Christmas 2013

Another year....

5 Christmases without my eldest

4 Christmases without my youngest boy

3 Christmases with my princess

2 Fur Baby's 

1 Heart Still Broken

I was doing fine up until about 2.30pm today.

I got a text from my best friend saying she had been to the boys' garden and the wind and the rain from the day previous had made everything be strewn across the cemetery. She said she had tidied up everything but didn't know if she missed anything. That was it, my stomach was doing a rollercoaster.

We were on our way to church for the children's Christmas service but princess had fallen asleep and as she's poorly we diverted to the cemetery. Their garden was okay, a couple things out of place but the relief was immense.

We also saw that their friend, two beds down, had left them a teddy. We had given all their friends a Christmas card last year and also this year so it was touching for a kind gesture to be returned.

We then went to our local church to say a few prayers and light candles for the boys and their friends.

The Parish newsletter this week was poignant. Father Michael asked:

"What is the most important or valuable gift that could be given or received at Christmas?"

My answer. My boys back here with me and if I couldn't have that for me, then I wish for one of my angel mummies or daddies to have their child back.

Father Michael went on to say the reason he asked was because of a conversation he had with a parent about the "upmost importance .. that the children would be found worthy to be in the presence of God in Heaven"

Now as I've mentioned before my faith had wavered since I lost my boys but I also found the above saying to be thought evoking. 

I believe in God.

I believe in Heaven.

I believe in Spiritualism.

I don't believe that my life thus so far was apart of God's plan - because then he would be a b@$tard as no one deserves to feel this pain.

But I believe in God.

But should I?

Father Michael goes on to explain that God's gift was of his son's birth. So why giveth, to taketh away? We all know Jesus died and if we were to believe that God has a plan for us all then was his own son's death was in his plan? 

Father Michael says that there is no need to be afraid as God is with us, there is no need to be held captive by the mistakes of the past and no reason to feel so alone. 

But I still feel all 3.

I long ago spoke of the fact I was encouraged to speak to Father Michael about my emotions and feelings - and I am a believer in signs so is this yet another sign from my church to explore those to have some faith restored? 

Another thing to ponder about at Christmas time.

So now as I listen to Michael Buble and reflect on my Christmas Angels and their friends.

Thanks for reading for the last year x

Topsy Turvey

That's how my life has felt like since I last posted - hopefully I will make sense through this.

Last night I was sat thinking about how much has changed in the last year. Me, personally. Friendships, Life, Death, everything.

I feel that the last year I have 'matured' even further, and it is something I have seen in a few fellow bereaved mummas. Darling Carly Marie summed it up beautifully in her post in Still Standing Magazine - here is the link: http://stillstandingmag.com/2013/12/voices-differences/

I feel I have evolved a lot more now. I have found my footing in this world as a mother to three children, two of whom, live in Heaven. I have accepted who I am as a person now and am able to rationalise thoughts and feelings on this, often, lonely path. I know I have changed. But I have had to change, my life has dictated that I had to find a new normal for me.

Sadly, this meant some things in life and friendships have to change. I prioritise my life now, and love nothing more than an afternoon walking in the park with my family. It's free and so, so simple. Yet soulfully gratuitous. I am grateful for the fact I can do this. Yes, apart of me will always wish that I am watching 3 small people bundle around in muddy puddles, but I physically only see 1. I don't need to repeat that I know they are with us. I feel it in my heart. I am grateful for the small, childish things my daughter does because I never had her brothers do it before her.

Christmas is always a period of reflection for me. I hate New Years. I hate the fact its so commercial when the significance gets lost in translation. It's not about getting as drunk as possible and singing songs at midnight; ensuring your true love is your first kiss of the new year. I spend this period reflective of the path I have walked, not only in 2013 but all the years since 2008.

Why 2008? I look at a poignant picture of myself, stood in front of our Christmas Tree, 16 weeks pregnant, so blissfully happy and content. I look so young, so innocence, so carefree.

Look at me now. I feel like I have travelled a huge expanse of space, I have learnt so much about myself and those I choose to have around me.

