The Story Behind The Name

Such is an ambiguous title, that I am hoping you will bear with me on this one. It is a post that I hope will have some truthfulness for many people.

Today was a day where I reflected on what has happened to me personally. My story. In actual fact, I was deep in thoughtfulness about the medical side of me. You see, I have almost double booked myself for the morning and I was thinking for the one appointment that I perhaps will need to cancel, and sadly thus, on paper, I am not a very good (attendance wise) patient. But all they have are paper notes about me. This is not a reflection of who I am, of my story and of my journey. It is merely a name, with a list of current ailments.

So what is the story behind the name? Does anyone dare to ask? Not me per se but anyone.

I have never divulged my real name on here or personified this blog in any way; mainly due to the fact that I like the ambiguity.

So for the sake of this story, let's create a pseudonym for the purpose of this: Cara McDermott.

The appropriate boxes need to be completed - relationship status, children, work.

I was watching a programme (okay, guilty pleasure trashy TV) the other day and this couple were discussing their current relationship status. They had been married, maybe coming up to a year and the assumption was children immediately followed marriage and anything less than the assumption was considered 'not normal'.

Sadly, I am and was normal. A almost stereotypical catholic girl (I say almost as if I was a stereotypical catholic girl there would have been no sex before wedlock!) where first comes marriage, then comes a baby (in a golden carriage - you wanted to sing it really!!!).

But that is where my "normal" story ends as I am categorised by the number of living children I have and not by the number of children who I hold in my heart. So for the medical professional who is making the assumption that I am a married, stay at home mum to 1 child, is very far from the truth. This is your black and white version. This is what they have chosen to see and assume about me.

The grey version will probably look a bit like this:

Married at 23, First Baby at 24, Second Baby at 25, Third Baby at 27.

It may even included their deaths.

But that still isn't the story though is it? How many "grey" versions can we make? The list would be endless, wouldn't it?

However, because of the way society dictates that the world we live in needs to be lived in the black and white version; it means we rarely know the story behind the [black and white] name.

The abridged, coloured, version would start like this: She met her soul mate at the young age of 16, married him when she was 24 years old and just a month shy of her 25th birthday, they had a beautiful baby boy. He had a very poorly heart but got medically stable before his unexpected death, aged just 4 1/2 months old. Her world fell to pieces with a light being she found out she was pregnant 6 weeks after his death. But when things started to look up, she and her husband once again suffered the single most devastating thing to happen to any parent, again. They lost another, very much loved son with a poorly heart. Her universe fell to pieces and it took a long time to begin to piece back together and they never will all go back together. Finally, they were blessed with a baby girl, who is hopefully here to stay.

So when you reach out to someone and make new friends or acquaintances... after you ask their name; why not make your next question, so what's the story behind your name? Watch their windows to their soul light up at the fact, you really do want to know their story.

I'm Alive...... Just!

So I am here, I am still surviving. Almost another month since I last wrote.

Feeling more isolated as time goes on. I sit and reflect at how easy friendships were 3 months ago. Is the decline in my friendships directly correlated to the decline in my health? Who knows.

I did reach out to an old friend last night and today. I impromptu sent a friend request on Facebook and it was accepted. I send a short but brief message saying how I couldn't remember why we stopped talking. That was a lie. I didn't stop talking but there came a point where I was doing all the first contact and getting no response and sometimes, you just think, f**k it! Not had a reply yet but I'll cut some slack considering they look like they are on holiday.

Coming up to Christmas and thoughts run to what I should have and what I don't have. Why is it so fricking hard? Nothing feels right and nothing feels wrong. I do know the babies have a new friend. When we visited at the weekend, I told my husband to put back what I thought was a toy blow off one of the gardens. Only it wasn't. It was a piece of paper with the words 'Plot d188'. 8 beds down from our sons. No one lived there. I popped in on Wednesday and they had marked out the plot. Yesterday or today, another family put their child to sleep forever. We've had a good run of no more friends but this one is going to be raw when we visit.

