Changing my story

A few weeks ago I was taking my daughter and her friend to their dance lesson. As always, they were in charge of the music whilst I chauffeur them around! That week’s request was yet again the Matilda soundtrack, and despite my protests I was soon singing along to ‘Naughty’ and ‘Revolting Children’. The lyrics are firmly fixed in my memory from hearing those songs on repeat; not because I actually enjoy them! 

The girls’ excitement and dance moves finally came to a stop when Ms Honey and Matilda started singing ‘Still holding my hand’. They were absorbed in the song and I remember smiling at the sudden calm and the soft voices coming from the back seat. As we pulled up at the lights, I looked in the rear view mirror and caught a glimpse of my daughter mouthing the words, looking straight back at me, smiling:

“You were holding my hand

You were just there for me

Quietly taking a stand

Changing the end of my story for me”

I didn’t smile back. Instead, I quickly turned away and shook my head. I felt my eyes prick with tears and fought exceptionally hard to keep them at bay by concentrating on the lights changing to green.  Finally they did and I blocked out the end of the song as I finished the journey to the dance studio. I got out the car, gave my daughter a hug, and shouted “Have fun!” I got back in to the car and drove home in silence, pulled up outside my house and burst in to tears. 

I knew what had happened. It was a ‘trigger moment’. As I looked at my girl singing away in the back of the car, the vision changed to me holding Isaac’s hand in the NICU.  These tiggers don’t happen so often anymore, but with PTSD when they do happen it feels like they come out of nowhere. It takes you completely unaware and in the moment it is frightening. I used to think I was going mad when they first happened. These upsetting images of my dying child would flood my mind at the most random moments and the sheer confusion of it all would send me in to an anxiety attack. My counselor helped me to understand my tiggers, and it appears music is a huge one. Forget the news, tv, and real life tragic events; none of those make me well up! The running joke between my friends and family is that I’m ‘dead inside’! I really don’t shed a tear for the obvious things. But you can’t escape music unless you want to live in a truly colourless world. It’s the power of the lyrics: the words. When Dobby died in the last Harry Potter book I balled like a baby, yet I stood at my son and my mother’s funerals with a dry face! 

Over the years I have found ways to deal with the triggers. I can quickly snap out of those moments. The first thing I do is my ‘snow globe’ move. The shake of my head allows me to change the vision back to ‘normal’. I then breathe and focus on what’s in front of me. Mindfulness: it works in this context well.  I then wait until I’m in a safe space and let it go… Better to let it go indoors. No one wants to see the true face of anxiety. It’s ugly, frustrating, and if I’m honest, scary. The thoughts I have range from grief to playing the blame game. You can’t do ‘normal life’ with PTSD in front of people; and definitely not in front of your young daughter and her friend! I must admit that afterwards I’m slightly in awe of how I cope with them. This control was not possible 10 years ago. And, it’s always a little worse around this time of year. The end of the school year equals the end of my son’s life. A constant reminder of how short a life can be, not that I really need reminding that he should be 11 years old today. 

After that incident, I started to think about ways to ban that album on future car journeys. I’ll go back to upbeat R&B and garage for a bit! But as I scrolled through my iTunes library, I was curious to see exactly what it was that set me off during that song. I read the lyrics that evening, and although I felt the same panicked response start to overwhelm me, I realised something. The words actually associate with my daughter more so than Isaac. I have literally been holding her hand for nine years now! She is the reason I keep going when anxiety overwhelms me. I pull it together at the wheel and keep driving forward because of her. She is the person who ‘changed my story’.  Without my rainbow baby I might still be the angry and broken woman I was when Isaac was taken from me. I know my daughter helped me to ‘park’ the bitterness I feel towards the people who destroyed mine and Darren’s lives. I couldn’t have possibly have accepted the joy and happiness she has brought to my life if I wasn’t able to put that anger to one side. And although I’m not ‘fixed’, although I still have those triggers, and of course, miss my Isaac so very much, I am stronger and more able to cope with life because of her.  

My daughter hasn’t fixed the Isaac shape hole in my heart. I still long for my baby boy and miss him forever. However, those lyrics made me realise something: she is the one who brought feelings of hope back to me. The rest of my heart is now filled with love and admiration for this kind, beautiful child who holds my hand everyday. I think her big brother would be proud of her. And I think Isaac would be okay that this blog is about the hope she gave us because in my daydreams he is still holding my other hand. 

So, this blog is for Isaac’s little sister, Isla. The little girl  who changed my story.  ❤️

If you would like to donate to the Evelina Children’s Hospital in memory of Isaac please go to: https://www.justgiving.com/fundraising/running4isaac?utm_source=copyLink&utm_medium=fundraising&utm_content=running4isaac&utm_campaign=pfp-share&utm_term=4666f5358710496a888acb9da9edefd2

Ten years in the planning

I’m going to be honest. I’ve tried to sit down and write something which could be seen as inspiring; or a piece that sends out a message of hope and positivity. However, after weeks of trying to prepare Isaac’s 10 year anniversary blog, I’ve realised that’s just not who I am. I’m not inspiring. I don’t have anything significant to say about grief; and truthfully, I can’t admit to being ‘over’ the death of my son. Yes, time is a healer. This cliche is true. I don’t cry every day or feel empty inside still. But, I do miss him. I still feel cheated. And, I’m still bloody angry that my little girl doesn’t have her big brother around.  So whilst I can, and will, acknowledge that some amazing things have happened over the past decade, I must be honest when I say this blog isn’t going to leave you feeling uplifted and full of peace. There is nothing uplifting or peaceful to come from loosing a child. It’s awful. And a lot of what I still hold on to isn’t bringing me peace at all. So, what am I going to say in this blog? I’m really not sure, but for once I’m going to have to wing it.  I’m breaking all the rules here. No English teacher would condone writing anything without a plan, but just as life is messy sometimes, so is today. 

