My amazingly brave friend

Someone who has been the most amazing friend to me is 18 weeks pregnant. I knew, I could see the signs over the past few weeks, and she told me on Monday.

She is so very brave. I found out shortly after Grace died that she too had lost a baby. She had fallen pregnant soon after her first child was born. Unfortunately, not all was well with the growing bub. She had Downs Syndrome and  array of other severe structural abnormalities and my friend and her husband made the very difficult decision to terminate the pregnancy at 18 weeks. She didn't tell a soul, apart from family members, and had suffered in silence day to day with this anguish.  

She went for genetic counselling. She was told that her surviving child was the exception to the rule and that any future children would face a very high probability of being Downs babies or worse. What she didn't realise when she went for the counselling this year was that she was already pregnant again. A mishap - she was on the pill and was assured that antibiotics she was taking for a minor ailment wouldn't have any effect.

Of course, finding out that she was pregnant, believing the worst outcome was the one most probable, sent her into a spin. At an early scan, her obgyn told her that he saw soft markers for Downs. So she took herself, and her test results, off to the high-risk specialist, so that he could do further testing by taking amnio and placenta samples. He refused to do any testing which would compromise the baby. You see, she had been given incorrect information. She faces no higher risk of complications than any average member of the population. And, for now, her bub looks good. It's a small relief. Like me, she knows all too well of the multitude of worse-case scenarios which are possible.

For me, well, I am a little sad, I admit. Seeing others have their babies, their second, their third while I can't have my first and still feel so far away from even the possibility number two. Seeing others hope when I'm just not ready to believe that I can ever hope again. Knowing that even if I do find a speckle of hope that hope and faith alone are simply insufficient.

I hope and I pray that all goes well for my friend. No-one should have to go through this despair once, let alone twice or more. In spite of my reluctance to be hopeful, her bravery and courage is inspiring. So that's what I am going to try and hold on to.

The thing about fear

I was devastated to read about Becky and Derreck whose beautiful rainbow baby girl, Evelynn, died last week. I am so heartbroken for them – there are no words. I am new to Becky’s blog and so this morning I skimmed through some of Becky’s earliest blogposts. There in black and white she wrote of her fear of uterine rupture in a subsequent pregnancy – she ended up having a caesarean after baby Liam’s surgery and uterine rupture is one of the risk factors associated with a prior caesarean. Her doctor urged her to wait at least six months before trying again after Liam – I’m paraphrasing, but according to Becky her doctor basically said that following 6 months of healing the risk of uterine rupture was practically zero, and that this risk would be further reduced because they would be sure to schedule a caesarean well in advance of her due date. It was approximately eight months after Liam passed that Evelynn was conceived. And, mere days before a scheduled caesarean at 37 weeks, Becky’s uterus ruptured and Evelynn was born brain-damaged. They had no choice but to take her off life-support.

The complete cruelty and randomness of it all makes me so very ANGRY!  They did EVERYTHING right: Becky is the epitome of good health, they heeded their doctor’s advice and, most importantly, they dared once again to dream and to hope and to have faith. Now this? It is inexplicably unfair and unjust.

And so, the thing about fear is that it just doesn’t matter how many stories one hears about things going well. A single horrific event is enough to cause the fear monster to rally. In my last post I was marginally hopeful. Right now, I'm not.

A difficult but hopeful month

Since Grace died, no month has been a good month. But April has been especially difficult. Thusfar, four colleagues have each lost a parent (three fathers, one mother), a friend lost her father, and another colleague committed suicide. Death and suffering surrounds me. The thing is, although I am so sorry for all of these losses, I can’t help but think that at least these people who have passed lived. Some better than others. Each with their own trials and tribulations to endure. But they lived, for better or for worse. It makes me very sad that Grace never got that chance. The world lost out on her. And she lost out on the world.

I struggled for a long time (before Grace was conceived even) with the idea of bringing a child into the world only to have them go through the pain of losing the ones they love. I thought I had dealt with this when we threw caution to the wind and Grace was conceived. But then she died and all those negative thoughts came flooding back - the ultimate blame game. If we hadn’t made her, then she couldn’t have died. But if we hadn’t made her, then we would never have loved her. The latter is just so much worse.

And so sweet Gracie Face, as the five-month anniversary of your passing looms on the horizon, I want you to know that we love and miss you so much. There will always be a part of us that continues to wait for you to come home. We will never forget you, and will always wish that you were here. But, with your blessing, we are hoping to become hopeful again. Hopeful that we will bring your sister or brother into the world and that they will live, love and be loved and fully experience all the world has to offer.

