How I survived the first 3 months after losing my son

beingstrongquotesIt’s like I am sitting on a very steep hill. I’m looking back down and only now can I see things a little clearer. I realise the enormity of the trauma and how I suffered concussion like symptoms since we received Bobby’s diagnosis and his subsequent death. For months I have used an envelope to write down where I needed to be every day. I honestly could never tell what day it was, what day it was tomorrow nor what I was doing the next day or what I did the previous day. The envelope was my anchor. I remember that overwhelmed feeling I would get when someone would ask me if I was free tomorrow if I didn’t have the envelope. I had to squint to understand people when they spoke to me. My brain was disconnected from my body. The early days were full of fear; fear of the grief and avoidance at times. I am empathic person and I do my best to try to understand another person’s hardship or loss; but I have never felt such heartache. You cannot fix grief; the best quote I read said the only way to get over grief is to grieve.

In the blurred moments of those months, I really thought I was present. But I really wasn’t, I was just trying to survive. I was physically weighed down and almost trying to find my way through a fog. I know for sure that my daughter Lily  quite literally kept me sane. Those months were about shuffling from one day to the next; getting Lily up, dressed and fed and out of the house if possible.

Who know all firsts would be so incredibly hard; seeing people for the first time since Bobby died, going to stay in my friend’s house and there are many more firsts still to come. Noise; well that is another story for both Des and I. We can only deal with noise now. Decision making; well that was simply impossible in those first three months.

Suddenly I can do the hoovering, put on a wash and unpack the dishwasher without having to think. Until recently, I felt a constant state of confusion and exhaustion when doing anything. I could not get my brain to process which job to do first; the poor cat often starved and I would forget to go to the shop. I’m suddenly talking faster and I am doing things with more speed.

The joy in life is still somewhat gone; though I found myself enjoying a recent outing with my daughter and my nephews and a drink in the local pub with two special friends. I even got on a plane last week, cried my way there, but there were more moments of enjoyment.

Those gripping, paralysing painful moments still come when you quite honestly believe you will never feel ok again and you would literally give anything for this feeling to go. And it goes. And you get a break again; a grief break they call it.

I remember the intense feeling of not knowing who I was anymore and who I would be. I still don’t know what the future holds. All I can say is to trust that going through this grieving process is essential and there will be new revelations all the time. I’m learning about the new version of me  as initially we are too traumatised to process what that is. That’s the corner I feel I am turning now after 3 months, I am beginning to understand the revelations and I preparing to be amazed amongst the heartache by the upcoming revelations.

Now that my concussion has left me and my brain connects with my body, I can look back and see what helped me move from one day to the next and I hope a grieving parent some-day will find this helpful. And essentially it is about physical and emotional wellness.

People grieve differently: If your husband is like mine, he won’t talk a lot about his grief. He may busy himself suddenly in the garden, take up a new hobby and that is ok. I find it hard at times that I really do not know what goes on inside his head; but I know he is devastated and is finding his way, his own way. Give your other half space, allow them to grieve their way and try not to push them to talk when they really just don’t want to.

Sleep: I cannot emphasise how important this was for me. I slept a lot; I went to bed early and I will be honest in saying that I took an antihistamine every night to help me sleep. In the early days, I slept during the day when my daughter had some hours with her incredibly supportive childminder. Grief is exhausting; my brain was and is to some extent still like a washing machine that never stops. I think about Bobby all the time. I dream about losing babies a lot. Sleep is just essential to support the grief process

Exercise: Walking is a life saviour; I never walk on my own, I always walk with good friends and in particular one lifelong friend who really helped me figure things out when I was dazed. And we laughed about things that were going on in her life and we continue to walk together. I was lucky to be able to work with a personal trainer who took care of me; she knew my journey and she helped me slowly build some strength and coordination. When I started with her, I would trip over my legs and I could not follow instruction. I was a disaster! But little by little I am getting my strength back. Exercise has helped my brain reconnect with my body and to process some of the trauma.

