The Chair

Isaac would have been four years old this year. 4 years old! I shake my head everything I think about it. I have no idea how the time has passed so quickly.

My baby would no longer be a baby. He would be about to start school. I would be shopping for a school uniform and buying him a lunch box. I would be watching his growing excitement for the birthday party I would inevitably be throwing for him and his little friends. I'd spend the rest of the summer soaking up every precious moment with him, and wishing it would never end just so he could stay my baby forever.

I'd be full of pride when Isaac would walk through the school gates on his first day of school. He'd be wearing a uniform that's just a little too large. I would hear my own mother's voice in my head as I justify that baggy jumper with "he will grow in to it". He would give me a cuddle before walking in to school, not looking back, because he's the brave boy that fought so hard to live. School is a walk in the park for Isaac.

Isaac would have a special peg in the classroom where he'd hang his coat. Again, it would be a little too big because I know he'd grown taller as the year goes on. I've come to this conclusion based on the fact that all our male relatives are giants! I know that one day Isaac would tower above me!

He would have his own pencil case and brand new stationary to put in to it. As a teacher myself, I would make sure he was fully prepared with pencils galore.  Paperchase wouldn't know what had hit them!

Isaac would want a chair on a table at the front of the room as he would be eager to learn. He'd soak up every piece of information and store it away for future reference. I know this as that's what his dad is like. Isaac would excel at both Maths and English. Isaac's dad would handle the numbers and I would do the words. How handy for him to have a mathematician for a father and English teacher for a mother! And whilst sitting in that chair, Isaac would be the most devoted student a teacher could ask for. Like his little sister, he would be asking an abundance of questions. I'm sure his hand would always be up! I would hope his teacher would feel proud that she had such a conscientious little student with such a curious mind. Get ready with the gold stars and 'Excellent!' stamps as our Isaac would be aiming high!

Of course, Isaac might be a little chatty like his mum. That's our fault really.  We would let him chatter away as we just loved to hear his happy, sunny voice. At parents evening it would be the only issue he would have.  However, I'm sure a little knowing look from his teacher would curb that small distraction.

Isaac would love music. We always have music playing in our house and its influence would no doubt have an effect on him. He would be a guitar player like his dad; and he would be just as familiar with 90s Brit Pop as he was with 'Wheels on the Bus'!

At playtime, Isaac would play all the games of our childhood too: It, hopscotch, i-spy, dodge ball, and hide and seek. I would like to think he would be popular and have a group of friends always around him. He would also be the one laughing the loudest. He got that from his dad too: the silly, infectious laugh that would make everyone smile.

At home time, I would pick Isaac up and we would walk back together. He'd nag me for sweets, but sigh when I produced an apple from my bag. He would chatter incessantly about all his adventures that day. I would listen and smile, mesmerised by his happiness and excitement.  How lucky am I to have such a joyful and enthusiastic son?

Except Isaac won't be going to school this year, or in fact, ever.  I will never have that chance to walk him to the school gates. He won't get to wear that baggy jumper that's two sizes too big for him. That chair in his teacher's classroom won't be his.

Instead I'm scrolling through Facebook looking at photographs of children that are posing proudly in their new uniforms, ready for their first day in September. They have on their 'too big' jumpers and new Clarks shoes.  It makes me smile for a minute or two; then I remember that it will never be Isaac’s turn. I guess people will find it hard to believe that I could smile in the first place, but it's true. Even though my son isn't here, I still understand the excitement and pride every parent has about the first day of school. I've understood it for a long time, both as a teacher and a parent. Those daydreams of what ‘should be’ can't help but creep in to my mind. That particular milestone would have filled me with pride.

The thing that saddens me the most is the thought of the chair in the classroom that should have been Isaac's. He should be sitting in that chair. Instead it will belong to another wee boy or girl. In a way, it's a positive thing that it won't be empty. Hopefully, the child in that seat will be as enthusiastic and eager to learn as I know my Isaac would have been. They may even have been his friend in another lifetime.

I'm sure that makes him smile: the thought of some lucky little boy or girl making good use of that chair.

And me? I guess I still have my daydreams. These will have to see me through until the next milestone.

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

Acts of Kindness

Four years ago today Isaac entered this world in a state of sheer panic and mayhem; yet he left it in peace and surrounded by love. The difference is so very marked and completely describes the contrasting places he was at those times. The hospital he was born in got it so very very wrong, in many ways. However, St.Thomas' Neonatal Unit was a place of calm, expertise and kindness. There is no getting away from the fact that they couldn't save his life, but they certainly tried; and they did everything they could to look after us.

The one thing that always struck me about St.Thomas' was how kind the staff were. Nothing was too much trouble for them. The whole time Isaac was on life support they gave us all constant care and attention. They treated us like parents, despite us being unable to really care for him. They went out of their way to teach us how to put a nappy on him through the mass of wires and tubes. The staff literally performed a game of 'Risk' by moving him gently out of his crib without compromising his life support, just so we could hold him. And at the end, they showed compassion and kindness by making sure we had some alone time with Isaac. 'Kind' is very much the word that sums the staff up. Even after Isaac died, they spent months looking after us through counselling. Isaac's Neonatal consultant and nurses have even stayed in touch to this day. Nothing was too much trouble for them, and they were genuinely concerned for all our welfare.

In the early days after Isaac's passing, the kindness of others was something we relied on too. We relied on people to feed us; tell us what to do; and to keep us going. Basically they kept us alive. Nothing really mattered, and if it wasn't for the kindness of family and friends i may not have been here to write this. Sounds dramatic doesn't it? But it's true. I cared nothing for my life for a long time. In fact, the thought of dying to be with my son was almost preferable to living this 'existence' we found ourselves in. Grieving very much relies on the kindness of others. Without their support we would have been able to take the time to process what was happening.

Further down the line when we started to learn how to live again, nothing could prepare us for the awkward conversations we were increasingly having with people. Why aren't I 'over it'? Why can't you come to so and so's baby shower/christening/birthday party? Why couldn't you just be the Simone you once were? The answers were simple. Because my son shouldn't have died...We tried so long to have him...I don't know how to be 'that' Simone anymore... It became frustrating and difficult. A few friends gave up on us. Some just couldn't deal with how sad the situation was. However, there were people in our lives that just 'got it'. Their empathy and understanding made everything simpler. They listened, waited and gently placed their hands on our shoulders as we learnt to walk through a minefield of grief that tripped us up on regular occasions. It was a long and complicated journey, and still is at times, but these people showed the true meaning of compassion and kindness by not giving up on us.

Even four years on, those small acts of kindness mean so much to us. A card at Christmas or birthdays where Isaac's name is mentioned acknowledges that we are still his parents. Asking us how we are doing with Isaac related matters helps keep his name alive. Understanding that the lovely news of pregnancies and births are always going to be a little sensitive, but handling it kindly and quietly helps. We are always so happy to hear people's exciting news; it just takes us a moment to absorb. To any grieving parent these kind acts mean so much.

