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

 

The Six Days of Isaac - Day 3. 27th July 2012

My darling boy,

So, here is the story of your birth. It's the one blog I've been dreading because it was a day of the most amazing highs, and the most terrifying lows.  It started out as a good day though.

I woke up early on Friday 27th July 2012. Your Daddy had taken the day off work and we were going for your last scan before you were due to be born a week later. We had planned to go out for lunch after to 'Giraffe' restaurant. They did a mean hot dog, which I had been craving all week! It's funny, as I remember thinking you hadn't moved very much that morning and I had a slight pain in my stomach. I presumed it was wind, one of the many delights of pregnancy!  I wasn't worried though. I knew in a few hours we were having a scan, and the day before I had a midwife appointment where we had listened to your perfect heartbeat together. I wasn't concerned in the slightest.

So, off to the hospital we went. The scan was fine, if a little uncomfortable. The pains were a little worse, but the sonographer said everything was fine. Daddy said that the next time we saw you, you would be in our arms. We didn't know then we'd be meeting you sooner than we thought.

We left the scan room and proceeded to walk through the anti natal area. Thoughts of the hot dog filled my mind!  I'm not greedy, honestly I'm not!  It's just that the last few years I had been surviving on 1000 calories a day just to keep my weight down whilst we were going through the IVF treatment. The novelty of eating 'normally' was one of things I enjoyed about being pregnant! Thoughts of that hot dog quickly evaporated in to nothing when I felt what I can only describe as a ‘gush’

I was convinced it was my waters breaking. I quickly hurried to the toilets in the hospital. Before I made it though there was another gush. I realised then it was blood. I knew this wasn't normal and went straight to the labour triage unit. By the time we got there my legs were covered in blood.  I was scared and my pulse confirmed that!  Even though my blood pressure was fine, my pulse was racing. The midwives hooked me to a fetal heart monitor, and Daddy and I knew something wasn't right.  Your heartbeat was much lower. I was seen by a doctor who suspected it was a Placenta Abruption. If only we knew what that was then!  If we knew what it was we would have demanded action sooner. However, no one seemed that concerned that I was bleeding so much. Actually, let’s be honest, I was haemorrhaging. But why should we panic if the experts weren't? 

However, there was a major reason to panic. As your heartbeat dropped it meant you were running out of oxygen. An hour later I was moved to the labour ward. The doctors explained that you needed to come today and that it wasn’t urgent enough to do a c-section so they tried to break my waters.  Now I wish I had walked myself to that operating theatre and demanded they do the c-section there and then.  But I didn’t. I didn’t realise that was what they should have done. The doctor’s sense of urgency was minimal and I was just annoyed about being in pain! This selfish thought is one that still haunts me today. However, a few seconds after they broke my waters all pandemonium broke loose.

I was thrust a consent form to sign for a c-section.  I was wheeled quickly to the theatre while Daddy chased behind.  My clothes were being ripped off me and I had no idea how things had so suddenly progressed to this!  Daddy was screaming ‘what’s happened?’, while I was trying to fight back the tears.  The answer we got was that your heartbeat had dramatically dropped and they must operate now!  I heard the anaesthetist ask if there was time to do a spinal block.  “No time” was the answer given by someone.  I was told I would be put under general and everything would be okay.  I heard Daddy ask if he could give me a kiss but they said no and threw him out.  Daddy understood why, but I had no idea at the time.  You had no heartbeat my darling.  They had left you for too long inside me.  1 hour and 50 minutes to be precise.  They had all that time to save you before it had come to this, but they didn’t.  The last thing I remember was my hand being held by a kindly male midwife, and then nothing.

