Monday, 30 July 2012

Nicole: The Power of His Name

Clara's wonderful post and pictures got me thinking about how important it is to see and hear our children's names.  When my son Xander died, it wasn't long before I started to want to get his name out there into the world.  A plaque and rose at the cemetery, his name in the baby memorial book, a plaque at a woodland that my mum arranged, his name is even included in the notes of a friend's PhD, as she focused on stillbirth in literature - I was greatly moved by this gesture from someone I hadn't seen for years.  So few people mention him by name now that when they do I could weep with gratitude.

So why is it so important to me?  I think it's because that without us writing and saying his name, he has no way of existing in the world.  His short life had such a massive impact on me and his dad, but like ripples on a pond, that impact lessens as it spreads out.  We have to say his name, because he can't say it himself.  He'll never learn to write it.  He'll never have his name read out on the school register.  He'll never have it written on a certificate for something he's achieved.  He'll never have someone write it on a school textbook, encased by a love heart.  He'll never have me shout it to call him in for tea.  He'll never tell me that he hates it, and wants to be known as Alex from now on.  He'll never have it read out at his graduation.  He'll never have a lover whisper it softly, or scream it at him when he's upset them.  He'll never give his middle name to his eldest son, as his dad and grandad did.  He'll never have someone say 'that Xander, he's a  good bloke', or 'that Xander, he's a complete shit' (for I'm realistic that either would have been possible). 

A mother who has a living child eventually lets them make their own way in the world - they will make their own mark, their name will ring out in whatever way they make happen.  But for Xander that isn't an option.  His continued presence in the world lies in my hands.  It's a show of my love for him to keep his memory alive, to have his name heard.  I do it willingly and lovingly. My service for my son.  Alexander Marshall Kirby. 

Sunday, 29 July 2012

Fliss: Right Where I Am 2012: 4 months 2 weeks

Fliss and her husband found out following the 20 week scan that their daughter had Edwards syndrome and was destined not to stay with them. The rest of the pregnancy was hard to say the least but they don't regret it. Ayla Hope was born 40+6 on 1st February 2012 and took her last breath in her mummy’s arms on 4th February at 9:10pm. 

Where am I now? I don’t know, to be honest.  A state of confusion, loneliness and fear, occasionally hope and positivism.  Desperately trying to maintain the positive persona that I often feel I am.  The person who has energy, wants to make a difference in the world because of our beautiful daughter, who can play with my son without a wedge of unhappiness stopping me from connecting with him completely.  Does he know I’m not completely there when we play? Can he sense that Mummy’s heart is not completely in it? I don’t know, I hope not.  I feel like I’m a worse mother because of my loss, not a better one.  A more grateful, less na├»ve mother but my patience isn’t what it was, my energy levels shocking and my ability to cry at the drop of a hat quite immense.  My boy wipes my tears away for me now and fetches a tissue, he’s so used to Mummy crying he knows what to do, normally a little dance or something that will make me smile or laugh again.  My heart bursts with love when I think of him and screams in agony when I think of my girl. She should be here with us.

People have told me how ‘brave’ I am, what an ‘inspiration’, so ‘strong’.  Like I’ve chosen to walk this path, suffer this pain and forever have a hole in our family where Ayla should be.  I’m not any of these things, I have no intention of inspiring others, I often hide from the world; that’s not brave or strong.  I am simply a Mummy.  A Mummy who loves her children more than words can ever describe.  I remember when I was pregnant and we knew our daughter was destined to leave us I had to go into hospital with a suspected blood clot (I knew it wasn’t, funny how carrying a baby destined to die but not knowing when can leave you a little breathless at times) a paediatrician saying to me what a brave thing I was doing, I simply looked at her and said ‘I don’t really have a choice do I?’ and she replied ‘There’s always a choice’.  How was there? A choice on how soon she leaves us or how she leaves us, maybe, but the outcome would be the same.  For me, giving her a chance was all I could do; we have memories, photographs and videos of her, mementoes that have to last us forever now, they are all we have.