When thinking about ways to mark Isaac's birthday this year we wanted to celebrate the kindness of others.  So much kindness that been shown to us since his passing. So many people have raised awareness of the good work St.Thomas' and the Evelina Children's Hospital do by taking on challenges to raise money for them. Many people are now breaking the taboo and speaking about baby loss more openly. We still see the kindness of others as they remember our son each year.  We decided to celebrate all the good that people do by asking everyone to do one Act of Kindness in memory of Isaac. It seemed fitting seeing as his memory has inspired so many to do good in the past. And you know what? People have rallied around and really supported this event. So many have requested Acts of Kindness tokens and it makes me smile to think that people are going out in to the world and spreading a little bit of happiness.

And thats what Isaac's legacy is: doing good for others. In his memory so much has been done to help those who are ill, grieving, or in need of help. I can only imagine how proud and touched he would be at everyone's kindness, because that's how we feel. 

Happy birthday little man. You're still doing us proud, and helping to spread kindness just by being you. That in itself is the best birthday present anyone could ask for.

Love always and forever,

Mummy, Daddy and Isla.

XxX.


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

Thank you.

Mothers Day, again.

Happy Mothers Day to all you beautiful mothers out there! There are many of you I know who deserve the best of days. I hope you're all spoilt rotten.

To those of you who do not have their mothers with you, I hope you find a way to remember and honour their memory. May the day pass gently for you. 

I know how fortunate I am. I'm so very blessed to have my wonderful Isla! I am also so lucky to have an amazing mother, and a great mother in law. All in all, I should be feeling so very happy and satisfied today. However, I'm not really content and without sorrow on this occasion. I have no Isaac here.

It was a day I used to long for in the past when we were trying for a baby; a day I dreaded after Isaac; and now Isla is here, I have bittersweet feeling towards it. Every mother should be honoured on such a day (if not everyday!) but to those of us who have lost children what is there to look forward to? It's a day where we cry. It's a day where we find some way to torture ourselves with 'what ifs'. We find ways to blame ourselves, and even sometimes feel envy and resentment towards those who get the honour of such a day with all their children. For angel mothers it's a day where we go to our child's grave/garden/memory box and stare emptily at this heartbreaking memorial as we know they aren't really there. No card or flowers; no pampering; no child to hug. All in all, it is a day angel mothers could do without. It's bloody hard.

I know that along with celebrating the wonderful mother I have and being grateful for my loving daughter, I will feel grief today. I don't have one of the loves of my life here. Of course it is comforting to know Isaac has become a symbol of strength and love to many. Lots of amazing things have been done in his memory, and his legacy has helped many. I'm so proud of him. I also know that I was blessed to have him for a short while, and believe me when I say I've been told that by a number of people(!), but it really wasn't enough. I feel cheated, bitter and guilty a lot of the time, and I hate that I can't feel satisfied with what I have. But then why would I? Is Isaac any less important than Isla? Of course not. The only difference is I have her here to care for. I've had no choice but to intrust him to a higher power. But I'm still his mother. He is still the little boy I carried for 9 months; touched and held for 6 days. The little boy who I buried with a piece of my heart. And I will love him for eternity with what I have left, and with just as much love as I have for Isla, because I am his Mum. Always.

I think about my fellow angel Mums today and I just want them to remember they are still mothers to their angel babies and children who they will forever cherish. We may not get cards or gifts of thanks, but we don't really need them. Just being acknowledged as a Mum is all that's needed. So I want to acknowledge my fellow angel Mum's today. We loved our babies and they felt every fraction of that love whilst we had them. That's what makes us mothers. Love.  ❤️

God Only Knows

I was listening to the song 'God only knows' the other day. It was a Beach Boys' cover by BBC Music and it features an array of famous musicians. I started to hum along with the likes of Florence and the Machine, and Sam Smith.  I was enjoying the beautiful harmonies, and my humming soon changed to singing. Funny how I remembered the words to a song I haven't heard for ages. However, just as soon as that thought entered my head something happened. Out of nowhere I began to get choked up. I blinked as my eyes started to water and I couldn't force the rest of the lyrics out of my mouth. Instead I cried silently through the song; and at the end I looked down at my phone to the photo of Isaac saved as my screen background. I never cry. It's not something I often do. If I do it's almost always out of anger, and God knows I have a lot of that inside me! But it wasn't anger that set off the tears; it was this song. It was memories. It was Isaac. 

It was a particular part in the song that struck a cord: 

 

"If you should ever leave me

Though life would still go on believe me

The world could show nothing to me

So what good would living do me?

God only knows what I'd be without you"

These words had never felt more true than during those long dark days after Isaac died. Life does go on, but it wasn't a life I wanted to live. Honestly, I wished I had been taken with him. Isaac died in my arms at 6 days old. A big part of me died with him too: my faith, my happiness, my heart. I often felt that I might as well have left with him. 

I was convinced life was over. What exactly did the world offer me now? The child I had been though so much to have; the baby I felt move around inside me; and the life I was meant to lead as a mother, had been torn from me. I was left with nothing. No one could console me and tell me it would be okay, not even Darren. He was grieving in his own way, and for a while we became strangers. We literally existed together. Selfishly though, i felt a slight relief about not having to go through this loss alone. 

Darren threw himself in to fund raising in memory of Isaac. He decided to run the London Marathon. I was aghast as I was convinced I would loose him too. I had visions of him having a heart attack mid way and then I would be completely on my own. However, he desperately wanted to do it, so, I got my anxiety in to check and supported him. It was Darren's way to cope, and I couldn't take that from him. 

For me, grief was a very different experience. I did not cry. I didn't do 'weak'. I didn't want to feel. All I wanted was to be alone. I locked myself in the house. For the first few months, I went no where apart from the cemetery to see Isaac, my mum's so she could feed me, and to our bereavement counsellor. Then acute anxiety hit and I began to move further and further away from the person I was. I couldn't eat, swallow, or even breath sometimes. Life showed me no mercy. Every day was as painful as the last, and the cruelty of grief added one extra blow for me to deal with. 

Leaving the house eventually to do 'something' was my sister's idea. She literally put me in my coat and dragged me out. I hated every minute of it. There were too many people who knew nothing of my pain and I was walking the streets amongst them. I wanted to scream at everyone. Did they know what I was dealing with? Did they care? I despised them for not knowing. I was completely irrational. It was the same day I ran in to an old friend who ignored me. A great start to my first trip out! I don't remember feeling particularly hurt; I was hurting enough as it was. Instead their actions taught me a lesson about how people dealt with child loss- badly! It also made me realise I was always going to be that mother who lost a child. Who wants to be that person? Who wants to know that person? I can assure you, no one does! Bad enough to loose your child, but then to loose your friends? No, that's not okay.  I felt like an untouchable. Without Isaac, I was going to always be a grieving mum. I didn't want to continue living this life.