When I woke up, I was hooked up to all sorts of machines.  I had a group of consultants around me crying.  Daddy wasn’t there and neither were you.  I was confused, in pain and completely terrified.  I asked where you were.  The looks on the faces of the consultants gave me my answer.  You were dead.  I was sure of it.  They didn’t say anything for what seemed like ages.  Again I asked, crying now.  Too scared to ask if you hadn’t survived, I asked where you were, again.  They explained I had had a Placenta Abruption.  You had been born still but were resuscitated.  They had given up trying to find a heartbeat after 19 minutes, and were going to ‘call it’ and did their final check.  They heard a very faint heartbeat at that point and then started work on you again, this time to keep it going.  They had taken you to NICU and Daddy was with you.  Stunned, I asked them what I had done wrong.  Why had this happened to you?  They tried to reassure me that I had done nothing and that ‘these things happen’.  These things happen?!  Why?  To us?  Why?!  No answer was given.  Then Daddy was by my side and I asked again what had happened.  Daddy was in tears but gently explained in some more detail that you were here, you were a boy, but you were very poorly. I can’t believe I didn’t even know you were a boy until then! You were unable to breath for yourself and had begun to fit due to abnormal brain activity.  You had suffered brain damage because of a lack of oxygen.  This had happened because the placenta, your oxygen and food supply, had come away from me while you were still inside.  I didn’t understand what that meant.  I made Daddy tell me that it meant you may not survive.  He looked crushed as he said those words.  My darling Isaac, I cannot even remember what I said in response.  I couldn’t tell you how I felt at that point.  The world just seemed to shatter and I was beside myself.  I wanted to see you straight away, but I was too poorly and in a high dependency unit.  Apparently I lost a lot of blood, and at one point blood wasn’t being pumped around my body properly and my blood pressure had gone in to crisis.  Daddy told me there were around 40 people in the theatre when they eventually let him in to see you.  There was a wall of doctors and nurses around me while they worked on me, and a wall around you while they tried to make your heartbeat stable.  I just couldn’t understand.  It seemed only minutes ago you were still inside me and I was being told everything would be fine!  Now we were here, in the darkest of places imaginable.  The Paediatrician came in and suggested I should be taken to see you ‘just in case’.  It would be easier to move me than Isaac.  I do remember crying “what does that mean?”, and I was told to “prepare myself for the worst”.  God forgive me, but at that point I didn’t want to go.  I couldn’t face seeing you if you weren’t going to live.  I couldn’t bear to let you see me - the woman who had done this terrible thing to you; the woman who is meant to be your mother but hadn’t taken care of you properly.  Daddy convinced me to go, and I was wheeled in to the NICU.  I wasn’t prepared for what I saw.

 Yes, you were fitting and were hooked up to more machines than I had ever thought humanly possible, but I saw past that easily.  There you were, my beautiful blond haired little boy.  You were perfect, tiny, and precious.  I couldn’t believe Daddy and I had made someone so very beautiful.  They let me touch your hand and your skin was softer than anything I had ever felt before.  I sat mesmerised but your sheer beauty, and fell in love with you right there and then.  Nothing was important apart from you now.  Nothing would ever be as important as you.  Darren asked if we should call you ‘Isaac’, the name we had decided on if you were a boy.  It seemed the right thing to do, and that was your name.  It couldn’t be anything else other than Isaac.  It suited you from the moment we decided on it – a strong name for our miracle boy.  Years ago, my close friend Rachel was expecting a baby.  We talked about names, and I said I liked the name Isaac.  I made her promise she wouldn’t use it.  It’s funny how that thought came in to my head at that moment, but I understand why now.  Rachel passed away a few years ago, and the thought of potentially loosing you made me think of how it felt to lose such a good friend at an untimely manner.  I prayed that you wouldn’t be meeting Rachel anytime soon.  Now you’re not with us, I take some comfort in knowing a good friend up above is taking care of you.  Still, at that point Isaac, I was refusing to believe you would be joining her.

They then made me leave you just a few minutes after seeing you for the first time, and I wasn’t sure if I would ever see you again.  I wouldn’t say a ‘proper goodbye’ though, as I was determined that we would meet again soon.  You were going to be transferred to St.Thomas’ NICU unit as they had a special treatment called ‘Brain Cooling’ which could help to minimise brain damage.  I convinced myself it would work and that in no time at all I could be a proper mum and make it up to you.  Daddy had to leave me and go with you.  I was so glad Daddy would be with you to make sure you were okay.  There is no other person I could have trusted to take care of you.  And then you were gone.  I was alone in my room, without you or Daddy.