The one thing I did plan was Isaac. In fact, trying for Isaac couldn’t have been more planned! When you go through your first round of IVF you are full of both anxiety and excitement. It’s a bit like a project which could lead to a fantastic prize! You have lots of dates for your calendar for scans and monitoring, along with packs of needles and vials full of hormones.  You join fertility groups and have online discussions about the best ways to succeed at IVF. You spend a small fortune on fancy vitamins, high protein diets, acupuncture, relaxing massages and basically anything Dr Zita West’s book has told you to do! And when the very uncomfortable egg collection procedure happens, you cross every finger and every toe that a few potential contenders will be viable. The science now takes over and you hold your breath to see if you have created an embryo. Yes! It’s worked. Now you wait to see if it takes and attaches itself to the all important ‘thick lining’ you have pumped yourself full of hormones to achieve. And then you wait, again. It either works or it doesn’t. And when it doesn’t you feel like a failure of a woman. You hate yourself, every pregnant person you see, and sink in to a horrible depression until you decide to max out a credit card and give it one more try. However, this time you’re even more scared and anxious than you were the first time around. We did all that. The second time around we got Isaac.  It was worth it. 

I’m ashamed to say that after we lost Isaac, I doubted that last statement for a while. How was it possible to go through the ordeal of IVF just to then watch him die a week after he was born? The trauma of his birth and the events which followed left me with all kinds of awful, illogical thoughts. The story of his birth and the hugely irresponsible neglect of North Middlesex hospital is detailed in earlier blogs, so I won’t tarnish this account with their negligence. Suffice to say, the whole experience has left me a changed person; one that is better in many ways, but also someone who has dealt with those  consequences, and not always very well. But, I love my son. The IVF turned out to be nothing in comparison to watching him die. And even though I had fleeting moments of wondering what the hell was the point,  I know I would nearly die again to have him here, even just the short time we had together. I don’t regret a moment of being his mother. 

But, the life of a bereaved mother is not easy. In those first few years, I felt hurt like I had never experienced before, and may be the physical sensation of pain is the best way to describe the loss of a child. When you break a bone, you cry out in shock. The pain is biting and raw. You don’t know how to cope and you are desperate for the hurt to stop. You continue to howl in pain until someone comes to your rescue. But, even with the help of experts, nothing can completely fix what’s broken straight away. As the bone heals, the agony begins to die down, but what you are left with is a scar where that fracture once was. It is a continuous ache. It doesn’t ever go away but you learn to except it’s weaknesses. You know what you are capable of and you bench yourself when you fear you could get hurt again. This experience of living is not a complete one. The injury is forever though and you have to accept it. Loosing a child is like that. You will never be whole as the break was too deep. And much like that fractured bone, you will never be perfect and completely whole again. You are fragile and weak now, and it doesn’t take much to break you.  

But life doesn’t stop just because you’re a bit broken. Eventually you have to join the rat race again, whatever that might entail for you. My race was always to have a child. But I had had one and now he was dead. I was in a world of pain, and hating myself for allowing him to die. I had failed. In fact, I was wishing I died with him. I wanted the pain to end and in my mind I actually planned ways to make that happen.  That’s not something I’ve ever said aloud or openly admitted to before, but that was how extensive the pain was. Thankfully there was something which stopped me from accepting that this was it. I want to say it was my husband, and my family and friends who kept me going, but it wasn’t. They loved me hard and willed me to live again, but sadly logic doesn’t like to listen to common sense when you are suffering from that kind of grief.  What I still wanted was to be was a mother.  I wanted to hold my baby again and hug and kiss him, but that was impossible right?  So, still broken I decided the only way to cope was to have another child, and God forbid anyone who got in my way! I was like some unstoppable force on the track. No one was determined to win that baby race as much as me. I was still in the early stages of grief, but I now had an alternative plan. I held on to that plan like it was the blueprint to happiness. I pushed aside my pain and motored on. More IVF. More debt. More failure. Keep going. More IVF. More debt. Another fail. Try again. And then… Gold! We got our daughter. 

God, I love that child! I love her like nothing else in this world matters. But if I’m honest, she began her life as replacement for the child that died. Thinking about that now, I’m thoroughly ashamed of myself.  Another confession: at my 16 week scan I was told I was carrying a girl.  I cried. These were not happy tears though.   I wanted a boy. I convinced myself that if I didn’t have a boy then life couldn’t be perfect again. I cringe when I think about it now. Getting used to the idea of carrying a girl took time.  However, any thoughts of this baby being a replacement for Isaac soon vanished once I brought her home. She was Isla. In the most basic of ways she was nothing like her brother: she cried; she ate; she smiled. Basically, she lived. Isaac didn’t do any of those things. You can’t compare children to each another, especially when you never knew your first child long enough to do that. And thank goodness they couldn’t be compared. Isla deserves to be her own person. She will always be our rainbow, but she is not Isaac, and for her sake, I’m bloody glad I got over that early on. 

So, I got what I believed would make me better. I had run the baby race and won. I had the most beautiful baby girl who I was completely in love with. But, the victory was short lived as the grief slowly began to rear it’s ugly head and returned with a vengeance.  I had flashbacks of Isaac’s death; I went through the ‘what if’ ritual about 20 times a day and replayed alternative scenarios in my head of should have been done to save him; and I felt out of control and unable to concentrate on anything in the present. I was tired of fighting it. I’m still tired. 

Why was this happening though?  I asked that question to my therapist and GP many times over.  And in truth, they gave me a reason why, but I refused to deal with it.  When I started trying to get pregnant with my daughter,  I had tried to ignore the grief.  I addressed the symptoms instead of the cause.  I wanted quick fixes to the anxiety, insomnia and crazy thoughts I was having. I didn’t have time to open up about how I felt as I was too busy trying to get pregnant again.  And when Isla came along, I was too busy trying to be the best mum I could be. Of course, there’s the obvious moments where I give in to the loss: the anniversaries; seeing children who would be his age; the rites of passage like starting school etc. I accepted what they meant to a bereaved parent and would  ‘feel’ the loss for that time period. After that, I would tuck it away and go back to having anxiety symptoms that I couldn’t get on top of because I refused to link it with the loss. But you see, it wasn’t completely my fault; life has a funny way of allowing you to miss someone, yet keep moving, therefore, not giving you time to process how you’re really feeling. And I did keep going through a number of other traumatic experiences that made me feel like I was cursed. But they needed attention too so it was easier to tuck away how I felt about the loss  of my son and devote time to the practicalities of what needed done in those moment.  I had the five year legal case to get justice for Isaac.  Then I had the accident which left me disabled. Next, my mum died after a long, cruel illness. And adding to those things were the other day to day struggles with anxiety, flashbacks and general self loathing at times for not being able to control those feelings.  But I kept going, refusing to accept defeat and wave my white flag. The running joke amongst family and friends is that I’m dead inside. I’m not. I just don’t talk about it. I don’t want to feel sad and depressed. And to be honest, after a while, people stop asking if you’re okay when you don’t automatically say “No, I’m not”. 