Writing: Writing about our journey with Bobby powerfully releases endorphins. It reminds me of the lessons I learned and continue to learn from his journey and his loss. I typically write following a trigger, which I call a footprint, a Bobby footprint. It might be meeting someone I would only know through his journey; it might be a ‘aha’ moment having had a chat with family or friends.

Limit alcohol: My husband and I have stayed well clear of alcohol due to the depressing effects it can have. And god knows we didn’t need any more depressing effects! Having said that, we both had a few glasses along the way with friends and it was needed.

Healthy eating: Eating well gives you the energy to fuel the grief. I find cooking and eating good food was both calming and it gave me focus. I don’t know what I ate in the first month but in recent weeks I have been more focused on this and it is really helping.

Acupuncture: Amidst our grief we forget that we have gone through a pregnancy and birth and our hormones play havoc. I have found acupuncture amazing for regularising these nasty hormones and it has been a massive help in the first few months of this journey.

Go slow: I’m a doer and an achiever by nature yet, I was incapable of anything but slow plodding. I had to stop myself from jogging on because I knew I would fall over. I didn’t have lots of plans, we didn’t take on entertaining of visitors; we just kept things very simple. We forget that impact of giving birth on top of the impact of losing your baby. Our bodies need time and care to recover. I’m doing a slow jog now sometimes but plodding is still needed.

Understanding triggers: Initially, I was oblivious. I had a blindfold on me and I was walking through a swamp waiting to hit by grief and sink.  Still feeling like ‘me’, I would go and do things only to be crippled at the impact of it; like my first night away from husband. I felt incredibly panicked and a sense of doom being away from my little family; they say this is the impact of experiencing such trauma. I’m finding the thoughts of family gatherings really difficult; so for now I am not able. My stomach tells me I’m literally not able and the reminder of Bobby’s loss will be too much.

Hallmark days: We’ve avoided Father’s day and we have booked a trip away for Christmas. For now it’s just too hard and who knows how long this will last.

Remember the things you enjoy and do them: I used to love spending time walking along the coast and I love a nice brunch; only recently during a very low day we did just that. We went out to the beach, wrote Bobby’s name in the sand and the water was very calming; I felt my spirits lifting. I used to love cooking before my life got very busy with work and Lily. Recently I have been cooking again and its bringing some enjoyment to my day and it gives great focus. By doing things that you once loved, it will give you a small lift. Doing things I once really enjoyed gives me a hopeful view of the future; that some form of joy will return.

Spend time with people who will try and understand: I will be honest and say I was pretty selective about who I saw in the last few months. Grief is not something you can fix; so I tried and still try to stay away from fixers. Being told what to do and how to manage really doesn’t help even though people I know have the best intentions.  I have been incredibly lucky on the whole to have people around me who ask me how I am and give me the space to talk about Bobby and how we are coping. Space is such an important word here. The reality is that we don’t want to dominate an entire conversation about our heart break; Bobby usually weaves in and out of the conversation with people who try and understand. The best thing someone can do for a grieving parent is ask them what they need and how they are. Find people who are comfortable around your pain and who will let you talk. Some people cannot cope with the intense emotions and may just avoid the conversation; and no matter what you do to not let this hurt, it will in the earlier days.

Be prepared to be amazed at what this life event teaches you: Pretty much everything that happens to me now is because of Bobby. Life has changed permanently and there are wonderful moments of love and support amongst the devastation that will give you goose bumps. I recently went to collect something from a man who specialises in framing; a complete stranger perhaps in his late 50s. He asked me did I lose my baby and proceeded to hug me so tightly for what seemed a pretty long time. And I asked him had he lost a child; and he had, I just knew.  He gave me some very warm and practical advice. He gave me hope; that this raw pain would ease over time. I now prepared to be amazed at what my son has taught me and the footprints he leaves for me every day

