Our hearts still ache in sadness, and secret tears still flow, what it meant to lose you, no one will ever know

 

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I’ve been lost for words for the last twelve months. I think I expected year two to be easier, yet it was a hell of a lot harder. The first year I know now was about recovery, rebuilding and healing the body from trauma. It was about digging for hope, finding it in the darkness and gripping onto it for dear life. It was a year of firsts, of social reintegration and making sense of something that was not supposed to happen and that was never expected to happen. It was about trying to be the best mother, the best wife, the best friend, the best family member with very little to give. It was about further losses because some people did not understand we had so little to give. Year one was about survival; hanging on to the deep end and hoping you would not get too tired and sink to the bottom. It was the year Lily went to school and made all her new little friends and in turn friends for me. Year one saw me leave the job and friends I loved to simplify my life and spend more time with Lily. And Daddy as Lily would say. Year two was like the film ‘Sliding doors’ where the plot splits into two storylines, presented as parallel universes, in which different events ensue, consequent upon whether or not the main character catches a particular train. For me, one train was transformational and very special as we opened a wonderful business in our local village and it was inspired by our children. On this train our life is less complicated, a lot slower and time is more plentiful. We get to bring Lily to school every day and three afternoons we pick her up from school. A value that is unquantifiable. We know how important this is for our daughter. Des has also established his own business and is typically flying it. There is just enough chaos for growth.  I couldn’t have imagined being on this train when I think back to that day two years ago when we lost him. We wouldn’t be on this train if Bobby had lived. On the other train there are days of black holes, pain in your heart and a feeling of doom. Quiet periods are not easy, the snow nearly finished me off. There are days of longing and wondering why, why, why? There are months of tests trying to get to the bottom of why. There are days of wondering could we do it again. Could we carry another baby and try to take some of this pain away. There are days when the other losses are very painful also. There are days when you are exhausted, dreams are catastrophic, and the wrinkles are plentiful.  Plane crashes and loved ones dying just to name a few. I’ve learned that this is the path that is grief. There are sliding doors; plenty of them and you hop from one train to the other during the same week, day and even hour. A course in cognitive behavioural therapy was a valuable lesson about irrational beliefs and negative unhealthy emotions. The word ‘should’ needs to be removed from all our vocabularies.

It is hard not to relive every moment. The June bank holiday will never be quite the same again.  The Friday was about broken waters, bed rest and unexpected labour after midnight. It was about speeding tickets and future court hearings and Des being the man he is not saying why. Saturday was about life and death; it was about large teams of people trying to save Bobby’s life. Saturday was about hearing his one and only cry and later switching off his life support and watching him take his last breath. Saturday night was about disbelief and trying to decide what to do about Lily. Sunday was about professional photos from ‘Now I lay me down to Sleep’ and Lily meeting her brother for the first time. Sunday was about family and friends meeting Bobby for the first and last time. Monday was about planning a funeral and Des having to do it all as I was for the birds. Tuesday was about going home with no baby to spend time with Lily cuddled on the couch. Wednesday was about a funeral and a cremation. The June bank holiday will never be quite the same again.

Year two my husband lost his lovely mother. Year two was bloody rough.

This week we will head into year three. My hope is that we get to spend more time on the good train enjoying more time with each other, seeing our businesses grow and do more of what we love together. Grit and determination will help us spend more time on the good train. There will be time on the tough train; I’m just hoping for less often and less dark.

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The lights went out but they are coming back on

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People said the first anniversary would be terrible, both the build-up and the aftermath. It’s like when someone tells you something is physically painful but you don’t quite believe it until you do it. Childbirth springs to mind. Although I anticipated all of this, it was just incredibly tough. May and June have been funny months. I took voluntary redundancy and left my job where I spent eight great years career wise and made some friends I would call family. Not great timing you might say but one of the ‘super powers’ you get when you suffer a major loss is that for the most part, taking such a step is less frightening as it once may have been.

What I have learnt from losing my baby son is that the lights go out from time to time. April and some of May were my best months yet; we had a lot of fun and there was plenty of joy. I had my first girls holiday in years and we never stopped laughing. I am prepared for the lights to flicker as they do and have found ways to cope. Sometimes they fully go out and you are back in that awful pit trying to climb back out but don’t have the energy to do so; I wasn’t prepared for that when it happened recently. What I understand now is that in the early months and years of grief, there are no reserves left for much more trauma. You really are standing on the edge of a cliff doing your very best for the wind not to blow you over. When those lights go out, there is simply no gas in the tank. The support of those around you is vital and the understanding that there are no reserves; it’s quite literally staying on the edge of the cliff or falling over. There is less to give to others in these early days; I’m thankful that people understand that.