Hurt

My friend A’s son was delivered via c-section this morning. The same friend with countless pregnancy problems who, about 8 weeks after Grace died, sat across a dinner table from me, cigarette in one hand, glass of wine in the other and told everyone how she wished her pregnancy were over because ‘it’s just inconvenient’.

Yesterday, I texted her and her husband and wished them well for today. They said thanks and that they would definitely keep us posted. But, as yet, no-one has actually texted or called me to tell me that everything went ok. The only reason I know it did, is because another friend called my husband about something else and he asked after them.

Why are people so scared to talk to me? Since that episode 8 weeks out, I’ll admit that I haven't wanted to see A. She is not one to censor, and I am (understandably I think) sensitive. But I did and still do want to know how her and her son are doing. In the lead up to today I had asked her how she was more than once, but in most cases she didn’t even bother to reply. I spent last night hoping the biggest volumes of hope that everything would go well for them, and that there would be no complications. I think I have made the best effort that I can, given our circumstances. But yet I still don’t get the courtesy of a text, not even from our other friends, letting me know how they are doing.  It hurts.

The best I can do

I had a meltdown at work the other day. It was a really rough Easter weekend – Easter was earlier than last year, but this time last year Grace was already with us, this was the weekend we had told my folks and my husband’s folks that we were expecting and then one week later my MIL died. When it came to work on Tuesday I just wasn’t up to trying to teach 4^th year students (a number of whom had watched Grace and I grow because they took my Labour Economics course last year … a standing joke was that I would say – “I’m going into Labour” just before my lecture to my colleagues and they would look at me slightly panicked before realising that I was talking about a class, not giving birth… but I digress).  

I was going over my notes before the lecture when the injustice of it all suddenly overwhelmed me. I’m teaching other people’s kids, preparing them for their future. Grace’s future was severed before she was even born, right on the cusp of her first breath.

I’ve always had real problem with the ‘future’ because, to quote a famous economist: ‘In the long-run we’re all dead.’ That’s the bottom line really. To want life requires an acceptance, even an embracing, of death. Yet every fiber that is my being wants to revolt, rebel against and resist death. One would think that by now I would have learnt my lesson, and that I wouldn't respond with such disbelief and indignance to death's inevitable assault. One would think.

Anyhow. I ended up in the Dean’s office, bawling my eyes out while he watched and waited patiently for me to catch my breath. When I did, we sat in silence because both of us are better listeners than talkers. Eventually he asked two very brave questions, ones which most people have stopped asking because they can't provide me with the answers I still want so desperately to hear. 

"Is there anything you need? What can I do to help?" 

"I need my daughter back, please, you can help find a way to bring her back!" This is what I screamed in my head. But I kept silent.

He then offered to teach my class, an offer which I gratefully accepted. It was the best that he could do. And continuing to muddle on through this, for  now most times worse than others, is the best that I can do.

Dreams

I dreamed of a baby last night. And it wasn’t Grace. I delivered him at the same hospital where Grace was born and as he was handed to me I felt peace. I lowered my shirt, exposed my left breast, cradled him and then watched in awe as his little mouth took hold and I felt my life and love being passed through my milk to him, nourishing him. Then he slept and I watched his chest rise and fall, rise and fall.

The last time I dreamed of a baby was shortly after Grace died. I pointed to a baby lying on the mattress and screamed ‘look, she’s breathing, she’s not dead.’ I scooped her up and held her tight. But she wasn’t Grace either. Grace’s hair is the same shade of brown as mine, but this baby had blonde hair. Just before I woke up I saw a reflection in the mirror of myself holding this baby, who was now a toddler. I was smiling, but a haunted, glazed look in my eyes betrayed my sadness. The toddler was grinning – a pure and shameless grin of joy and her bright blue eyes twinkled.

Heavy

I’m just not sure how much more bad news I can bare. I am heavy with the weight of death and despair firmly bound to my shoulders.  On Monday, my colleague’s father succumbed to cancer. This morning, my husband’s colleague and good friend died from a heart attack. It is so difficult to try and find peace when around every turn people who we love and care about are dropping like flies. Time heals all wounds? Pah. Just as some sense of normality and peace attempts to set in, the next terrible thing happens. The one thing which I really don’t feel like we have on our side at all is time. Because there are no guarantees. Of pregnancy, of babies, of life.  With each second that passes the more distance there is between us and Grace. With each second that passes the closer we are to our own mortality.  Time won’t heal our wounds because death just won’t let up, won’t let us assimilate. Death keeps on picking the scabs off our weeping wounds and infecting them.

