September, nine months on

People often hide their grief away, but I have always been open with my emotions and it feels like I am living a lie by not expressing myself.  We have a very unhealthy relationship with grief in the West.  It is a fact of life, and no matter how much we try to ignore it, all of us will experience the death of someone central to our lives at some point, and for me, hiding myself away only makes it harder.

I decided to start my blog this month.  Until now, I’ve been unsure about sharing my feelings, which are sometimes difficult to admit.  Grief can make people behave in strange ways and I really don’t want to alienate myself from others in sharing all my thoughts, but I already feel alienated, and at times feel so alone.  Very few people have stayed in touch like they did before.  Some people have really surprised me in this regard, and I wonder if it is because I need to reach out to them and share what I am feeling.  A few people have been incredible with us and without them I don’t know if I would still be here.  You have no idea just how much a simple text to say you were thinking of us, and other simple gestures have meant to us at those really, really difficult times.  I hope those special people know who they are.  We realise that others just don’t know what to say or do a lot of the time, and after losing James the last thing Mark and I need is to drift further apart from those we know and care about.  I know the friends and family who read this blog will be doing so because they care about how we are and how we feel.  We know there is nothing you can do to bring us back our baby, or extinguish our pain, but it is healing for us to talk about it with you, even just a little.

Until we lost James we would have been the same, not knowing what to do or say, being in fear of saying and doing the wrong thing.  There are many misconceptions about loss and bereavement by those who have never gone through a devastating loss.  We know this is difficult for you, but going through grief is even harder.  All too often the fear stops us from doing or saying anything, and really this is a mistake.  There is no instruction manual, and unless you have experienced crippling loss yourself, there is no way to understand it.  Surprisingly it is often the people closest to those bereaved who are the ones to back away.  We don’t want to burden anyone with our grief;  it is hard to know who to turn to at times, and so I am sharing my feelings with all of you who would like to know:

 

The brief version of how we feel about James – He was our wish come true.  It is a cliche, I know, but he was.  We had everything we needed in life, but what we desperately wanted more than anything was to become 3, and our number 3 was our darling little James.  When I became pregnant with him it felt as if we could finally move forward with our lives, which had felt stagnated for a long time waiting for a pregnancy to happen.  Infertility is such a hard disease.  It affects every aspect of your life; you can’t plan your future at all.  Following month after month of failure to conceive I began to doubt that we’d ever have a family.  I was doubtful that the IVF would work, but to our amazement it did, and on the first attempt.  James finally made our lives complete.  I have never been happier in my life than during the time I was pregnant with him.  Our future seemed so full of hope.  The day he was born was the best day of my life.  James was ours and he was more amazing than I thought possible.  It felt incredible to find out at long last that we had a boy, and we fell in love with him instantly.  I recall that day in a hazy blur of wonder, relief, sadness, but mostly unequivocal pure love.  Spending time in James’s company was the most amazing experience of my life and I can’t even begin to describe the emotions I felt at holding him in my arms.  It warms my heart to think about it.  He is the most amazing achievement in my life by a long way and I feel so proud that such a sweet little baby was ours.  I love him more than I thought possible and I always will, and I am sad in equal measure that he is no longer here.

How we feel about losing James – It felt like the rug was pulled right from under our feet when we lost him.  Suddenly our dreams were over, and it all happened incredibly fast.  We were in complete shock for around a month, well after the funeral took place.  We couldn’t believe what had happened to our baby after everything was going so well, and even now it is hard to believe the cruelty of it all.  We were told that James was absolutely fine all throughout my pregnancy, and after we reached the viable stage we believed the NHS would do everything it could from then on to ensure the survival of our baby.  We feel incredibly naive about antenatal care now and are very angry.  We had never known anyone to lose their baby at full term, and thought that it was unlikely to happen to us.  The first few weeks after we lost James were completely bewildering.  Time played tricks with us.  The days went by slowly, but the weeks were rolling by.  It felt like we were in a strange dream.  Mark was numb, and I was sad and also in shock.  My baby had suddenly left my body but wasn’t in my arms.  The counselling we had helped us to come to terms with our loss, to find ways of expressing ourselves and understand our feelings of grief, to help us find ways to cope and find our way forward, and without this our lives would be even harder, but it wasn’t the magic bullet that would put everything right.  There isn’t one.

We have lost the only thing that was truly important to us.  Nothing in our lives comes close to James.  If Mark lost his job, if we lost our home, our most treasured possessions, we would get over it in time, and they would be replaced to some extent, but James is different. We will NEVER get over losing our precious James.  He can never be replaced.

James was an individual.  Even identical twins have separate personalities and will lead entirely different lives, and there will never be another like James.  We can only wonder what he would have been like.  What colour would his eyes have been?  Would he have changed and looked more like Mark as he grew?  Would he have been a good sleeper like me, or woken us up throughout the night?  What food would he have liked?  What would his favourite subjects at school have been?  Would he have been imaginitive and creative?  Would he have been funny and witty?  What would his friends have been like?  The sad thing is we will never know.  We wonder also about the life he would have lead, and the people he would have brought into our lives – friends, his girlfriends, or even boyfriends, extended family, children?  He might have become a loner, but if that is who James wanted to be, then that was fine with us.

There is so much we don’t know about him, and this is hard.  When I am not feeling sad about him, I like to daydream and imagine life with him.  I imagine what he would look like now, how he would be behaving, and imagine what I would be feeling too, witnessing all this and interacting with him.  I know James would have had his very difficult moments too, but the good would have outweighed the bad for us a million times over, as we would know know how lucky we were that he was here.  I’ve read that parents who have lost children often feel like they live in two worlds, an imaginary world where everything had turned out better, and the real world we are in.  This is a coping mechanism because we don’t always have a bank of memories to draw upon.