‘Hope is the beacon that guides us to tomorrow’ is something I wrote about in the earlier days and it is something I dearly hold on to as I read it again tonight. Here are some of the things that worked then and helped me through the latest wave:

Anger is tiring; find your voice and take up boxing: Finding your voice through writing is hugely beneficial when grieving a great loss. Anger comes and goes; a certain amount is healthy but ditch the rest if at all possible. And dig out the boxing gloves!

Exercise is essential: Exercise continues to be my go to pill. It can often keep the light flickering; it’s so important to make it a top priority.

I am in your corner: I spoke about how warm those words were to hear from a dear friend of mine; it transformed my anticipation about my return to work. Seek out someone who is struggling and tell them you are in their corner and watch the magical reaction.

Love and support should be in tablet form: People who are grieving and struggling through difficult challenges in life need people who are willing to hold space for them. Without this, the wind can simply blow you over the cliff.

It is ok to say no: There will always be triggers. Some of them are starting to get a little easier. I recently held an old friends twin babies; they were so beautiful, it was a big step for me and I’m so glad I did it. I appreciated her kindness and understanding so much. It is ok to say no to some that are still unbearable.

My hope is that the lights won’t go out as often as time passes. I know there will always be times when the lights will flicker and the gaping hole in your heart expands wider during that time. It is what it is. I know that taking the bold step to take a jump to the next curve of my life was the right thing to do. When I reflect on these choices I smile because I know what gave me that kick; my children Lily and Bobby and my husband Des.

Hope was something I found hard to find when we lost Bobby. Holding hope for others continues to be the legacy that is Bobby. I have some exciting plans for my professional life as well as giving back to other bereaved families. To put it simply ‘Helping others to turn the lights back on’.

What can you do to help someone turn the lights back on?

 

 

 

 

You are loved, you are remembered, you are missed

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This actual day and time last year, 14.42pm, I held my son as he took his last breath. Sometimes it feels so surreal it can feel like it never happened and other times the enormity of it knocks you over. The last year feels like a blur and the build up to his birthday has been torture. It was hard to know what to expect; people told me who have walked this path that it is woeful and I hoped with all my optimism that it would not be. Tomorrow is his actual first birthday and it is desperately sad that he will not be here; desperately sad does not even cut it. It is not just one day; it is weeks of build-up reliving every moment of those weeks. I have not felt strong, I feel shook all over again and there have been terrible days; one when I could not get up. Thank god for the school term and routine for the little fortune cookie. The unexpected flying objects keep appearing and cripple you when you least expect them. The bittersweet news where you are very happy for people and desperately sad for yourself. The pregnancy announcements, the beautiful just born babies, the first birthday cards and balloons, the empty chair and even TV shows. The recent grey’s anatomy storyline of a wife and sister assumed dead and grieved for, returns home after ten years as a hostage. The post traumatic stress displayed by those who mourned her had a desperate effect on me and those unexpected flying objects will keep on coming.

Bobby’s big sister asked me do people not like talking about dead people the other night at bedtime. She told me that Daddy and I do not talk about him a lot. We talk when she talks; like us, that is not enough for her. A wonderful book arrived for her today from ‘The story of books’. I tried not to blubber my way through it for her; a beautiful personalised book that exudes love and hope.

The last few days and the next few are about survival and remembering a very special little boy. A little boy who has taught us all what is important.

A little boy who fought tirelessly to meet us all and gave us seven precious hours.

A little boy whose life we are extending by the choices we now make and the life we will lead.

A little boy whose legacy still has so many paths and journeys to take.

A little boy who has brought new friends into my life I could not imagine not having.

A little boy who has allowed me experience gratitude at a level I never knew existed.

A little boy who will always leave a hole in my heart and a longing that I do not think will ever go.

A little boy who has held Des and I together; strong with our sparkle remaining.

A little boy who still has so much to teach us and we are ready for it.

