Limbo

It's been a while since I have had the energy to write. I'm back at work fulltime and it is exhausting. The weekends come and I just crumble. I have nothing new to say, nothing new to share. It is just the same old rerun, week after week. I spend Monday to Friday faking it. 

I miss my boy. 

I am in this strange and uncomfortable place. I really just want to wake up from this horrible nightmare, but I can't. It is real and it is painfully so.  Most of the time, I have come to terms with what has happened. I don't have a choice to really think otherwise, but I am still so burdened with heartache. I am distressed that I still feel like this. It is a hopelessness and sorrowful place.  I am worried too about my husband. He is not handling things well at the moment. He often just disappears for a while, because it all becomes too much for him. He doesn't really want to talk and he won't go for professional help. I feel quite lost and not knowing how to help him makes me feel so paralysed. To watch his sadness and sorrow really breaks my heart all over again. Nearly ten months on and sometimes it feels like we haven't really come that far, but then I suppose we have.  No choice really. 

We are at different places about trying again. I so dearly want to. He feels like it is not right. I can respect that, but there is really no indication about when or even talking about it. I feel that I don't have anything to look ahead to and looking back reinforces the trauma of not having Tristan and I am ever so aware of it at every moment. 

So, I feel like I do not have anything really worthy to share about where I am at for the moment, hence the quiet. It is pretty much same-same, with no prospects, no achievements. Life continues to go on -  but feeling like I am moving really slowly in the midst of life as it flies by & around me. 

unravelling

Unravelling. That is what is happening to me. I feel like I am doing so much worse now. I feel like the very essence of me is falling apart and I don't know how to fix it...And I usually know how to fix everything. I am a "doer" - I am the organiser in my family. The one that co-ordinates and gets things done. The one that guides others and at the moment, I am completely lost. 

I no longer know myself.  To make matters even more miserable (cannot even fathom to say worse....worse is where I already am), I have been diagnosed with post-partum thyroiditis. At the moment, my thyroid antibodies are literally attacking my thyroid and I have been termed "toxic". I thought that all the symptoms I was having are part of grief - and they are. It just makes grief all that worse. Anxiety; depression; hair falling out in clumps; uncontrollable shaking; heart palpitations; excessive sweating; excessive fatigue when exercising; muscle trembles; insomnia - the list goes on. I really even did not think about there being a physical explanation. I thought it was all obviously emotional. I only went to check it out at the doctor because I thought that maybe I could get something to help me to sleep. The doctor initially thought that the hairloss was related to grief  but decided to follow up on a secondary possibility that it could be related to my thyroid function - just as a precaution. Turns out, my antibodies were off the charts and now I am having blood tests, doctor visits and have started medication. I don't really know how all of this is going to affect my chances of conceiving, as we were starting to think about that. Now there are added complications and risks - as if it wasn't going to be terrifying enough. 

Today was a day that I should not have left the house. Had medical stuff to attend today, which was just crap and then a complete bun fight at work. Sometimes my patience wears a little too thin and when people do things without thought when approaching their work, it drives me nuts. Today it was my internal colleagues and an agency who presented some work which did not answer my brief. After ensuring that I made my message well and clear, to come back with so little consideration to addressing my concerns and answering my brief - well I almost threw the book at them.  To top it all off, I started to relax a little around that little sticking point of t  running into that someone who missed the news. I literally thought about it last night and how good it has been to avoid that confrontation and then today it happened. With a supplier. Calling to canvas their services. Asked how the baby was going...gulp...."uhmmmm.....aahhhh...well, I guess you haven't heard....blah blah". Stunned silence, which I expected and then they launched into - Oh! Well, hang in there...don't forget that you are a human being too. Don't be so dark and keep the faith.....URGH!!! They just went on and on and I just wanted to smash that receiver I was holding up to my ear, listening to it all, against the desk. Then the side of me that I really should have battered down with that receiver said to just let them finish, go on their way and so be it. You don't know what their own circumstances are. They continued to blabber on about what I should be doing and feeling and then tried to solicit details from me about whether there were any opportunities for their services. Quickly shut that conversation down, too politely really and hung up. Ranted to my colleagues, silently fumed at myself for allowing her to go on like that, all the while fighting that rising heartbreak and hurt. 