I guess this is where I messed up. This is why it’s been so hard these past ten years. If I had opened up and talked about what I was really feeling may be I wouldn’t have to deal with this ongoing anxiety and fear. If the last 10 years hadn’t been so awful, maybe I would be at peace with Isaac’s death. But, life hasn’t been so considerate and as a result I kept dealing with the symptoms of anxiety without ever addressing the fear it ultimately comes from. And, that’s what I live with: fear. I’m scared I will die and leave my baby girl. I’m terrified of loosing more loved ones.  I’m living with fear about the future, so much so that I hate to make plans in advance. Because, what’s the point in a plan? It can all change in an instant. 

As I said earlier, there’s little that’s inspiring in this blog. I can’t promise anyone that after loosing a child you will ever feel normal again. However, during these the last 10 years I have had to learn to cope with my grief, albeit not as well as many of you may have believed. But after yet another period of anxiety where none of my usual tools are helping, now I’m ready. I know just getting on with things and living in this fear is not enough, and for the sake of my own wellbeing I need accept what it is that has created this fear and anxiety. It’s guilt. 

I blame myself.  I should have acted quickly. I should have screamed at the midwives to do something. I should have taken better care of myself. He died because of me. And, as a result, when anything bad happens or when my anxiety flares up; I have a voice inside my head which tells me I deserve it. Rather than listen, I have pushed those feelings of guilt back; and my mind and body punishes me further with anxiety for not admitting to where this feeling of guilt comes from. 

Of course it’s not logical.  Deep down I know that Isaac’s death was not my fault; the 42 accounts of negligence were not my doing.  But ten years later I’m finally understanding that the events of Isaac’s death must be addressed if I want to feel better.  I don’t want to live in fear anymore  I don’t want to remember my son through guilt.

So, now I have a new plan.  Past experience has taught me not to expect it to stay on course, and it might take me another 10 years to feel better. However, the difference between then and now is that I know to expect bumps and forks in the road. As long as I accept that there is no quick fix to my anxiety and grief, I’ll keep moving in the right direction though. No more standing still and fire fighting. I want to start living in the moment rather than catastrophising about the future; and this needs to happen now the sake of my daughter. In Isaac’s memory, I need to be brave.  This is the new plan.

We continue to fundraise in Isaac's memory for the Evelina Children's Hospital.  If you would like to donate please go to:

https://www.justgiving.com/fundraising/running4isaac

Hope

 Nine years today we lost our son, Isaac.  

If you had asked me 10 years ago how I would have pictured my future, I can honestly say I would never in a million years would predicted my present. I had always thought that in my 40s I would have established the life I want to lead.  I’d be living in a lovely, tidy (!) house. I’d be successful juggling my dream job with chaotic children running around me.  About now, I would  be getting ready to holiday in an exotic destination.  With my mum coming with us, I would have a babysitter on tap so going to the gym and nights out we’re not a problem. (Okay, may be the gym was a long shot!) Happy ever afters don’t really exist though and my reality turned out to be something very different.  

I could never have imagined my mum would have passed away. I would have a horrible accident that would leave me disabled. The world would face a global pandemic and as a shielder I’d become a prisoner in my own house.   I would struggle with PTSD and anxiety every day. And, that I would face every parents nightmare: the loss of a child. Even listing those things shocks me. But,  I know this past decade has brought about horrors for others who are close to me too. I have watched with sadness and disbelief too many times. 

I have often lived in a land of ‘what ifs’ regularly, especially with Isaac. It’s sometimes much easier to shut your eyes and let time pass you by rather then live with the reality. But reality has a way of pushing you forward. My reality after Isaac wasn’t pretty. I didn’t talk to anyone. I couldn’t swallow food. I thought I would choke and die if I did. Not really sure what my logic was there, but it kind of made sense in my head to protect myself. I was desperate for my baby; and desperate to try IVF again, even though I now know I wasn’t ready. I saw the looks of concern from friends, family and especially my husband as I pushed on with this. But another baby wasn’t going to bring Isaac back so ultimately I would never get what I desired. And I had so much anger; so much hatred for North Middlesex  hospital who caused this great tragedy. 

But this is not an ode to the life I wished I had, or a pity party for the life I’ve got. It’s more an acknowledgment of what has happened. I do believe it’s a good job we can’t see in to the future. If I had known this was all ahead of me I’m not sure how I would have coped. Quite frankly, I would have had panic attacks on a daily basis! But, the survival instinct kicks in and you lean to cope. Not very well sometimes. Not without battle scars. And certainly not without the help and support from the professionals,  friends and family I have around me.  

I had to learn to admit I needed help; something completely out of my nature. It started gradually. Two friends who had lost their own child reached out. They made me realise I wasn’t alone. They understood and I could talk openly to them. This led to me opening up and speaking to my friends and family who had sat patiently waiting on the sidelines for me to speak to them. They were a source of comfort and hope for normality. St Thomas’ hospital where Isaac and I were transferred to reached out after Isaac’s passing. We met Molly, our bereavement counsellor and I learnt to channel the anger and shock I was feeling through talking. Our consultant at this hospital also reached out and we slowly learnt the truth about the mess and negligence North Middlesex hospital had caused. This eventually led to the six year fight for justice. It also led to the charity work we started which ultimately led to us becoming ambassadors for the hospital. My GP reached out and found me a CBT and trauma counsellor who gave me back normality and control. He helped me learn to eat again and cope with the anxiety; he still does. Even the IVF clinic reached out and eventually gave us our rainbow, Isla.  She was not the substitute baby that I had craved for, but an addition to my family who has brought back happiness, hope and joy. All these people saved me and gave me back my life. May be they even gave me the strength I would eventually need to cope with the future events that followed. 