There are so many words to say but not for now. I will finish by telling you Bobby that:

“You are loved, you are remembered and you are missed”

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It always feels impossible until it’s done; surviving the return to work after losing your baby

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It’s over nine months since we met and lost our son Bobby and a while since I put a pen to paper. The last couple of months have been packed with more milestones, steps both forward and back and time moving along way too fast. I’m back to work two months. As Nelson Mandela has said ‘It always seems impossible until it’s done’. The weeks leading up to it were pretty woeful but being back has been uplifting and created space for some joy again. The anticipatory anxiety in the weeks before was intense; I felt vulnerable, lacked total confidence and had lost trust in myself. I walked through those doors feeling like an utter failure; I couldn’t do anything to save my son. What I wasn’t prepared for was the amount of people who were in my corner; willing to feel the discomfort that is child loss and not sweep it under the carpet and hurry me along. I could stand on a stage and talk about advocacy and people being in your corner for hours. It is something that has been important in my career yet magical as I went through the last year. I know how special it feels and how hurtful it can be when it is missing. I went to our leader in my company back in November to let her know I wanted to come back. I’ve become somewhat protective of the telling of my story.  I wanted her to hear from me personally how I was and that although our lives had been turned upside down, I would be ok; I just needed some help.  Asking for help is enormous when you are a shell of your former self and looking back I feel a sense of real pride that I did it; it was really difficult to do at the time. I backed out a number of times, but thought about the little girl at home looking at her role model and that gave me the little kick I needed.  We made a decision to kick the shit out of Option B.

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When you no longer trust yourself or your body, it’s really hard to believe in yourself. Having spoken to my doctor and bereavement counsellor, a phased return was recommended and a short-term part-time role was created for me. A dear colleague and friend managed my return to work. I’m incredibly proud to work for a company where we take care of people in the good times and bad.

I’ve been a people leader for many years so I know a lot of people; the prospect of seeing them was overwhelming. I asked that a communication be sent to let people know what had happened and that I was coming back. And if people didn’t know what to do, acknowledging Bobby and his loss was something I welcomed. This was probably the most difficult thing to ask given the amount of people who would receive it; my already vulnerable self was feeling more naked than ever. I knew in my heart this would help but I judged myself, wondered about the judgement of others but fired ahead my head exploding with over thinking. Many people came to me afterwards; some to say they didn’t know and were so thankful for the email and some to say they were so glad to know my preference. I met my new boss shortly before day one as I was starting a new role when I got back. I wasn’t prepared for her genuine desire to better understand our tragedy and how I was coping. I explained how walking through those doors day one was going to be incredibly overwhelming so we made a plan for day one; she walked with me through the doors that first day.

Day one was exhausting; I felt shook and incredibly sad to be back with no baby to tell everyone about. People warmly welcomed me back; it was so very healing. Some felt comfortable enough to give me a hug and tell me how sorry they were; this meant an awful lot. Some were awkward and didn’t know what to do and I accepted this. People say all the time that people don’t know what to do in these situations; I think we need to always remember how harder it is for the person going through it.

The things I struggled with were the questions blurted out in pure discomfort to fill silences. Questions about how my maternity leave was and if it went quickly. They were in no means meant badly; people were just very uncomfortable. I will admit I found it challenging to have conversations with people who overlooked what had happened; I mostly cut to the chase and people almost sighed a breath of relief when I normalised the conversation. Nothing really prepares you for any of this no matter how hard you try to mentally prepare.

For the first week or two I couldn’t understand emails, reports and presentations; they were like double Dutch. I definitely gained a few more eye lines squinting trying to make sense of things; thankfully this slowly improved and I found myself even talking and working faster over time!

At times I have to dig deep to care about things that seem so small now and I work hard to focus on the energy I get from the things I love doing at work. Seeing lots of people again every day has been fantastic, particularly for someone who loves being around people; it makes you realise how alienating and lonely grief is. We have had a few milestones to get through since I came back and these have been grim days. These are the days you feel like you have been hit by a truck all over again and its overwhelming.  I have been upfront about these and this relieves the burden of trying to pretend all is ok when it just isn’t. I worked at home for one of them and took leave after a very emotional evening when Féileacáin presented us with a cuddle cot in memory of Bobby from funds raised by a dear friend. Sadly, there are so many more firsts to come; I hibernated for most of Mother’s day and I’m absolutely dreading the build-up to Bobby’s first birthday. Lily’s birthday was so much fun and we made it the very best it could be for her but we deeply felt Bobby’s absence

Being back at work has handed me back some of my identity; having a focus every day helps enormously when you are grieving a child that never came home. It gives you a new lease of life and a break from the exhaustion that is grief. You feel like you have been plucked by a digger from a parallel universe into the real world again. We’ve got some really nice holidays planned with Lily and we are so excited at the prospect of them; you appreciate things more than ever. I cannot describe how wonderful it is to be excited about something again; you simply do not think this could ever be possible in the early days. Who knows what the future holds right now, this path is certainly not one we chose but I’ve climbed another mountain and come out the other side alive and as Sheryl Sandberg says kicking the shit out of Option B.