It was just one of those days.

 

Well the plaque on Tristan's grave is finally there. It felt wrong that there was nothing marking his grave, but it took forever to get it made. I had completed all the paperwork early on, but the company making the plaque reopened from Christmas at the start of February and we were told it could take up to eight weeks for it to be made and mounted.

Now that the plaque is in place, it feels like it was the last thing that I could do for him, as his Mum, to set things right.

Since Tristan has been buried, another nine children have been laid to rest on his row - all of them babies. It is just so very wrong that this is happening to us and to other families at all. Those that I have counted, are the ones that have been buried at that cemetery. What about all the children that have been cremated or buried at other places? It is too many. Too many children. Too many families affected. Too much hearbreak and sadness.

running into glass doors

We had dinner with friends last night. We were due four days apart and had lived and breathed our pregnancies with each other. They have a beautiful little girl, who will forever be a reminder of my little boy. I know they feel our loss probably a lot more than our other friends, because of our journey together. My girlfriend said to me that she thought that our children would have been as close as brother and sister. She changed mothers groups because she said that it would have been the one we would have gone to together and it didn't feel right - so is attending another group.

She asked me whether I am grieving differently now, compared to the early days. What was it like and what is it like now....What it was like....it was like running towards the outside - seeing where you want to go and then...smack-bang. You have hit the glass door you just didn't see. You can see through to the other side, where you want to be, but are stunned, shocked and numb, coupled with the fact you just slammed into something you didn't see. What is it like now...In many aspects, it is worse because no matter what, you cannot change your circumstances. It is permanent and it is real and it is going to last my lifetime. Every night, I replay the whole event in my head. It is all I have. Naive, heading into hospital excited that the next day I would have that little person inside me cradled safely in my arms...the bliss of that first skin to skin contact I had faithfully been promised by the midwife running the parenting classes we attended. Blind trust that everything is right and how that came tumbling down. The panic, the drama and the distress. Those precious 25 hours. That is all I have to remember, so I remember every single detail -  the horrible; the real; the amazing; the beauty and the sadness. Every damn bit of it. Top of mind, all day, every day.

These last few weeks have seen a transition in me. I have started back at work (part-time & as my boss has maintained, in my own time).  I have gone back not because I had to financially, but because, one, my husband has gone back and had to deal with his grief and function, so why shouldn't I, and two, because it was becoming destructive for me to be at home, being a miserable wreck. I would sit at home and fret. If even one thing was out of place, I started to get anxious to the point where I was becoming a little obsessive compulsive. I was already a neat freak, but was going into meltdown at the first sight of disorder. I was getting grouchy at my husband and moody around those who were taking time out to be with me, keep me occupied and distracted. Not that going to work makes me feel better. In fact, each morning when I wake up, I feel as though I have been rudely slapped in the face with a big dose of  "f@#k you, your life sucks and it's time for you to face the day without your baby, yet again"

I work for a large organisation and I dread the day that I run into someone that hasn't heard what has happened and I have to explain. I have to brace myself each time I head into a cross-division meeting for exactly that reason. Most people I work with closely came to the service we had for Tristan, but there are a few others that see me for the first few times and freeze. I can see their minds ticking, wanting to say something, but they don't. I used to be the type of person that would try and put people at ease, if I could see their discomfort, but now, I really don't give a shit. Why do people care more about how they feel & employ avoidance tactics? Do they know that they really can't make me feel any worse? 

I have also started to focus on me a little. This week, I joined the gym and have hired a trainer. I hired a trainer mostly because I have lost that determination and am happy to be lazy. I don't look too bad physically, but I have looked & felt a lot better than I do. I have come to expect that I may fail, because my life has failed, but I don't want to be like that and I just can't do it by myself. Loss has made me doubt myself, made me cowardly and timid. 