I have had to say goodbye to more friends this year. Some, its been a mutual thing, where time and circumstance mean we no longer talk or have anything in common. I know one day, we will speak again. Others, chose to walk away. Some, I have chosen to walk away from.

My life has long been full of negativity and I don't like to have that in my life any more. More neutral or positives please.

I was told after my last post that one friendship that was lost I would regret. But whilst I did the final cutting of strings, the other half of the friendship had already made their decision. Do I regret it? I regret how the friendship came to an end. I would say 99% of some friendships can be brought back to life.

There has also been a flurry of new lives. Lots of new baby cousins for me to adore. When I lost the boys, the very last thing I wanted to do was hold a baby that wasn't mine. Now I just want to snuggle these babies up as there is nothing better than baby snuggles. Just a shame there is the Irish Sea between us to prevent that happening.

So you can see why I labelled this post Topsy Turvey. I have a lot of ups and a lot of downs. But I do bid you all a very Merry Christmas and a gentle one to all my fellow bereaved parents.

Bear with me....

This is going to be a long one....

Since the boys visited me in that dream, I began suffering insomnia. No hardship really as it meant I could kick start my new business off the ground and I've been talking to a couple of lovely ladies who are also insomniacs.

If you have been reading my rambling a for some time, you know I am a spiritual person, who desperately wants to connect with my boys. I sent the post with the details of my dream to a friend who is a practised medium for some insight.

I had already made assumptions about what the dream could have meant and she confirmed it could be my interpretation but above all, I will be with my boys again.

She did have a Facebook business page which was so popular but she couldn't keep up with demand so has closed it down. Whilst it was open, she did a little competition to win a free tarot reading.

I only blooming won it! 

The tarot read was quick self explanatory and very accurate. She told me if I believed in myself and got guidance I could develop my spiritual side as it is there, just I am afraid to open to it. However, it was the subsequent reading that I am bursting with happiness about.

She connected with the boys! 

No one has ever done that before.

I will not go into specifics on here, but she told me things no one, not even my husband knew. As all good mediums should do, they should bring you things for validation, this are different to each person but again are things she couldn't possibly have known. 

Through her reading, I visualised my boys. Exactly as they came through to her. I can only explain it as watching a TV programme. I could see it as clear as if I was seeing it myself rather than reading it second hand.

I have been on cloud 9 since.

A friend messaged me saying she had a reading by her and wanted to know how my tarot went. I explained to her how amazing and accurate I thought she was. She agreed. We swapped readings and again, through her reading I could see the components of it (I won't be specific as it's not my place to divulge). I relayed it to my friend and it brought her comfort I hope.

I have found this to be so true of late:

People come into your life for a reason, a season or a lifetime.

When you figure out which one it is,

you will know what to do for each person.

When someone is in your life for a REASON,

it is usually to meet a need you have expressed.

They have come to assist you through a difficulty;

to provide you with guidance and support;

to aid you physically, emotionally or spiritually.

They may seem like a godsend, and they are.

They are there for the reason you need them to be.

Then, without any wrongdoing on your part or at an inconvenient time,

this person will say or do something to bring the relationship to an end.

Sometimes they die. Sometimes they walk away.

Sometimes they act up and force you to take a stand.

What we must realize is that our need has been met, our desire fulfilled; their work is done.

The prayer you sent up has been answered and now it is time to move on.

Some people come into your life for a SEASON,

because your turn has come to share, grow or learn.

They bring you an experience of peace or make you laugh.

They may teach you something you have never done.

They usually give you an unbelievable amount of joy.

Believe it. It is real. But only for a season.

LIFETIME relationships teach you lifetime lessons;

things you must build upon in order to have a solid emotional foundation.

Your job is to accept the lesson, love the person,

and put what you have learned to use in all other relationships and areas of your life.

It is said that love is blind but friendship is clairvoyant.

— Unknown

I started a new business venture, well it started as a way of raising awareness for my my charity work but has since grown. But through it I have made some new friends, one in particular is now going to be a life long friend.