Try to find your voice: This is hard; it is very hard. I found my voice through writing and thankfully I don’t find it hard to express how I am feeling when I see people. But it is essential. If people say the wrong thing; and they will, you need to try and find your voice. I realise now looking back down that hill that people really sometimes don’t know what to say. Some say nothing and some try to find the at least’s. Then there are the amazing people who just don’t say anything and let you talk. In the early months I have learnt there is no room for anger; there is no energy for it and your thoughts then become consumed with hurt. I tried so hard to be honest when I felt hurt or when the words that were put in front of me did not sit well. I did it as calmly as possible and appreciated that in most cases people just do not know what to say. It has helped enormously.  I encourage people supporting bereaved parents to raise their awareness about what to do and what not to do. Give bereaved parents space to talk about their child and ask them what support works for them and be prepared to feel uncomfortable. Emotions around the loss of a child are uncomfortable; it shouldn’t happen and it is horrific. Swim in the discomfort.

If you are reading this and just lost your baby, I am so incredibly sorry for your loss. You WILL survive the first three months and you will learn to cope. Some days I feel frustrated that this is now our story. During the first three months I found a sense of desperation about this very fact. I am moving towards acceptance of this story and the fact I’m the mother who lost her baby and my husband is the father who lost his son. I am incredibly lucky to have a good sense of self awareness and skills as a life coach to process what is happening to me. I owe it to my son to share my learning’s about how to cope and I hope that by continuing to write that I can help other people; after all its one of Bobby’s footprints and it is part of the new version of me.

Our compassionate experience of the Irish maternity services

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The words of this article have been spinning around in my head for quite some time; amongst grief and loss and making sense of life again. It took a lovely chance meeting at the school gate with one of the wonderful midwives who took care of me during Bobby’s journey in the Coombe this year for me to finally commit the words to paper.

Our determined, courageous and beautiful son passed away on June 4th, seven hours after he was born. A heart-shattering and life changing day that we got through with the arms of doctors, midwives, bereavement counsellors and family wrapped warmly and firmly around us. Bobby had been diagnosed with a life threatening birth defect in the Coombe on March 1st at his 21 week scan. I often feel so incredibly frustrated with the universe when I think back to how simple, wonderful and joyful life was before that awful scan; and it will never be quite the same again. Our world changed in an instant and we boarded a rocky train journey no one wants to take; one that requires strength and hope that you have to squeeze out of places you didn’t know existed. Bobby was diagnosed with CDH, Congenital Diaphragmatic Hernia; a birth defect that occurs in approximately 1 in every 2,500 births and its cause is not yet known. CDH occurs when the diaphragm fails to form or to close totally, and an opening allows abdominal organs into the chest cavity. This inhibits lung growth. Roughly 50 per cent of babies born with CDH do not survive. CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is little research being done and virtually no media coverage. Bobby’s hernia was a right sided hernia, which has a poorer outcome. So we were given a 25 per cent chance initially.

Our journey to have children started back in 2010 when we experienced our first miscarriage. We were so incredibly blessed when our clever, kind and gorgeous red headed daughter Lily arrived in 2012, and what joy she has brought to our lives.  Bobby Fortune was a much wanted second child and our journey to have him was incredibly difficult; during 2014 and 2015 there where heartbeats there, gone and grieved for.  To prevent further loss, we crossed so many T’s and dotted so many I’s through IVF with implantation screening; the shock of hearing there was something wrong on March 1st was breathtakingly enormous. I remember trying desperately to sleep that night; but it was a night of fear, devastation and disbelief.

March 1st marks not only the heart-breaking reality of knowing your son was facing life or death but it was also a day we embarked on a relationship of advocacy, support, warmth, hard facts when needed and incredible empathy;  the relationship with our wonderful obstetrician who helped us through the worst months of our lives. There are so many things I could say about Deirdre but I wouldn’t even know where to start. They say strong people stand up for themselves but the strongest stand up for others and this was quite simply what she did.