Stars can’t shine without darkness

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In the early days of loss, healing seems impossible. The future seems bloody bleak, empty and pretty hopeless. Someone very dear to my heart challenged me to be brave and put Bobby’s story out there to help others; something I so desperately wanted to do but was hesitating. You know you have to do this, you already know she said. You already know. These three words have been thrown at me only a few weeks ago about another big decision; three words that are simply life changing. We all procrastinate; we test all the options. The reality is that generally, if we listen to our hearts, we already know. I knew I had to write about Bobby, I knew his story would help someone. Pressing that publish button to release my blog to the masses was really tough. I judged myself and I feared judgement.

January was tough; the anticipatory anxiety about going back to work was enormous. Although Bobby is not with us, I felt like I was leaving him behind; just as I felt leaving Lily this time four years ago. Loss rips you of your confidence and I felt like a total failure walking back in the door; I failed to save my son. A friend whispered softly that life failed us. It bloody did.

I have turned a little corner and it’s about a lot of things; time, the process, growth and having a routine again. Routine throws distraction at grief and being around people highlights how isolating this path is.  A supportive, welcoming work environment has been invaluable; I am very lucky.

Making decisions and taking some control back gives you energy that was previously zapped with overthinking. Grief is about thinking and thinking; over and over again. The whirlwind of thinking has not gone away but it has eased. Then along came the magic that deeply warmed our hearts. The magic that was the footprint Bobby left in January; being connected to a family in Ireland who recently received a CDH diagnosis and fundamentally being able to help. It is heart-breaking that another family faces such incredible uncertainty. Who knew that the awful 3 letters CDH typed in Google would lead this family to our Irish times article and subsequently to my blog?

What a legacy, what a son…..Stars can’t shine without darkness.

The Gift of Listening

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This time last year I was preparing to complete my Life Coaching course. Things were crystal clear; we had a healthy baby on the way (we thought) and I was feeling incredibly happy with my lot. Lily was her usual happy hilarious self, Des and I had plans; 2016 was going to be a great year. And here we are in 2017, recovering from a year that hit the deck on March 1st 2016; the day our train took another turn.

One of the topics on my course that impacted me the most was the art of listening. I never expected to need it so much from people and the incredible gift it would be when offered.

Most people I learnt do not listen at a very deep level; we listen to words and stop listening as we start internalising and processing the words. We think about our response; sometimes we want to tell a similar story. Sometimes we want to tell a more impactful story; in our opinion. We listen with focus on ourselves and our own feelings. We find ourselves judging and evaluating; we can think we are wiser. In fast paced environments, we listen as far as we need to before moving on to the next problem to tackle.

Quite often we have the very best of intentions when our friends and loved ones are facing really difficult times; we listen to fix. All of the above is called Level 1 Listening; our awareness is on ourselves and what it means to us personally. I have been this listener, haven’t we all? When I find myself doing it now I don’t feel good; I feel pretty awful and it requires discipline to snap out of it. I beat myself up afterwards.  I have been on the receiving end of this in the last year; it robs you of energy you don’t have. Grief and loss is so incredibly uncomfortable for people and sometimes it’s easier to find ways to fix, offer advice and tell the person how you totally understand when you don’t. During the worst times I could not cope with questions and as humans we often divert to questioning when things are bleak. It’s exhausting for the person facing something harrowing; having to explain, fight off questions and having to listen to advice. If only we could relinquish some space and some air time and press the pause button on our brains to use our cute little ears.

I have also been on the receiving end of some incredibly focused listening; what is called Level II Listening. I have seen people lose sight of what’s going on around them. I have felt heard and I have walked away feeling energised and not depleted of energy. There has been silence when needed and I could breath. It’s been all about me (within reason); sometimes we all just need ten minutes of it being all about us. This type of listening is an incredible gift to a grieving person who often feels so isolated in their bubble.  When we listen with focus we want to fully understand; but not for the sake of ourselves.

When we listen with all our senses this is Level III Listening; also called Global Listening. I have seen people notice my energy levels change in conversations, seen me squirm in awkward situations and been in my corner. They have seen things I have not quite seen yet. There is never any judgement.

Listening can change the course of events significantly when you feel listened to by someone. I described this when I wrote about the relationship we had with our wonderful obstetrician and the journey we took to Belgium because she listened. We witnessed incredible listening by the wonderful midwives, our Chaplin and our bereavement counsellor who continues to use all her senses with us. I already know my first day at work tomorrow will be easier because of the gift of listening.

