Monday 19 March 2012

Mummy's Day

It was Mother's Day yesterday here in the UK and to say I was dreading it was an understatement.  At one time I had been so excited about this day - after all, this year was supposed to be the year I would be receiving my own Mother's Day card and not just giving one.

After losing William, the day can now only serve as a reminder of what I have lost.  In the weeks preceding, everywhere I turned were references to Mother's Day - signs out side card shops, bouquets filling the entrance to the supermarket, hell, even the M&S advert was promoting a £15 Mother's Day meal you can buy and cook your Mum.  It feels as though the the entire country got together and took it upon themselves to have a special day to remind me (as if I could possibly have forgotten)

YOU DON'T HAVE YOUR BABY.
YOU WON'T BE GETTING A CARD. 
YOU AREN'T A MUM.

And perhaps its not just the entire country who is saying that to me. Perhaps, if I'm honest, it's the way I really feel about myself.  It's definitely the way I think my friends, even my very close ones, feel about me. If they were asked which of their friends were mothers, I don't think I would be included in the list.

My counsellor is always saying  "You ARE a Mum" to me. On the one hand I love hearing that but on the other I find it very hard.  It brings tears to my eyes every time.  You see, I don't really feel like a Mummy.  Deep down I know I am William's Mummy but I never had a chance to mother him. So now I have this title of "Mummy" but its a role I can't fulfil as William isn't here. It leaves me feeling stranded. I have all of this motherly love to give and no one to give it to.  It is a difficult position to be in and one which I don't think will ever change until we are lucky enough to have another child.

I am incredibly lucky to have an amazing husband who completely understands how I feel about being/not being a Mummy (I guess because he feels the same way about being a Daddy too). He knew I was dreading yesterday and he was very aware that the day was certainly not going to be anything like I'd imagined when I found out I was pregnant just under a year ago.

He knew I didn't feel like I deserved a card but he gave me one anyway and inside he told me that I was the best Mummy in the world for protecting William and going through all of this pain so that he didn't have to. He also gave me this beautiful Sweet William candle which we lit last night before bed and thought about our little boy.



As you can imagine, it made me cry, but as I was reading the words he had written in the card, I felt, for  perhaps the first time since I had held William in the hospital, that I was a Mummy. My husband was right.  Isn't the role of a parent to love and protect their child? To do what's best for them? To put the child's needs before their own? Isn't that what we had done for William when we sent him to Baby Heaven? We loved him. We wanted to protect him. We wanted what was best for him. And, even though its broken our hearts we chose to take that pain than for him to suffer for even a second. We made that decision as his parents. We made that decision as his Mummy and Daddy.  Nothing can ever change that.

Thursday 15 March 2012

Aversion Therapy

As you may have already read, I tend to try and avoid all pregnant people and/or babies as they are painful reminders of what we have lost. I don't see any pregnant friends or any friends who have young babies. If I get on the tube and there is a baby I get off and go and sit in another carriage. If I'm queuing to pay for something in a store and there is a pregnant person in the line, I go to another checkout.

Realistically, I'm not going to be able to do this forever. There are going to be times where I get on the tube or I'm in a restaurant and someone walks in who is pregnant or has baby.  What am I going to do? Stand up in the middle of my meal and just walk out? I am going to have to get used to be around bumps and babies or its going to get out of control. Plus, I don't want to cut those friends and family who have babies out of my life forever. I've already lost enough. I don't want to lose them all too.

So, I've enrolled myself in an Aversion Therapy course. I am the tutor and there are no other students (not surprising given I made the course up myself in the privacy of my own living room!) so I can pretty much dictate the rules and what the course involves.

There are five stages to my made up course which are as follows:

Stage 1: Learning to tolerate pregnant strangers.

Objective - student must be able to be in the presence of pregnant strangers without welling up in tears and staring at their baby bump. In order to pass stage 1, student must be able to sit or stand next to a pregnant stranger.

Stage 2: Learning to tolerate stranger babies

Objective - student must be able to be in the presence of stranger babies of all ages (including newborn). In order to pass stage 2, student must be able to tolerate hearing the baby cry and seeing the mother feed baby.


Stage 3: Hanging out with friend's babies who were born pre-William

Objective - student must be able to spend time with and play with the baby.  Student must be able to tolerate hearing the baby cry and be able to watch the mother interact with or comfort the baby. In order to pass stage 3, student must be able to hold baby...and then be able to give it back to the mother.

