Winter ONEderland… Happy 1st Birthday Winter

This week marks a whole year of Winter being out the womb and in the world.  What is, for parents of living children, a time of great excitement and celebration, can be a time of huge anxiety, pain and sadness for those of us amongst the infant loss community.  Whilst for many, the first birthday represents a year of achievements and memories made with loved ones, for me it represented a whole year since I last held my baby boy close to me.

The build up to the day was genuinely terrifying and filled with high levels of anxiety which are still lingering now, despite the eventual success.  I had no idea how I would feel on the day, I was afraid that my emotions would swallow me whole and the pain I experience daily would sky rocket out of control. I was still coming to terms with my latest miscarriage and the crushing disappointment that my dream of a rainbow baby was not yet in the making. My safety net of a happy pregnancy had proved whimsical and unreliable and I was instead expected to celebrate with both empty arms and empty womb.

But I knew I had to gather this strength yet again, I couldn’t let Winters special day slide past with no cake, balloons or happy birthday sing song.

We decided early on that we would throw a big party, include some fundraising and celebrate our boys angelic accomplishments as much as possible.  It felt to me like the right thing to do for us personally.  At a time when I was feeling my sons absence the most, I wanted to draw myself closer to him, I wanted to play pretend, to feel like a real life mother and dedicate time and effort to arranging a whole day just for our deserving baby boy.

It wasn’t without challenge.  I was exhausted and tearful.  At times my strength escaped me.  We went to buy balloons and I was feeling excited at the thought of collecting my sons giant foil number one balloon, Dean and I decided to make a day of it.  But as soon as we found the birthday boy aisle emblazoned with the slogan ‘It’s fun to be 1!’ I exploded in tears and we left.  When we did finally pick up the balloons I was so pleased with them I grinned from ear to ear and we laughed trying to get them in the car.  Once we got them home and I carried them up to Winters room and I said out loud ‘These are for you…’ I noticed the stillness of a nursery without a baby, and I found myself again in tears.  Balloons with no birthday boy to show them to. And so the pattern of rise and falls and rise and falls continued, every moment was bittersweet, every victory was mourned, every joy swamped in heartbreak, a constant battle between my excitement and my grief.  A cake baked so lovingly but with no one to blow out the candles. A birthday wish with no one to grant it. A card filled with heartfelt words that would never be read.  Preparing for his birthday felt like intense ‘face your fears’ style therapy, I so desperately wanted to give him a day he deserved but in the process I was forced to confront difficult emotions head on. I couldn’t fold up and give in to them or else the party wouldn’t happen.  My strength came from wanting to celebrate his birthday more than I wanted to curl up and cry.

As much as I prepared busily for a birthday full of love and celebration, I also felt intimidated by the anniversary of his death the following day, gently referred to in this world of infant loss as his ‘angelversary’. I was very aware that the high of Winters birthday party would be quickly chased by a low.  A kind of post-Christmas season blues on a more intense level.  This was a little rain cloud that lingered visibly over our birthday plans.  And after his birthday party passed, then what?  Where would I focus my homeless love then?

Finally, a pressure to begin to move on weighed heavily on my shoulders.  A year after losing Winter, at a time when his birth and life is more a part of my past than my present, sayings such as ‘the first year is the hardest’ played on my mind.  Would I be expected to heal now that the ‘hard part’ was over?  Was I expected to feel better now I was entering the ‘easy part’ of grieving my baby?  Looking back over this past year, when I had only just lost Winter and this baby loss world felt so new and bleak, I think even I was guilty of looking at angel mothers a year ahead of me and thinking ‘well they must feel better than I do right now…’.  It’s times like this that I realise just how much I have learnt over this past year.  No, I don’t feel better actually. And I accept that now.  My grief is eternal, I will never recover from this loss, I will always be a bereaved mother.  I suppose I’m just beginning to get used to life without my child.  When Winter died I thought his first birthday would never come, it felt forever away.  And now it’s here and gone. But it is still very early days, one year down, the rest of my life to go.

It turns out that his birthday wasn’t as scary as I imagined.  It was a whole day dedicated to Winter, surrounded by family and friends, swathed in love.  So many people who remember and think of our little boy, all pooled together to celebrate his life. I spent the entire day feeling as proud as punch.  I was afraid that the passing of time was pulling him further away from me, but in fact I felt closer to him that day than I have for a while.  We released balloons, we sang happy birthday, we cut up his cake, we collected funds and gifts for the hospital in his memory, we shared his newspaper clippings and heavenly achievements, I smiled all day at the thought of Winter watching the celebrations unfold, it was one of the best days of my life.