It wasn't just 'outside' that was tough. Locked up in my own house was impossible too. Throughout the day and night I would touch my stomach praying that the past few months were just a mistake. I prayed hard that he was still with me. But there were no kicks. No longer was the baby I'd carried to full term safe and sound in my stomach. The last time I felt Isaac move properly was before he we born. Whist in NICU he didn't move at all: too many wires and sedation. If Isaac did move it was from convulsions he was having as a result of the brain damage. The only time I ever felt him move was inside me. He was healthy and safe there. He was alive and well, but now he would never move again. I missed the way he would wriggle around. I desperately wanted to feel him and his powerful kicks. I promised I wouldn't ever moan about them again! Of course, nothing changed. I left for hospital pregnant and came home a week later with no baby. I felt I should be with Isaac where I could see and feel him. A mother should be with their child. What was I going to do without him? 

The song literally mirrored how I was feeling, and that didn't change for a long long time.  Even when i felt strong enough to go out, get back to work and see people, I still felt empty and sad.  Life went on and yet it meant nothing to me. I needed something to give meaning to my world. I needed a reason, apart from friends and family, to keep going. 

I found this purpose through a group of women who had experienced loss and understood what it actually meant. Unless you were there, no one will ever understand what it's like for your child to die in your arms. We all had our own individual experiences of child loss, but these ladies, sadly, knew to some degree how I felt. I would online chat with these angel mothers late at night. I tearfully listened to their experiences. I reached out to them when I felt particularly wretched. They were so important to me, and many of them still are. 

These angel mothers inspired me to start up a support group. They encouraged me to write these blogs. Their empathy and lack of judgement allowed me to share emotions I sometimes felt ashamed of. In turn, I also supported, listened and encouraged. I learnt I wasn't alone. I could cope. I could live again. I will never forget, be as optimistic, or as innocent as I was since loosing Isaac, but I can live. I have found some purpose in this world that had let me down so badly.  

My friends and family gave me space to learn how to be this new person. Some friendships lay claim to my grief, but most were salvaged. I could still be their daughter, sister, friend and colleague, but I had changed. Some things are not for the better I admit. I can get angry easily and I know I need to curb that. My anxiety leads to me constantly questioning myself and when my mindful techniques don't work I rely on people to calm me down. However, on the flip side, I'm more honest, more open, and I hope, more empathetic. It's been a very tough ongoing journey for everyone, but I am so very grateful that my friends and family continue to hold on.

Despite starting our grief in different places, Darren and I began to find strength in one another and learn to live with this terrible tragedy. I joined Darren with his fundraising. I started to do charity work too. It brought us together. And we had another child, Isla. She is so very amazing and we love her more than anyone can imagine. She will never replace Isaac but she had helped us to smile and look forward to another day. 

There are so many people that helped me appreciate the world again: my friends, my family, and of course, my loss group. Each helped put me back together. I know they watched me change and felt powerless at times, but these people stood patiently by my side. I have slowly came back, not quite the same person as I was, but as someone who can at least see a reason to live. 

God only knows how I've managed to get here. I didn't want to live without Isaac. I still don't want to be without him, but I have learnt that there is still a place for me in this world. It may not be the place I want to be at times, or even envisaged myself in, but it is a life that I am slowly starting to accept bit by bit, as life does still go on. 

Simone. XxX. 

If you would like to donate in memory of Isaac to the Evelina Children's Hospital please visit:

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=runningforisaac&utm_source=SwitchToDesktop&utm_medium=web&utm_content=Footer&utm_campaign=VMGMobile&stop_mobi=yes

Birthday Gift

Whenever we talk about you, Isaac, it ultimately ends in how inspirational you are. True, I am biased, but I have never met or known of any little boy who has inspired so many to be kind, generous and brave.

These past three years have been a struggle for us. We long to have you here and to share our world with you. Instead you are growing up in a place called 'somewhere'. 

We should be able to sing happy birthday to you in person. We would want to see your smiling face as you opened your gifts. As you blew out your birthday candles we would wish for you to be happy, kind and brave- qualities anyone would wish for their children. But in fact you are those things already: happy, kind and brave. We feel very fortunate to have had you, and as time goes by we see these aspects of your character daily. You don't need to be here for us to know you have those worthy qualities. 

I imagine you are happy. You are surrounded up there by people we have loved but have left us too. Your grandfather, your great uncle, your great grandmothers, and mummy's best friend. I know you are well cared for by them. You are also away from all the harm and cruelty this world sees. No one ever wants their child to bear witness to the wars and crimes on this earth, and you, thank God, will never know them. And I believe you must be so happy to see your baby sister growing each day. She will always know who you are my darling boy, and she will grow up loving you as if you were here. 

A kind person is someone who cares about others and their welfare. You may not be here to show this in person, but you have certainly inspired others to act kindly in your memory. £28,000 has been raised in your memory for the Evelina Children's Hospital, and we have seen people take on the most amazing challenges to raise this. Also, the kindness friends, family and the public have shown by donating is truly humbling. All in your memory sweetheart. This kindness is shown because of you. 

I have met no one quite as brave as you. You fought for life when others gave up on you. You gave us a little time to be your parents even though you were suffering and in pain. You made sure your mummy and daddy had memories of their first born to keep them warm through the darkest of times. How much braver could anyone be?

We couldn't be any prouder of you than we are; you're just not here to say it to. However, you are the happiest, most kind and bravest little boy there is.  I whisper it every night in to the star filled sky hoping you can at least feel our love for you. 

So, what could we possibly give to our happy, kind and brave boy? I think your true birthday gift is something you have given to us. You have shown us what true courage is. Whenever I have felt defeated and down I just think of you, and I remember that my fight could never be as hard as the one you had to endure. I have learnt to be less judgmental and more tolerant. You have changed the way I look at people. My empathy and my need to care is what drives me to help those who suffer loss too. And you have taught me to embrace those little moments of happiness we experience everyday, because we know they can vanish at any time. 

For your birthday we give to you a promise.  We will keep honouring you by doing our best to be happy, kind and brave- just like you.

Happy 3rd birthday darling boy. 
Love always and forever,
Mummy. 
XxX. 

If you would like to donate in memory of Isaac to the Evelina Children's Hospital please click on the link below:
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=runningforisaac&utm_source=SwitchToDesktop&utm_medium=web&utm_content=Footer&utm_campaign=VMGMobile&stop_mobi=yes

The truth about grief.