Stage 4: Hanging out with pregnant friends


Objective - student must be able to spend time with friends who are pregnant and have announced their pregnancy since William was born. Initially, the student will be expected to do nothing more than spend time with the friend and look at her from the neck up only.  Over time, student should endeavour to make general enquiries about the pregnancy (an example might be to ask the mother when she is due). In order to pass stage 4, student must be able to look at the friend as a pregnant person - i.e. someone who actually has a bump body below her neck.

Stage 5: Hanging out with friend's babies born post-William

Objective - student must be able to spend time with babies who are born after William was born. Student must be able to tolerate hearing the baby cry and be able to watch the mother interact with or comfort the baby. In order to pass stage 5, student must be able to hold baby...and then be able to give it back to the mother.

So far, I think I'm hovering around stages 2 and 3. I stood behind a pregnant person in the queue in Starbucks today and didn't freak out. That being said, I am not sure I could stand to sit next to a pregnant stranger on the tube. I can also walk past mothers with prams and have been in a cafe at the same time as a baby (although I did end up bursting into tears but that was because the baby was sat in the same pram we'd bought for William) but I can't stand hearing them cry. I've also spent time with and held two babies who was born before William came along.  Both of them were girls and about nine months old. As a result, they looked nothing like William and were able to interact with me as they were no longer little newborns. I didn't find it easy to be around them and when I left I noticed I had a nervous heat rash all over my chest so it obviously really affected me.  As a result, I think I need to work on this module and I'm not ready to graduate to stage 4 just yet.

I have had the odd mental moment where I have thought about taking this aversion therapy to the extreme and skipping to stage five which involves me going to John Lewis and just standing in the baby section watching all of the pregnant families around me. In reality, I suspect this is not sensible and it will only end in one of two ways:

(a) Claire breaks down in hysterical tears and has to be taken to the Manager's office so that they can call her husband to come and collect her;

(b) Claire is taken to the Manager's office by Security so that they can call the police as they suspect her of being a baby snatcher given she has spent the last hour not buying anything and staring at other people's babies.

So for now, I'm sticking to the therapy plan above. It will be interesting to see what happens when I go back to work next week. I know one of the secretaries at work is pregnant and I have a sneaky suspicion one of my friends at work is pregnant (although she hasn't told me yet).  Ordinarily I would avoid her but as she works in my office its going to be pretty much impossible so I might be moving on to stage 4 sooner than I think.

Wednesday 14 March 2012

Baby Loss Buddies

This whole baby loss experience (for want of a better word) can be pretty isolating. Sometimes I feel like I want to cut myself off from the rest of the world and hide in my house with the curtains drawn. In reality, and especially if I do want to start trying to get my life back, I appreciate that that is not practical.  I do need to have some interaction with the outside world.

My husband and I are really lucky. We have some great friends who have been hugely supportive throughout this whole ordeal and offer to meet up with us whenever we want - we only have to ask. Here's the problem....they all (and I mean ALL) have babies or are pregnant. Some of them even have more than one baby. One of them has two...and she's now pregnant with twins (now that's just plain greedy in my view).

I find it too painful to be around babies or pregnant people at the moment - I'm already in enough pain without actively seeking out more by surrounding myself with reminders of what we have lost. So, I pretty much don't have anyone to hang out with in the outside world.

I mentioned this to my counsellor and she said "you need to get some new friends". I laughed and thought she was joking. I mean,  I'm 31...where the hell am I going to go and pick up some new friends?  Everyone already has their friends by the time they hit 30. I can't exactly walk into a bar and go and sit at a table with a bunch of random strangers and ask them to play with me...did she not see Bree try and fail at that in Desperate Housewives last week?

Turns out she wasn't joking and she wasn't proposing I pick up some new mates in a bar. She wanted me to get a new, very special kind of friend - the Baby Loss Buddy.  A Baby Loss Buddy is someone who (as the name suggests) has also lost a baby and so has been through the same experience as you. They are in the unique position of being able to understand exactly how you feel - without you even saying it - as they have been there themselves. With them you can say anything. There is no filter on the conversation as they will not judge you. They understand. Completely understand.

This sounded like a great idea but the only problem was, where do you find yourself one of these Baby Loss Buddies? My counsellor suggested getting in touch with a help group like ARC or SANDS and asking if they could put me in touch with someone.  As it happened, I am already a member of the ARC online support forum and someone on there had asked if anyone in London fancied meeting up for coffee. So, I tentatively replied.