What happened when you got to St.Thomas’ is unfortunately not something I can tell you, but I know from what Daddy said you were well taken care of.  They put you in to your brain cooling suit, which we nicknamed your ‘spacesuit’, and they make sure you were no longer in any pain and stabilised your fits.  Daddy rang me every hour to update me, and that was the first of many nights neither of us slept.  Even though I couldn’t be with you, and I knew Daddy was taking such good care of you and he promised me he would tell you all about your Mummy too.

I was due to be transferred to St.Thomas’ to join you, but the hospital made a number of mistakes which meant I couldn’t be with you till the early hours of Sunday morning.  After a multitude of arguments, and eventually threatening to discharge myself, bossy Mummy got her way and I was by your side as soon as I got there.

I may not be literally by your side right now, but I know one day I will be.  Until then, know you are the first thing I think about every morning and the last thing every night, not to mention all the minutes in between that!  You came in to this world in such a dramatic fashion, and certainly in a way that we never wanted to happen.  But not one moment would we ever change meeting you as that was the day I realised what it truly meant to love with every being of my body and soul.

Love always,
Mummy.  XxX

The Six Days of Isaac. Day 2 – We wanted you so much

Darling Isaac,

That I was allowed to be your Mummy was the most precious and amazing experience.  Your Daddy and I were so blessed to have you. We had tried for so long for you and we couldn't have been happier when we were told the news that we were expecting. You see, it wasn't an easy journey. We faced a number of obstacles to conceive and carry you.

I suffer from Rheumatoid Arthritis. I have done since I was a teenager. When we decided we wanted to become pregnant, I had to come off all my RA meds. It would be too much of a risk to try and have you whilst on them. The only drug that could safely control the RA whilst we tried to become pregnant was steroids. Not a particularly nice drug to take, but so worth it if it meant we got to be parents.  So, the struggle to keep the RA under control began, and as months became years we realised that we weren't going to be able to become pregnant naturally. The RA was becoming worse, and I couldn't be on steroids indefinitely for much longer. It seemed that IVF was the only way to help us become parents.

The gruelling treatment was tough but seemed to be going well. Unfortunately it didn't work in the end, and we were gutted. Our consultant was optimistic though and made a few changes to the meds. So, four months later we were back cycling. This time I was convinced it wasn't going to work. My disbelief and shock continued even when we got the news I was pregnant.   We had success!  All those years of sacrifice had been worth it. However, despite those closest to us celebrating, I couldn't believe it had happened until I saw you for the first time.

I couldn't bring myself to look at the ultrasound screen until I heard the sonographer say 'there it is!’  You were amazing.  At seven weeks we saw you. You looked like a tiny bean with a wiggly dark line pounding away. The sonographer explained that wiggly line was your heart beating. That was the moment I realised you were real. This was actually happening. We were going to be parents! I gripped the scan photo tightly as I left the room and I held it in my hands until your image was safely stuck up on our fridge door. It was the first of many.

As the months past I became increasingly scared that something would happen to you. I was still terrified that it might not work out. The terror prevented me from being excited and I felt like a bad mother for feeling that way. It seemed too good to be true that you were really here and we would meet you soon. I still couldn't look at the scan images on screen until the sonographer confirmed you were okay.  I was so superstitious. I didn't want to find out if you were a boy or girl. I couldn't bring myself to pick out clothes for you. The idea of a baby shower even stressed me out! I was terrified I'd jinx this miracle I had inside me. It made me feel down and I couldn't seem to make others understand why I wasn't excited. I couldn't understand. I was scared we weren't bonding.