Some bereaved parents describe the pain of losing a child like an ache that never goes away. A constant and nagging type of pain that inflicts your soul. There is no drug strong enough to put that ache a bay. Over time you learn to dull it. You cope as best as you can but the ache is always there in the background.

Other parents describe it like a tornado. It's brutality and strength suddenly hits you and it sweeps you up, wreaks havoc for a while before it spins you back to reality. That crash in itself is hard to recover from, because how on earth did this happen to you?

What have I done these past two years?  Well, I've had several visits from the tornado, definitely a few quite recently. The ache is always there, lingering and tormenting me. There is not one day I don't think about Isaac, and as long as I do not have my son there is no rest from the ache or occasional tornado.

When I lost Isaac two years ago today, I was clearly in the midst of the tornado. I remember begging Darren, the consultant, the nurses, God, and even Isaac, not to let this happen. To be that powerless is incredibly rare but there was nothing I could do to stop Isaac from dying. Up until that moment there wasn't a problem that couldn't be solved somehow. But then I had never encountered anything so tragic and cruel in my life. When I remember those moments it's like looking at a deranged creature who had no control. Sobbing, moaning, raw animalistic howls. This woman was inconsolable, messy, terrified. This woman was me.

Two years on and although I have never gone back to that place since, I've re-lived it as an observer several times. It doesn't mean I haven't been close. I realised very soon after Isaac dying that the world couldn't be controlled. There were other things that were out of my power and control.

People were one of those things.  Most people have no idea what to do or say to me about Isaac. I realised that loss is terrible to deal with full stop, but when it's a child that has died it seems to be even harder for people to cope with. I understand that and learnt to let it go. It wasn't easy though, and I have coped with being ignored, Isaac not being acknowledged, and even some incredibly inappropriate, verging on cruel, comments. I am relieved to say that these people were not the majority. I have learnt that some friendships are a casualty of loss, and although incredibly sad, you need to step away from anything that causes you stress and anxiety. You have to protect yourself otherwise the sheer stress will only add an extra load to the grief you haul around each day.

Some friendships have grown, been renewed or are newly founded. I have learnt who I can rely on and I'm so grateful to the people who have held me up during some of the worst times in my life. New friendships have also developed as a result of losing Isaac. I have a strong network of friends who have experienced the loss of a child. As much as I so very much wish we didn't know one another, equally I couldn't have coped without them. I feel blessed to have these courageous angel mummies in my life and wish them nothing but peace. However, as every angel mummy knows, there is no peace.

Peace is a strange word. It evokes images of harmony and safety. In some ways I feel an odd sense of peace that Isaac is being looked after 'up there' by friends and family who have sadly passed away. Also, he is no longer suffering, and I know he was suffering a lot. That brings about some peace. I would never want my son to be on his own or in pain. However, those moments are fleeting as the pain and grief will never go away. We lost darling Isaac as a result of negligence. I nearly died on the operating table too. There is no peace when you lose your baby. Add to that the extensive inquiries and legal case, and I know we won't feel even a sense of peace until we have justice for Isaac. What happened to us has provoked nothing but anger and anxiety in me. I hate what they have done. I am disgusted that they have got away with it so far. How 2 consultants, 2 doctors and 2 midwives could have all got it so wrong seems unbelievable. My anger tells me that they won’t evade us forever. We will have justice.

When that tornado of grief strikes you realise that peace is impossible. As it hits you and sweeps you up, it manifests itself in many ways. My anxiety was another way I have dealt with grief and it has become one of the hardest things to contend with. This is yet another thing that I can't control. I have recently been diagnosed with PTSS. There is not one peaceful and easy day now. If I'm not reliving what happened I'm suffering from physical symptoms associated with anxiety and convincing myself I'm going to die. I know this is common with bereaved parents. The lack of control we had when our child died reinvents itself to anxiety, or for some depression. Let's be clear, anxiety is not 'worry', it is so much more than that. It creates physical symptoms that are hard to control- not sleeping, not leaving the house, pains in your chest, hyperventilation... the list of these frightening symptoms goes on. When Isaac died I had a period of time where I couldn't swallow food. I was terrified I would choke. Through therapy I have almost conquered that frightening symptom. I thought things were getting better. Nearly two years on the anxiety has started again. If anything, the symptoms have got worse. I can question why as many times as I like. The simple and least complicated answer is that we've been through 'too much'. That's not self-pity that is the truth. It's taken a long time for me to accept that. I can't control the anxiety and I need extra help in controlling it.  But I'm battling against it every day. I will learn to cope with it.

I'm learning to cope with guilt too. That lingering kind that sits heavily on your mind every day. No amount of people telling me it wasn't my fault will alter this. Yes, the hospital Isaac was born in were tragically negligent, but my body started the chain of events. The aching pain of Isaac not being in my arms now will always be tinged with guilt.

I feel that aching pain more since we had Isla. She is the most beautiful and loving little girl. When I hold Isla I know I'm completely in love with her. There are moments though that I feel guilty for feeling so happy. Why is she here and Isaac isn't?  Then I feel guilt for even considering that!  She was never a replacement for Isaac. We desperately wanted to be parents to an earthly child. We didn't think it would ever be possible again so when we became pregnant it was one of the most well-guarded secrets ever! We didn't want to share our news and hid it for as long as we could. I was terrified something would go wrong again, but thank God all was okay. It was a pregnancy full of anxiety and trepidation. We didn't even buy anything for Isla until the last few weeks!  I had tried to go through the mass of clothes we bought for Isaac to see if there was anything we could use. That was one of the hardest things I have ever done and I gave up quickly. It felt so wrong. Guilt again. The whole experience of being pregnant was ruined by fear and guilt. However, holding Isla in my arms minutes after she was born was the most amazing experience. It was something I was robbed of with Isaac. More guilt. Bringing her home, feeding her, putting her to bed... All these little things I appreciate so very much as I never got to do them with Isaac, but they all tinged with sadness at times because of that reason too. I still ache to hold Isaac and be a mother to him. Will these feelings ever go?  Probably not. Will I ever feel pure, undiluted joy? I doubt it. I'm learning to live this new life and the guilt isn't so extreme, but it is still there to some degree.

Sorrow and loss are challenging emotions. They can engulf your life if you let them. I am fighting so many battles each day that sometimes they do. Two years on from losing Isaac I have learnt a few things. It is possible to smile and laugh again. I feel at peace with my friendships and relationships, despite having lost a few on this journey.  I can love someone as equally as I do Isaac. I can. Being able to do anything is progress from where I was two years ago. My body still aches for Isaac and there are some very bad times when I am swept away by anxiety, anger and injustice. I know that I still have a lot to deal with and I am still grieving. I don't know if these emotions will continue forever or subside somewhat over time. Either way, I know that whatever happens, with help, I can cope; I can keep moving; I can live my life. And always with Isaac by my side.