And now, especially through Covid, it  has never been more important to come together and support one another. I learnt how to do this the hard way. Without those lessons Isaac’s passing has taught me, I wouldn’t be here now. There is still no ‘happy ending’, but I know that Isaac wouldn’t want me to suffer. I know he would want me to keep going and face whatever comes our way with the strength and love he showed us in his short life. But I wouldn’t have that strength or love without the hope Isaac led me to find. 

Thank you Isaac. 💙

2020

This year the world has had to learn to ride a tide of fear. The COVID-19 global pandemic has pretty much disrupted every aspect of our lives in the most unmanageable ways possible. For most, the fear has been caused by our inability to control, avoid or run away from this deadly virus which crept up on us, bringing isolation, anxiety and panic. And for others, Covid 19 has had devastating consequences. For these poor souls, their fears have been realised and it has resulted in tragic loss and trauma. It is sadly a fear that I’m familiar with. This emotion is one that has become part and parcel of my daily life. It is a feeling I’ve lived with for 8 years. And it started with Isaac. 

I’ve lived in a cocoon for the past 5 months. Being a shielder has meant my family has had to lock ourselves away from everyone. For months we’ve been stuck within our four walls with no opportunities to see loved ones.  It has been unbearable at time; and I have felt helpless and out of control often. I’m constantly worried about the wellbeing of family and friends, my rainbow child’s mental and physical health, as well my own. And most recently, feeling scared to go out. These emotions are not unique though. I have ridden this tide before. As a parent who has lost a child, these feelings are all too familiar.  Fear and helplessness are not unique to this experience. 

I’ve had these same ugly feelings of helplessness and fear before. They were present for every second of every day whilst Isaac was fighting for his life. I feared what would happen if he didn’t make it. I was terrified every time we were taken in to the ‘family room’ to hear the latest news on Isaac’s condition. I had a sense of overwhelming helplessness as I held my dying son. And then a raw, undiluted pain as he vanished from this life, marking the end of all hope. I knew my life would never be the same. I was scared of what it had become. I didn’t know how I would continue to live past this tragedy. 

But I did. Not well at first. It took me a long time to pick myself up from this crash, but I eventually found ways to control that tide of helplessness and fear again. I got back on and continued to ride that tide, although this time I knew that at any point I could crash again. 

So, how do you control the fear? The simple answer is you take precautions to protect yourself and those you love. You find ways to control everything within your power. From the most simple things like making sure I leave for work early so I don’t get stuck in traffic, to being a complete helicopter parent when it comes to my rainbow child. I need to know everything; from what she is doing when she’s in a different room from me to who the friends are she is playing with.  It’s not healthy is it? And God forbid she gets ill! A temperature is enough to send my anxiety spiraling. This is why I need the control. The fear I have doesn’t wash away because my nightmares still exist. 

In the weeks prior to the Covid 19 lockdown, those feelings of helplessness and fear began to resurface. I remember talking to my best friend each day, questioning why they hadn’t shut schools yet. We couldn’t work out why everyone else had been told to work from home, but we were still going in to large crowds of students each day. We took control of what we could. We disinfected our hands to the point they were red raw. We stopped going out anywhere bar work. We prayed, a lot. And the day I was told to shield I had a very brief moment of relief. Brief, because it quickly dawned on me what this would mean- isolation and lack of control. How would I get in food and supplies? Would my friends and family be okay? How would my daughter cope? These were only a few of the many things that became out of my control. 

We watched the news briefings each day in despair at the numbers of deaths rising.  I felt more and more helpless. And I could hear the same fear in the voices of those I spoke to. It actually bothered me more that my friends were so distressed. I knew I was a ‘nut job’ but what if my friends and family crumbled too?!?  It occurred to me that the only way to cope and prepare for any crashes was to find the strength which had brought me through the worst before. I had survived the loss of a child. I could survive this. 

I spoke to family and friends on the phone; I did online chats and encouraged Isla to do the same. I relied on my network of support, whilst trying to give comfort to those who were suffering and scared; urging them to ride this tide of fear because what choice did we have? It was the strength and love from those close to us that kept us upright, just like it did when Isaac died. In return, I tried to do the same for my loved ones. This time I could give back some of the strength and love I had too. Covid could not destroy that. 

My grief has taught me a lot about fear. Much of what we worry about is out of our control. We can prepare for the worst but it won’t stop what’s coming. All we can do sometimes is reach out to others for support and check on those who could be sinking or have no anchor. The strength that got me through loosing Isaac is the same strength that helps us through times like this.  

If that tide of fear comes crashing, the one thing we can rely on always is the strength of love and support of others. Only then can we ride that wave and know that if we crash we can still survive. 

The importance of being Isaac

Last month Darren and I were invited to attend a multidisciplinary meeting for neonatal staff at St Thomas’ Hospital. We were asked to tell Isaac’s story to a host of medical staff including doctors, consultants and nurses. As much as it was an honour to be involved, it was daunting to say the least. We would be speaking about Isaac to this group of professionals so they could gain some insight in to the way a parent feels when they loose a child. Ultimately, it was to help them better their practice when dealing with grieving families. So yes, daunting, but an opportunity to help make a difference in Isaac’s name. 

The nerves took hold on the journey down and I couldn’t think of any good reason for putting myself through this. It wasn’t just about reliving what happened to us, it was also about speaking to a group of experienced practitioners who deal with child bereavement every day. Isaac’s story is just one of many. Why was it important they knew about it? Why would it be of interest to them? I’ve been on many CPD sessions over the years and I can honestly say by the afternoon I was more than ready to leave! I pictured bored individuals doodling on paper as we spoke about our precious son and decided I really didn’t want to go.  Darren reassured me I didn’t need to speak if I didn’t want to. Instead I made a plan to assume the role of a nodding dog and go along with whatever he said. 

We were met in the foyer by our child bereavement counsellor, Mollie, who had organised the programme for the day. As always, she was kind, calm and incredibly reassuring. She spoke to us about being honest, describing what happened and speaking about what could have been done to help us cope more easily- if that could ever have been possible! I explained how nervous I was; that I didn’t want to do this now. Give me a classroom full of rowdy teenagers to teach and I was fine! But this was something else. I didn’t want to expose myself or how I felt to a group of professionals who might think I was weak, irrelevant or unimportant. Honestly, who am I to tell them how they should do their job? 