We clicked from the moment we started talking and I don't think we have stopped since. She said we were twins, cryogenically separately and born at different times, to different parents, but twins nonetheless. She makes me laugh, she keeps my spirits up and is there when I feel down too. We've known each other probably no more than 2 weeks but feels like a lifetime!

Then at the same time, I have people who I thought I would be friends for life with, but have decided that door needs closing as we haven't spoken in a long time and I felt and feel that someone needed to make the first move. So I did. I'll be doing another 'clear out' after Christmas but for now, all is good in the world of friendship! 

I've started putting my ramblings 'out there' a bit more, suggesting to bereaved parents they can read my ramblings if they feel it may help. I never wanted this to be a 'LOOK AT ME' kind of blog but you never know whether the 6 degrees of separation may find that someone who is in need of reading that out of darkness, light can come. So I am going to try to 'share' more, of course anonymously, so feel free to do the same, if anyone is still reading this! 

<3

Dreaming of You

I need to write this down because I never want to forget. I can't get motivated as it's still in my head.

I dreamt of you both last night.

I was in a queue to process adoption papers and was extremely nervous. There were two women in front of me. The one being dealt with, was granted fast track. I gulped down some beer (I don't drink beer!), to settle the nerves.

The lady in front of me, I know from my real Facebook friends, she lost her daughter Megan before my eldest died. She's asked if she had any alcohol today and she said 'Yes - to settle my nerves'. She was told off for it.

I quick turn to the person who is with me, I can't tell if they are male or female, getting hysterical, they pass me some chewing gum and reassure me, it was only a mouthful.

The lady in front of me is denied because she drank alcohol.

I am panicking now.

My turn.

The lady checks over my paperwork, all is in order.

She looks at me, takes one of those wooden stick things the doctor uses to look in your mouth. I apologise for the gum, she said it's okay.

She looks back at the paperwork - shit what is she going to say!!!!

"Right, that is all good, everything is in order. I have put you down as urgent and your children will be with you within the week"

OMFG!!!

I run to my husband and tell him we did it - we are getting our boys back!!!!

We go to a room, where it has a one way window, we can see them, albeit very hazy and blurry.

We go home to prepare. How will we fit 3 children into Princess' room? We will have to get bunk beds, I set about trying to get everything perfect.

Husband worries that the boys won't know us as mummy and daddy and I tell him not to be so silly, we are their mummy and daddy.

We get the call.

They are ready.

OMG!

It's real.

We are on a viewing platform, we can see all the children, lined up, with their respective guardian, waiting to go off to their families. There are our boys. I burst into tears.

I tell my husband to go get them.

I watch as he goes down, he is stood a bit in front of them and their guardian tells them to go to him, it's their daddy and they run into his arms.

I still don't see their faces yet.

I can hear him coming with them.

I am nervous.

Oh my gosh, they are so beautiful. Eldest looks a lot like his daddy when he was little, I can't believe how big he has got. My youngest boy, dare I say, looks more like my estranged brother from when he was little. Where Eldest is fair, bordering on blond, his brother, is darker, more like me. A splattering of light freckles across his nose. He has his daddy's hair, as it is now. Only manageable when it's cut neat. Only his hair isn't neat enough as I would have had it. He looks like a proper little boy.

They are so beautiful.

They are mine.

"Shall we call Nanna?" I say... we try to call her but she doesn't answer.

Never mind, let's play and get to know each other.

*********************************************************************

My heart is racing recalling my dream, I can't believe it, I just want to go back to sleep and dream some more but I know the moment has gone. Thank you babies for coming to mummy!

Lately....

Finding the right words to say can often be my biggest challenge... often the simplest terms of 'I am having a crap time of it' should be enough but when is it too much? I struggle reaching out as I am afraid that those that I do reach out to, are silently rolling their eyes at me and saying in their heads - 'Again?'. I don't ever want to be someone's burden, for people to think they have to listen to me. Which is why I try and express myself on here alot. I do remain anonymous, but I know I have a few friends that read this - often they will message me or comment and I am honestly touched. I do know there are some who read this blog and don't comment or say anything.