 XxX.

Two years old today

 

"When I grow up
I will be strong enough to carry all
the heavy things you have to haul
around with you when you're a grown-up!"

Happy birthday Isaac. You're a whole 2 years old today! You are a toddler now! Sadly though I can't see that. Instead I have to accept that you're growing up in a place of peace and happiness. I imagine you're toddling around, discovering new things: the scent from the blooming flowers on a summer’s day, the feel of green grass beneath your little feet, your first naughty taste of delicious creamy ice cream and birthday cake. I wish I could see all those tiny milestones. They are things many would take for granted, but to me they would be truly special to watch. Instead I know that you'll be all set to celebrate your birthday up above with all your angel pals, watching out for our balloons floating up towards you.

I wondered what you would be when you grew up. A doctor, lawyer, teacher like me... Then when I met you those ideas changed. All I wanted you to be was happy and healthy. Those high expectations vanished in an instance. I would happily let you grow up and be whatever you wanted to be.  All that mattered is that you would be here, alive and well.  Not a lot to ask really is it?

But it was too much to ask for.  I am not allowed to watch my son turn in to a man.  You are growing up in a place where I can’t see you in. All I can do imagine the life you have up there.  The song from Matilda ‘When I grow up’ echoes in my head as I write this.  I hope you are having ‘treats every day’; eating sweets and climbing trees. I already know you’re a brave boy so fighting the creatures beneath your bed in heaven will be a synch! 

The one thing I can be sure of is that you will never have the burden of carrying all the ‘heavy things you have to haul around with you when you're a grown-up’.  No worries or fears will ever weigh heavy on your mind.  You won’t have to make difficult decisions or deal with any afflictions.  There is no loss where you are.  No loss.  Instead there is peace, harmony and love.  What more could a mother want her son to grow up in? 

Happy birthday my darling Isaac.  May your future continue to be filled with sweets and treats all wrapped up in the love we have for you. 

Mummy.  XxX


We continue to raise money in Isaac's memory for the Evelina Children's Hospital. If you would like to make a donation please click on the link below which will take you to our 2014-2015 charity page that goes towards our overall total page. Thank you.
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=runningforisaac&pageUrl=10
 

 

 

 

The Six Days of Isaac. Day 6 - Now

My darling son,

Today you have been gone for one whole year.  It’s almost incomprehensible to me.  I still wonder if I’ll just wake up to find it never really happened.  You are the first thing I think of in the morning, and I look up from my pillow to see your photo staring back at me.  I know then that this did really happen.

I also know this happened because you’re not here but all the baby stuff we bought you is.  We wanted to sell our one bedroom flat before you were born, but this didn’t happen.  I remember being so annoyed that I had no nursery for you.  I had no idea how we would fit in all the things we needed for a newborn baby.  The flat was crammed from floor to ceiling with everything you could have needed or wanted for the first year of your life.  Coming back to the flat after losing you was so incredibly hard.  I was so angry. Baby paraphernalia was everywhere.  Your changing table with clothes freshly laundered was, and still is in our bedroom.  Stuffed toys, nappies, bottles all stacked up in a cupboard in our living room.  I still haven’t moved anything or opened those cupboards.  It’s your stuff and I can’t get rid of it.  If I’m honest it’s more to do with not being able to still acknowledge what we should have had together. In the first few days I couldn’t even bear to look at the scan photos I had stuck up on our fridge.  I wasn’t angry at you, I was angry at God and life.  I remember ripping them down from the fridge and placing them in a draw.  I couldn’t face seeing anything that was a reminder of what was meant to be.  A few days later reason found me and those scan images were back safely on the fridge.  They are still there now. 

I also know you aren’t here as we had a funeral.  It was a blur really.  I had nothing to say to anyone and I have hardly any recollection of who was even there.  There was a huge turnout, and I do remember being touched that so many people cared.  I remember a few snippets from the day.  Daddy holding you as you was taken in to the church.  The anger I felt as I stared at the altar where you lay.  The song ‘You’ve got a friend’ being played.  Crying.  Lots of crying from people around us.  So many people loved you, despite never having met you.  You will forever be remembered by them.

The weeks after were a nightmare.  Trying to do the simplest thing was a chore, and having to talk to anyone seemed more effort than it was worth.  Those friends and family who know me well know I’m not a huge talker at the best of times.  I literally had nothing to say to anyone.  I couldn’t imagine who would want to hear what I was really thinking anyway.  I had been punished for being a bad person.  I was guilty of killing you.  I wished I wasn’t here.  It was a very dark place to be, and even your Daddy couldn’t pull me free from it.  I wanted to be with you.  I couldn’t understand how I survived but you didn’t.  I was the one who carried you so therefore it was my fault.  I should be punished.  I should be feeling this way.  Your poor Daddy was blameless, and yet he was suffering because of me.  It took me a long time to realise that this wasn’t just my fault; and that there was another source to blame.  The hospital you were born at didn’t take what happened seriously.  If I had gone elsewhere you would have been delivered asap and would be here right now.  We know this from enquiries.  They are still going on but we will get justice for you my son.  We will make sure that this never happens to any other family.  The anger I feel is now directed at them.  It doesn’t go away, and the suffering continues as a result, but we can’t walk away from it.  I know you wouldn’t want us to.  I do have some guilt that I will probably carry through the rest of my life.  It was still ultimately my responsibility to keep you safe inside me and I didn’t.  I’m so sorry my darling.  I will always be sorry. 

We’re reminded of loosing you in simple ways too.  Just walking down the street and seeing a pregnant woman, or a mother with a buggy stings.  That should have been me. I have never resented anyone having a child, even then.  What I resent is being the mother who spends her maternity leave without her son.  I am the mother every mother is glad not to be.  I am always going to be the mother with the dead son.  It’s not fair. 

Our lives have changed in so many ways, and so have the people in it.  People you know change before your very eyes.  No one knows what to say to you.  No one knows what to do.  It’s not always their fault, they just will never be able to understand.  Those relationships you had come to rely on change.  Some friendships have become a casualty of our loss.  It’s so very sad and regretful. 

However, there are others who stand firm and are there for you no matter what.  There are also those who come in to your life who you least expected: people there to understand, to help, to listen and not judge. Certain friends and family become your life boat.  They save you from sinking further in to the abyss and hold you up when you feel you are drowning.  Those people I can never thank enough, and that they continue to hold our hands is a blessing. 