Last weekend four of us met up for brunch. I was incredibly nervous when I walked into the cafe. Since hiding away at home for the past five months I've lost a lot of confidence and so meeting old friends, let alone new ones, seemed really daunting. I was also a slightly worried that we might all be a bit depressed and that hanging out together might bum us out even more.

I needn't have worried. All three of the girls were so nice and within a few minutes we were all chatting away like old friends. So many of the things they said resonated with me and it was a relief just to know that how I feel is normal. That they feel that way too.  It's too early to tell yet whether we are the types of people who would be friends were it not for the fact that we have all lost babies but for now, just having that in common is enough for each of us.

And when I walked out of the cafe it felt like a little bit of the weight had been lifted. I actually felt happier and definitely not so alone.  Losing William has been the worst thing I have ever been through and it is very hard to see any positives that could come out of this. But, perhaps I will now make a couple of special friends as a result and that would be nice.  I really hope that is the same for William too. Maybe the babies of my Baby Loss Buddies will make friends with William and he will have some mates to hang out with in Baby Heaven. That would be really cool.


Tuesday 13 March 2012

Riding the Wave of Grief

For a while now I have been thinking of this whole grieving process as a bit like trying to surf (not that I can surf but I've watched Keanu in Point Break).  I feel like I am trying to ride a wave. There are really big ups and downs but I keep trying to stay up on the board and on my feet.

Every so often a really big wave comes along and knocks me off the board and into the sea. I swallow a shit load of sea water and find myself gasping for air, coughing and spluttering. I have to muster up enough energy to drag myself back up onto the board like a drowned rat and try and catch the next wave.


Until recently, I'd always imagined myself trying to scramble back up onto my feet and up on the board as soon as I've been knocked off.   However, this week I met a new Baby Loss Buddy and after explaining my surfing analogy to her she said that sometimes she feels the need to paddle for a a bit before climbing back up on the board.

For some reason paddling had never occurred to me before but thinking about it now, it seems like a good idea. When I'm knocked off the board I am so worried I'm not going to be able to get back up again that I try to get back up there as quickly as I can and it can be pretty exhausting. Maybe I should be paddling.....a little break might give me some time to think about my surfing stance and why I wiped out...as my Baby Loss Buddy, said we can just enjoy the scenery for a bit and miss a couple of waves until we feel strong enough to catch the next one. 



Monday 12 March 2012

Baby Mourning Leave

I haven't been back to work since the day we found out there were tumours in William's heart. It has almost been five months but to me, it feels like no time at all.  Work have been great about letting me have as much time off as I need...although they didn't really have much choice. As William was over 24 weeks when he was born, I automatically qualified for Maternity Leave....or Baby Mourning Leave as I like to call it.  On top of that, I also qualified for sick leave as I have been physically unfit to work following the operation on my neck.

I am now starting to feel a bit better physically - I am in a lot less pain with my shoulder and am off all of the painkillers and I am a bit stronger emotionally and so in recent weeks I have been thinking about whether I should head back to work. I want to try and get my life back and I know I am going to have to go back to work to try and do that.

To test the waters I have been into the office a couple of times for an hour or so. I've been in to meet HR and also been back to see my team and my bosses. I was incredibly nervous and I found the whole trip into work to be very draining but it was not as bad as I'd feared.

The worst part is that people don't know how to treat you or what to say to you. The most common reaction seems to be to look at me as though they are a rabbit trapped in headlights. They ask how you are and make polite conversation but they don't want to hear an honest answer - you can almost see the look of fear in their eyes as you start to speak- will I mention the baby I've lost? will I tell them how I really feel when they ask? Of course not. You know they don't want to hear that! They tell you "you look really well" and you laugh....after all...appearances can be deceptive and if they could have a look at you on the inside, you know they wouldn't say the same!

Hopefully, this reaction will only be short lived and once I go back to work, people will stop looking at me like I am about to shoot them and will start treating me more normally. I suspect it will take a few weeks but I hope that longer I am there the easier it will be. I'm also sure that part of it lies with me and how I think people perceive me - I have this ridiculous idea that if I walk into the work canteen, everyone will fall silent and turn to look at me and the only sound I will hear is a fork falling to the floor. In reality, this is unlikely to happen but I still know I won't be walking into the work canteen anytime soon.

So I guess the biggest questions now is whether I am ready to go back to work. The honest answer is I don't know. How can you ever know if you are ready in this situation?  At some point, you just have to take the plunge, go for it and hope you are.