I feel like a kite, attached to the world by a string. I float above everyone, watching them carrying on with their lives, moving forward and I’m there, watching, I’ll sometimes swoop forward, looking like I’m going somewhere and then a gust of wind grabs me and pushes me back, sometimes I let it, sometimes I try and fight it and I can push against it for so long and it may ease or it can slam me down so hard, so fast I can barely catch my breath.  Then I have to get back up again but I’m not allowed to find my feet, I’m back up into the air to watch and continue my slow, painful, spiralling journey.  What of the people on the ground? Some are desperately clinging to my string so I don’t go too far, keeping me as lifted as they can, calling messages of love and support, but not truly understanding.  Others scuttle by, their heads bowed low so they can’t see me, they don’t want to look up, face the pain, it’s too much for them.  There are other kites too.  Some just bob past, on their own journeys, others become entangled with me and we are bonded through our tragedy, our heartache, our children.  All of them bring comfort for just being there, as much as I hate that any of us are here it is always a comfort knowing we are not alone.  The strength, understanding and support gained from baby loss Mummies is a force so truly immense I often find myself in awe of it all.  How can so much love, friendship, understanding and support come from such pain? How? Our children, that’s how.  Their love for us is all consuming, just as much as if they were in our arms like they should be. As is our love for them.  That love has to continue somehow and we humans have to do something practical, so we extend our love for our babies, our children into other baby loss parents, to reassure they are not alone, what they are feeling is ok and that we are there to support each other whenever that wind of grief slams us so hard we struggle to get back up.  My daughter has taught me so much and brought so many wonderful people into my life, it is an honour to be her Mummy, I just wish she were here with me. 

Tuesday, 24 July 2012

Nicole: When's the right time to drop the bomb?

One of the things that I struggle with is knowing when it’s appropriate to tell people my son is dead, or what I refer to as ‘dropping the dead baby bomb’.  When people ask if I’ve got children, or want me to laugh with them about the indignities of pregnancy, or discuss the  pain of childbirth, I tell them, and the bomb explodes.  It kills the conversation, they look shell-shocked, sometimes they even run for cover. 

Last week I bumped into someone who I last saw a year ago, when I was going on maternity leave.  She remembered me and asked how old my baby was now.  I was unprepared, I stumbled over my words, but replied ‘he would have been nearly a year old, but he died.’  The bomb went off.  Her face fell.  I explained, probably in too much detail.  She said she was sorry, she grasped my hand.  It doesn’t always go like that.  Sometimes people back away, not knowing what to say to me, like they think it might be catching.  Sometimes they rush to say something, anything - ‘it obviously wasn’t meant to be’, I’ve heard, which is one of the worst things someone can say to me, or ‘will you have other children’, like that would negate the loss of my boy.  
At times, dealing with other people’s reactions is harder than living with my own grief.  I don’t like to make people feel uncomfortable, or sad, or scared.  I don’t want to upset them or make them feel unsure of what to say.  I don’t want to get cross with them for their often inadequate responses.  But I can’t deny my son.  I can’t pretend he doesn’t exist, that he didn’t live, that he isn’t relevant. He did, he is.  He’s imprinted on my heart forever and I need to be able to talk about him.  So I go on dropping that bomb, placing it down as gently as I can, and preparing myself for the fallout.      

Gemma: Writing to you...

I still like to write to you Isaac as I have done since we set you up an email account when I found out that I was pregnant; I emailed stories of my excitement and of feeling ill; I remember emailing you after you started to make me ill after I had eaten cheese and cordially informed you that cheese was off limits to the sickness and would be eaten regardless; I no longer email you with a view to one day opening the account with you and reading through all the trials and tribulations which we may have forgotten years later; I have forgotten the address now and wouldn't like to bother Daddy with it right now.

So now I write to and save the letters on my computer and sometimes I write and write and delete them once they are written in a moment of despair; I like to imagine you sitting on your great grandparents knees as they read my letters to you; I have written many letters to you over the year that I have been without you; some pleading for a greater understanding of why you left me and a sign that you are still there somewhere and not lost to me forever, others angry that you didn't fight harder to stay with me and some simply telling you that you are still loved and still very much treasured; I don't know if you can hear me little one but I love you and I miss you every day.