But I had forgotten how incredibly secure and safe Mollie could make me feel. In the weeks after Isaac’s death we felt like we were floating in some other dimensional abyss; lost and confused about what had happened to our baby. No one knew what to say or how to help us. We went from day to day with no purpose or energy. What was the point of life? Over time, Mollie helped change that feeling of irrelevance. Just having somewhere safe and private to talk about what happened helped. Her reassurance that it was okay to be angry, upset, vulnerable, lost, did help. What we had to say was valid and being able to talk about Isaac was important. We knew him. He was our baby. We had a right to feel the way we did. Looking back, Mollie saved us. That is no exaggeration. Without her we wouldn’t have been able to process what had happened to us and live again. 

Mollie once again reassured us that the professionals in the room would all want to hear what we had to say.  Her gentle manner and motherly approach was enough to convince me. So, off we went. I pushed Darren in front of me like a little school kid not wanting to go to class. I stumbled in, trying to not make eye contact, but we were led up the front of the room and sat in a circle with the group. I felt exposed to say the least, but I took a deep breath and remembered it was for my son; for other parents of loss; for us. 

I won’t bore you with the details of the talk but needless to say, all my fears of being irrelevant or saying something silly were unfounded. In fact, in a way it was quite therapeutic. We got to speak openly about our son, something we rarely do. We were able to honestly explain the effect loosing a child has on a parent. We answered questions about what the hospital could do to help parents who were grieving. Much of what we said was praise for the staff we had met during Isaac’s care and after. To say we were lucky that Isaac was transferred to this hospital seems almost ridiculous because we still lost him. But, during his time at St Thomas’ he received the best possible care. And we were also cared for by them for a long time after- from the ongoing support from Mollie, to the expert care and advice from Isaac’s consultant, Alan, about his concerns to do with the hospital Isaac was born in. They kept us going; kept us sane. And even now we still speak to them. Not many consultants or nurses stay in touch with the parents of their patients. Ours have. Not long ago, Isaac’s consultant sent me a message thanking us for taking part in the day. Isaac’s nurse, Debbie, is one of the most compassionate and caring professionals I have ever met. She often still meets up with us when we are at the hospital and we message regularly. Again, this only proves how quite amazing and unique the staff at St Thomas’ are. 

We sat in this meeting as the face of tragedy, but we showed there was more to Isaac’s story than grief. His life had a purpose that brought out the best in people. In terms of the staff at St Thomas we witnessed their care and compassion; their professionalism and expertise; and more than anything, their passion to help sick children and their parents. The professionals at the meeting were not only interested in hearing what we had to say but also in helping other parents through the trauma of loss. They showed empathy and understanding about how the whole experience has affected us. By the end, many of the group were in tears. Whether it was through sympathy or just picturing the horrors that befell us, it showed they cared. Isaac was important. 

Seven years today we lost our boy. We hope Isaac’s memory continues to live on by helping others, whether it’s through fundraising for the hospital or helping to educate people on the subject of child loss. Never did we expect our son’s life to have such meaning and such an impact on others to do good. It shows Isaac was important, and still is. 

New Year

Happy New Year to you all. May this year bring you much love, good health and happiness. I’m especially thinking about all those I know who are struggling with ill health, hardship or loss. They are painful journeys, but I hope 2019 will give you some light and hope. 

I will be walking in to 2019 without two very important people beside me. They were two of the most loved people in my life. They fought hard; they made a huge difference to many people’s lives; and they have made me the person I am. 

I started walking this path six years ago when I lost my much wanted and much loved son, Isaac. 

This particular path has been rocky, enduring and full of twists and turns. At times, my feet have dragged. I’ve stumbled. I’ve fallen. I’ve been stopped in my tracks, many times. Why go on when the one person you want to share your journey with isn’t there? It’s been lonely and dark too, especially at the beginning. I was blinded by grief for a long time. I pushed people away. I didn’t want anyone else beside me. It felt like it would be easier just to stop rather than to carry on and take a step forward.

But I’ve found the strength to some how keep plodding along. At times I’ve seen light ahead of me. I’ve had help and support from people who’ve carried me on and led the way. They have been the light that has guided me through those dark days. They are my husband; my friends; my family; my doctors; my counsellors; my mum. And when they couldn’t help, I’ve resorted to using crutches at times to get me over a few bumps in the road. For a long time I refused these crutches, but eventually I accepted they’ve been needed, finally. 

There’s even been moments of hope; the most important was when a rainbow appeared. Bright and beautiful, this aurora of colour has made the steps a little less painful and taught me to feel happiness again. Even when the sky is foggy and grey, this rainbow full of love and hope has been my salvation with it’s rays of colour shining through; leading me in the right direction. I owe this rainbow so much. 

I’ve accepted that this particular path will never end and I will have to continue the journey along it forever. However, as I keep going I have found that there are now moments of happiness, exciting adventures and lots of smiles, despite what the path became six years ago.  And when this path comes to an end, Isaac will be there too. 

However, this year I’ve lost my most important guide along the way. The woman who has picked me up and held my hand many, many times. The woman who I turned to whenever I grew tired and weary. The woman who taught me to walk the path I’ve been given head on and keep going, no matter what. My mum. 

There are so many times I have wanted to reach out to her when i didn’t  know where to turn. I miss her telling me it’s all going to be okay, then pointing me in a clear direction. Mum was like my moral compass. She helped me learn to navigate my world and educated me in the right turns to make. 

Mum is not here to help me finish this journey but I still hear her in all I do. I know that everything she taught me will lead me where I need to go.  And I know she’s gone ahead to look after my boy. 

So, I will walk tall in to 2019. I will continue to navigate through this journey I’ve been given, with it’s highs and very sad lows. And I will hold on to the rainbow, the light and the hope that I rely on to guide me in the right direction. 

Whatever journey you are on, I wish you all a year that sees you finding light and hope where ever you can. And a year where you have the support and love of others to guide you through the good and not so good times.  