I feel tuned in again to the spiritualist side. I feel I can hear them and feel them. I can sense their laughter and cheekiness. I think they are playing in the night as its a warm feeling during the day and often 'memories' pop in but they are not memories associated with earth. I like it. It's comforting. They know I am struggling.

I have increased my anti-depressants so things are getting more bearable again. Obviously time to go up. Just wish I would have tablets that make me lose weight, not put it on.

A heart mummy friend wrote on her blog recently about how they were treated after their 20 week scan diagnosis of HLHS. How the doctor stated that he assumed they would terminate the pregnancy. I feel the same passionate voice in me, shouting that I wasn't doing that with my eldest. But then the devil on my shoulder whispers 'But you did with your youngest boy'. When will that guilt ever ease? I can arguably justify why we decided to terminate that pregnancy. Listing the numerous health complaints that he would have had, compared to his brother. But the weakling in me is arguing that I didn't give him a chance. And then the pessimist argues, but you believe he died in utero anyway.

Can you see how I tie myself up in knots?

It's ridiculous!

It's been 5 months...

I thought I would peter out the blog, because I felt I didn't need it.

It's been 5 months and I feel like I have nowhere to release thoughts or feelings and I miss the blog.

I don't write things for attention - very far from it! - I write it because it helps me work through everything.

I thought I was coping.

I thought I could do this.

Perhaps, I just can't.

So in 5 months, I've had an amazing holiday and a massive blow to my health. I feel increasingly alone yet am surrounded by people I know who would listen if I would just talk.

But I can't. I can't verbally express everything I am feeling, every thought I have. Why? Just because, I don't want sympathy. I just want someone to hug me and tell me it will be okay. I know it won't be but knowing that means alot.

This week, one of my best friends, she is simply wonderful; sent me a card. She only lives a 5min car journey away but she has no idea how much I needed that. I know she reads this from time to time and I don't always say it but I love you hunny. You quite possibly saved me, from me.

I found the eldest's anniversary so very hard this year. Princess started Pre-School in September; such a huge milestone that I should have done twice over already. I cried the first day I left her. It was also the first year she was not with us on his anniversary.

Don't get me wrong, it was truly nice to be able to let it all out without upsetting her. We always try and make things regarding her brothers happy. It is our sadness, not hers. We cry in private, away from her. She is just this happy soul, who does not question why she has two brothers in Heaven, why she has two guardian angels. She is just happy to have two brothers. But we missed her. We missed her happy soul distracting us from the pain. My husband had asked me not to do the clock watching in front of him. So I did it privately. My heart broke again at 9.30am. And shattered into tiny pieces again at 10.50am. I would give anything to hold him again, dead or alive. Because then I know this isn't a bad dream and it really did happen. I looked at 'the' pictures again. As morbid and awful as it sounds, the ones where he was gone. No one looks at them except for us. Every now and then I just have to look at them, just to know it was real.

5 years old. He would have been 5 years old. 5 is just SOOOOOO much older than 4. They are no longer babies at 5, but growing into proper boys. I can see him. I can see that he is big and he is happy but again that breaks my heart. They haven't visited in a long time. Since the last time I blogged about their visit. I don't know why and I don't question it. I still feel them. I know there has been alot going on and perhaps I haven't opened as much. I miss them. Terribly.

I'm struggling health wise and an appointment today has left me despairing of life. The medical professional has made me feel like a fraud and I have pushed myself to all limits this afternoon because he made me feel that way. I just want to be believed. I just want the right help. I am fed up of being judged. He has no idea what I have been through. My husband wants me to write and complain. I just don't have the energy. I need him to come with me in the future. I've made an appointment to see my amazing GP. A double appointment. She's the only one who understands. Though because she is amazing, she is fully booked for two weeks. But that's okay. Gives me time to sort myself out.