I don’t think that I can find anything ‘good’ from loosing you, although it seems some want to believe that there is light within the eyes of tragedy.  I have had many odd things said to me such as ‘At least you had a few days with him’ and ‘Look at the strong person you’ve become’; even ‘you are such an inspiration!’  I can honestly say your Mummy doesn’t agree with any of those statements.  A few days when we should have had a lifetime together is not enough!  I am neither strong nor inspirational.  I have to get up in the morning.  I have to attempt to go to work, see people, and go to counselling, do the food shopping... what would happen if I didn’t?  Life goes on around us and we had no choice but to enter that world again.  Daddy and I also have more difficult challenges such as fighting the hospital because if we don’t then what might happen to other families?  Is that a good thing?  Yes, I guess it is for those who may be saved, but more to the point, when would we ever find some sense of peace if we didn’t?  You deserve peace.  Daddy and I deserve peace.  We may not have it yet but we will one day. 

Daddy raises a lot of money in your memory for the wonderful team at the St.Thomas’ who cared for you.  Yes, that is a good thing, but we would still rather have you.  If anyone is an inspirational person it is your Daddy.  He’s run a marathon, raised over £20,000 in your memory, and devotes much of his time to helping those who have lost children or have a child in a Neonatal unit.  He sends messages to them via ‘Running for Isaac’ and inspired others to get involved too.  Your Daddy is incredibly strong, but I know he would give up all of this just to spend five more minutes with you.  So, no good has come from loosing you really.  Maybe there have been a few lessons in not giving up, and helping others. Blessings in the way of the wonderful support and friendships we value.  We see the generosity and goodness of spirit in people that we may not have recognised before.  It’s such a shame that it took loosing you to see these things clearly.

A year ago our lives changed forever.  It had been a long and very hard journey to accept what has happened to you, and I’m not even sure I still completely do.  I do know that this journey is not at an end.  I know there is more we will have to contend with.  I also know that the pain of losing you will never go away.  I can smile though now, especially when I think of you Isaac.  I have learnt to appreciate even fleeting moments of happiness and laugh at silly jokes.  I have learnt that our lives have not ended, even though it still feels that way sometimes.  I’ve learnt these things because otherwise I would be letting you down.  I have to somehow make you smile from up above and feel some pride in your Mummy.  If I didn’t I wouldn’t be a very good Mummy, would I?  A year is a long time to have lived without you.  Some things have changed and moved on, but you are still forefront in my mind in everything I do.  That’s because I will always be your Mummy, I just need to work a little harder at it than most for you to see that from where you are.  I will always be your Mummy my darling son. 

Until we meet again.

Love always,

Mummy. XxX



Isaac passed away at 6.56pm on 1st August 2012. Today we are asking people to light a candle in his memory, and also for those who have grown their wings too early.

If you would like to make a donation in memory of Isaac, the web address is: http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=runningforisaac&pageUrl=8

All donations go to the Neonatal Unit which is part of the Evelina Children’s’ Hospital at St.Thomas’.

Thank you all for reading, your continued support and understanding.  I hope this series of blogs has helped raise awareness of baby and child loss, as well as being a fitting tribute to our beautiful son Isaac. 

Heavenly kisses to all our angels,

Simone Mahmud-Smith

 

 

The Six Days of Isaac. Day 5 - Goodbye

My dearest Isaac,

I’ve always been terrible at saying goodbyes, but to say goodbye to you was the hardest thing I have ever had to do.  Everyone says that losing a child is the most tragic thing anyone will ever have to bear.  I can absolutely confirm that to be true.  I have never felt such a sense of fear, panic and utter heartbreak.  Nothing on this earth will ever seem so difficult or hard to cope with again.  I just wasn’t ready.  I loved you too much.  I couldn’t imagine life without you.  My life has changed to something I no longer understand and it started with saying good bye on Wednesday 1^st August 2012.

You had a very difficult night on Tuesday.  We knew that you didn’t have long left with us, but we never imagined it would be so soon.  You were tired, so very tired.  We couldn’t let you suffer anymore and it was clear that you were.  Yet, we couldn’t let you go and Wednesday morning saw us back in the parents’ room trying to convince Dr Groves to find a way to keep you going.  Yet again, the poor man was put in a no win situation.  He said he couldn’t let you suffer, and you were starting to.  Ultimately it was his decision when to take your life support away, but he needed us to understand that it would be today.  He spoke in such a way that we couldn’t ignore the situation any longer.  How could we let you suffer anymore my darling boy?  You were so tiny that the pain you were in must have been unimaginable.  We didn’t want that, we couldn’t cope knowing you were hurting.  We resigned ourselves to what we were being told and a plan was put in to place that would allow us to spend as much time with you as possible before you were to leave us that afternoon.

Our family had time with you Wednesday morning.  The staff we’re amazing, and again gave us privacy by putting a screen up.  Sister Sarah was looking after you that day, and her strength gave us the strength to keep going.  The chaplain came to see you too and read Noah’s Ark to you.  You would be going on a journey soon, like Noah, and we hoped that you would understand it wasn’t the end.  We would follow you on your journey one day.  After everyone else had said goodbye, you, Daddy and I spent the afternoon together.  I spent most of that time kissing you, holding your hand, stoking every part of your body I could.  I wanted to memorise how soft your skin felt.  I had to remember, as I knew I wouldn’t be able to do this ever again.  I told stories about all our friends and family, shared my secrets with you, and whispered I love you so many times I lost count.  Daddy did the same.  He soaked up every second and imprinted all those memories to mind.  He looked so lost and broken.  I wanted to tell your Daddy it would be okay.  You were ready. You needed to rest.  I said these things with as much courage as I could muster.  Although I knew they were true, I had to force those words out of my mouth and say them with some sense of conviction.  I knew that you had many people who we love to look after you in heaven.  You Granddad Colin would be with you, your Great Granny Winnie would be making you laugh in no time, and my good friend Rachel would look after you and teach you all the thing I would have liked to.  Yes, I knew you would be looked after, but how could I reassure Daddy that we would be okay?  I knew we wouldn’t be, but I couldn’t bear seeing him look so destroyed.  I just said it because I had to.

Then it was Daddy’s turn to comfort me and to give me the strength to say goodbye.  We were taken to a side room with you.  30 minutes to say a final goodbye to you.  No, I couldn’t do it.  I panicked and begged Daddy to just let us grab you and run.  Run away far from here and not look back.  Take you away so this didn’t need to happen.  I was desperate.  Daddy somehow showed such courage and strength, and explained the reality of what would happen to you if we did just leave with you.  You would be in pain and suffer.  I couldn’t hurt you my darling boy and so calmed down.  Only you and your Daddy could have given me the strength to go on.

What happened next I can’t write about, Isaac.  You know already anyway. You know we had some special, private time together.   I think about it every day, sometimes with anger that it had to happen, sometimes with sadness, but always with love.

Then you were gone. 

We sat in that room for a long time.  I could have sat there forever.

Over the last year, I’ve realised it wasn’t really goodbye.  I see you every day in simple things.  Your windmill spinning in your garden.  A butterfly.  A rainbow.  There are a lot of little things that I think of as being signs that you are still with us.  You will always be with us, and we with you.  One day the three of us will be together again.  This isn’t really goodbye.