There is a reason for my anonymity, simply because I do find it difficult to reach out so this is my way of saying - I am not happy. Be it with life, friends, family or randomness.

Life has taken me in circles, and whilst I may not roll in the millions or live the life of luxury, I am happy in my little world. If I want to spoil my daughter because leaving her at home with daddy for two days whilst I went away for a weekend in London, I shouldn't have to be made to feel like I am raising a brat. She is two years old. She doesn't realise that I am spoiling her. I am easing my own concious but also aware of how much enjoyment she will have from my gifts. And those that do voice said opinion should take a long hard look in the mirror.

I feel older than my 30 years of life, and often have to think, I was just shy of 26 when I had my eldest. I was left vulnerable and exposed. Social Networking was not as much part of daily life as it is today so I often felt isolated in the world of hospitals, medical terminology, and heart problems. When I look back now, I see I tried to make life normal because I had no one to ask - well, what should I be doing. Now, I am quite prominent (probably too much so) on social networking and I hope I support a lot of families both pre-natal, antenatal, hospitals and general life. Because I was there when I had no one.

4 years down the line, I have more friends that understand now than they did 4 years ago. These friendships are offering me opportunities I never thought would be possible. I wouldn't say 2013 has been a shit year personally, not the greatest, but better than 2012 but I feel as we move into 2014, I will achieve so much in the work I do, do. So many plans are in the pipeline and I am excited and looking forward with happiness rather than trepidation.

2013 so far has seen far too many children die from CHD and each time, a little piece of me breaks off again because I still know that pain. It is cushioned by 4 years of adjustment, tears, strength, despair and loneliness. And in those depths of negativity, I know I can simply put a status on Facebook and get words of encouragement. Not that I do it for that but knowing people care, means a lot. A new friend, someone I have gotten to know since his son had surgery which sadly meant he was unable to carry on living on earth, can so eloquently put into words, the life that is a bereaved parent. Men don't typically show emotion or that they are struggling and he invariably doesn't post a lot about it but he did post an insightful blog post today, marking 100 days since his boy got his wings. He hits every single nail on the head and I pondered to myself, could I have done that at 100 days after losing my eldest? I don't think so. He is inspiring for me because of his frankness and honesty and his beautiful boy, will hold a place in my heart forever.

So I guess you can say I am at a life analysing cross roads at the moment. Not that I will analyse for too long, I have learned to just live with life as it comes as trying to think too far ahead is like trying to find the pot of gold at the end of the rainbow.

x

Life

I've actually had this post written in my head for some time but not found the words to put it down on paper (or rather online!).

I've not been too good personally for a while, those who know me personally know I struggle leading up to the 1st October and whilst the knot in my stomach and weight on my shoulders are perpetually gone; I still don't feel right. Now I know I will never be 100%, I am not as naive to expect the world to go back to how it was, before I lost my babies. But I know when I am not right. No significant illness, rather a mismatch of symptoms. The point of this is I silently, sought help. Which is a big thing for me as I don't often admit I am struggling. I'm no way near being fixed but baby steps are being taken.

However, I have become increasingly aware that seeing things on a daily basis will and would not help. On 1st October, a heart baby, who's family I have been supporting for the last 4 months, died. They knew she was going to and suggested those who wanted to say goodbye, do so ASAP. I was devastated for them but said I couldn't face visiting the same hospital I was in 4 years prior, I can and could feel my knees going from keeping me upright. I didn't expect a reply and didn't get one.

She peacefully passed away on his anniversary but what I hadn't expected since was pictures on Facebook of this tiny little girl's last moments, nor was I expecting to see pictures of her in the mortuary. I have my own memories which are far too vivid for my liking and to see another child in the space where my son was, on a social networking site, broke me into a thousand pieces. The mum had put that she didn't care who it upset as she felt it helped her, but I wonder how someone can feel that that would be okay. Judging by the positive comments, it was accepted by her friends. To me, they are deeply personal photos and I have openly struggled with losing my children so do not need vivid, stark reminders on a place where you have no way of knowing it was going to appear.