And his angelversary was survivable to.  We ate pancakes, we opened gifts, I had a cry and took a nap, we went for dinner together.  We took the collected gifts to the hospital, we gave one birthday cake to my family at the Buddhist center and another to the nurses on the neonatal ward who cared for Winter.  How did I feel? Gutted, heartbroken, deeply sad, like a piece of me is forever missing.  But then I feel like that a lot anyway, so it was a familiar feeling and not at all the crazy distressing day I had conjured up in my mind.  We held his heart urn close and talked about our baby boy. We were reminded that in order to die, you first have to live, and Winter lived safe inside me for nine months and in our arms for a day.

I was listening to a podcast the other day where scientists and astrophysicists debated the possibility of time travel, and when describing what ‘time’ actually is someone said  ‘Time is a perimeter that measures change’.  Isn’t that crazy, that’s what ‘time’ actually is.  I wrote it down straight away.  We put titled markers on time as humans.  One year, 365 days since my son was born.  The Earth has circled the sun in one whole swift lap with him missing from it. The movements of the universe offer us these markers and we gather them into calendars and title them with importance. 365 days and I miss my son.  But 369 days and I still miss him.  I missed him at 300 days and I’ll miss him at 400.  The big scary ONE YEAR mark is just as big and scary, and entirely survivable as any other monthly, weekly, daily mark.  It kind of feels like less of a terrifying deal when we consider that.

I thought that Winters birthday would mark the end of something, like the last step in a journey.  I was expecting a physical crescendo, a grand finale.  But I realise now that our story is not finished yet.  And it won’t finish when we have another baby or even a house full if I’m lucky. In fact, Winter proved that your story can outlive even your death.

This time just over a year ago I was pregnant and excited.  I already know now just how much can happen in one single year, so I suppose I am just wondering what this next year will bring us.

Happy 1st Birthday Winter, the weight missing from my arms, the occupier of my heart.

 

The Brief Life of Baby Coconut

It appeared that our time in Sri Lanka had gifted us another rainbow.  Everything pointed to a fairytale ending.  We had lost our little boy at one day old, we had suffered a further miscarriage, we had eloped and married on a beach to celebrate our sons ten month mark, we came home pregnant and our happy ending was in touching distance.  What a story. Third pregnancy, third time lucky.

From the very beginning it was a delicate pregnancy, but a scan at five weeks showed us a beautiful little blob growing happily in Winter’s old home.  We declined a picture, I was too afraid of becoming attached to the idea of having another baby, something I regret now.  My doctor advised me to take time off work and rest, I was very anxious and experiencing some fragile symptoms.  In the beginning the days were long and terrifying.  I put my grief for Winter on hold, I couldn’t think about how that pregnancy ended and I was too scared to even cry.  I didn’t dare move and I hardly dare think about the tiny life inside me. I felt haunted by our previous miscarriage and desperate to pass the 12 weeks mark, googling any twinge or symptom. I lay as still as a stone and scoured the online forums for positive pregnancy stories. I constantly imagined my growing happiness being stolen from me again, every minute was torture.

I tested every single morning and lined up my strong results in Winters room for confidence.  I was delighted when the sickness started, every forum and online chat room confirmed that this was a really good sign, so I threw up smiling. Slowly we began to have faith.  We nicknamed our blob ‘Baby Coconut’ after the tiny coconut we found on the beach in Sri Lanka and brought home with us. We opened a fortune cookie that proclaimed we would have a daughter. Talk of the future crept into conversation, Christmas would be so happy this year, first kicks would arrive around Dean’s birthday. I tentatively downloaded the pregnancy app to track our progress.  I peeked at my little bulging belly and started to feel excited.  I dreamt of our announcement. Our hope grew each day.

I miscarried at 6/7 weeks during the night. I physically howled in sadness of the pain of yet another loss. The scan we had booked the next day to check baby’s growth instead confirmed we had lost yet another baby.  I deleted the pregnancy app and boxed up my positive tests.  Over.

