Thursday, 21 July 2011

Happy Birthday Benjamin, 2 Today

I can't believe it's 2 years since my little boy arrived into the world.  Sometimes it seems like an eternity ago but mostly, it feels like it was just yesterday.  I can still visualize holding him in my arms and feeling his soft chubby cheek against mine.  In fact, I remember every detail.

I didn't feel the same amount of anticipation for this birthday as I did on his first birthday but I thought about it all the time as the day got nearer & how we were going to celebrate it.  This year, I asked Phoebe what she'd like to do for Benjamin.  She said she'd like to make a cake, make a card & send some balloons up to heaven for him.

Phoebe lovingly made Benjamin's card with a glittery number 2 (pink of course!), feathers, sparkles pompoms & googly eyes (yes, googly eyes!) and she wrote Benjamin's name on the front all by herself.  We wrote some nice words & put it up this morning.  We let 2 balloons go, one for each year & then we set out for the Zoo.  We'd thought about what Benjamin might like to do if he was here with us, so the zoo it was.  We had a really lovely day & when we came home, we sang Happy Birthday while Phoebe blew out the number 2 candle on the cake we'd made for him. After the cake, we went into the garden & sent a sky lantern up to Benjamin.  As I stepped into the garden, the first thing I saw on the grass was a little white feather.  I like to believe it's a feather from my little Angel.  Phoebe shouted "bye bye Benjamin" as we watched the lantern disappear out of sight.

Of course, the day didn't pass without tears but it was slightly easier than last year.  I feel Benjamin around me a lot, so that brings me a great deal of comfort.

Tomorrow is another day but I won't be dwelling on that one.........

Happy Birthday my beautiful little boy.

Love forever
Mummy, Daddy, Phoebe & Matthew

Wednesday, 25 May 2011

Sharing my Story

I wrote the blog with every intention of sharing it and with the hope of helping others.  When it came to the crunch, the thought of sharing my inner most thoughts and feelings terrified me.  I deliberated for weeks about sharing it, should I, shouldn't I?  I shared it with a few close friends and the response was really positive but I was still unsure.  Then my friend sent me this message and the minute I read it, I decided I had to share it..... 5 minutes later, I shared the blog on Facebook.....

"Nicola I have just read the entire blog and it has to be one of the most moving accounts of motherhood I have read. This is the kind thing that will help so many people who are unfortunate to have to face every parents nightmare ..However the entire thread oozes positivity and even hope . People are often pressured at times like this to make decisions they would not normally have made termination ..your decision to give Benjamin an identity by bringing him into the world and allowing him to feel your love has to be the most beautiful acts of love you could hope to perform on this earth ..Well done nicola for posting this ..Do not be nervous ..think of the people like yourselves who will grasp at the at the information you have posted and hopefully will derive comfort from it x"

Since taking the plunge and sharing my story 2 months ago, I've had an amazing 7304 hits!  The response has been overwhelming.  I've received emails of support from complete strangers from all over the world, all of which have affirmed that sharing Benjamin's story was absolutely the right thing to do.  I have received some emails with very sad stories and others of hope.  One woman shared her experience with me:

"What a touching story. Reading it broke my heart and brought back a lot of memories for me. When I went for my 10 week dating scan with my first child we were given the news that they thought that our baby had a major heart defect, a major bowel defect and downs syndrome and I was advised to terminate the pregnancy by the doctors right up to 22 weeks when I then knew that I was carrying a son and could feel him moving and growing inside me. I knew that in my heart, I just couldn't do it so I continued with the pregnancy and knew that no matter what, I would love my baby. He arrived exactly right on his due date and was perfect. No downs syndrome, no bowel or heart problems. Every birthday I sit and look at him and have a little cry that he might never had been born had I listened to the doctors. I am so glad that I followed my instincts. No one knows what they will do when faced with such a huge decision to make - you are a very strong woman x"

Many people have emailed me to simply say that reading Benjamin's story has made them appreciate their own children more.  To me, that in itself makes the blog a success.  I'd like to thank everyone for their support, for those that have messaged me and those that have shared the blog with their friends.  Every single message means something to me.  I've tried to reply to everyone but fear that the odd one or two may have slipped through and for that, I apologize.

And of course, for those of you who have taken the time to read it and share in Benjamin's short life...... thank you from the bottom of my heart.