Happy New Year. ❤️

Captured

Since I’ve had my daughter I’ve been obsessed with taking photos. Every new outfit she wears requires a photo. Every time she does something for the first time, I need a photo of that. There are moments where I see her taking pleasure in little things like blowing bubbles in the garden, or playing at being a doctor with stuffed teddies- that needs a photo too. In fact, I have over 5000 photos of my daughter on my phone alone! I try to pass off the photo taking as a hobby, but really I know it’s bordering obsession. The walls in my house are slowly becoming a patchwork of memories. Inches of wall space are ordained with these priceless images I take of her. No need to worry about painting and decorating as you can barely see the hall way walls! I’m clearly a show off. I created this little miracle, and damn it, she’s mine to be proud of!

But the real truth is behind the camera phone there is a mother who’s terrified. Im a mother who wants to make sure she will remember every moment she has with her little girl. Im a mother who wants to capture every memory ‘just in case’. The threat of the unexpected; the fear of uncertainty; and the anxiety of the unknown permanently chips away at any optimism I have on any given day. This is how a mother who has lost a child behaves.

I don’t remember seeing Isaac for the first time. In fact, I think about 20 others, mainly doctors and nurses, saw him before I did. I wasn’t even conscious when he was born! I was fighting for my life like he was. We were both unaware of the trauma going on around us. I look back on that day and I feel cheated. It shouldn’t have been that way, and we have evidence of that now. Not only was I cheated out of that first unforgettable glimpse of my baby, but I actually don’t really remember what I saw when I eventually did lay eyes on Isaac. I was coming round from a general anaesthetic and heavily medicated. I had lost a lot of blood and I was in pain. All I remember seeing were wires. Lots of wires. I have no memory of his face, his hands, his tiny body. Just wires. The only reason I know he had fair hair and was perfectly formed was because of a photo I have of that moment. It’s a real memory that I can’t remember happening. And it was the start of my obsession with photos.

On the day Isaac was born he was taken away from me. I was left in that god forsaken hospital alone whilst he was being transferred to his final home at St.Thomas’. I didn’t understand what was happening. All around me strange, peculiar things you don’t expect to happen in a hospital were happening. Nurses were telling me they were praying for Isaac. Consultants were crying. Darren’s mum and brother suddenly appeared out of no where. My mum was being strangely quiet when normally she would take charge of any silliness like this. It all seemed nonsensical. I don’t remember having or seeing my son but I was told he was very unwell and now being transferred. I believe I was told this at least two times every five minutes. I was still confused and still quite heavily sedated. I question whether that was for pain management or to ‘manage’ me now. However, I was desperate to see him. I called Darren and he sent me the photo that was taken of me seeing him for the first time. I saw his face for the first time properly. He existed beneath those wires. He was real. I needed to get out of that hospital and be with him.

After eventually securing my escape nearly two days later, i was transferred to St.Thomas’ to be with Isaac. I saw my son properly in the flesh. Shock and horror set in as I reeled at NASA-like machinery and endless lines and tubes surrounding him. Underneath all that futuristic technology lay my baby dressed in his brain cooling suit, reminiscent of an astronaut ready for flight. Ironic really, seeing as he wasn’t much longer for this world. Looking past this macabre space age scene, his tiny body looked almost lifeless; his expression suspended. But I could see he was beautiful. I could see the fair hair and perfectly formed features. This was the first time I really saw my baby. And of course, I captured it on film. The photo of my first real sight of Isaac is now a canvas on my dining room wall.

With Isaac’s life hanging in the balance, I sat beside him wordless and in a daze. I rarely moved from that spot by his cot for the remaining four days I had with him. I had already lost two days with him whilst being held hostage in that other hospital, begging to be taken to St.Thomas’ who had already secured me a bed. I wasn’t going to sacrifice more time for pointless things like my own obs, or food, or sleep. I knew the reality: he wasn’t going to be with us for long. Beside me the whole time was Darren, and my phone. So, i took photos every time the nurses did something like change his nappy. I took photos of him when he had his hand held by Darren or other family members. I even took photos of him from different angles of the cot! Anything and everything just so I could keep that memory alive forever. I couldn’t forget. I wouldn’t forget.

We even have christening photos. He was four days old when we were told we should arrange a christening with the hospital chaplain, Mia, ‘just in case’. There are no smiles, fancy clothes or pretty church. Instead my son became part of God’s family in a intensive care ward with his mother in pjs and his father unshaven. All of this is etched in photos by the nurses: the divine moments of a celestial boy’s baptism. Another, ‘just in case’ moment captured to memory.

And then there’s the photo where Isaac clasped my fingers. It is my most treasured image of all. It’s full of life. It shows he lived. He was my earthly baby for a while. I look at that photo and I remember his little hand; the pressure of him squeezing my fingers and the hope it gave. There is nothing quite like your baby squeezing your fingers. It’s like they are silently telling you they are yours. They belong to you. Isaac was my baby. He knew I was his mummy. I have the evidence. I know he knew.

The real reason for my obsession with photos? Fear. If I can commit it to photo and it’s then taken away from me I still know it existed. If the worst happens I have an image of those happier times forever, even when my own memory fades. It is real. It happened. I have proof. Isaac was real. He was a fair haired baby, perfectly formed who loved his mummy and daddy. I have proof.

I now take beautiful shots of my daughter and feel proud. I’m proud of the little person she is and I want to show her off. But there is a tiny part of me that does it from fear. Fear of her leaving me too. I hate the fear. I despise it. I despise myself sometimes for even thinking that way. But my anxiety cannot always be tamed. My fear cannot be totally pacified. When the the worst has happened to you, the worry is always there, lurking in all you do. You see, I can take every precaution I can to keep my daughter safe. I can play the odds, take out insurance and plan for eventualities. But I can’t predict the future. I can’t keep what could happen at bay. Life may be wonderful for us in the future. It may not- and that’s the fear speaking- but at least I can keep my memories forever. I can take a photo of moments to be proud of; times we are happy; achievements and small joys. They may make me smile. They make me cry. But they are mine, always.

Simone

How Life Changes

So today Isaac would be celebrating his 6^th birthday if he was here with us. People say that it gets easier, time is a healer…but the reality is very different. Life does go on, but as major events happen in your life, you are constantly reminded and thinking of how different life should be.