Today is your first birthday Isaac; you should have been one whole year old; full of sleepless nights and mischief and giggles that made us laugh along with you, the day would have started early for you and I no doubt and we would have had to coax Daddy out of his slumber with big kisses and noise; we would have gathered together in our bed that would have been covered with presents from mommy and daddy; I of course would have stuck some horse themed gifts in and daddy would have bought far far too much; gifts that weren't exactly age appropriate but that he would have had as much fun playing with as you would when you were finally old enough to use them. We would have helped you to open your presents and I can imagine you sitting having more fun with the wrapping paper than with any of the gifts that you had received. I can hear your squeals of laughter as daddy grabs you and throws you up in the air and I tut and tell him to please be careful, while unable to hide a smile to watch the two of you play.

You would have had your first birthday party today and the house would have been decorated and filled with streamers and balloons; if I stop and close my eyes I can see just how it would have been, and the atmosphere would have been that of outright joy as I, along with my family delighted in watching you grow. You would have had silly football themed gifts from Pop and your uncles, and designer outfits of your Auntie Laura.

This time a year ago you were born sleeping and the final hope that I had slipped through my fingers; the labour was quick but not at all what I had hoped. I promised you Isaac, that I would be brave and try to stay positive but the last few weeks have been hard and I have relived the loss of you over and over again and Daddy and I have talked and cried and opened up to each other in ways we have been reluctant to do until now. I finally understand that he feels guilty to and I have tried to put his mind at rest about his fears, I don't want him to feel he was to blame, who can be blamed? Me? God? Mother Nature? You? There is no one to blame, you were a star than shone so brightly you didn’t need to burn for long.

Today I am sad; I feel the absence of you so strongly that it makes me want to fall down weeping; however I also still feel you with me and I feel I can celebrate all that you were to me; because above all else I am happy that you were part of us. If the option was to have never had you at all then I will take all this sadness gladly; for it shows that you were loved.

You were made out of such love; your Daddy and I - we had our bumpy rides over the years the loss of you the worst one of all but it is a love that has never given up; a love that knew how to fight to keep it strong and when the worse happened we were able to weather that storm together; to have been made out of such a love I can see meant that you will have only known that - for you there will never have been any worries or doubt or fear; you will have grown knowing that you are loved and perhaps that is all that you ever needed.

I want you to know little man that you are always with me; not a day goes by that I don’t think of you and know I needed you to have been even for a short time. I know that my longing for you is caught up in the need to have a healthy living child here with me, and my guilt at wanting another child makes me anxious that you do not feel you are to be replaced; you will never be replaced.

Today Daddy and I woke to the delivery of a balloon and flowers for your garden; you are still much loved and not just by me. We will go and select a new outfit for Isaac bear and loose a balloon where we walked together as a family and I will light a candle to show you the way home should you wish to look in on us.
Happy birthday Isaac and Thank You for having been part of our lives xx

Clara: Names Out Loud

I was inspired by this post New Meaning to Names Out Loud, written by a wonderful friend and fellow silent mum.

It got me thinking about all the ways I remember my girls and also how great it is to see my girls' names in a variety of places and I thought I would show some of these here.

The day that Claudia wrote her boys' names on the beach in Costa Rica, she also remembered my girls:

My mum had this made for me:

My lovely sister-in-law remembered her nieces in Jamaica:


Pebbles from Perfect Pebbles (you can find them on FB):

My tattoo, incorporating two butterflies for my girls and two stars for my little ones lost in early pregnancy:

A friend who makes jewellery made this for me (Sparkle Jewellery on FB):

Another friend dropped these through my letterbox:

Names in pebbles from another friend and babyloss Mum and pictures painted by  her sons:

On our recent holiday to the Isle of Skye, we also remembered our girls:

I find creating memories and seeing the girls' names in all sorts of places keeps me going and gives me a smile. It is especially lovely when others remember my girls.