Nicola xxx

Wednesday, 26 January 2011

18 Months On

It's 18 months since my beautiful baby passed away.  A lot has happened during that time but one thing remains constant.  My love for my little boy never diminishes or fades.  Not a day goes by when I don't think about him and miss him.  Benjamin will always be my little Peter Pan - my baby boy who will never grow up.

Some people may question why we made a conscious decision to put ourselves through this pain but to those people, I would say that I believe the pain of choosing a different path would possibly have been greater.  If I had chosen to have a termination, I would have had to live with that decision every day of my life.  Asking myself, what if?  Wondering if things might have been different if I'd given my baby a chance, perhaps never wanting to talk about it and not having the memories of Benjamin that I have. Dealing with the fact that I'd taken a pill to stop my baby's heart from beating and yet still having to deliver my baby- for me, that's the reality.  Instead, I gave my baby a name and an identity, a chance to meet his family and a legacy that I hope will remain with him for years to come.

I very much belive that Benjamin hasn't gone, he's in a better and more beautiful place and I know that one day, I will see him again. I believe that he had a purpose in this life.  I wasn't sure what it was at first but in the 18 months that have passed, I can see that so much good has come out of Benjamin's short life.  I believe that he has touched so many people and has been the inspiration for me to do some fundraising which I know has benefited other families in similar situations to me.  Friendships have been forged that would never have happened had it not been for Benjamin.

The pain of losing a child isn't something that I would wish on my worst enemy.  No parent should have to go through it.  However, I know that put in the same situation again, I wouldn't do anything differently.  I wouldn't choose it but I wouldn't change it either.  I know that for us, we absolutely made the right decision.  I have no regrets and in fact, I feel so blessed, honoured and proud to be the Mummy of this beautiful and special little boy.

14 months after we lost Benjamin, I gave birth to my third child, a beautiful baby boy, Matthew.  I know that some people thought it was too soon but nobody knew how Lee and I felt and how we had dealt and were still dealing with things.  In no way did we have Matthew to replace Benjamin, that's just not how it is.  I knew that we were ready and it is not for anybody to ever judge when is the right time for a couple to have another baby after losing one.  I'd be lying if I said that the pregnancy wasn't a worrying one, because it was.  I worried from conception until the moment I held Matthew in my arms and could see for myself that he was perfect.  We didn't tell anyone, not even our parents that I was pregnant until I had received the all clear at my 20 week scan (not really sure how I managed to hide it - or maybe people were just too polite!!).  I know that people mean well and only have your best interests at heart but I couldn't face the barrage of questions - when's your scan, is everything ok?  We just needed to deal with it in our own way.

We've never found out the sex of any of our children before they were born because it has never mattered to us.  It was even more so with Matthew.  It really didn't matter whether he was a boy or girl.  The baby's health was the most important thing.  I did wonder how I would feel if I had another boy.  Would I look at him and wish he was Benjamin, would I try to imagine in my own mind that it was so as to help ease the pain?  I was a bit unsure of how I was going to feel but I've always believed that Spirits are individual.  I was prepared for a boy when Matthew arrived though, it was no surprise, I knew he was a boy from quite early on.  Call it a maternal instinct if you like, I just knew.  The moment I held Matthew in my arms, I felt that overwhelming love and I knew without any doubt that Matthew has his own little spirit, he isn't Benjamin and I wouldn't want him to be, Benjamin has his own beautiful spirit.

Losing Benjamin has made me really appreciate how fragile life is and how we need to make the most of every moment we have.  Family is the most important thing in my life and spending time together as a family is so important to me.  I think that losing a child makes you appreciate that even more.  And as any new Mum will no doubt agree, having a newborn at home can be exhausting and draining but since losing Benjamin, when Matthew cries in the night and keeps me awake for hours on end or when he's screaming because he doesn't like getting in his car seat, I stop myself from complaining and always think about the little boy that I lost.  I would have given absolutely anything to be woken up by Benjamin in the middle of the night, no matter how many times or for how many hours, I'd have given anything.

As time passes, it helps to ease the pain but it never goes away.  I relish every opportunity I have to talk about my beautiful baby and can do it without tears most of the time now.  Sometimes, the tears come when you least expect them but I think that's healthy.  And when anyone asks me how many children I have, the answer is always 3.