I am meeting another mother this Friday who lost her baby to Vasa Praevia a couple of years ago. She has recently had a baby and I in some ways I want to learn how you can overcome a loss like ours to have another child without climbing the walls in terror, because I desperately want to ensure that when that time comes, I will be able to handle myself.

A good day

A summer rain showered down yesterday with almost tropical force. I was in the car and decided to get out and let that water pelt on me. It felt incredible, my skin was wet and I was drenched in seconds and I felt elated. The oppressive heat of the day just washed away and that delicious, earthy smell that rain sometimes brings, just filled the air. It was cathartic in every sense. I went home feeling renewed and somehow lighter. I slept so well.

Today I woke up feeling really good. I feel happy and positive. I know that for the time being, a day like today will be rare, but I want to acknowledge it. I walked down to the water this morning and sat by the harbour and felt my son with me. I was overcome with a warm buzz and for the moment, I feel like everything, the future, our lives, will be ok. 

bittersweet goodbyes

It's funny to hear people tell you how well you are doing in terms of grieving. If they only knew....Brave; Courageous; Strong; Proud...Yes, at times I am all these things but I am beginning to think myself a darn good actress, because on the inside, most of the time, I feel like I am chasing my own tail...round and round in circles. I would describe my internal feelings, opposed to the external front I show as...Fretting; Cowardly; Unsure; Timid; Broken; Hollow...

When I look at Tristan's photos I feel my loss so acutely as the day he was born. Knowing that my living son would die, welcoming him with an all too rude awareness of the sad goodbye that would reveal itself, just crushes my soul. Most parents look proudly at their children's photos, reminded of the immense joy they heralded with their arrival. I look with that sense of the bittersweet. Every photo is a reminder of that goodbye.  Don't get me wrong. I love the pictures and relics I have of Tristan. I cherish them with all my heart and looking at them also makes me happy...I hope one day, I will look at them with a wistful acceptance of the hand I was dealt, rather than the distress I have now, wondering why.

I was out and about on Tuesday with my Mum. Tristan would have been five weeks old. Out that day was every other mother that there could possibly be with their own precious five week old sons. In my head I was screaming out to the heavens WHY??? WTF??? WHAT ARE YOU DOING TO ME???  I woke up feeling good and then braving the outside world,  it felt like my nose was being rubbed into my loss. I felt so ill. Sick to the core. It was also the day that I went to the post office to pick up that item of registered post - the death certificate. I haven't yet received Tristan's birth certificate, but everywhere that day, the universe reminded me that my son was dead and that I was a mother without her baby. 

The practical

I have been focussing on many practicalities lately. The plaque for Tristan's grave...oragnising paperwork, filing, sorting and reordering my shelves, etc. All the things which serve as a distraction for channelling my thoughts (not really energy). I feel like I am making more of a mess than really resolving any storage issues. I have all these intentions about clearing away and throwing out those bits and pieces I haven't even acknowledged for the last X number of years, but I am not really having much success. I just seem to get lost in the piles and then move them from one room to the next. 

We went south to Melbourne for a few days last week - to get away. Almost everyone had been telling us not long after Tristan died that we should get away - it would be a good idea to get a change of scene. We agreed and initially thought that we would take our new big baby car on the trip - now that its purpose had been diverted and that we would head off sometime in the early new year.  How brave and big we talked. As the days past new year ticked by, we really hadn't spoken about what we would do about the trip. The reality for me was that taking that big car on the road was frightening. It was a commitment to move away from the security of my home. My home has been that refuge for us both to hide out - ignore the phone ringing and just wallow. The nine hour trip from Sydney in the car seemed all too much, because I could not cross my arms and blink my eyes like Jeannie and be home in an instant if I wanted to. We came to the conclusion that it would be best to fly down and leave our end date open, because knowing that I could get on a plane home with a moments notice made me feel secure.