Isaac should be about to finish his second year at primary school. He should be preparing to be the big brother looking after his little sister who would be starting at the same school in September. Starting to learn musical instruments, getting more involved with sports – and in my ideal world desperately wanting the Wolves team strip as they embark on their first season back in the Premier league, with Neves written on the back if he didn’t want “Smith”.  I’m sure he would have mastered the dab, be showing us all how to floss and generally growing in to the special little boy that we all know him as being.

It’s fair to say this past year has been incredibly challenging for us. In April, Simone’s Mum passed away, after a hard fought battle with cancer, and losing her has understandably affected us all greatly. She was Simone’s absolute rock and Isla thought the world of her. Her death has affected us all in different ways, and explaining to Isla naturally brought up a lot of thoughts about Isaac as well. We’ve always ensured Isla knew all about her very special big brother. She’s always known that he is up in the sky looking over us all, and over the years it’s shocked us, brought tears, but also brought very special moments that she knows and is happy to talk about her big brother being up in the sky.

Isla often will now talk of him, and that he is up there with Nanny, and also with my Dad who obviously she never got to meet, but has seen pictures of. And it’s not just with us that she talks – we quite often hear how she has been in a contemplative mood at nursery and has spoken with Denisha and Gizem (her teachers at nursery) about how both Isaac and Nanny are up in the sky, can see what we are doing, and are in the stars.

But despite Isla’s understanding of where Isaac is, it doesn’t make it any easier. In fact, as she grows in to the most amazing little girl, it hurts even more that she doesn’t have Isaac here to play with her, to look after her. We see her friends with their brothers and sisters and it is incredibly heart-breaking that Isaac isn’t here growing up with Isla and loving her as much as she loves him.

And this really brings us on to the other main news of this past year. Whilst understandably not as heart-breaking as the death of Simone’s Mum, it has been an incredibly difficult subject that has lived with us over these past 6 years. After 5 and a half years of frankly torture, we settled out of Court with North Middlesex Hospital over Isaac's death. It’s taken us all of this time to finally receive the only thing that we wanted – an apology that the actions of the hospital and the staff at his birth had resulted in Isaac’s death 6 days later.

I feel it’s necessary to go into a bit of details on what has been happening over these years and the impact and difficulties it has caused us – after all, one of the purposes of our page and our blog is to break the taboo’s and give an insight in to what it is like for a family to lose a child. In the days that followed Isaac’s death we were made aware by Isaac’s consultant at St Thomas’s that after reviewing the timeline of events – something wasn’t adding up. Something wasn’t right and that it needed to be investigated. As you can imagine, at the time, and in the months that followed Simone and I were struggling to come to terms with the fact Isaac, who we had longed for for so long was not here with us. So to add to that the fact that, what we thought had been a tragic situation at his birth may have issues that could possibly have been prevented was incredibly hard for us to take.

In the months that followed we met with the team at North Middlesex and it’s fair to say we were led a merry dance – initially being told one thing – such as there wasn’t a procedure at the hospital for dealing with a major bleed, to being told the complete opposite. Eventually a year after Isaac had died and after sending a very aggressively worded letter to the hospital and copying in such groups as the Royal Society of Midwives, the board of North Middlesex agreed to meet and in the coming months we had a number of very difficult meetings. Those meetings were to do two things – to get to the bottom of what happened, and also to try to ensure that this would never happen again to another family. What was evident at these meetings – the hospital knew that things hadn’t been done correctly – but their standard view all along was that Simone had had a placenta abruption, and that Isaac was therefore going to die anyway in the circumstances.

Roughly a year after Isaac died, with the help of Sands, we appointed a solicitor and started down the road of a medical negligence case against North Middlesex. We were advised at the time that it would be difficult, and painful, but I don’t think for one second we realised quite how difficult it would be.

Over the coming two years we would get updates every few months – as different expert witnesses were appointed to give their view. With each one, a report was written, and tears were shed – an expert Midwife, an expert Obstetrician, an expert Paediatrician, and then finally we had to meet with a Clinical Psychologist to see what impact the actions and death of Isaac had had on us. It was incredibly difficult to go through, and relive what happened at Isaac’s birth over and over again.

Once our solicitors had compiled all of their information for the case it was then sent to the North Middlesex team and roughly four years after Isaac’s death we were asked to meet with their expert Clinical Psychologist to see what his view was of how we had been impacted. It was constant, it was hard, and we were put in a position where we had no choice but to relive it over and over again.

Eventually, North Middlesex Hospital accepted that they had been medically negligent, but that doesn’t end the case, as it is then down to seeing if they will pay the costs that we had incurred – Isaac’s grave, the cost of the ongoing counselling, the cost of specialist counselling to help us get through what can only be described as an impossible set of circumstances to live with, and most importantly to us - a letter of apology.

It took until earlier this year, with the possibility of going to court looking very likely, before finally North Middlesex came to agreement and issued a full letter of apology. Along the way we had previously received a letter that was seen as appropriate by them which stated that they were sorry for the shortcomings in their treatment of Isaac – but to us this was just a kick in the teeth – we wanted an apology for the actions of the hospital that caused the death of our beautiful little boy.

Eventually that was received, but not without legal sacrifices – we had to concede that I was not a victim in the medical negligence of Isaac’s death – because he had survived for 6 days – and through ‘dawning conscious’ we apparently should have got used to the idea that Isaac was going to die and as a result not suffered any form of post-traumatic stress. If it wasn’t for the fact that it had been Simone’s body that they were negligent to, we would also have had to concede that she was not a victim as well.  I think it’s fair to say, that this alone shows that despite all the improvements that are happening surrounding support for parents losing a child, or dealing with miscarriage, there is still a long way to go – for courts to use the concept of a car crash (one shock incident) as to whether we should suffer Post Traumatic Stress or not when our son fought so hard for 6 days to spend time with us – showing us his strength, his determination, his love…….it’s heart-breaking.