Until then.

Love always,
Mummy.

 

 

The Six Days of Isaac - Day 4. St.Thomas’Hospital

Dearest Isaac,

You were born on the opening day of the 2012 London Olympics.  It was a day the whole country was looking forward to, and there were events taking place to commemorate the Olympics up and down the country.  As you can imagine, the excitement in London had hit fever pitch, and even the Houses of Parliament opposite my room at St.Thomas’ was getting involved in the action!  Before I could get in to the Neonatal unit I was taken to a side room in the Post Natal ward for observations and medication.  Because of the circumstances they had given me a private room so Darren could stay with me.  The room put most hotels to shame, and the view I had was of the Houses of Parliament was stunning.  Every hour, on the hour, Big Ben sounded his chimes and we were treated to a special Olympic history story and light show, which was projected on to the facade of Parliament.  Your strength and determination during your time at St.Thomas’ was inspirational, and just as great as the job our Olympians were doing.  Although I was only ever in my room for my obs and medication, the light show would always seem to be on during those visits back.  I remember thinking how I wish I could show you the pretty lights.  You may not have understood what it was about, but it was a moment in history that you were a part of. 

Once I had had my checks done it was 1am.  I went straight to NICU to be with you, but not before I was pushed down in to a wheelchair and told to come back soon to get some rest.  There was no rest that week. Our only thought was to be with you, and NICU became my home too for the next four days.

The process to just get in to the Neonatal Unit was immense.  Scrubbing up, putting on hand gel, hanging up coats and bags, putting away any food and drink, lockers...  It seemed to take forever just to get past this check point, but it was reassuring to know the hospital took all these precautions for their little patients.  Once through we went straight to NICU.  I can’t lie Isaac, when I first saw you in your little cot I was shocked.  You were hooked up to what seemed like hundreds of machines.  There were wires everyway and lots of beeping.  And you had your ‘spacesuit’ on.  I could barely see you.  I literally lost my breath, and felt a real sense of panic and loss.  Daddy led me to the edge of your cot, and I felt the panic increase.  I was scared to move any closer, but Daddy took my hand and explained that there was a chance you could still hear us and I needed to talk to you.  If there was anyone’s voice you would recognise, it would be mine.  I was scared of your sweetie.  I was scared to touch you, to speak to you, to even cry.  I felt that I had no right to be there.  Look what I had done!  The guilt was overwhelming and despite having being told time are time that I wasn’t to blame, that I had done nothing to cause this, it didn’t and still doesn’t take away the fact that it was my body that let you down.  Your Daddy wasn’t having any of it though, and made it clear that this wasn’t a time for self pity – I needed to be your mum.  He was right, and hearing those words snapped me out of the anxiety and fear.  I held your hand and whispered that I was here.

And so began our new relationship.  I was not the Mummy I ever expected to be, but I was a Mummy.  If love was enough to save you, you would still be here now. I was unprepared for the feelings of protectiveness and obsessive love I felt for you.  I refused to leave your side and had to be reminded on many occasions to go back to the postnatal room for my meds and obs.  The midwives were fantastic though.  There were no lectures once they learnt the seriousness of your condition and they would wait to see me when I felt it was okay to leave you for a few minutes.

Our time together that first day was so very special. I could hold your hand and feel you squeeze it.  I tickled your feet and watched them wriggle around.  The doctors would tell us it was just a reflex action, but I believed it was more than that. I would stroke your chest and tell you you were ‘a good boy’ when you would fit from time to time. Whether it was a coincidence or not, you always stopped once I did that and as far as I was concerned you knew your Mummy and Daddy were there.  Your Auntie Janeen bought you some books that day, and we read each one to you from cover to cover.  Your favourite story was ‘Guess how much I love you?’.  We kept all your books at the bottom of the cot.  In also went the little toy rabbit we had bought you and the receiving blanket that I would have wrapped you in the first few moments after you were born.  It couldn’t be used in the way it was intended to be used, but you could still have it in your cot now.

That Sunday I met your nurse, Debbie.  She was in charge of looking after you those first few days I was there.  We got to know one another quite well over those two days. I would sit on one side of your cot, Daddy on the other, with Debbie at the helm!  Nothing was too difficult for this wonderful nurse, and she did everything in her power to make sure we were all comfortable in this most uncomfortable of environments.  She would talk to us about you, how beautiful you were, how well behaved you were being!  You never caused her any problems!  Debbie taught us to read the machines and reassured us that you weren’t in any pain.  We chatted about the most mundane stuff I’m sure, but Debbie never let on that she was bored!  It was the opposite, she showed that she cared by talking to us about you, checking on how we were doing, letting us do little things for you like putting Vaseline on your dry lips and washing you down with cotton wool.  I remember thinking I had been taught to do this in NCT classes, but it didn’t seem so complicated then.   There were no wires to hold up or negotiate in those lessons!  We were given the opportunity to hold you.  It took literally two nurses about 20 minutes to get you out of the cot, making sure the wires were still in place before placing you on my lap on top of a pillow!  It was so worth it just to be closer to you though.  My heart broke that I couldn’t cuddle my baby like everyone else.  We also met with one of your doctor that first day – Dr Tan.  We were taking in to the ‘parents’ room’.  We later learnt it was the one place you really didn’t want to have to go in to, as ultimately it meant bad news.  We were told again that you were very poorly but they didn’t know the extent of the brain damage you had.  They wouldn’t know until you had the brain cooling suit removed on Monday evening and they could perform a MIR scan on you on Tuesday.  She told us to prepare ourselves for bad news.  At the time, I remember thinking how much I despised this woman who seemed to have no faith in you!  You had survived after all you had gone through at birth, and there was no reason to ‘prepare’ myself for anything!  Looking back, Dr Tan was so very gentle and kind. She handled the whole situation as well as anyone could.  What a terrible part of their job that must be! My anger was just pure denial.  But I hadn’t even spent 24 hours with you; you were going nowhere!

Sunday night I met Maria.  She was your night nurse.  A sweeter woman you would be hard fixed to meet.  I left you for about 10 minutes to have my meds, and when I had got back she had ‘tidied up’ and ‘decorated’ your cot with all the little things we had placed around you.  Your receiving blanket was placed on top of you, and you arm was draped around your cuddly rabbit.  It was such a cute picture!  Maria said it was important for you to have to all your things close by.  She talked to you a lot, and kept telling you to be a strong little boy for your Mummy and Daddy.  You clearly listened to her and had a good night.  Your blood pressure was strong.  Your fitting was minimal, and you seemed to be in no pain. Whilst you slept, Maria showed me how to change your nappy, not that it needed changing, you weren’t allowed any milk so it was completely dry.  However, you have no idea how much I cherish that memory.  I thought it was something I would hate doing a few months before you were born, but it made me feel like a real mummy.  I could ‘do’ something for you apart from just talking to you and holding your hand.  Daddy was too nervous so he left me to do it.  Your Daddy did eventually change your nappy the next night, and Maria and I joked that he was a typical man, all fingers and thumbs!