Friday 9 March 2012

To Truly Understand These Shoes You Must Walk In Them


So I know most people have their own views on the whole pro-choice/pro-life debate and there will be some people who will simply not understand our decision to send William to Baby Heaven - even with all of his medical problems.  For a fleeting moment, the views of others was something which caused me concern - what would our friends think? Would they judge me? Would we lose friends over this?


Ultimately, as William's parents, we had to do what we thought was best for him and it didn't matter what anyone else thought. My husband would constantly remind me - "they may think they know what they would do in this situation but until they are stood there in that hospital room, talking about their own baby, they will never really know".


We have been really "lucky" in that we have received nothing but support from our friends and family and if any of them do disagree with our decision, they have certainly never let it be know.  However, it is something I do still think about from time to time most recently when I read another girl's blog entry about her own experience of losing a baby.


The girl in question lived in Ireland, and like William, her baby had had severe genetic problems and she had decided that she could no longer continue with the pregnancy.  As she lived in Ireland, she had been forced to fly to the UK for the procedure. This, in itself, I found very sad - the ordeal she was faced with was already traumatic enough and it seems unnecessarily cruel to force her to leave her friends, family and support system behind her and fly elsewhere for the medical treatment she needed. This aside, how she was treated upon her return to Ireland astounded me.


Like may women who have been through the deeply traumatic experience of losing a baby, she sought counselling to help her try and come to terms with what had happened. Thankfully, this was offered to her in her home town in Ireland. However, instead of the counselling sessions helping her through her grief, they proved to be extremely upsetting.  The sessions themselves were fine but each time the girl in question walked to or from the building where the sessions were held, she was met with a barrage of abuse from protesters outside.  On one occasion they cornered her and wouldn't let her walk to her car and continued to shout at her even as she broke down in tears.


Each person is entitled to their views and as I said at the outset, I am sure there are people within my own circle who disagree with the decision we made for William.  I am certainly not saying that the path we chose is always the right one, but it was the right one for our little boy.    What I do disagree with, however, are those who openly judge other parents for the decision they have made and berate them for it, especially when they themselves have never been faced with having to make such a decision.


I have not encountered one set of parents who were "happy" to have been given the option to bring the pregnancy to an end for medical reasons.  Whilst they may be thankful that they had the option to prevent their child from a lifetime of suffering the decision has ultimately been heart braking.  My little boy was very much wanted...more than that...he was desperately wanted by me and my husband. We loved him terribly and choosing to let him go has broken our hearts. We will never ever be the same again and we will never ever get over the pain of losing him. 


am sure this is exactly how the girl in Ireland feels.  She is heartbroken. She loved her baby. She wanted her baby. She did what she thought was best for her baby.  The decision she made was one based on pure, unselfish love for her unborn child and it was heart braking   I am sure it takes ever ounce of strength she has just to get up in the morning, let alone to drive her car to the counselling offices and walk across the car park into the building whilst the protesters hurl abuse at her.  I wonder...would their reaction be the same if they had been faced with making this decision about their own child? I suspect not. 


Until you've walked in my shoes, don't judge me.


I wear a pair of shoes
They are ugly shoes
Uncomfortable shoes
I hate my shoes
Each day I wear them and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step
Yet, I continue to wear them
I get funny looks wearing these shoes
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs
They never talk about my shoes
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize I am not the only one who wears these shoes.
There are many pairs in this world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt
No woman deserves to wear these shoes
They have made me who I am.
I will forever walk in the shoes of a woman who has lost a child.

Wednesday 7 March 2012

Catastrophising

As you'll already know if you've been reading from the beginning, my Dad had chest pains when he was at the hospital with me when I was having William. The same thing happened again when he was at the hospital when I had my tumour removed. After various tests, the doctors confirmed he had had a heart attack.

He had to go into the hospital for an angiogram to determine whether there were any blockages in his heart and to see if they could be treated with stents or a heart bypass.  Two blockages were found, one being over 90%.  Thankfully they could be treated with stents.

To say I took this news about my Dad badly would be an understatement. In the weeks leading up to his procedure I manage to convince myself that he was going to die.  I felt hugely responsible and that the stress I had put him under whilst I was in hospital having William and also during my neck surgery has caused the heart attack.  I also knew I would not survive if I lost someone else. I couldn't live without my Dad.

I would burst into tears at the mention of his name and began a countdown to his surgery....

