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.

Mommy I want Bobby

14012159_10153560387697030_371992991_n

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

Learning_to_Dance_in_the_Rain_facebook_cover_1330081742.jpg

 

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