How can our children be good listeners as they grow and develop, if we hurry them along to get the next job done? I often get a LISTEN from Lily when I interrupt to tell her to put her shoes on; she just wants me to slow down and listen to her little story. And offer no opinion, advice or judgement.

Listening will always be a challenge for us all so let’s give it our best shot. Take a few minutes today to read these great quotes about listening.

Sweet & Sour Holidays

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It’s been seven months since Bobby died and we are still standing. December was probably the most difficult month so far and I felt too lost for words to write. I avoided shopping centres; the sight of Christmas decorations, baby’s first Christmas outfits and Christmas music everywhere was too much. It was just too unbearable to spend Christmas in Ireland so we took Lily on her holiday of a life time. The reality is that it was not the holiday of a life time for Des and me. You don’t leave grief behind; it hops on your back and comes with you. The heaviness, the struggle each day and the broken heart is still there. Amidst all this there were sweet moments; that were so sweet they also made me cry and feel joy. There were sour moments. Moments of longing, of why us and of wishing with all your heart your son was with you. So I decided to call this blog post Sweet and Sour holidays. At times before we left, I winced when people wished me the most amazing holiday ever and asked me was I really excited. The intentions were so kind yet I got tired explaining why I wasn’t tip top excited. Many bereaved parents don’t stay around for Christmas and it was the best decision we could have made.  We survived it, we made new memories and we gave our daughter the trip she deserved.

Feeling some joy again makes you feel alive, so let me tell you about the Sweet Moments.

Sweet were the lovely three nights we spent upstate New York with good friends; good company warms the heart, is food for the soul and allows for healing.

Sweet was the unexpected snow that was so much fun for Lily and her two new friends Naoise and Darragh.

Sweet was the fearless face of Lily as she sailed down the rollercoasters in LEGOLAND Orlando; the squeals of delight, ‘the best fun ever’ whilst her parents desperately tried not to throw up lunch.

Sweet was the wonder we felt as we toured Nasa’s Kennedy Space Centre; imagining what it was like to land on the moon for the first time.

Sweet was the pre-recorded phone call Lily got from Mickey Mouse before she boarded the Disney ship; to tell her how excited he was to see her soon.

Sweet was that first night of Christmas carols on the Disney cruise when all the characters made an appearance; the magic that just is Disney.

Sweet was the look of awe on Lily’s face as she met all the Disney princesses for hugs and photos. “They really are real aren’t they Mommy”.

Sweet was the magic of the Disney shows; the happy endings, the bright colours and the love and hope. It was just that little bit contagious.

Sweet was the dance off on top deck as the ship set sail where Lily danced with arms everywhere to her favourite song ‘Sunshine in my pocket’.  It brought tears of joy and sadness. That little bit of sunshine in my pocket yet that emptiness in my pocket too.

Sweet was the moment Lily couldn’t believe Santa visited her on the ship and actually got her Beauty and the Beast Lego; but how did he know Mommy and Daddy. He really is amazing she said.

Sweet were the constant drawings and cards Lily made with Bobby’s name and drawings all over them. Lily decides when Bobby is included; we are lead by her.

Sweet but intense was the 5KM we ran on the Disney owned island; I clutched his star and it kept me going despite the heat.

Sweet were the cards and gifts we received when we got home; we were so grateful to see his name on cards.

Sweet was the time we had together, the cuddles, the love and the new memories. Sweet is the gratitude we feel to have been able to take such a trip.

Sweet are Lily and Des; we have survived, together.

 

I’m not even sure that Sour Moments can adequately describe how difficult it was at times. Let me tell about the Sour Moments.

Sour, yet sweet was the Christmas Service we attended on the Disney ship to remember Bobby. There were so many tears; yet they needed to be shed.

Sour was the empty chair I felt every time we sat down as a family of three at a table for four. It is a breath-taking reminder of what should have been.

Sour and heart wrenching was the sight of babies having photos with Mickey Mouse; the longing for things to be so different.

Sour is how difficult it is to balance mothering a child who is with you and a child who is not.

Sour are the catastrophic nightmares I had; airplanes crashing, ships sinking and loved ones dying. Such is the aftermath of trauma.

Sour is the heartbreak that you battle every day. The heartbreak is also full of so much love for a child that is not with you.

Sour is it trying to figure out how to channel all this love for him as you face into 2017; the fear of not knowing what is ahead. 2016 was never expected; the shock still remains.

Sour is leaving behind the year Bobby was born; sour is how hard it continues to be.