I quickly became part of global CDH Facebook groups trying to wrap my head around this defect, what my son was facing and what we could do to help his prognosis. There was nothing we would not have done for our son. Deirdre was a generous listener, never once tiring of my on-going questions, and there were many. She embraced our need for second opinions with no offence or judgement or damaged ego.

What would you do if this was your child? This was the question I truly believe changed the course of Bobby’s journey when we had a lot of hope. It is what I asked Deirdre to ask her colleagues.  There was no treatment for Bobby in Ireland and she had mentioned there was a doctor who had worked with many CDH cases previously in Prague. I wanted her to ask him what he would do if this was his child.  She did and suddenly there was a plan and hope and a way forward. I know this simple question made the difference. We were swiftly boarding a plane to Brussels to see CDH experts who were performing in utero surgery to help the lungs overcome the impact of organs developing in the chest cavity, a procedure called FETO.

The process to obtain treatment abroad funding through the HSE was not easy for a pregnant mother facing a difficult diagnosis, yet that is what I faced. Deirdre was so generous with her time and supported me wherever possible to get this funding. I am so incredibly proud that my son’s awful journey has resulted in a change in this HSE policy to allow the maternity hospitals to approve the FETO surgery without a lengthy stressful process for the mother.

The team in Brussels welcomed us with such warmth and compassion yet gave us the brutal facts. We were incredibly relieved to hear that they would accept Bobby’s case and would perform in utero surgery. We knew it increased his chances to 50 per cent; and we were grasping on desperately to every little extra chance for Bobby to live. Hope is what kept us going; it gave us the gas in the tank to survive. Having the surgery meant we had to move our lives and our daughter to Brussels for two months and an additional procedure eight weeks later to remove the little balloon that would be placed in Bobby’s lungs to help them grow. We had schedules for family and friends to visit and support. Sadly when we returned later to Brussels for the surgery, Bobby was so incredibly unlucky. He had started to develop hydrops, a life-threatening condition of severe oedema (swelling) that occurs in babies and new-born. The surgery could not proceed.  We have almost erased this awful moment from our memories; it’s hard to describe the heartache of having to turn around and go back home without that 50 per cent survival chance to which we were clinging so desperately. The team in Brussels sat with us, put their arms around me and told us Bobby’s chances were significantly lowered.