Four months

Dear Grace,

It is four months today since we watched your heart beat it's last beat and since I felt your last kick. Four months since we simultaneously kissed you 'hello' and 'goodbye'. We love you and we miss you so much Gracie Face.

It's hard for us to envisage what you would have been like today, what milestones you would have achieved. We wish we knew what you would look like, sound like, feel like. It's so hard to contemplate what our lives would have been like with you physically present. Would we be grumpy from a lack of sleep and frustrated because we can't console you when you cry? Would we be asking ourselves "what were we thinking? - this is so damn hard!" Would we be getting frustrated with you - innocent you, who never asked to be brought into the world?

Or would we be grateful? Grateful that you were born alive, kicking and screaming and that you were growing and healthy? I like to think that we would be so profoundly grateful. But I don't know, Gracie Face, I just don't know.


What I am certain of is that we are forever grateful and blessed for the short time that you were with us. As much as we are poorer and empty from your absence, we are richer and fuller from having you in our lives. Our hearts and minds swell with love and pride for you, our precious little girl.

This song reminds us of you Gracie. Wherever you are, we hope that you are content and happy (and missing us as much as we miss you!)

When she was just a girl
She expected the world
But it blew away from her reach
So she ran away in her sleep
And dreamed of paradise, paradise, paradise
Every time she closed her eyes

We hope that you have found your Paradise.
Love you always,

Mom and Dad
xoxo

On Friday evening my husband and I went to his sister’s house to get together for her 40^th birthday. How much life has changed in just two years. My sister-in-law lost her husband in 2010 – he died unexpectedly from a heart attack aged 38 and our family was devastated by the loss. Today, though, there is a new normal which excludes his physical presence but which embraces his spirit. Of course, we still miss him dearly, but those dark days have passed. Last year she met a wonderful man and they have been dating ever since. He makes her happy and we have created space for him amongst us.

My father-in-law has also met a lovely woman who we met for the first time on Friday. My husband had been dreading this first meeting. His mom has been gone less than a year (it will be a year in April – another unexpected heart attack), and he has had to negotiate not only his grief over her death but also the anticipation of the life of our daughter and now her death without his mom's support. I am extremely proud of him for holding it together – he has had so much to contend with over the past few months.

My brother and mother in-law’s presence continues to be felt because we keep their spirit alive and hold them close by re-living and re-telling stories which capture their essence. But with Grace, we have so few of those moments, and barely any which include our family and friends. Her birth was supposed to be the starting point for the creation of vibrant memories of her life and growth, not the end of the opportunity for them.

Yet again the gaping hole resulting from Gracie’s absence took my breath away when I saw my sister-in-law showing off family photographs displayed on her dining room wall. No-one has even asked to see the pictures of Grace, let alone requested copies for display. Attempts to engage in conversations about our daughter are met with a saddening of expression, an uncomfortable response and quick change of topic. It makes me so sad because Grace, however short her life, is deserving of way more than that.

Statistics Schmatistics

I was a numbers person. Risks, probabilities  - I soaked them up. That is until we became the one in 200.

The risk factors for stillbirth include obesity, substance abuse during pregnancy (including smoking and alchohol abuse), high blood pressure, IUGR, diabetes etc etc. When one hears the statistic 1/200, one thinks that at the very least, the person unfortunate to be the '1' would have exhibited at least one of the risk factors. Well not me. I didn't tick any box on the risk factor checklist.

A friend of mine is pregnant - she is 'due' at the end of April. I say 'due' because she will be having an elective C-section 2 weeks prior to her due date. She is obese, pre-diabetic, has 3 fibroids (one of which is about 8cm in diameter and blocking her cervix). She also has placenta previa. She has continued to smoke and drink throughout her pregnancy, as well as stock up on soft cheeses, sushi and other off-limit delights. I hope both her and her son will be ok - by all accounts he is thriving despite the odds being stacked against him.


All I can say is statistics schmatistics. No amount of statistical research will ever be able to explain why Grace isn't here, or why some babies are born alive (and even healthy) despite the adverse conditions they face. It does my head in.

Just moving

So here I am. It's just short of 4 months since Grace passed, and I have decided to set up this blog to connect to others (way too many others) who have had the devastating experience of stillbirth.

We're getting by. This weekend was especially difficult. We were moving furniture around and had to move the car chair and pram. My husband still refers to everything as Gracie's chair, Gracie's room etc. As much as we had so many plans for Gracie, and she was (and still is) such a huge part of our lives, I am moving to a place where I can't continue to associate Grace with all the material things intended for her. For me, it's just not helpful and serves as a constant reminder of what should have been instead of what is.