I did offer my condolences privately and support if they needed someone to talk to but got no reply. Not even a thank you. 

They have since been asking for financial help towards the child's funeral. Not the funeral per se, but the clothes for the family (as they have specified a dress code), paying for a wake, and then the plot fees and headstone.

I would never have dreamed to ask this publicly (not privately). I've also been made aware from a fellow heart mum that another family have fundraised to pay for their mortgage whilst they are in hospital with their child.

What is this world coming too? Has social networking removed the degree of privacy and what is acceptable and what isn't? I am more than a facebooker than a tweeter but I do not share everything on there. It is a wonderful invention which enables us to keep in touch with everyone and effortless share photos and mark significant events and without it I may not be privileged to have so many wonderful people in my life. That said, am I of a dying breed where some things just should remain private? 

I am acutely aware that what I find unacceptable may be acceptable to others and all of the above is purely my own opinion. 

I just feel perplexed with life. That said I have some truly wonderful friends who without knowing pick me up when I get a text asking if I am okay. The very few who messaged me after the death of the little girl asking me if I was okay for not only being close to the family but for the date it fell on. The friends who say 'fancy meeting up' and going for an autumnly walk with our babies, the friends who make me laugh with our chats about 'OMG what was she wearing?' In a nosy not gossipy nature! 

I so thankful for you wonderful people!! 💋

1st October 2013

Having struggled through most of September, finding the last week or so tougher than normal, I found myself getting to this point again.

Another year, 4 in total, without my boy.

I have no idea at all how I have managed to get through each and every day since he died. I keep being told how strong, inspirational and amazing I am. Although I am flattered, I truly don't feel that way. I feel anything but and especially, I don't feel strong.

I've cried pretty much since Sunday. Tears spilling over as we visited on Sunday, cleaning them up, making them look handsome for today. Sunday marked 4 years since he was checked in the cardiac clinic - the one place where they surely would have found something wrong with him.

I muddled through yesterday, finding heavy eyelids and glancing at the clock to find its 11.30pm. Husband said: "are you staying up til midnight?" - I wasn't intentionally but I might as well. 

Then it came. Midnight. Here I was. 4 years on. I cried. I felt the weight be lifted, the same weight I have been carrying for the last month. I felt the knot in my stomach loosen.

It's been a tough day, up and down, but we have gotten through it. 

Again.

Invariably...

So my Facebook feed was full of pictures of 4 year old's starting school the last week or so and I don't begrudge anyone. I am overjoyed for those friends' children that I am close to and I share in their happiness and proudness.

I just wish it was me.

The hardest part of the path of the bereaved parent is when life goes on. Because it does. There will always be occasions where a bereaved parent will think that their angel should be doing this or that and its a hard pill to swallow if I am truly honest.

I have always said to friends I have made a long the way who lose their child, that the first year is the hardest. Without a doubt. The first day without them, first week, first month, first birthday, first anniversary.... you expect it to be hard because your whole life is now perceived through the eyes of someone who has had to sad goodbye to a child.

What no one tells you is that the subsequent year is the absolute worse. It's as if the first anniversary of their death means 'everyone' can say 'it's done' - not in a malicious way but its almost as if it shouldn't be in the mind's eye. What warms my heart so much is when someone texts me or Facebook's (I'm more of a Facebooker than a Tweeter) to say I am thinking of you/I thought of them today/This reminds me of them. You may think there is such innocence in that but it is rare for someone to say that.

Losing my first two babies was the worse thing ever to happen to me. Without a doubt. But I was 'lucky' enough to warrant the selfishness that meant I had no small person/s to need me to get up every day and tend to them. If I wanted to lie in bed all day, watch rubbish on TV, not eat or eat til I am sick, then I could. For me, I take my hat off to parents who have lost a child but have children still earth bound that need mummy and daddy not to fall apart on a daily basis. Such is an acquaintance, a fellow blogger, Andy - he lost his beautiful, darling little boy to HLHS, a month ago. He is so eloquent and puts his grief into surmisable words, sentences that I can only dream of. Ned has a twin, a surviving twin.