It's times like now, late at night, the horrible thoughts creep in. About not wanting to be here any more. My whole life exists in this house. My husband. My daughter. My cat. My dog. My memories of my boys. I know I am being reclusive, I know I am brushing it off when people ask I am okay.

A friend asked me yesterday if I was okay. It came out without thinking 'yeah, I'm okay'. Her reply? 'You're not though are you?'. 'No I said, but I have to be'. She then walked away. Why ask? Why let me actually say those words and walk away.

I feel so alone. I sit here and think of everyone's life going on outside the door and how I just cannot sum up the energy to leave the house to be apart of the world. I am a robot. I am purely going through the daily motions of every day life because I have to.

I just have to get on with life, don't I? There isn't an option to curl up and die.

All I can do is sit here, in private, and cry, and then show the world that brave face.

I'm going on holiday :-)

As the title says really.

But this is our first proper family holiday with no one else.

And I cannot wait.

When we lost youngest boy, everyone said 'you need a break' 'go on holiday' and after a while we thought well nothing else is working, maybe we should try?! 

So we booked a week's holiday to Egypt.

Worst mistake we made. Not least because of the destination. I've nothing against people who go to Egypt at all. The weather was lovely, the food was okay. The hotel was okay. Just the minute you stepped outside of the hotel you were lynched by people wanting to sell you things and that just ruined it for us.

It was the longest week of my life as I just wanted to be at home, seeing my babies every day. It took all my strength to get on the plane in the first place. I didn't want to let my husband down. 

I cried everyday I was out there.

When we were on the flight home, my husband said to me that he didn't want to get on the plane either and had I not, he would have been happy but he did it for me.

So whilst some people can be full of useful advice when you lose a child, or children, I think you should listen to your heart as it wasn't the right time for us. 

Then we fell pregnant with princess.

2011 we had her and we went to Ireland for my cousin's wedding.

2012 we went to Cyprus with my sister, brother in law and niece. 

2013 we had another holiday to Ireland for a wedding.

So 2014 is here and we are off to Disney in Florida. And I cannot wait!

The Build Up

I've always said the build up is worse than the day itself and as time goes on, it gets harder and harder.

I'm often asked why I get so upset and emotional and I can't really describe it. 

Is it because I didn't have a single chance to celebrate an earth bound birthday with him? Is it because before he was born, life was 'easy'. We often reflect, as a couple, how naive we look in pictures before he was born, well, before he died really. You could see the utter contentment in our faces. I feel like I have aged a million years since he died. I feel old before my time. His death aged me so much. I no longer have rose tinted glasses on how wonderful the world is. Nothing is colourful anymore, it's either black or white.

Life is for living, no need to worry about the future because at the end of the day, you don't know what tomorrow will bring.

I never thought I would be a baby loss mama.

The build up is a culmination of remembering how I felt before he was born, remembering the joy of becoming a first time mummy and knowing I am, and forever will be, a baby loss mama.

I kept seeing this 'Timehop' app on Facebook and I installed it and for some reason I got confused and when looking for a particular post. I found my way back to when he was born. Looking at the pictures and the posts and comments from friends and family.

I would give absolutely anything to be back there, beside his bed, in intensive care, willing him to get better.

Because he was still here. Earth bound.

I am willing to go through the pain, agony, stress of watching my child be seriously ill in intensive care in order to have him here with me. 

Nothing compares to the pain of losing him.

Is the build up worse this year compared to last year because there is one more year without him? What will I be like when it's his 10th birthday?

I just cannot describe the emptiness, the loneliness, the pain, the utter heart ache of jot being able to see, feel, hear, smell him. 

There are no words.

My friend said to me today: "you put on a brave face all of the time" because I don't want to be a burden, I don't want sympathy, I don't want pity.

I just want my boys.

And I can't have them so all I want to do is let it all out in the form of tears, anger and frustration. I can't concentrate on much, as too many thoughts stray to the thoughts of this time 5 years ago. To 5 years of no earthbound birthdays.

The days Inbetween are okay and bearable but occasions like this, I just can't stop the memories sneaking out my eyes, and down my cheeks.