But we did, on an intimate level. I sometimes secretly talked to you.  I would tell you everything was going to be okay; we would be okay. You shared your likes and dislikes with me. You weren't a big fan of chocolate, much to my annoyance, and your taste in music was questionable!  Rizzle Kicks only needed come on the radio and there you would be bopping around to their music in my belly. I didn't even know the name of the band until I realised you liked them and looked them up on iTunes!  I downloaded their music on to my iPhone. I would get strange looks from people wondering why a '30 something' woman was bopping away to Rizzle Kicks in her car! Even now I sometimes listen to them because it reminds me of you. It's our little thing. Strangely enough, yesterday on our way to our little birthday picnic at St.Thomas’, we were playing your songs in the car.  Half way through your Rizzle Kicks favourite one of the largest butterflies I had ever seen flew by my window for a good few seconds.  I knew you were listening and enjoying your song!

Your Daddy was taken with you from the first instance. He didn't let me lift a finger the minute he knew we were pregnant with you. I seriously did nothing for 9 months!  Housework became a thing of the past! He would speak to you every day; his head by my belly, his hand stroking it. I joked that the ‘cutesy’ voice he put on was actually quite sinister, but you never seemed to mind and responded to him by kicking me in the bladder, often!  What an amazing man your Daddy is!  If you could see him now, and I'm sure you can, you'd be proud of him. He is doing everything in his power to raise money for the Evelina Children's' Hospital in memory of you. You’re Daddy has become a long distance runner!  He ran the Virgin London Marathon for you in April! With every step he took, I know he was thinking of you.  Since then he’s managed to raise even more money for the Evelina, and his aim is to buy the neonatal unit an Isaac NICU cot.  He will get there as he is determined, like you.  You’re both so alike in that way.  Your Daddy fights as hard as he can to show how much respect he has for the fight you gave to spend time with us. If you were here, he would have spoilt you rotten and taken such good care of you – I just wish he had had that chance.  I know he would have been an amazing Daddy to you.  Just from the way he took care of us before you were born proved it.  He still misses those little chats he had with you and the way you kicked my belly as he spoke. We both do my darling boy.

You were wanted, so very much. 

Until tomorrow.

Love always,

Mummy.  XxX

The Six Days of Isaac. Day 1 - Happy 1st Birthday

Dear Isaac,

Today you are 1 year old.

Today I should have been helping you rip the paper off the many presents we would have spoilt you rotten with.

Today we should have been cuddling you tight and counting our blessings, except we’re not.

So, how did we get here? Why on earth am I writing this instead of doing all the above? These are questions I ask all the time, and since we lost you there have been so many 'whys’. I still don't understand why you had to die. I wonder what I did wrong to make this happen.  I wonder why the hospital didn't act sooner.  Maybe one day we’ll get some answers, but in the meantime I will keep questioning.  And in terms of why I’m here writing this? I never had the chance to tell you all the things a mother wants to say to her child. Over the next six days I will try to.

l wanted you to know how much we wanted you; how much we loved you.  I wanted to share stories about our family and friends with you. I would have told you all about the people they are and how they were so looking forward to meeting you. I can't ever have those conversations with you now, or see your reactions to these little anecdotes and stories.  I won't ever see you smile or hear your laugh. I can only imagine your responses. So 'here' is simply the place for me be your Mummy. It's a place where I shall try and be honest. It's a place to remember you. Because even though you're not here anymore, I still want to be your Mummy. We got ‘here’ because I love you Isaac, and I don't know how else to tell you.

My birthday present to you Isaac is this.  I am going to write to you every day for six days to mark the time we had together.  I will share with you all the things I would have done if you were here in person, and some things I would never have had to say if you hadn’t had to leave us.  I will start with something simple though:  happy 1^st birthday my darling son.  May you feel the enormity of the love we have for you from where you are.  This day means so many things, but the most important one being that you were given to us a year ago, and for that we are truly grateful.  You may have left us sooner than anyone could ever have imagined, but not one day goes by that we do not thank God for you.   

Until tomorrow.

Love always,
Mummy. XxX.

http://www.virginmoneygiving.com/runningforisaac