So we jumped on a plane and braved a border crossing and left our little world and cave behind. For the most part, it was a good trip. We did a lot of walking - a huge deal for me, given that I am still recovering from the c-section. We dined out and drank wine. Saw friends and family and shopped. 

Shopping is a depressing activity for me at the moment. I have this body that is almost back to where it was, but not quite and nothing to show for those nine months of stretching and popping, my war wounds and poochy gut. So what I see in the mirror is a miserable, out of shape woman and I pity myself. I am disgusted in myself that I am filled with self-pity in moments like that. That I allow myself to further feed that grief with another reason as to why my life totally sucks, but I cannot help it.

Coming home was like waiting to exhale. It was relieving. There is something to be said about the comfort of your own home and whilst I had some happy moments in Melbourne, I was so glad to be home. To be back in the cave.

Breast milk, blood, tears - my body is weeping

The overall excitement I felt, about being a family and of Tristan's debut, was so intense and childlike in the way it made me feel. When you are a child you can be infatuated with the romanticism of magic and all the wonderment that it brings with it - the mystical, conjuring up the flutterings in your heart and hope in your imagination and an innocence of the belief in your dreams. And that is how I felt. There was so much anticipation around the arrival of Tristan. The joy that this new baby would bring, as well as the endless curiosity...Would the baby be a boy or a girl? When would the baby arrive and the speculation our family and friends had around which name we would choose. I harboured a hope that he would take after me and be punctual and efficient, arriving on his due date, or even before. But proudly, he takes after his Tata - independent and working to his own schedule. I was induced, spot on 41 weeks. I have come to think that Tristan must have known of his destiny and the aching that it would bring and that is why he tried to spare us the pain and stay on the inside, where it was safe. 

I have, over the course of the last weeks, done extensive reading on the condition that affected Tristan, to try and understand the science behind our tragedy. The condition means that some of the vital blood vessels that are carried from the placenta through the cord were sitting within the membranes, where as the membrane should be completely free of the blood vessels. It happens from the moment of conception and is virtually undetectable through the standard testing methods. Doctors would only look for this if you presented with particular symptoms. The mortality rate is 95-100% if labour proceeds as nature intended. If detected prior, a planned c-section would circumvent this (as long as your waters do not break). It means that when your waters do break, the baby's blood supply is cut immediately and they bleed to death, even with a perfectly healthy baby, as Tristan was, in utero.

Fortunately, my waters broke in hospital, with my obstetrician right there. Unexpectedly, I started to haemmorage (well, my baby did) and was quickly taken to theatre for an emergency cesarean section. My boy had lost a lot of blood. Whilst he was revived, he suffered three cardiac arrests and was given two blood transfusions, but the haemoglobin's would not take. The medical staff tried for several hours to fight for his life, but to no avail. Once they stopped, they passed him to us, thinking it would be only a matter of an hour or so before he passed. My little boy lived for 25 hours after his birth. His heart and lungs strong, but unable to escape his fate. It is so cruel.

I want to talk to him. I want him in my arms. I want to memorise his face all over again, whilst in my arms. I want to look over at my two boys again, like that day and night, where one is in the arms of the other. That vision is forever imprinted in my mind - looking over from the hospital bed, in that delivery room, to my husband and son, entwined in each other, sitting on that chair, the low glow of the back light of the room. Watching them all night, not wanting to miss a moment. Drinking in the sight with a sad realisation of the precious nature of those hours. Wanting to only focus on the happiness of that impossible situation, trying to push away those heartbreaking, aching urges until it was the right time - not to take away from the moments of life in his little body, that was gifted to us for that brief day.

In fleeting moments, I wonder whether I was really pregnant or whether it was just a concept in my mind and even more, that he didn't really enter and exit this life in the briefest of timings. That I will wake up from this horrid nightmare and everything will be as it was. In a book a grief counsellor gave me Stillbirth and Newborn Death there is a quote from an un-named mother who expressed so succinctly the same sentiment I have been feeling these last three weeks..."Breast milk, blood, tears - it was as though my whole body was weeping." This has resonated so deeply with me.