"One week left with my Dad"

"Six days left with my Dad"

"Five days left with my Dad"

and so on.


This continued to the moment he was wheeled into surgery and as I looked at him on the trolley I thought "That is the last time I will see my Dad alive".

I spoke to my counsellor about this and rather than thinking I had completely lost the plot, she said these morbid fears were actually quite normal when you have recently gone through a traumatic experience. She called it "catastrophising" and gave me a little sheet which explained that we:

"Overestimate the danger we are in and underestimate our ability to deal with the situation. This is usually orientated towards the future in which the person is at liberty to populate it with terrifying scenarios"

Apparently, I had lost the ability to think rationally about the likely outcome of my Dad's surgery and instead was imagining the worst possible scenario which could happen. For me, having already lost William, it was the prospect that the Grim Reaper was also hankering after my Dad.

I'm not sure this explanation particularly helped me much because, as I said, when he was wheeled into surgery I was still utterly convinced that I would never see him alive again, but I felt slightly less nuts knowing that this was in fact a documented condition.

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Friday 2 March 2012

Finding Your Happy Place

Sometimes, when I lay in bed at night, I can't sleep. It's not for want of trying but I just can't get my brain to turn off. It feels like its whirring and a million bad thoughts keep rushing through my mind....the scan appointment where we were told there were tumours in William's heart, the moment the needle was injected into my stomach, the physical pain I felt. Along side all of these thoughts are the endless questions which I keep going over....did he feel any pain? did we do the right thing? would it have been better to have him here, even with all of his medical problems than feel the pain I feel now at his loss?

In the weeks after William was born, I spent many a night lying awake in bed until 4 or 5am with all of these thoughts and the only way I would get to sleep would be to go downstairs and watch tv until I fell asleep on the sofa through exhaustion.

In the past, my pre-William days, if I couldnt' sleep I would think of my Happy Place and it would relax my mind and enable me to drift off. My Happy Place would either be the day of our wedding - in particular the moment I walked through the doors of the church on the arm of my Dad and saw my husband-to-be waiting at the end of the aisle for the first time or it would be us on the beach at Mnemba, the island we went to for our honeymoon.

Since losing William, I haven't been able to think of or access these Happy Places in the same way. I don't know why but part of me thinks it is because those memories relate to the old me. The me before all this. Before my heart was broken. I'l never be that same me again and so somehow I can't connect in the same way with that girl on her wedding day, or the girl on the beach. She is gone.

So, I needed a new Happy Place. One that related to the new me and which related to a new happy memory in the post-William days.  Those of you who have been through this will appreciate that in the immediate days and months after you lose your longed for baby, the happy days are few and far between. For me, it took leaving the country and getting away from my real life for me to be able to be able to find a new Happy Place.

A few months after we lost William and just before my tumour surgery my husband and I flew to Las Vegas. We felt like we needed a break and wanted to go somewhere which was as far away from our real life as possible.  I'd been to Vegas twice before and although I have no idea about gambling, I love the place. It reminds me of a grown up Disneyland for adults. It's somewhere where, no matter what is going on in your real life, you can't help but feel a little happy.

On our first night in Vegas we headed down to the Bellagio to watch the fountains outside the hotel....you know the ones...in the Ocean's Eleven movie.  Every time I go to Vegas I become obsessed with these fountains. They are just so beautiful to watch and can't help but make you feel happy and uplifted.

There are about 24 different pieces of music they play at different times of day and on the evening we first watched them, the song of choice was Time To Say Goodbye.


As we watched the fountains, tears streamed down my face as I thought about how poignant it was that this should be the piece of music they should play.  It also felt so right to be watching something so beautiful as I thought about saying goodbye to my beautiful son.  I felt sad to know that this really was goodbye, but at the same time, I felt happy - like my heart had swollen and was filled with pure love for my little boy.  It was in this moment that I found my new Happy Place.

When I think back to it now it only reminds me of how beautiful William was and how much I love him. It's not a sad memory, but a happy one and it makes me feel like he is settled and at rest. So now, when I can't sleep I picture these fountains in my mind and it relaxes my mind. All of the awful thoughts which once engulfed my mind when I thought about losing William are now overshadowed by this special memory of me saying goodbye to him as I watched something so beautiful.

And so what is the point of this post? Well if you have trouble sleeping like me or have moments where awful thoughts fill your mind and you can't think straight, then I would urge you to try and find your Happy Place.  It may take you a while to figure out what it is, you may even need to leave the country to find it, but rest assured you will.