Popping by to say 'Hi'!

Every time I have thought about writing a post, I never know where to begin. I can't seem to make head nor tail of my thoughts at the moment and am struggling more with no sense of clarity.

I was chatting to a friend, a bereaved daddy, around the time of the Hillsborough Anniversary, about how I feel a sense of weight on my shoulders and could feel the boys around me quite a lot. There never felt a true reason why. There were a lot of possibilities.

I'm still 'active' in the heart community and a dear little boy who I had the pleasure of meeting in November, finally got his heart transplant that he had been waiting approx. 206 days for. It's devastating that another family have had to lose their child, and selflessly give life to other people. This little boy has struggled post transplant and I was fearful he wouldn't make it. It's tough when it's not another name on the screen but someone I have met and followed. He is starting to respond, and like Charlie, doing everything in his own way and at his own pace.

The boys gained a new friend in Heaven this last week. A friend lost their 13 month old grand-daughter - she went to bed one night, and never woke again.

It's made me even more paranoid about Princess. I already get fretful if I think too much about cancer, meningitis and now simple infections too?

Ending on a positive note, I've had a bit of a makeover! LOL!

Mothers Day

Last night, I was thinking about Mothers Day - which is this Sunday here in the UK.

Mother's Day is always a big deal to me because I never got to have one with my boys earthbound.

But I did. It just wasn't as celebrated.

They say a woman becomes a mummy when she falls pregnant but for a man, it is when the baby is born.

So Mother's Day 2009, I had with my eldest in my tummy. I remember getting a small bunch of flowers and a card from the bump.

But what I want to pose to the world is what if that is the only Mothers Day a woman gets, is when she is pregnant. No one likes to consider a negative outcome for a pregnancy but there is staggering amount of babies who are born sleeping but have been alive on a Mothers Day.

So I am really trying to say is make this Mother's Day truly special and count especially if you are pregnant because just what if, what if the worst was to happen and that was yours or hers only Mother's Day? 

I can tell you from experience that it will haunt her forever more when this special occasion comes around every year.

So to my friends with children, earth and heaven bound; my pregnant friends, I wish you a truly magical Mothers Day.

❤️

Life takes us in funny circles

I've been meaning to update for some time now but never found what I wanted to say. I feel like I have made some progress in my grief and facing my anxieties. I attended a charity open day at the weekend and it was nerve wrecking but the minute I walked in, the person I had ultimately gone to see, found me and we enveloped each other in hugs.

She is the only other person in the UK who knows what it feels like to have lost two children to the same heart defect as I have lost my boys. We share the same pain. We laughed, we cried. Life took us in a circle that it meant we had to wait 4 years to meet each other but it was very much worth it.

We made some new friends, met some old but new friends and had a fab day. Princess loved the creche which confirms she will love Pre-School, it was just hubby and I felt like we were missing our left leg! We worried more about her than she noticed we were gone.

Recently, I have been chatting to an old friend. We used to be so very close and as it does, life got in the way and we didn't talk as much for a while but it's a sign of a good friendship when you can pick up like you've never not spoken for a while.

Dare I say, I feel confident right now in my being. I wish I was skinnier but I am trying, and I am hoping to be sponsored for it. But I feel like I am in control again. I have my routines and my comforts and they are making things be good again.

Mother's Day is here in the UK this weekend coming. I never got Mother's Day with the boys, and this is my 3rd one with Princess. It is also the cat's 4th Birthday. We haven't decided what to do. In my old age, it doesn't seem to matter about 'doing' something, because making memories, love and laughter are all that matter.

It is also a friend's little boy's birthday too, it will be his first birthday in Heaven, aged 5 years old. I've not met the family in person, but talk to dad alot online. His little boy has affected me so much because of the connection to my eldest. The moment when I realised there was just 6 weeks between them in age, yet I got 4.5 months with my little boy, and he got 4 years with his little boy.