The Funeral Director that did Benjamin's funeral had lost a child himself and something he said to me always sticks in my mind.  He said "You never get over it, you just learn to live with it".  So true.  My only hope is that by going through something like this, I can help to make a difference to others who so sadly find themselves in similar situations.

We are so proud of you Benjamin.  We love you and miss you and you are forever in our hearts,

Sending big hugs up to heaven.
Mummy, Daddy, Phoebe & Matthew

Tuesday, 25 January 2011

The Days that Followed

The hospital were so kind to us.  They took hand and footprints of Benjamin and put them in a keepsake box.  They also took a few strands of his hair for us to treasure.  They allowed us as much time as we wanted to hold Benjamin and have our final moments with him.  I never wanted to leave him but I knew that I had to.  The moment we had to be parted from him was unbearable.  I didn't want to hand my beautiful baby over to strangers and leave him alone in the hospital.  When the Midwife came to take him away, her words to me were "don't worry, I'll look after him like he were my own".  She will never know how much those few words meant to me and how much comfort they brought.

We arranged for Benjamin to go to a Chapel of Rest close to our home.  I needed to have him as near to me as I possibly could.  As stupid as it may sound, I did get some comfort in arranging the service for his funeral as I felt that I needed to do the best for my little boy and to make sure he had something special to honour his short and precious life.  We chose a beautiful version of twinkle twinkle little star and chose some beautiful poems for the service.  My brother designed a beautiful order of service.  We did the best that we could for him.

We chose to have Benjamin cremated as I couldn't face the thought of watching his tiny coffin be lowered into the ground and leaving him there.  I think I would have felt the need to be permanently at his graveside and that isn't what I wanted.  I wanted him at home with us, as near to us as possible.

It goes without saying that the day we had to say our final goodbye to Benjamin was another one of the worst days of my life.  No parent should ever have to go through the pain of losing a child.  It's just not the way it should be.

The days and weeks that followed the funeral were especially tough.  I felt so fragile.  The first time I went to the Supermarket after Benjamin's funeral, I felt like I was standing still and everyone else was moving around me.  I felt like screaming out to them "don't you know I've just lost my baby?".  These people were just carrying on with their everyday lives, doing trivial things, I felt like they should all be in mourning like me.  I remember reading peoples status's on Facebook and thinking "I've just lost my baby and all you can share with the world is that you can't decide what to have for your tea!".  I stayed away from Facebook for quite a long time.

Monday, 17 January 2011

Benjamin's Arrival

As the pending arrival of the baby drew closer, I became more and more anxious.  Part of me wanted to never go into labour because I knew exactly what was ahead.  The other part of me wanted it to happen so that I could begin to move on from this nightmare.

Benjamin went 4 days over his due date and when we arrived at the hospital, the Midwive told me that they'd been expecting me for some time.  I don't think they thought that Benjamin would make it this far.  The Midwife was right, Mother Nature was extremely kind and Benjamin was born very quickly with just gas and air.  Under normal circumstances, I guess it was the kind of delivery any woman could wish for.

When Benjamin was born, he didn't make a sound.  There was no miracle like my parents had hoped for, it was exactly as the Doctors had said.  They handed me our beautiful baby boy and Lee and I just cried.  He may not have been physically perfect but to us, he was perfect in every way.  I had never doubted that we had done the right thing but at that instant, I knew that we had given our beautiful baby a chance.  Although his time on this earth was short, it was priceless and precious time.  Benjamin met his Mummy and Daddy, his big Sister, his Grandparents and his Uncle Stuart.  Our little boy has a name, an identity and a family that he got to meet and be loved by.

Meeting Mummy & Daddy x

My Mummy & Me x

Meeting my Big Sister & Making Memories x

The next 27 hours were like nothing I've ever experienced or want to experience ever again.  All we did was cuddle our beautiful son  Throughout the course of the 27 hours, Benjamin kept having breathing apnoeas.  When he had the first one, we thought we'd lost him.  It was the worst feeling ever.  He would stop breathing completely and then what seemed like an age later, but was probably only seconds, he would gasp and start breathing again.  We became accustomed to this eventually as it became quite a regular occurence but each time it happened we seemed to hold our own breaths in the anticipation that he wasn't going to start breathing again.  Our beautiful little boy opened his eyes and looked at us.  It was amazing to see him looking into our eyes and it helped to ease our pain.  I know that he knew he was loved.