Monday, 16 July 2012

Clara: Right Where I Am 2012: 1 year 2 months followed by 1 month 10 days

At this moment, I don't know where I am anymore. Back at the beginning of a nightmare and doing it all over again I guess.

We faced Molly's first birthday in April knowing that her baby brother or sister was fighting a losing battle inside me against the same condition that took Molly from us. Four weeks later, we buried Grace alongside her big sister. I have now lost 4 babies. Molly, Grace and 2 little stars lost in early pregnancy.

So I am back in the early days of grief. Once again, my confidence is gone (although I don't think it ever properly came back after losing Molly). I am afraid to leave the house. I am afraid to face people - they'd rather not be faced with me anyway. A stark, sad reminder of something they would rather not think about. The guilt is overwhelming - I feel like such a failure. I feel that I have let everyone down, especially my husband. He would be a wonderful father. I watch him with my niece, who adores the ground he walks on, and it breaks my heart. Even friends I have met on this journey who have also lost, some of them don't know what to say to me as they just cannot imagine having to live through the nightmare again.

I sometimes feel I am living an out of body experience. I do things, go places but I am not really there. I tune out, I can't always cope. I still don't think I have fully let myself realise that I am going through this again. If I stopped to think, I don't think I would start again. I have become so good at putting on a face. People tell me I am doing so well, that I am strong and brave. I don't feel it.

I try hard to count my blessings every day now. My wonderful husband, our supportive family, my friends, new friends met on this journey of loss, my sands group... I am lucky to have these things. I have met so many brave and inspirational women on this journey who have lost children in many different circumstances and who, instead of drowning in their grief, have used it to support and reach out to other women. This inspires me. Supporting other women in this situation has helped me. I was sent a poem last week written by a mother who lost her child recently and who I had reached out to. Instead of thanking me, she thanked my girls - because of them their mummy was able to offer empathy, support and advice to another bereaved mother. I loved this. It meant my girls had meaning to someone else. Last week also, a fellow bereaved mummy and wonderful friend, wrote my girls' names on the beach in Costa Rica. I love it when someone thinks of my girls, I love to see their names, to hear their names. These things mean so much to me.

My hope is still flickering somewhere and I really don't want to give up but I think another loss would destroy me. Nobody can say to me anymore that 'it'll be alright next time', we lost our next time. I can't give up though, I want so much to be an earth mummy. I don't want my girls to have died for nothing. Without them, we would not have met such inspirational people. People who have now given us access to research which shows a way forward for us. Strong women who, after many losses, now have healthy rainbow children in their lives or are pushing forward with the strong belief that their rainbow is on the horizon. I am trying to cling to this, desperately.

I look out for my girls and I see them... in rainbows, sunshine, stars, little coincidences. I feel them still and, though I miss them dreadfully, I find comfort in knowing that they are still with me in my heart.

A friend once said to me that losing your child was like walking in mud. Some days the mud is thinner and you somehow manage to drag yourself through it. Other days, the mud is so thick that you are stuck and can't move...... the thick mud days hurt your heart even more.

Right where I am... stuck in the thick mud and looking for a way forward.

Gemma: Right Where I Am 2012: 10 months 23 days or 328 days

Gemma lost her son Isaac to a cord around his neck. As she shares, "It's been a hard and lonely road, I must say." 

I had no idea where I was until I sat down and started to write; my son should be approaching his year birthday and instead he is still gone.

I’m not in a very good place at the moment – I have lived through the last year getting through; I keep thinking to myself – I’ll just make it to the funeral and it will get easier, I’ll make it through to the post mortem results, and Christmas, and new year and my birthday and now the next event to live through is next month – the date I found out Isaac had died; literally my life changed forever. At the moment I am questioning the relationship parents have with their children – it takes up lots of my energy wondering about how much is written, how much is an unbreakable bond.