I am a big believer in fate and it goes back to the friendship post I did in regards to people coming into your life for a reason, a season or a lifetime.

Right now, I just feel in control, for a change.

Dreams

I always believe that there are reasons behind what we dream. Be it what the heart desires or yearns or hopes for. 

A couple nights ago, I was having one of my strange dreams where things don't make sense at all - sometimes paramount to what my life feels like. In the middle of the dream I got a call on my mobile.

It was from an old friend, who now lives in Australia. You see we had a misunderstanding back last year and haven't spoken since and she rang to say she had been reading this blog and just wanted to get back in touch.

We both talked over each other, apologising for the misunderstanding and then chatted away like nothing had happened.

Is it a hope? A sign for the future? I don't know at all but I know it felt good to hear her voice.

Being stubborn I don't know if I could or should make the first move or do I just see if fate means we are destined to be friends again. Then again, how do I know that she would want to talk to me too?

Dear Birthday Boy...

Today is your 4th birthday, wow, you would be such a big boy now but you will always be my baby, my littlest boy.

I know you are going to have the best birthday ever with your big brother and all of your angel friends. I know your granny will look after you and spoil you rotten too. 

Thank you and your brother for all the beautiful rainbows especially the double ones. The vibrant one you sent me yesterday was amazing. 

How I wish I could turn back time.. I wish I could have held you, kissed you, but you did that with your daddy. I know he still sees you as that little baby in the palm of his hand and he will always treasure that bond you both have.

I know he wishes that he could see you now as you are in Heaven with your brother, like mummy does when you both visit. But that's our special bond. I always want more baby, always will, but each snippet I treasure forever until we are together again.

Have a great day my baby, catch our balloon, your sister chose it because her favourite colour is purple. Hope you like your cakes too! I bet you were laughing at her making them for you! 

I'll look for you in the night sky and you know you are always in my thoughts, my heart, and my soul.

I love you.

Mummy xxxxxx

Birthday Eve

Today is the eve of my youngest's 4th birthday.

Surprisingly, I am okay. I haven't broken down, I haven't emotionally ate.

I am teary thinking of what should have been, what could have been, should I have done what I did? I don't think I will ever be at peace with the decision, not until I see him.

Due to the car accident, we won't be able to go to the Zoo as we usually do. I mean, we could. But it would cost us more than actually getting into the Zoo and be so complicated. But I am okay about it. It's not my fault, well techincally the car accident was my fault, but I know what I mean.

We've made cakes, we have balloons - one to send to Heaven, and some to decorate the headstone. We have a banner, badge and cards. Seem so little but so much.

My littlest boy will be 4 tomorrow, 4 years of wishing I was brave enough to hold him and kiss him and tell him how loved he is. But I whisper these to the summer butterflies, the twinkling stars at night, the bright rainbows that seem to be everywhere at the moment.

For the first time, I truly am okay.

An Update

Yesterday I was going to write a blog post about pregnancy, being broody, being desperate for another baby but knowing it wouldn't be possible. I have friends and family around me having babies or announcing pregnancies and I am utterly over the moon about it for them. I am enjoying revelling in their pregnancies and newborns. I was, still am, wishing it was me.

However, yesterday I was in a car accident. I am shaken to the core. I can't believe I have walked away without physical injuries. My car took the brunt of it and my first instinct was to prevent another car hitting the side where princess was sitting which meant the cat had to substain injury to protect her.

I can feel old friends reappearing in the name of anxiety, panic attacks, insomnia, fear etc and yes, I should celebrate that I can recognise them but I also feel that I'm losing control. I know it was only yesterday but again I'm looking on the outside in.

I have some amazing friends who it feels have thought nothing more of being there for me. I love you all, you are the best. A girl can never have too many friends! 

<3

Normal or Not?

I logged on to write this post which I admit I've been thinking a while about - and in my featured blog sections is the blog about the Palmer Family. Kimberley's latest post is called 'Parenting Without Fear'.