Sweet and Sour is the realisation amidst the devastation that there can be sweet moments full of love and hope.  And they help you survive.

 

 

Hope is the beacon that guides us to tomorrow

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I’ve been hiding in my bubble for the last few weeks and I did not think I would ever write again. I had been embracing my new normal as bravely as possible. Then the grief monster, or should I say ‘friend’, paid me a visit and left me debilitated. I was devastated by the realisation that I will live with this hole in my soul for the rest of my life. The grief ‘friend’ paralysed me so I couldn’t even run and avoid; I was back to crawling. I was incredibly frustrated that Bobby’s loss is a part of our story. We have always said it won’t define us; but the incredible sadness of losing him can overwhelm when the grief ‘friend’ visits. And Bobby’s loss won’t define us, he will make us better people.

Who knows what invited this wave to wash over me as they say. It was a mixture of events, hormones, anticipation and just plain awful grief. Perhaps it was the anticipation of Des going away to see Ireland beat the All Blacks; a much needed break for him, but difficult when my stabilisers were taken away. I tried to organise my birthday lunch with some of my closest friends; I found it stressful as these things are still difficult. The hardest part of the last few weeks was cheering my great friend Nicola on as she so kindly ran the marathon for Bobby and for Féileacáin. There was the difficult anticipation, another new ‘friend’ of mine.  It was surreal, emotional and a devastating reality slap about what has happened to us.  As other’s I knew running came passed us, I was very emotional. So many of them had their own stories; emotions were high. Nicola arrived in the park and the legs nearly went from under me. This had to be happening to someone else I am sure we both thought; are we really here because our son died? We were both not quite able to get the words out. Lily proudly wrote Bobby’s name on all the t-shirts, cheered the runners on, walked 12 kilometres and had a fantastic day chasing Nicola around the course.

Then landed another friend of mine; I am trying not to use the word ‘monster’ anymore – the emotional hangover. It typically comes from a tough event and it lasts for days. I did not feel like getting off the couch or out of bed. And I did; there is no choice when your living child needs you. And the joy and giggles she brings; she is our little fortune cookie.

Christmas is looming; even Lily questions why all the god damn decorations are up so early. I want it to pass so fast that we feel no pain but Lily deserves such a special one, so we are leaving the country and cruising on a Disney ship with no coverage; escapism at it its best. 2017 is looming, as is at some point my return to work. Some would say I have anticipatory anxiety about all of the above.

As each month goes by, I face the fourth day of the month. Another month on since we met and lost our beautiful son. And this time it was my birthday. Two great friends came over and we had a few glasses of wine; and they were needed.  Good giggles, great conversation; it felt good. People tell me I still have my sparkle but you don’t feel it in the early months of loss. The reality of losing your child is that you lose a part of yourself and the future is hazy.

I made a commitment to share how I am surviving as the each month’s anniversary passes. The reality is I learnt many of these the hard way. The good news for newly bereaved parents is that we have survived, we haven’t killed each other and Lily is in a great place.

Anger is tiring; find your voice and take up boxing

They say a good balance of anger in grief is good; but it’s tiring. It comes and it goes and just when you think it’s gone, it knocks on your door with matchsticks for your eyes. I have talked to other bereaved mothers who get the ‘fighting in my head’ concept. You become angry about an interaction or a conversation and the argument with the person starts in your head. You end up feeling pretty crazy and quite lonely. What I have learnt is that the majority of people have the best intentions; but child loss is harrowing and people struggle as they do with loss in general. Social interactions, particularly the bad ones, can leave you paralysed and lost for words with that fight or flight feeling. I’m still trying to find my voice, it’s a work in progress and it’s really hard. But accepting that people have good intentions and starting at this point does help. It makes the anger less intense and you can let go a little quicker. Sometimes we have to be brave and look at other people’s perspectives; it usually helps our own reality. I’ve recently started boxing a little during my training sessions and it’s a great release. Just don’t box anyone else! If you are supporting someone close who has lost a child or someone close, it may be helpful to read and research. Raising your level of awareness is a lovely present you can give the person in your life. I remember a dear friend telling me she had read a book about a mother who lost her child; just so she could understand me better. She’s a pretty special friend.