Monday was a special day.  We decided to have you christened.  It was something we didn’t dream of doing so soon, but as much as we didn’t want to admit it, we knew it had to be done sooner rather than later.  Your two grandmothers and your great aunt were there, as was your Uncle Lee, Uncle Adrian and Auntie Janeen, all three of whom had agreed to be Godparents.  The staff gave us some privacy from the rest of the NICU room and placed a screen around us.  The Chaplin was very kind and it was a quiet ceremony, but one that was full of inspirational and healing words.  She hadn’t given up on you, and asked that God look after you and keep you safe as holy water was used to christen you Isaac Colin Smith. ‘Colin’ was in memory of your beloved grandfather who couldn’t be with you then, but who is with you now.  It was peaceful and full of love.  Every person present loved you so very much, and none of them were willing to let you go yet.  Debbie was not just a nurse that day, but also the official photographer!  She even used the office printer (don’t tell anyone!) to print off a few copies of the photos!  That day I had such mixed emotions.  I was angry with God for putting you through this, but at the same time I was begging him to let you live.  I was trying to make deals with him.  I would do anything to save you, even give up my life.  A few days later, I realised God wasn’t going to play ball.

Monday afternoon greeted us with more challenges.  We were summoned to the parents’ room, and with heavy hearts we entered it for the second time.  This time we met the doctor who would be in charge of your care for the next three days, Dr Alan Groves.  The first thing that struck me was that this man had a real sense of empathy.  He was truly devastated that this cruel thing had happen to you Isaac, to us.  He spoke gently and carefully as he explained in more detail that although you were strong, and your heart and organs were healthy, the brain damage means that they may not be able to function so well as the days went on.  Your brain cooling suit was due to be removed soon, and we should prepare ourselves for the fact that your health may deteriorate.  He handled our endless questions with compassion and he confirmed what Dr Tan thought, that there may be very little they could do for you.  We would have to wait until Tuesday for anything to be confirmed though.

As the day turned to evening, we held our breath as they removed the brain cooling suit.  If things were going to get worse, this is when it was expected.  We spent the night in vigil by your cot.  I tried to make more deals with God.  I made Daddy tell me the actual story of your birth as I couldn’t remember much of it.  For the first time, I was able to see your hair properly.  You no longer had your ‘space cap’ on and I marvelled at your blond curls.  How was it possible that we had created such a beautiful boy?  I felt a sudden sense of panic again that no one apart from us would see how beautiful you were.  It was probably the first time that I allowed myself to imagine you not being here.  Refusing to cry in front of you, I went back to my room to have my obs done.  I didn’t openly cry until I was able to stare at the lit up view of Big Ben.  How cruel that you may never see this view yourself!  How cruel it was that you may never hear those chimes that once just reminded me of the time, but now had a sinister soul to them.  The Olympic light show appeared on the Houses of Parliament again, and as I watched the images of the athletes, I know you were just as, if not more, determined to fight than they were.   Composed, and back on ‘Mummy form’, I rejoined you and Daddy.  We read to you some more, held your hand, watched the machines and prayed within an inch of our life that you would still have yours by Tuesday morning.

And you did.  You were so very strong my darling boy.  Despite the fits becoming a bit worse, your heart carried on strongly and we felt a sense of real hope for the first time.  Daddy and I were so very proud of you.  You were so very strong and determined to spend time with us.  I remember whispering to you that you were going to prove everyone wrong in the MRI today.  You would show them!  Daddy and I watched and willed you to be strong as they took you down for the scan.  Daddy and I then went downstairs to the hospital cafe and planned what our next steps would be.  I was going to give up work and become your full time career.  We would all move to South London to be close to the hospital as we knew you would probably be in here for a while. You should know Isaac, that as a North London girl born and breed, that was no easy decision! Daddy would take a job in central London so he could be closer to our new home in South London.  We had so many plans, all very different from the ordinary kind you make when you’re pregnant, but they were plans that included you being here and that’s all that mattered.

You came back from the scan a lot later than we thought.  Whilst we waited for the results, we were able to hold and cuddle you more.  Daddy sung to you.  It was the song he had sung to me on his guitar when we first started seeing each other - James Taylor’s ‘You’ve got a friend’.  Daddy cried as he sung the words with more feeing than I have heard anyone sing.  I can’t sing sweetie.  I would have done, but I didn’t want to upset you or the other little patients so I thought it best we just talked!  And talk we did.  Well, I talked and you listened.  I know you could hear me though.  Those hand squeezes you gave made it clear to me that you could.  It’s the one thing I refuse to believe the doctors about.  Your hand squeezes weren’t reflex actions, they were you telling me you understood me, loved me and you were going to be okay.  I was, and still am so proud of my strong little boy.

Late Tuesday afternoon we were led to the parents’ room again.  In my mind it was just for your results, and as you had survived Monday night I was convinced all would be fine.  We knew you would have some brain damage, but as I said before, we had a plan.  The three of us would be okay.  But we weren’t going to were we?  Things hadn’t gone well.   Every part of your brain had been damaged.  You were not going to be with us much longer, and it was a matter of days we were told.  I sat there stunned as Daddy cried.  I couldn’t cry, I just didn’t know how to anymore.  The phrase, ‘it felt like a nightmare’ couldn’t be more apt.  I kept thinking ‘why us?’  What had we done that was so bad that we had to be punished in this way?  I thought we were good people.  I know we weren’t perfect, but we weren’t bad people!  I stared at your Daddy wondering how we were going to survive all of this ourselves?  I couldn’t protect you and now you were going to be taken from us.  I did the only thing I felt I had left.  I prayed.

And so the deal making with God continued as I sat watching you in your cot throughout Tuesday night. 

God obviously wanted you sooner than we expected though.  By Wednesday morning you had already deteriorated a great deal.  Your blood pressure was all over the place and your fitting was worse.  You were swollen and clearly so very tired.  It felt like you needed the MRI scan to happen so you could say ‘I’m tired Mummy and Daddy. I can’t go on anymore’.  I understand my darling.  I didn’t want to, but I did understand.  You had been so brave and strong, and had done everything in your power to make sure you spent some time with us, but now you were too tired to keep going.  Mummy and Daddy understood and still do understand.  You were our miracle boy in many ways, and still are.  Like those Olympians’ unfailing determination to do their best, you also showed sheer courage and strength, and have inspired so many to be strong and brave too.

Until tomorrow.

Love forever,

Mummy.  XxX