I don’t really know why I have miscarried twice in a row after a healthy full term pregnancy that also ended in loss.  I don’t really know why I can’t ever keep any of my babies.  The hospital offered to investigate if I miscarry a third time, a thought that feels entirely unbearable.  I feel absolutely out of energy, defeated. I feel very sad about it all. Did you know that the chances of miscarrying twice in a row is less than 2%?  And I can’t even find a statistic to tell me what the chances are of a baby stopping breathing in the delivery room following a healthy pregnancy and labour.  But whatever the chances, I find myself amongst both statistics.  Infant loss and multiple miscarriage, all in one heart breaking year.

Once again my grief for Winter is magnified and with his first birthday fast approaching I find myself missing him more than ever, and so I am pouring myself into birthday party preparations.

I wish he had lived and none of this misery would have existed.  But here we are, holding on tightly to that thin thread of hope.  Can’t give up because then we will never have a living breathing baby that we get to bring home and watch grow.  Maybe fourth time lucky.

We’ll get there.

One day.

Good Grief

Ten months into this baby loss business, and I am suddenly struck by the shift in attitude to my grief.  What was once an outpouring of support and “you’re doing so well’s” has hardened into confusion and murmurs of “perhaps you should get some pills”.  But what I am experiencing seems to be shared by others grieving a loss – a child, a husband, a parent – and so it appears to be not the fault of any well meaning individual, but rather a miseducation of grief as a whole in our western society.

Firstly, I have to stress that I am surrounded by immense support, I’m blessed to have an incredible network of family and friends and the ongoing outpouring of deep love for our son is breathtaking.  Secondly, this blog post is not intended to rain judgment on those who are feeling just as confused about my grief as I am myself.  I understand with all my heart that even my own personal expectations of grief have shifted dramatically over the past ten months, I realise that I was clueless to the pain before losing my little boy and most likely spoke all the words and carried out all the actions that I now find so difficult to receive myself.  But seeing as I’ve now lived and continue to live with the heavy weight of grief, I felt like I could share my thoughts, a little act of ‘pass it on’.

In the very early days, my grief was raw yet gentle.  I would fall asleep crying and wake up crying, but ultimately I was protected by shock and disbelief.  Looking back I can see that after nine long months of preparing for a baby who came and went in a single day, I spent the first few months still feeling as though I was pregnant, still waiting for something, still in limbo.  Those early days of grief were devastating and proactive all at the same time, I was both heartbroken and motivated by my love I had for my invisible son.  SO MUCH LOVE and nothing to direct it at, fundraising, returning to work, talking about Winter all day everyday, that is where I housed my homeless energy.

And in the beginning, when it felt as though I was living someone else’s story, everyone was there ready to help.  They spoke Winter’s name, they expected my tears, they brought flowers and cards and said “call me anytime!”

And these days, those people are still there for me.  But time changes people’s perspective of your tears.  Misled judgements and opinions on ‘how you’re coping’ are crushing and isolating.  Why are you still feeling tearful?  But you just got married, why are you sad?  You’re struggling, I’m concerned about you.  Have you considered anti-depressants?

These are my loved ones and they care about me, so I focus on the intention and dismiss the delivery.  But perhaps they are lucky enough to have never experienced such a huge loss themselves and find themselves confused, bewildered, ill prepared to support their friend and deal with the long term sadness that comes with the death of their child.  And had Winter lived, I would find myself lost with them.  But he died and so here I am writing about my grief and hoping that it might provide a little helpful insight for those trying to be a good friend to an angel mother, and those angel mothers trying to be a good friend to themselves.

Here’s what I have learnt about infant loss and grief.

Firstly, my child died, my CHILD died. That is a huge, huge devastating event.  Controversially I don’t believe that what happened to me personally is the absolute worst thing that can happen to someone. I see stories in the newspapers everyday about someone’s son or daughter being brutally murdered, whole families wiped out in natural tragedies or children living and dying in warzones.  Winters beautiful brief life and peaceful death in our arms, brought with it happiness amongst the sadness and therefore I don’t feel entitled to everlasting sympathy.  But I do feel that it is difficult to understand the enormity of losing a child and the impact that has on you forever.  A stillbirth, a neonatal death, a death of a toddler or a seven year old.  They are all child loss.  Absolutely worlds apart in experience, and possibly pain (I can only speak from my own personal experience) but still all child loss, none-the-less.  Just because Winter lived only for one day, does not mean I don’t love him as my CHILD as well as my newborn baby.  Had he been one day old and someone asked if I had a child, my answer would have been yes. I would be ticking that box that asks if you have children rather than hovering over it and wincing as I have to tick no, no children, none living. I’m grieving my baby, I’m grieving my CHILD.  Not just someone I had for one single little day, but my much wanted little boy, grown for nine months, breathed for one day, loved forever.  I’m grieving his lost life and our lost future.