Events and invitations are tough, I have learnt not to commit too early

When you are having a brief break from the grief ‘friend’, you think you are cruising. You think that all is relatively ok in your world, even with that hole in your soul. The reality is the hits and waves will keep on rolling. I learnt to wait until closer to the day itself to give a final answer to invitations. Sadly, the real world is full of unknowns, set-backs, reminders, babies and good intentions and people who don’t know what to say. If you commit too early, your anticipation anxiety ‘friend’ will pay you a visit and you may run for the hills anyway. So have some self-compassion and wait. If you are supporting someone through a big loss, try to understand that social gatherings are hugely overwhelming for them.

Exercise is essential

I strongly believe this has been a big factor in my survival; walking, running (trying) and going to the gym have reconnected my brain to my body. The endorphins from exercise give you hope and positivity particularly during the grief ‘friend’ visits. Make a commitment that is realistic and stick to it. I no longer trip over my own legs in the gym and I can follow instruction; who knew!

I am in your corner

I have a friend who recently said this to me on an incredibly difficult day. The impact of these words is breath-taking. If you are supporting someone through a difficult loss, tell them you are in their corner. It’s simply magical to hear these words.

Love and support should be in tablet form

Surround yourself with those who love and support you; it makes the pain somewhat bearable and pulls you out of the pit. When you are at the five month stage, people may well have ceased regular contact with you. Grief is lonely and at this stage the anger may return leaving you feeling isolated. It’s worth telling people close to you that you still need them. I have some real superstars in my life who pretty much check in with me every day; they know who they are. I still make few plans, I don’t issue invites and I don’t make many calls. It’s hard to ring someone when you still haven’t it in your heart to say ‘I’m great’. I still rely on people to make that contact with me.

It is ok to say no

Someone told me recently that it is braver to say no to something too difficult than shoe horning yourself out the door vulnerable and in a heap. This wise lady told me mothers like me need to say no and go back into our safe places when needed. Other parents in our situation need to know that it is ok to say no.

hope

Hope is the beacon that guides us to tomorrow. As bad as today is, there is always hope tomorrow will be a little bit shinier. For me sometimes it’s a day I enjoyed eating out with Des or close friends. Sometimes it’s a day I enjoyed cooking a curry after a lovely walk; even though I might leave out a vital ingredient. Chillies really are needed for a good curry.

Sometimes it’s a day when I remember how much I still love shopping; in fact I just helped a dear friend take a chunk out of her credit card today. Sometimes it’s a few days with Lily on my own; days which I anticipated differently. Yet they were very special where we both treasured our co-sleeping and all the things we did and said ‘Don’t tell Daddy’.

There really is no fighting grief; the only way to grieve is to grieve.

This too shall pass

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I read a great article last night sent to me by my friend Jillian, who lost her son Patrick to CDH two weeks after Bobby.  Jillian and I got to know each other virtually through one of the CDH Facebook groups setup by the CDH UK Charity to support families affected by CDH. The article refers to the five stages of grief by Elisabeth Kübler-Ross; denial, anger, bargaining, depression and acceptance. They were apparently intended for people facing their own deaths, and Kübler-Ross later went on to apply these same five stages to the bereaved. The author of the article, Claire Bidwell Smith, who specialises in grief therapy, says her bereaved clients aren’t bargaining; they’re anxious. Bargaining they say is seeking ways to avoid having the bad thing happen. I’m not sure it applies to our situation; so I tend to agree with the author. Four and half months on and I am experiencing anxiety; something that I have not been challenged with before now.  I have death anxiety; I don’t know how many times my daughter has died in my dreams and who will be next. I’m convinced I am going to die young; either that or my husband Des will drop dead before me. I’ve read enough to know this is normal and this will pass; just like the denial phase. This was the haze I described previously, my brain being disconnected from my body. Oh and my reliance on that envelope.

I’m like a toddler learning to walk; falling down and having to get back up and try again. I’m trying more and more to reintegrate back into the real world; and I never realised this could be so hard. Mothers who lost their babies, and others who have experienced loss, speak my language and they just get it. People, even my own husband, look at me strangely when I attempt to explain the complexity around reintegration. Sadly for him he had to reintegrate two weeks after Bobby died.

Bobby’s loss has made the ‘real world’ increasingly daunting where there are constant ‘triggers’ and it’s not a totally safe place for me right now.

It’s a place where there are women who had their babies around the same time as Bobby and right now I cannot face them or their beautiful babies. My anxiety is the fear that it will always be difficult seeing them. I have faced these situations already and they have cut the legs from under me.

It’s a place where I now have to answer questions about the number of children I have and it’s a constant reminder that Bobby is not here. The school gate is terrifying; yet I need to meet people for Lily’s sake and have play dates. It is overwhelming and I know it will get easier.