I try not to focus on the bad and instead look at the good things I do have;  I have tried to embrace the spiritual side of life because it means there is a chance that Isaac is still with me in some part, it means the feathers I see are really little signs from him , each day I work on my positive thinking, and I try to be a better person. For example my father told me yesterday to be good to my husband as if anyone loved me more than he did it was my husband – and he really is my rock; I have a lovely family and some really cracking friends – the sort I can really rely on and hope will still listen to me in years to come when I am still grief stricken; and I have my horse who is my delight – I am immensely proud of him as I bred him myself, when I am with him the pain is dampened for a while – it never goes away but it lifts the fog for a time. This is important to me – it fits in with everyone’s wise advise of “Just stop trying/worrying about it and you will get pregnant again” well-meaning people who have never had a child die inside of them and have no experience in what that would mean – how forgetting about it would simply be impossible. However I am working hard to attract positive things to my life, its taking more work than I had hoped to think about good things, I’m finding it very tiring but I know it’s what I need to do. My life hasn’t changed too dramatically which means I have attracted the right sort of friend into my life – that’s a positive, a massive positive and one I am grateful for each day. In hindsight those who have been the best for me  have been friends I haven’t been as good too as I should have – I hope to make this up to them when I’m feeling more together.

I am finding the stages of grief arrive as and when they feel like it and at the moment I’m sitting next to anger, sadness and despair – they are like a dealer I guess  always hiding and waiting to rear their head when I am feeling weak, they visit me often these days and it makes me sad to see them but yet I welcome them in like an old friend calling, I know for me these emotions are all linked to the fact I have been unable to get pregnant again; have discovered un expected fertility issues and these weigh heavily on my mind. Isaac was a miracle baby, he was my personal miracle – its having loved and carried him that picks me up and makes me smile – I did that; I made a perfect little man and yet each day that goes by that I don’t get pregnant I am a day further away from being a mother with a living child.

Much of the time my grief for Isaac is tied into my sadness about not being a mother to a living child, I know that I would cope better if I was pregnant – not that it would replace him but I miss hope – I wish she would visit me again.

I can put on my outfit and get by most of the time, I don’t like to look in the mirror since he died – when I catch a glimpse of myself I feel like I’m looking at a stranger – I just look normal and this always amazes me; to all intents and purposes I can pass 99% of the time for a normal person following my daily routine – no one would know that my child died unless they asked; and they should know, because Isaac – well Isaac was everything to us. I feel quite out of place amongst smiling happy people.

I am a survivor – I have always been one of these people that breezed through life, oh yes I had some disasters along the way but they never really stuck; I was convinced therefore that I would survive this – I would do this the right way – I embraced all the stages of grief and I have grieved openly and fully; it has since come as a shock to me that I’m still struggling – this wasn’t part of the plan and then I’m angry again. I want to grab grief and shake her (grief must be a woman; she is simply too clever and manipulative to be a man) and tell her “look lady, I’ve done everything that was expected of me – I took time off, I read books on grief, I sought support from other baby loss mothers, I’ve publically grieved, I am not afraid to cry or mourn; I accepted that my son has gone and won’t be coming back and I accepted it wasn’t anyone’s fault – not even mine. So cut me some slack and let me get on and heal” but she just waves the caveat that grief has no rules and can raise her head at any time and opens the door to let anger, and sadness and despair in again.

As I mentioned before I am currently fascinated with my relationship with my father who left us when I was very little; I’ve never minded too much about this and I have a wonderful step Dad who I just think of as my Dad; and I never blamed him for not calling as often as he should – I just seemed to accept him for who he was – oh yes my relationship with my father has been a tad tempestuous at times – and yet he has been so insightful since Isaac died – saying to me only yesterday to stop trying so damn hard to be better and that “Only I could imagine that I could get through my grief in Guinness book of records time” and “I spout the right things but I need to believe in them” and I wonder how he knows exactly what I’m feeling even when I pretend to myself ? I wonder if Isaac and I would have had that, or Isaac and his Daddy perhaps?

I wonder about the kind of mother I would have been had I had the chance; I look at my husband and I know that he would have been a wonderful father – a little too soft and easily wrapped around the finger with cute eyes but it would have been the making of him – it has been. I wonder if I would be been short tempered after a million “why” questions and know that next time I will be a better mother because I know what it is like to lose the chance.