We returned to Ireland and continued on our journey with the Coombe; weekly scans with the fetal medicine team and reviews with our obstetrician. I was admitted at 32 weeks with signs of labour and spent six days in the hospital. I had developed polyhydramnios, which is not uncommon in mothers with CDH babies where an abnormal build-up of amniotic fluid builds. This required a procedure to have some of my amniotic fluid drained as well as some of the fluid in poor Bobby’s tummy. There were times I felt my fetal specialist had no filter, yet he was always incredibly warm, empathic and calming. I spent time on a ward where all women go who are facing miscarriage, still birth or pregnancies with poor or guarded outcomes. The humanity and care I experienced in this time was a humbling life lesson about compassion, empathy and how to care for others in devastating times. I used to ask the midwives how they coped, taking care of women every day who were on such shattering journeys. They would sit with me, make me feel normal and laugh about how incredibly active Bobby was or just talk about small things with a bit of gossip thrown in. They were kind and generous listeners and got me through each day to the next. There was never a cross word or a lack of patience; not even when I asked for brown bread instead of white! Bobby decided he was coming when I was 34 weeks and two days, and I have never been so afraid. It was the June bank holiday weekend, sadly my consultant was away and nothing was as it was supposed to be. A large team was quickly assembled to bring Bobby into this world by caesarean section in an effort to save his life. My parents made a very quick dash to the hospital to be there for Des and I; it’s amazing how much you just want your parents there in the worst of times. We can only imagine how difficult it was for them. My sisters scrambled from where they were around the country to get a glimpse of this special boy.  I can’t imagine how difficult those journeys were. Mary, who delivered Bobby, was the best replacement obstetrician you could ask for; she was incredibly disappointed for me that Deirdre could not be with us, yet she was wonderful in my eyes. So many strangers held my hand; the on call neonatologist I had never met told me he would do everything he could to save Bobby’s life. My calm and wonderful husband held my hand tightly with such love and bravery as Bobby cried and was taken away by the medical team who worked on Bobby to ventilate him.  My son was incredibly well cared for; everything was done to try to save him. Bobby was transferred to the NICU where coincidently a wonderful neonatologist Pamela, who had taken care of Lily when she was born, worked tirelessly to save Bobby; she was incredibly warm and kind to us and to our family. The hospital Chaplain joined us to support us through this traumatic day and took pictures of Bobby, none of which we remember her doing. She was kind and loving, unassuming and compassionate to both us and my family. She subsequently led our ceremony so beautifully to say goodbye to Bobby at Mount Jerome. A team of midwives cared for and supported me along with my mother as I tried to recover, waiting desperately for news from the NICU where Des was being supported by my father. Bobby’s lungs sadly did not match his terrific spirit and he passed away in my arms with my husband by my side and my family surrounding us. I know everyone who took care of us in these months and days grieved his loss. We spent five days with Bobby; an incredibly difficult time that just felt so wrong, we should have been bringing our son home. Nurses and doctors were so generous with their time; sitting with us and talking about Bobby’s short life. The day after Bobby died, a wonderful Now I Lay Me Down To Sleep photographer arrived to take the most precious photos we will ever have; it was one of the most difficult things we have ever had to do. We will be forever grateful to this amazing charity. Feileacain provided us with a cuddle cot and we got to spend these precious yet unbelievably difficult days with our son and they continue to support us. The bereavement team in the Coombe dressed Bobby, talked to him and told him how beautiful he was; he was just perfect.

This was our experience and one that I will take with me for the rest of my life. To those who haven’t had our experience, I can only imagine how torturous this was for you during the most difficult days you will ever face. I am in awe that you are still standing because frankly it is the human experience that we witnessed that helps us take steps each day.

I recently read Dr Jacky Jones’ article in the Irish Times and her thoughts on the Irish maternity services. To her mother, my heart aches for you and to the Ireland of our mothers and grandmothers who were denied time with their babies and who silently put one foot in front of the other for the rest of their lives. And here we are 40 years later, and we still haven’t got it right. The new HSE guidelines for Pregnancy Loss and Perinatal Death clearly define the care parents and families can expect to receive following a pregnancy loss or perinatal death. For me it is so much more than that; it is the human beings behind them that will ensure that people experience a compassionate one all over the country.

Sadly we will never have a perfect world for parents who will experience miscarriage and perinatal death. Parenting, teaching and enabling better soft skills training in hospitals and medical training may help bridge the gap and we all have a role to play.

To the doctors, midwives, bereavement teams and nurses currently working in maternity hospitals; please understand the impact of your words to people as they face loss or guarded outcomes head on. Many of you get it so right, but some of you get it wrong. Slow down and listen; kindness gets people through the darkest days of their lives. If you face difficulty not knowing quite what to do or say, ask parents what you can do to help them.

To parents and teachers all over the country, it is our duty to rear and teach our children to be kind, empathetic and patient. As the wonderful Brene Brown so simply tells us, be the adult you want your children to be and be a model of kindness, empathy and patience to them. Show your kids what great listening is and the importance of compassion. Some of us are rearing the next set of medical staff in the maternity services, and we owe it to future bereaved families to ensure they feel those warm arms around them during the worst days they will ever face.