But what’s worse, is that not only have we lost our son, our beautiful daughter has lost her brother. And what is truly crushing is what came out in the medical negligence expert witness statements……..if North Middlesex Hospital had followed the correct timing and procedures for a suspected placenta abruption, the experts have said that Isaac would not only have survived – he would have been fully healthy , with no brain damage.   If North Middlesex Hospital had delivered Isaac four minutes earlier……..it is believed he would still be here today although would have suffered a level of brain damage. Isaac was stolen away from us as a result of the actions of the hospital, but more importantly Isla never got to know her big brother. He should be here with her as she grows up.

And that is the simple, sad, devastating facts.

Isla is an amazing little girl – she is incredibly excited about celebrating Isaac’s birthday this weekend with a super hero and fairy picnic in his honour…….but he should be here…..blowing out those 6 candles that will be on his cake. Life does move on, time does to an extent heal, but when you lose a child there are constant reminders, and you can never heal completely. Part of you is gone forever. There will always be situations when you know he should be here physically with you instead of looking down over you, with his Nanny and his Grandad. And we know that our situation is repeated up and down the country with every other family that has sadly had a child that has grown their wings far too early.

Happy 6^th Birthday strong, inspirational, beautiful Isaac. Your Mummy, Daddy and Sister, along with all of your family miss you very much, and we wish more than anything that you were here with us celebrating today x Through you, there is a lasting legacy. Through you procedures have been changed at the hospital you were born at so that hopefully no other child suffers the way you did, and through you the Evelina Hospital where we all received such incredible care, and where all the fundraising that we do in your memory goes to is able to help prevent other families from going through what we have had to.

Darren x

A Nearly Perfect Picture

I'm sitting on my bed looking at the painting we had commissioned a year ago. It's a picture by a very talented woman who took an incredibly vague daydream I have often about Isaac and brought it to life. It's simply beautiful. It represents my 'perfect, happy place'.

 

Isaac and I are sitting on the banks of a river with our backs towards the viewer's perspective. The sun is out; the water is blue; and there is a pleasant cool breeze that softly blows through my hair. We are sitting under a very green and leafy tree for shade as we certainly don't want to burn with our kind of complexions! I'm wearing a pink and white summer dress and I have my arm around Isaac, who is wearing just a nappy and his 'space helmet' (the brain cooling hood I always remember him in). The overall feeling is one of contentment, calm and peace- a perfectly happy place.

 

I can sit and stare at this painting for ages. I marvel at this little boy, so sweetly sitting beside his mother. May be he is listening to me telling him a story, or possibly I'm singing to him as I do to his little sister (much to her annoyance- "mummy, noooooo!"). Or, may be it’s what I imagined in the day dream and we're just enjoying each other's company, listening to the sounds of the river passing us by. I guess there's real scope for the imagination here.

 

But a few things strike me today, on the eve of his 5th birthday, as I sit and contemplate the reality of this scene. There are a couple of things that seem unlikely. The first is you would rarely see me in a pink dress- it's not the most flattering colour on me! It would also be quite a novelty to see a 5 year old in just a nappy and 'space helmet' in the English countryside. I would have hoped Isaac would be potty trained by now at the very least! And also, what little boy do you know who would sit still beside to his mummy so calmly and quietly when there's a whole river bank to explore?

 

And then I remember and become annoyed with myself. It's not real so why do I need to question it? It's not a memory, it's a day dream; a perfect place I created in my mind. If it was a memory you would be reading a completely different story here. My son wouldn't have died. I wouldn't need to day dream about what we would do if he was here. I wouldn't need a 'perfect, happy place' to take me away from the anxiety of grief. In fact, I wouldn't need this painting at all.

 

But I do have this painting, and for the first time ever it makes me feel sad. It represents that 'what if' part of my mind that just can't let go of Isaac. You'd think after five years I would have found a way of accepting and letting his memory rest; just remember the time we had together; those six days of cuddles and kisses. Why do I seek to have so many reminders of the little boy that should be here?

 

It's not just the painting. Isaac 'memorabilia' is scattered all around me: candles, decorations, framed quotes, songs on my iPod that remind me of him; even the Running for Isaac charity page and blog! There isn't one place in my house, in my life, in my head that doesn't seem to be filled with Isaac. I start to feel sad that I ever had the painting commissioned in the first place.

 

What's even sadder is that I had to have it done. I had to 'create' a memory that doesn't exist to make me feel close with my boy. It's sad that he should be here but was taken away from me. He should be 5 years old.  He should be running around in a real field, exploring the river bank and the nature around it, scrapping his knees as he carelessly trips up from leaping around so recklessly, making me kiss them better before he shoots off to explore something else like nothing had happened. It's incredibly sad that it's been five years, and I can't let go.

 

There's a part of me that is defiant though. Why should I let go? He was here. He existed.  I still love him more than my own life. In fact, isn't that what a mother is meant to do- love their children regardless? Why should that end because he's not here? It never will. I will never ‘get over it' because the day Isaac was born I became a mother. You can't change that.

 

I don't know why the painting sparks such a sad range of mixed emotions in me today other than that fact that I miss him.  I've lived without him for nearly 5 years now. How have I come this far without giving up when my longing for him is still so strong?

 

I just miss my boy.

 

I miss his downy fine blond hair that smelt so pure. The tight grip of his fingers around mine. The all consuming love he made me feel. He was perfect in every way to me. But Isaac was only 'nearly perfect'. That's what I was told from day 1 to day 6 of his life.

 

He was perfectly healthy- apart from the brain damage.  Scans showed that his perfectly formed organs would have worked properly- if it wasn't for the brain damage. He would have been a perfectly healthy, happy, knee scrapping 5 year old boy- if it wasn't for the brain damage.  I've learnt that nothing stays perfect. There is no such illusion anymore.

 

So may be that's what the picture needs to be: a nearly perfect memory. It would be upgraded to ‘perfect’ if it was a real. The effect it has on me can't be one single, perfect emotion. It's a mix of sadness and joy, love and longing- much like the time I spent with Isaac. That nonsensical feeling of joy and sadness we experienced during his life makes just a little more sense now.

 

The picture is a perfect memory that doesn't exist. But for now, tomorrow, for however long it takes, it can stay perfect for a while longer.

 

XxX




We would like to ask everyone who reads this to light a candle in memory of Isaac or a loved one they have lost.

If you would like to donate to the Evelina Children's' Hospital please go to: http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=runningforisaac&pageUrl=13