After about 4 hours, the Doctors decided that we needed to feed Benjamin.  As he had a cleft lip and palate, I wasn't able to feed him myself and he couldn't have a special feeding bottle either, so we had to take him up to the Special Care Baby Unit where he had a feeding tube inserted.  We went up with him - we were too scared that something might happen if we left him for even a minute.  The Doctors decided to administer morphine just to ensure he wasn't in any pain - he wasn't showing any signs of discomfort but I guess they wanted to act on the side of caution just in case.

The hours that followed were just spent cuddling and loving our little boy.  We got to do some of the normal things that new parents do - we changed his nappy and dressed him.  We took some photos and did some camcordering and tried to make some memories in the short time that we had.  It was hard to smile for the family photo but I knew that in the months and years to come, I wouldn't always feel as desperately sad as I did at that moment and it was important to have something to look back at.

Benajmin kept going and at one point, we even talked to the Doctors about the posibility of taking him home.  I think it was just wishful thinking on our part if I'm honest but the longer he kept going, the more I think we thought he may defy the odds and keep going for weeks.  In hindsight, we were probably crazy to even think it but I guess we just wanted to take our baby home like any other normal couple.

In the early hours of the morning on the 22nd of July 2009, our beautiful baby boy passed away peacefully as we cradled him in our arms.

Our Precious Angel

My Rock! x

Wednesday, 12 January 2011

The Next 4 Months

The Hospital kept a close eye on me over the next few months with more scans than is usual.  They told me that there was no reason why I wouldn't have a normal birth.  They explained that in these situations, Mother Nature is often quite kind and that the labour can be quite quick.  They also assured me that I wouldn't be put in a ward with new mums with healthy babies and that they had a special room away from the normal wards which we would be in.  I felt happy that we'd be ok at Leighton.  The Midwife who'd seen us originally saw us again to help us to understand some of the things that were going to happen.  We had questions - what should we expect when the baby was born, what would happen to him once he was born and what would happen to him once we lost him? A conversation that no expectant parents ever imagines they're going to have.  It was very emotional but I felt reassured that we would all be well cared for. 

The baby continued to kick, move and let me know he was there.  Everything about the pregnancy itself was normal and physically, I felt fine.  We chose not to find out the sex of the baby.  Somehow, I felt that knowing whether it was a boy or a girl would make it even harder.  In my mind, it would have a name and I think maybe I would have bonded with it more.  I didn't really talk to my bump much either, it was all my way of coping with what was to come.  I felt the more I'd bonded with the baby before it was born, the harder it would be after.  In hindsight, I know it couldn't ever have been any harder than it was.

Sometimes it was difficult to carry on as normal, knowing what was ahead but I knew we'd made the right decision and we just had to get through it.  Our 2 year old daughter carried us more than she'll ever know.  She was a huge distraction and we just had to keep going for her.  We carried on with our normal, everyday things.  Sometimes I would have liked to have been able to shut myself away so that I could avoid the inevitible questions and interest that pregnant women always seem to attract!  I was doing lots of things with Phoebe though at that time as she hadn't started pre-school, so unfortunately further questioning was inevitble!  With the nicest intentions, people would ask about the sex of the baby, did we know what we were having, I bet you can't wait, when was I due?  I remember the first time someone asked me after I'd found out, I just broke down in tears.  I felt bad for them really as they must have felt terrible.  Almost everytime I went to the Supermarket, the person on the checkout would ask me when I was due and so on.  On one occasion, a lady asked me if I knew the sex and I said no.  "Well, as long as it's healthy, that's all that matters", which of course is true.  I just smiled and said yes.  I'd be lying if I said it wasn't tough at times because it was but as time passed, it became easier for me to tell people - I'd done it that many times.  One particular day though, I remember meeting a lady, not someone I knew particularly well but I saw her regularly at one of the classes I took Phoebe to.  I must have been at least 8 months pregnant.  She asked me about the baby and so I relayed the circumstances to her.  "Oh dear" she said "could you not have had a termination?"  I was dumbfounded.  It was so matter of fact.  I told her it wasn't ever an option for us.  She seemed surprised.  I can remember that conversation like it was yesterday, I have never really got over her matter of fact view.  This was my baby she was talking about.