 

 

 

 

 

 

 

It’s August…

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12 weeks ago right now we were spending our last hour with our beautiful son. Throughout Bobby’s pregnancy I never knew what August would feel like; would he be here or would Bobby have passed – it felt like a time that would literally never come. It was hard to imagine what August would be like as I couldn’t imagine ourselves as grieving parents yet the thoughts of months of hospital I welcomed and feared; it was his only chance. So here we are in August and I can’t remember a lot of the last 12 weeks. It’s August and we know Bobby’s fate; August and we are here without him. It’s August and  we are planning Christmas wondering how the hell we will manage. It’s August and today was an ok morning spent with wonderful friends in a really lovely food market. It’s August and I found myself really enjoying an outing with Lily and my adorable nephews this week; a change from just about surviving every other outing until now. It’s August and Des is gone off cycling, something he took up to help him cope with Bobby’s loss. It’s August and it’s nearly time for school for Lily; I’m both excited for her but terrified of that monster grief hitting me again like only it does so well. Bobby will never go to school. It’s August and I’m still oblivious at how being in the real world floors me when I least expect it; It’s like I am plodding in a swamp with a blind fold waiting to slip and fall unexpectedly. It’s August and I really wish I was deeply religious and knew where Bobby was. It’s August and we are surviving and I am so proud of our son. It’s August and I don’t know how we will get to Christmas; but we will, because Bobby leaves footprints all the time.  Footprints of love and support; it still takes my breath away something a dear friend said to me during the week “I want to understand your pain more; I want to be better to support you”. She’s already a footprint yet continues to imprint more.  A wedding of dear  friends during the week; it was beautiful yet personally tough. Who knew my friend would validate my feelings so selflessly with no judgement.
Letters and cards continue to come. Some days I don’t know whether we’ll ever get over this and some days I know we will find our new normal; a steady new normal without the lashing I feel I get all too regularly right now. It’s August and Lily is still waking up at night and continues to process and understand. It’s August and I’m walking, training and dabbling with the real world. A good old friend and I cry and laugh our way around our 7k walk regularly; it has literally helped to move from one day to the next. I survive with an envelope which tells where I need to be. Who knew trauma, loss and grief could leave you unable to remember what day it is, what you are doing tomorrow and bedazzled if someone asks you are you free next week. We’re different, I’m no longer afraid of anything; I’ve seen the worst happen. I’m more honest than I have ever been – I don’t want anger in my life. I’m braver than I was before yet incredibly sad. It’s still day by day hour by hour and breath by breath. The future seems incredibly unclear but one thing that is certain is that Bobby’s footprints will guide us. And in the midst of it all, we have a feisty, smart and incredibly curious fortune cookie asking the most ridiculous questions every day that give you that chuckle you so badly need.

What would you do if this was your child?

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What would you do if this was your child? This was a powerful question I truly believe changed the course of Bobby’s journey at earlier stages when we had a lot of hope.  Last week, almost 11 weeks on from Bobby’s death,  I scrambled into the Insomnia coffee shop at the top of Grafton street before Lily and I were to board the Viking Splash with my friend Aoife and her son. That Justin Bieber song ‘Where are you now’ was playing; a song that brings endless tears when I hear it. My heart aches to know where Bobby is right now.

It brought me right back to March 12th when my obstetrician Deirdre had called me, as I sat in that same Insomnia coffee shop with Aoife, to see had we left the country.   I had come into town that day quite literally dragged myself along with a smile on my face hand in hand with Lily. She knew nothing of the utter anguish I felt every day of my pregnancy from the moment of Bobby’s diagnosis. My heart was broken. Deirdre obviously knew us well by then; there was nothing we wouldn’t do for our son. Back then, Des and I had just sought a second opinion  at 22 weeks following Bobby’s CDH diagnosis. I had queried the lack of lung bypass treatment readily available in Ireland. During the second opinion, our doctor had outlined the criteria for lung bypass (known as ECMO) and that Bobby may not even qualify. I then asked him that question ‘What would you do if this was your child’. And there it happened; it humanised our son and our doctor changed his answer. He would ensure his child was born where ECMO treatment was available. We had gone back to Deirdre all guns blazing wanting to move country; she managed to talk sense into us, for a short while. I urged Deirdre to ask her colleague that question;  a doctor she had mentioned had worked with many CDH cases previously in Prague. Please ask him what would he do if this was his child?