Now I just want the chance again.

Nicole: Right Where I Am 2012: 9 months and 4 weeks

Xander was Nicole's first baby, conceived after years of trying, and just when they were about to give up. After an uneventful 'text book' pregnancy, Nicole was nearly 2 weeks overdue when she went to the hospital thinking she was in labour, only to be told he'd died in the 10 hours since they'd last heard his heartbeat. He was born silently on Tuesday 16th August 2011, just before midnight.

Where am I now? Not where I should be. My son should be nearly 10 months old. He should be here in my arms, not existing only as ashes in a tiny box. It’s a funny word, ‘should’. I often catch myself using it - it’s when I temporarily exist in the make believe land where my boy is alive and my life is whole and complete. Where our house is full of noise, and smells, and Jim stubs his toe on the baby things left on the floor. Where the cats run away from our little lovely boy, to avoid getting their tails pulled. Where we’ve had to move things off the bottom shelves and fit stair gates, to keep him safe. This land doesn’t exist. Our house is quiet. The cats undisturbed. Our lives are much the same as before, but forever changed.

I think of him a million times a day. Everything reminds me of him. Sometimes that’s comforting. I can remember the love I felt when he was growing inside me and the joy I felt every day, and I feel warm and content in the memory. Sometimes it’s as far from comforting as it can possibly be. I miss him so much. I ache to hold him and I rush round the house trying to find something of his. But I’m thwarted at every turn. I have nothing that was his – nothing he touched. We bought a soft toy for him after the 20 week scan, and I sat with a couple of times on my bump, telling Jim I was letting them bond. This is the nearest thing I have to something of his and sometimes I sit with it, to try and be close to him. But it’s a poor substitute for a living boy. Sometimes I take the glass off the frame that holds his footprints, and run my fingers over the marks his feet made, desperate to touch something he touched. Nothing quite does it. Nothing can ever satisfy the need to see him, hold him, to mother him.

I keep having to remind myself I am a mother. It’s hard to feel like one when the object of my affection has ceased to exist. I am a different mother to all of my friends. I can’t possible understand their reality, and they can’t ever understand mine. I feel separate, different. I am a freak in a world full of normals. The sense of isolation is enormous.

I would love another baby. I hope that one day it’ll happen for us, but I’m not so sure. It took so many years before we had Xander. Sometimes I think he was our only chance at having a family, and I swear I can almost feel my heart breaking all over again. The road ahead is filled with danger – if we ever conceive again, will I miscarry? Will the baby be stillborn again? Will they die of SIDS? Will they die at age 2, or 5, or 15? The innocence of pregnancy is gone, and I can never feel it again. Sometimes I wish I could see the future, other times I’m glad I can’t – because if I knew more loss of this magnitude was coming my way I think I’d fall down dead. I worry about everyone in my life, especially my husband. If he has a headache, or a cough, or comes home a little late, I’ve half convinced myself he’s gone. I know that having one loss doesn’t protect you from another – there’s an unlimited amount of bad in the world, as there is of good.

People ask me how I am and I say ‘okay’. I’m coping. And I am. I’m not staying in bed, not avoiding the world, I’ve not lost my mind and I’m not trying to kill myself. I’d be lying if I said I hadn’t thought about all of those things, many times. But I get on with life. Hell, sometimes I even enjoy it. I go out, see friends and family - sometimes I enjoy things so much, or I laugh so hard, that life feels wonderful. Other times I am so sad I can’t stop crying. I want to sit very, very still and hope the world goes away, or spontaneously ends without me having to do anything about it. Apocalypse? Deadly virus? Gigantic asteroid on a collision course with earth – bring it on! Sometimes I’m so mad, so filled with rage at the world that I want to kick things over, shout at people, punch god in the face, or scream until I have no voice left.

So where am I now? I am coping. I get by. Sometimes I’m even living. But my reality is forever changed. Nothing and nobody can bring my boy back. I read somewhere that life goes on, but so does death. I know this to be true. I’ll carry the strength of his memory, and the weight of his loss, with me until the end of my days.