It’s a place where I feel vulnerable; I have no control over people’s reactions when they see me. Each day I wonder who will I bump into; will it be ‘the first time’ as first times are not easy. Before we lost Bobby, seeing people was a big love of mine, not a big fear. People openly admit they haven’t had the courage to contact me; and when I look at it from their perspective, I understand. But I am an outgoing, sociable person who loves being around people; so I find this hard and isolating. Yet, I understand the intentions now that the anger has passed somewhat. My body language recently was a frightened and terrified one apparently; so much so, someone chose not to speak to me. They believed this is what I needed, with the very best of intentions.

It’s a place of unknowns. I could meet someone who has heard my sad story who so kindly puts an arm around me and says how sorry they are. The kindness is so appreciated and yet it reminds you of your loss. Then there are people who don’t acknowledge for fear of hurting you and that also reminds you of what you have lost. All of these scenarios have happened. Acknowledging our loss is definitely the better route but it is still incredibly difficult. There is just no getting away from it and that lack of control breeds anxiety.

It’s a place where there is stress and offloading and I am frustrated that I am not quite able for this at the moment. People have always come to me for help and support; right now I inhale stress because I am vulnerable and my pores are open. I’m determined to work through this because it is part of who I am and I know this too shall pass.

So this week’s revelation is about anxiety and how hard reintegration really is. I hope by sharing this revelation, people may understand how hard this is for people who are grieving a terrible loss. If you want to help someone in this situation try hard not to make them feel they are being ridiculous (watch your facial expressions!). Just listen, don’t listen to reply, listen to truly understand and empathise. Most of us are problem solvers and we go into problem solving as we try to listen. Try not to fix because this phase of anxiety and fear for the bereaved will pass. We will be able to reintegrate and we will survive. Try not to assume that we will always be like this because you worry. We won’t always be fearful because this too shall pass.

Hope got us through Bobby’s diagnosis until his death. Hope has brought me through the months since he died. Hope tells me that this phase of fear and anxiety will pass and it is indeed another phase of grief.

 

 

 

 

 

 

 

 

Four months on and today I can say I am grateful

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If someone had told me four months ago that I would feel grateful about anything to do with my son’s loss, I would have been angry. No one has a right to tell me to be grateful about anything to do with Bobby’s loss other than my husband. I remember regularly wincing since Bobby died at the sight of the importance of gratitude articles circulating social media.

And here I am today experiencing gratitude, but on my terms.

Today I am grateful that we saw our son alive and our family met him; albeit it being in the NICU. Yesterday we spent time in the Coombe with our compassionate neonatologist Pamela where we learnt the extent of Bobby’s organ failure and how my placenta had started to fail.

Today I am grateful that we heard him cry; that he squeezed our hands and tried to open his eyes at the sound of his grandfather’s voice.

Today I am so grateful that my son was not still born; I am so glad he came early and we got to meet him breathing. My heart aches for families whose babies have been still born.

Today I am grateful for what this horrific experience is teaching me and the growth I experience through loss.

Today I am so grateful for my rock; my husband. It’s been a tough five years but I meant what I said to him when Bobby died; I could not imagine going through this with anyone else.

Today I am grateful for the time I am spending with my daughter Lily, bringing her to her first year at school; this is only because Bobby existed.

Today I am grateful for having Lily who only this morning I found sitting with Bobby’s framed picture on her lap; she told me she was happy he had been here.

Today I am grateful for our family and for the on-going love and support they gave us and continue to do so following Bobby’s loss.

Today I am grateful for Bobby’s godmother who never stops thinking about him; and grieves his loss.

Today I am so grateful to my mother, a former NICU nurse, who taught me to always seek second opinions and question the medical profession.

Today I am grateful for Whiskers the cat my sister bought Lily; the cat I once hated who has been a tremendous source of healing for Lily.

Today I am grateful for the invaluable circle of friends we have who have been a tremendous support to us as a family; I feel very blessed.

Today I am grateful for all the new people I have met because of Bobby and the lifelong friendships that have been formed.

Yesterday’s visit back to the Coombe was incredibly difficult; it was another milestone on this awful infant loss journey. We were welcomed back with warm arms and genuine interest about how we are coping. I am grateful that we were seen outside the baby clinic to hear Bobby’s case review from the multi-disciplinary meeting and pathology review; it would have been tremendously difficult to sit around families with arms full whilst ours are empty.

I am grateful to those who read my posts; I know it can very difficult but my objective remains the same; to heal and help others in any small way.

Who knows what the grief monster will throw at me tomorrow, but today I’m grateful.