, I find this impossible. I think this is where so much of my frustration and anger has been coming from. I'm back to the early days of wanting to stand on the front lawn in my pajamas screaming, "ISLA MICHAELA JOHNSTON, ISLA MICHAELA JOHNSTON, ISLA MICHAELA JOHNSTON". Now I won't of course, because well, not only would that likely land me in the psychiatric ward of the local hospital, I would embarrass myself. Such behaviour is socially unacceptable here in North America (well perhaps wearing your pjs on the front lawn screaming is socially unacceptable everywhere).


But, what if it were just okay for me to grieve? To talk about the death of my baby? To stop pretending I am okay and she never existed? To dawn mourning clothes and cry in public? Would I still feel the need to shout her name? Maybe. But at least then it would be easier to do so, right?


And, maybe then, if grieving were socially acceptable, my family and friends would stop talking about how I need to hide my grief away, so they could listen and actually hear me saying her name. And, maybe then, if more people in my real world were listening and hearing her name, I would not feel the need to scream her name at all. And maybe then, my love for her would be validated and I could get on with the business of healing from the pain her death has caused.


Until then (and since I the neighbours are outside right now and my pjs do not even match, making my trip to the psychiatric ward all the more shameful, and well, I am Canadian after all, and you know how polite we are) I guess I will just have to keep screaming her name and professing my love for her here.


ISLA MICHAELA JOHNSTON!!!!!


It is a beautiful name isn't it? Just in case some of you do not know how to pronounce it, it is Eye-lah, like the actress Isla Fischer, not Iz-la.


And, I LOVE her, so very, very, very much.

Tuesday, September 1, 2009

JETHRO CRAIG WILHELM WE REMEMBER

Today Mirne and Craig lost their third child, baby Jethro Craig Wilhelm ("Jet"). Words really can't express the sadness I feel in my heart for Mirne and Craig and sweet baby Jet.

There are no words right now, so I will just say his name, Jet. xoxo