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I told Deirdre I was still in Dublin. And suddenly there was a plan. Deirdre had spoken to her colleague, asked him my question and suddenly there was a way forward! The tears streamed down my face. It was a Saturday; Deirdre was on call and she had had a lengthy discussion about our case. And now we were going to Belgium to see a CDH expert. I will never forget that moment, that feeling of hope, of feeling heard and it all went back to that question. Its a question I went on to use throughout Bobby’s journey; its a question I urge any parent with a sick child. Its a question I will never forget for the rest of my life. Its one of Bobby’s many footprints and I am so grateful to my own mother who always taught me to question things medically when in my heart I felt stones were left unturned.

Mommy I want Bobby

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Its August 13th and we lost Bobby 10 weeks ago today. My beautiful, feisty and courageous daughter came up the stairs today to tell me she needed me and how she wanted Bobby. I know that ache, I feel it every single day and today I could feel her little ache. And I could do nothing for her but tell her I loved her and that I understood. We went downstairs and we hugged. And she said it again, Mommy I want Bobby. So I did what people do for me, I followed her lead and I didn’t change the course of the conversation; even though I wanted to.

I followed my intuition and I asked her would she like to see his photos; other than a beautiful canvas of Bobby given to us by dear friends, Lily had not seen any. My heart told me this would give her some comfort. I showed her the picture of the moment she met him for the first time; right after we had told her that he had died and given her the choice to see him or not. I showed her the picture of Bobby in his parent’s arms, alive before he died. She had never seen him alive. I showed her the beautiful pictures that the wonderful charity Now I lay Me Down To Sleep Ireland captured for us; the photos that were so painfully difficult to be a part of back then but so comforting to have now. She smiled proudly; she said how cute and beautiful her brother was. There was so much love and she asked to see more. I just kept following her lead. She asked me could we light a candle and we did and she smiled; we were honouring his existence together and she beamed with pride also wrapped up in pain. Lily decided we were going to make a promise to light a candle every time we all felt sad in the future. And off she skipped asking for her breakfast, making an aeroplane out of paper and being your normal 4 year old.

I had a choice in that moment today; I chose to be brave and slide into the moment of discomfort and of utter pain.  I could have swiftly changed the subject. Who knew grieving for your son could be so intensified by the grief of your little girl; we strive everyday to be upbeat for her and not talk about our pain around her. We simply follow her lead and she chooses to  brings her brother into daily life and conversation. The words of a compassionate psychologist we had spoken to numerous times during Bobby’s journey rang in my ears; you cannot take away her grief, you need to allow her the space to grieve. I am so grateful for these words as they continue to guide me as I help her deal with his terrible loss.

How I coped during my pregnancy

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March 1st will always be one of our many new dates to remember. It was the day our beautiful son Bobby was diagnosed at his 21 week scan with a birth defect with a survival rate of 50%. 

People throughout the 14 weeks from diagnosis to his death often asked me how was I managing to keep going with determination during a difficult pregnancy. The truth is I believe we all do our very best when faced with very difficult situations. I do have an inner strength and determination much of which I learnt from my parents and I do believe I learnt some great new life skills during my life coaching diploma. I am by no means perfect,  nor do I think I got it all right but this is what helped me through the worst times of our life.

Focus on Love and Hope: The intense love we had for our son and the diminishing hope we had that he would live, kept us going to the day he arrived. It definitely helped us to survive and keep things somewhat normal for our daughter who, until towards the end, did not know her brother was facing a tough time once he landed in this world. We became almost experts in CDH through research and speaking to other parents; something that I learnt from  my own mother who worked as a NICU nurse in our children’s hospital. We never stopped asking questions and there is nothing we wouldn’t have done for Bobby.

Prioritise sleep: Sleep is an essential coping mechanism for me; I pretty much set the clock to go to bed. If I did not sleep well, I could not cope with the emotions I faced on a daily basis; the fear of what was to come and the not knowing if our baby would live or die.