Some "normal" things were harder than others.  Two weeks after we found out that our baby was going to die, my Sister-in-Law gave birth to a beautiful baby girl.  Naturally, I was really happy for them but I didn't feel able to go to the hospital to see her and when I met her and held her for the first time, I silently sobbed to myself.  I was holding this beautiful, perfect baby, knowing that when I held my own baby in a few short months, it was going to be taken from me.  Another time, I remember going to the funeral of an elderly lady, Mary - an old family friend.  I was stupid to think that I could handle it, but I felt I needed to go having known her as long as I had done.  I didn't even get as far as the start of the service.  When I sat down and looked at the order of service, I became too upset.  I knew that in just 2 months, I would have to plan my own child's funeral.  I had to leave.

During the course of the next few months, we had a visit from the Cleft Lip team.  They came to our home to show us pictures of how our baby might look - so we knew what to expect really.  Although visibly, the cleft lip and palate was the worst thing, it was actually the easiest thing to put right.  Babies are born everyday with cleft lips and palates and surgery is so good today that you can hardly, if at all, tell that a baby has ever had one.

As the birth got closer, we talked with the Doctors about how long we could expect to have with our baby once he was born.  I'm not sure Leighton itself has ever had a baby born there with Patau Syndrome before but the Consultant we saw had seen 2 in his 15 years as a Doctor.  He said that it was difficult to say, it could be hours, it could be days, but nothing more than days.  Our main concern above everything was that the baby wouldn't suffer.  Apart from any pain relief that the Doctors deemed necessary for our baby, we decided that we didn't want any intervention.  We knew that our baby wasn't going to live. All we wanted was for his short time on earth to be peaceful and to be spent being cuddled by the people who loved him.

Monday, 10 January 2011

Decision Time

The weeks and months that followed weren't easy if I'm honest.  After the results of the amnio, we had a follow up appointment at Liverpool Women's Hospital.  They didn't really have a great deal more that they could tell us about why this had happened- they explained the duplication of the chromosone in more detail and explained that this was purely just a freak thing - 1 in 10,000!  (My friend put it into perspective when she said that if you filled a stadium full of 9,999 men wearing white underpants and 1 man wearing red underpants, what are the odds of you picking the one with the red pants on?  Pretty damn slim.  How true though - pretty funny too!).  They assured me that it wasn't something that I had done that could have caused the problems with our baby (which of course had gone through my mind!).

The only and most important thing left to discuss was the future of our baby.  They asked us whether we had considered a termination.  Of course, Lee and I had discussed it, we'd discussed every possible option.  We'd discussed it between ourselves and we'd discussed it with family and a few friends.  Most people we talked it through with just listened to us and I think probably just felt sorry that we were even in this position.  Most people were non-judgemental.  However, I distinctly remember a few people that had strong opinions on the matter.  One person implied that I would be selfish to continue with the pregnancy and that I was putting myself before the baby!  I found that quite hard to take in.  Then there were other people who told me stories that gave me hope - stories of babies who had been diagnosed with horrific problems during pregnancy and then were born without a blemish.  I knew deep down though that this wasn't the case for my baby but I know that my parents clung onto this hope until the very end.

The Hospital told us that most people in this situation terminate the pregnancy but Lee and I had already reached the conclusion that this wasn't the right decision for us.  I've always been against abortion but when faced with a situation like this, every scenario goes through your head, if only for a fleeting moment.  The harsh reality was that at 22 weeks, I would have to deliver the baby.  I would have had to take a pill to stop my baby's heart from beating and then give birth.  How in my right mind could I do that?  There was just no way, no way in this world.  Our decision was made, we were going to give our baby a chance.  I very much believe that what is meant to be is meant to be.  If our baby was meant to be born, then it would be.  Our only concern was for the baby, we didn't want him to suffer.  They told us that there was no reason why the baby would suffer.

They disucussed our options of where to have the baby, at Liverpool or at our local Hospital, Leighton.  At first I wanted to have it in Liverpool as I felt that they had had more experience in these kind of things.  However, that meant I would have to be induced, which having already done it with my daughter, didn't want to repeat the process.  I was happy to have it at Leighton but my biggest fear was that I would be put onto a ward with other new Mum's with perfectly healthy babies - a prospect I couldn't face.