Secondly, there is no such thing as a grieving period.  I think we should all just rub this phrase out the western dictionary and be done with it.  This idea that when someone dies we grieve for a bit, feel gradually better and then heal is painfully misleading and only reinstates the false idea that grief can be jotted into a calender, charted, arranged into phases and neatly wrapped up in a pretty box with bows.  Grief lasts forever, because love lasts forever, and you grieve those you have lost and still love.  That doesn’t mean that in twenty years I will be in bed sobbing uncontrollably for weeks on end because I’m grieving my son, but then again, so what if it did?  I’m grieving all day everyday, I grieve when I cry on the kitchen floor and I grieve when I laugh with my friends. I will grieve for my son for as long as I live.  If you are wondering why I am still feeling sad, then please understand that it is because, simply, my baby died and I miss him.  I miss not just that one day we shared, but I miss his first smile, his first laugh, his first steps, his first day at school, his first partner, his first very own child.  I barely cried at my sons funeral, instead I felt full of pride as though I was showing my baby off to all those who came to say hello and goodbye, yet just the other day I spent the whole day in absolute tears.  Am I going backwards? No.  Each different day brings with it different emotions, different experiences.  When Winter first died my emotions were mainly ‘missing’ and ‘loving’, but over time grief becomes much more complicated, friendships are challenged, relationships can become strained, family celebrations and life events become minefields for emotion explosions.  Just like we cannot go through life in general without changing emotions and ‘good’ days and ‘bad’ days, so grief can be unpredictable, and anything but within a certain period.

Thirdly, I’ve learnt that this ongoing grief can be uncomfortable for others to witness.  We have a need to fix it, grief is seen as a problem to be solved.  But you cannot solve a broken heart just as you cannot replace a missing loved one.  There is no solving grief, there is only experiencing grief.  Whether you are the person grieving or you are the person helping the grieving, it is all an experience.  We’re all in this life business together, so we just have to help each other out as much as we can.  We can’t shy away from the grief of others, it can be ugly and painful to witness but it needs to be seen to keep us connected to our mortality. And grief can be beautiful, after all it is a side effect of love.  I often sense that people feel as though they are running out of things to say and advice to pass on, but grief is repetitive and relentless.  I have spoken the same words over and over to my own mum, and every time she just sits and listens, and really that’s all I want I suppose, to be able to free my mind of all my squashed in jumbled up thoughts and relieve my heart of a little pain, to say his name and be Winter’s voice as well as my own.  I don’t expect anyone to heal me, that is impossible, I just want the gift of time, patience and a listening ear.  Life will always involve loss, but we can use our humanity to ease it a little and hold each other up rather than take the easy option and just pretend it isn’t happening.  We will all lose a loved one eventually, such is the nature of this life.

Lastly, and this is a little piece of advice to myself as well as other grieving parents, strong and weak do not need to be mutually exclusive.  Too many times I have heard ‘you’re so strong!’ when I’m fundraising and writing a positive upbeat piece only to be met with ‘I don’t think you’re coping well at the moment’ when I am feeling emotional.  Crying, screaming, sobbing, holding my baby’s empty clothes to my chest, clutching his photographs, these are moments of strength too.  This is not a weakness.  Confronting grief with all its harsh realties is strong, feeling weak is strong, accepting our human emotions and letting them drown our bodies is strong.  My little boy is important to me and I cry for him, he is deserving of these tears.  I may get up in the morning and cry as I eat my breakfast or drive to work, but I am getting up in the morning and going to work, and there is strength in that alone.  When your child dies, just living takes strength.  Go easy on yourself and those around you trying to help, after all, when your baby dies, no one knows what the f*** to do because it’s not supposed to happen in our perfectly planned out lives.

There is a saying, ‘Grief is the price we pay for love’ and I would grieve a thousand times over to keep this beautifully fierce love I have for my son.  It is just my hope that my loved ones will keep a little patience for me and pass it on to others who are grieving.