Embrace the support around you: Love and support get you through the most difficult times of your life. If you are supporting someone through loss and any difficult time; surround them with love, its quite simply gold dust. I used my voice with my wonderful family and friends and found myself asking for help and accepted help that was offered.  Sometimes people get things wrong with the very best of intentions but I was honest and relationships remained intact or even strengthened. I am so grateful to my family and friends for all they did for us. Bobby’s journey has also resulted in some new lifelong friends and what a legacy that is.

Consider the amazing help from support groups: Support groups are not for everyone,  however I joined some private CDH Facebook groups where I could interact with parents of surviving CDH babies and also those who did not make it. I learnt what questions to ask and also educated myself on what was ahead no matter what the outcome was. You will be amazed at the wonderful people you meet who are facing the same battle you are on a daily basis and you may just learn something new.

Trust the power of Intuition: I learnt a lot about the power of intuition during my course and it was always something I tapped into in life but I turned it up full force and it did not fail me right up to the point when Bobby came early. My gut told me I was in labour and thankfully I followed my intuition or Bobby’s delivery could have been even more complex. My intuition told me to change consultants at one point; we were not a match and I truly believe it was the right decision.

Know your triggers: Patterns developed around weekly scans at the hospital. Fetal medicine specialists are not going to give you good news unless they are absolutely sure. We learnt to mind ourselves around these Tuesday scans. Wednesdays and Thursdays we hid away a bit to recover from the blows and then planned nice outings with Lily and friends to keep us going to the next blow.

Maintain healthy boundaries: I will openly admit that I was selective about whom I spent time with but I also was assertive if my boundaries were not recognised e.g. I could not handle questions so I was honest with people. I had a private group setup to update my friends as I could not face updating people individually

Strong people stand up for themselves, the strongest people stand up for others:

I now know the importance of having an advocate when you are facing a really difficult time. I am so grateful we had such a wonderful obstetrician in our corner who fought passionately for myself and for Bobby . I cannot emphasise how important this was to us and how greatly it helped us.  I know now if we ever face adverse times again, we will seek out an advocate if we don’t already have one in our corner.

 

What kept me putting one foot forward was a powerful quote I read over Christmas 2015 whilst pregnant with Bobby. The book was “Daring Greatly” by Brene Brown and the quote was ‘Be the adult you want your children to be’.  Brene talks about parenting not being about the discipline methods you use. Her parenting manifesto was simple; you have got to strive to be the adult you want your children to be. I lived by this throughout Bobby’s journey and I am trying my utmost to do it as I grief his terrible loss. I was as strong as I could possibly be when needed; when we were in theatre for his birth surrounded by 20 odd people I knew I could not fall to pieces. I had to be strong for him and breathe through the horrific fear and anxiety. When we were told nothing more could be done and I thought my heart would stop beating with utter devastation, I knew I had to be strong as Bobby died in my arms with my husband’s arms around him. I remember my own mother telling me to be strong for Bobby and to fall apart later and this is what I did.  As we go through the grieving process, this quote is very much at the forefront of my mind. We are trying to be the adult we want Lily to be and what we would have wanted  for Bobby. We are trying to face his terrible loss with strength,yet showing that it is ok to be vulnerable and grieve. There are days we will get it right and days we will not; but we will learn from the tougher days and keep ploughing on to ensure Bobby’s legacy is a powerful and positive one and that we are better because of him. Our son was beautiful, handsome, and courageous; he felt our presence and squeezed our hands. Our moments with him were short and our hearts are broken. Because of Bobby and the journey we had together, future Irish CDH babies may have their survival chances increased. There is now a network built with the CDH experts in Belgium and other future CDH babies who qualify for in utero surgery will not need to battle through the HSE process for funding; the master of each hospital can give approval to proceed. Life is not about waiting for the storm to pass. It’s about learning to dance in the rain. We love you Bobby Aidan Fortune x