Thinking about what James is missing out on makes us incredibly sad, but the mention of his name fills our hearts with love and pride.  It hurts that most people never mention him, and especially when there is the chance to.  The one thing that would help us most is for others to say his name and acknowledge him.  It doesn’t matter the context.  To know that others haven’t forgotten about him is the most valued support we can receive.  Even though he has died, James has not disappeared from our lives.  He is with us all the time, in our thoughts.  We can never forget him.  Every time I pause, I think of James.  In fact I wonder these days what else I used to think about.  Remembering James is the best thing we can do to help ease the pain of our loss.  By remembering him it feels like he is still with us, which is where he should be.  We visit James’s grave and talk to him there every day.  It may seem strange, but for now it brings us comfort, and we want to share our lives with him.  We take a flower to him each day, and sometimes trinkets from days out.  It is one of the few things we can do for him and we enjoy looking out for bits and bobs when we visit places.  This is one of several ways that we encorporate him into our lives and deal with our loss.

How we are – Our hearts have been shattered into a million tiny pieces and it is taking time, a long time, to piece them back together.  James was a part of us, and it feels like we lost a part of ourselves when he died.  Nine months in we have more better days now, but we still have some very bad ones, when the longing and sadness is still overwhelming.  We have found that as time goes on, the good outweigh the bad, but our bad days can sometimes feel as intense as they were at the start.

The grief that we feel is unlike any other grief we have known.  Just because James was in our lives for a short time doesn’t mean that our loss will soften quickly at all.  I thought I knew what it was like to lose someone, that I understood what they might be going through, but I really had no idea how devastating it could be until I lost James.   Losing a child is the greatest tragedy of all because they will never have a full life. We have lost so much with James that we can only imagine.  We have lost the future we could have had together.

We are still finding out our limits and trigger points all the time.  We have yet to find our “new normal” because we never know what we can handle at any particular time. One thing we have found is it is difficult for us to be in each situation for the first time since we lost James.  Visiting places we have been to with James can sometimes be comforting, and at other times I have to hold back the tears, and doing things for the first time and seeing people for the first time can be equally unpredictable, although I have never cried at seeing anyone.  Our experiences are becoming more varied with time, and we are getting to recognise our limits.  Anyone who has experienced trauma may identify with this.  It may seem overdramatic, but this has been the stark reality for us.  We are largely open to these new experiences, but it can be difficult for us sometimes, and we may not show it.

Seeing babies and young children is really hard for us too at times, and we try to avoid situations where we see babies and children we don’t know.  We would be inhuman if we weren’t to feel anything.  Our grief has changed over time and will continue to change. Recently I have started to feel enormous jealousy at seeing mothers or fathers with their babies and little children when I’m not prepared for it.  Walking down the street is hard because of this, and I have to look away.  Facebook can be difficult too, so I try to brace myself before I check new posts, but even still it catches me unaware sometimes, and it makes me cry thinking about James and not being with him.  It is strange, but when I am prepared to see other babies and children, I don’t feel jealous, because I know that they aren’t James, and I can’t love them like I love him.

One thing we learnt early on in our grief, is that sometimes we need to put our feelings and needs before those of others.  It might seem like we are being selfish, but this is not intended to hurt you; it is a way to protect ourselves from further harm.  It is all too easy for us to feel pain, and guilt, and other forms of grief, by trying to please others and fit in with them, and we are harming the healing process by putting ourselves in situations where this can happen.  As we heal we hope to become less selfish.  Please be patient with us.  One day our lives might seem a whole lot brighter and we hope to be there for others, but right now we need to find a path through our loss, and self preservation is needed at times.

We wish we didn’t have to experience becoming parents in this way.  My only experience of becoming a mother is to a baby I will never see again.  James’s photos, videos, lock of hair, hand prints and foot prints, the few things that touched him and our memories are some of the only reminders we have that he was here.  The pain of this is impossible to describe.  Despite this, I am incredibly happy and grateful that James came into our lives, and I would not change the fact he did for one second.

Some things can be hurtful.  Belittling our grief does further harm to us.  It questions the importance of James to us, the value of his life, and the love we have for him, which will never die.   There are so many platitudes about death which are also harmful.  The very worst of these for me is “everything happens for a reason”.  Sometimes bad things happen and nothing better will ever become of it.  Those people that know what really happened to James have never said them to us, and we have been lucky in this regard, but there are many misconceptions about grief which cause further harm, such as the belief by some people that we will “get over” what happened to James eventually.  We have learnt that with great loss you never get over it, but you learn to live with it, and it is going to take a very long time to learn how to do this.  James’s death was avoidable, and for this reason it will probably take much longer.  There are some fantastic resources out there to learn what to say and do, and it’s not difficult to find them:

the-nicest-thing-to-say-or-do-after-loss/

6-things-never-say-bereaved-parent

I am planning to write a monthly account of the past few months on this blog for others going through a similar situation to us.  Our hearts can never be whole again, but there are glimpses of hope, and I have learnt much along the way, which others may find useful.  In the first few weeks I experienced complete and utter despair, and didn’t want my life to continue without James.  There was no joy in life and no sign of hope, and I thought I would never feel any happiness again.  I still have incredibly hard times some days when the despair and longing returns, but there are other days when I can achieve things, and instead of feeling crippling sadness it is enough to feel that James will always be by my side and he is only a thought away.

Nine months on, Mark and I are living without James every day and we are very aware of this.  We look to ways we can celebrate his life and include him in ours.

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