She lightly touches upon what I am going to say.

My irrational thoughts regarding parenting. You've read my blog (well, I hope so by now!) so you know the background, but sometimes I get all consumed with fear for Princess. What if she gets cancer? What if she gets run over? What if she gets murdered? What if she gets a brain tumour? And general thoughts along those lines.

You may argue that each one of those sad events happen to only a small percentage of the population - HOWEVER - need I remind you of the statistics when it comes to having a child with Congenital Heart Defects? Just 1 in 100 people. And I had 2 babies with heart defects. I always said when I was pregnant that I would rather be given the smaller statistic as that feels more liveable than the supposed 'safe' statistic. 10% chance Princess had of having a heart defect. 1-2% of any one person having a child with a CHD.

So whilst on the surface I know my sadistic thoughts perhaps are the thoughts of a mad person, and are generally compounded by every day news of another murder, stabbing, abduction, news of children dying etc - it is very real to me.

I was reading a conversation between two friends on Facebook about how when they are not with their children and have a 'night off' they spend the time checking up on the children or talking about them. One said they had only left their children a handful of times. Husband and I have never both left our daughter with anyone else. I just about left her for 3 nights (2 separate occasions in case you are a newbie) and that was with my husband. He has never left us. I feel like someone has their hands around my throat when I think of her going off to pre-school and then big school.

We have half talked about home schooling her but the fear is there of being told I can't cut the apron strings. It's not that, I just can't begin to imagine being without her. She will love it. I know that much.

My little girl is growing up and soon won't be as dependent on me. Or is it that I am dependent on her?

Insecurities and Anxieties

Both have been building up for a while.

Anxiety - I am used to dealing with, its almost as routine as changing my underwear daily. Anxiety about spaces, time, people, events. The nail on the head was this weekend. On the mat dropped my DLA renewal pack - yes I am one of those who qualify for the benefit though before you judge me, I have a mental illness and a social anxiety complex that requires medication to control 75% of my feelings. I am more at risk without my medication than I am with it. Both are disabilities. Both I live with, daily. Therefore I get a small amount of allowance weekly for it.

Anyhoos.... its another reminder of the fragility of my mental state. Then coupled with visiting town on what seemed the busiest day of the year. I was fine I tell you, until those lift doors opened and it was like 'vooosh' like a vacuum, and I could feel myself getting tense, my breathing becomes rapid. I am trying to move through people with a sleeping princess in her buggy whilst gripping my husband's hand.

For one instant, I lose him. Though I didn't lose him. He had to let go as we couldn't walk the way we were, it felt like forever until he got to me, in reality it was seconds.

I'm almost at the doors to the outside world. And there we are. Fresh air. I can breathe.

That, in a nutshell was 10 mins of my life.

We saw the boys yesterday and as always its a happy-as-can-be visit. Talking to them, then it hits us both, in a month, we will have a 4 year old boy in the form of our youngest. Has it really been 4 years? I don't feel old enough in some respects, but I feel ancient in others.

Then its moving on to thinking 'hang on, eldest is going to be 5' - 5 sounds so much older than 4! It was 5 years ago yesterday we had our first 20 week scan with our eldest. I say first, it was with the sonographer, who said to us, we can't see everything to do with baby, come back tomorrow. In our happy little bubble, we didn't think anything less after all we had seen our perfect little boy on the screen and we were going to see him the next day too.

Then this day 5 years ago, we were told our perfect little boy had an imperfection on his tiny little heart. But it could be fixed.

How naive were we then?! And all the time before that too!

Then the familiar insecurities set in; why isn't the person I used to speak to every day, no longer talking to me. I initiate the conversation, it goes on for a little bit and then nothing. Rationally, I know why. She is busy, she's tired, she said she thought I was busy - I reassured her, I always have time for her. But still, she's withdrawn, is it me? What have I done? Who do I listen to, irrational or rational?

And yes, those are the voices in my head. I often speak to myself, because I feel no one listens or understands.