I looked for similarities when Princess was born between her and the boys and they were there until she was about 3 months old. I don't see any now as I don't know what I am looking for, to be honest. But I cannot imagine opening my eyes every day, to see the child I watch die, the child I buried, staring back at me in the form of his twin.

It must take another level of strength that I am not sure I could deal with. As I count down the days, 21 to be exact, to the eldest's anniversary, there is nothing more that I would want to do is to crawl into bed, pull the duvet over my head and to stay there until the 2nd October.

But I can't.

For I have a two year old that needs her mummy and I refuse to fall to pieces in front of her. I want her to know her brothers in fondness and happiness. I want her to know that she is loved for her and not because we lost them. I want her to know that I love them all equally but differently.

I can manage that on a daily basis, 3 years and 49 weeks down the line. I have my wobbles, around the important dates but I keep that to me until she is asleep.

I just cannot imagine having to do that from the first day I lost the eldest. I just can't.

So it begins....

The countdown to the 1st October. Thankfully, we have a busy month to get through which won't leave much time to dwell on it.

And not only is it 'that time of year' again, but my eldest should be off to school tomorrow, with his 'girlfriend'. It's so hard to put into words how I feel but its just inner turmoil as you can't see my breaking heart.

<3

Anti-depressants

About a month or so ago, I decided to come off the medication. I had read numerous things about the side-effects and wondered if I "really" needed them. 

So I tried.

Except I do "really" need them.

I just need the chemical balance to keep me bordering on normal I guess. As the medication got out of my system, I found myself becoming increasingly emotional, anxious, depressive, tired, withdrawn and OCDs creeping back in.

I can feel myself losing the grip on the milestones I had made. For example, I used to never be able to go out to the local town on my own. I could do this comfortably before, I just managed to cope with town-town but we go so infrequently its not an issue.

I have found excuses not to go to the local town lately.

I realised on Sunday afternoon that perhaps actually I wasn't coping. You see, my best friend turns 40 soon and she has planned a girlie weekend in London. I have 'talked' to myself since it was booked so I know I am going away for 2 nights from Husband and Princess (which if you remember I have only gone 1 night away from her and that was March 2012). I was discussing said trip with best friend and writing down the itinerary (another OCD - lists!) and she said Saturday we can do anything, we don't have to stay with everyone (there is a large group of us!) but in that moment I had a panic attack - I don't want to be left alone. I cling to security and she will be my security that weekend. 

So I started the tablets again.

Hopefully, my mood will pick up again soon and I'll be more 'normal' again.

The Weather

I'd like to think that at this current moment in time the weather is reflective of my mood. Sometimes sunny. Sometimes pissing down with rain. Sometimes it's okay. Sometimes it's a bit bleurgh.

I don't really have anything to add to that because basically it's how I feel. I thought I'd eradicated some of the bleurghness by having a good old deleting session on Facebook - it was getting me down being ignored, being invisible, and I'd taken as about much as I can from those I deleted. 

My baby boy will have moved to Heaven 6 weeks tomorrow. I cannot share in your excitement of "so-so has put her school shoes on and is all excited" or "aw my baby is all grown up trying on her school uniform"; because you know what, I should be doing that too! There is only one little princess who's mummy and daddy I will cry with on her first school day because her mummy is one of my best friends and doesn't make me feel worthless!

So the good news for all my readers is the heat wave is supposed to be back next week..... Maybe my mood will improve ;-)

[insert title here]

Hello world of blog readers... and I know people read these as I finally looked at my insights (go me!) anyway.... thanks for reading....

I am feeling a bit bleurgh if I am honest. I can't pinpoint why.

Just bleurgh.

Felt it all week really. My daddy was in hospital last week overnight and I got upset. It wasn't life threatening (though if he carried on moaning I think mammy would have been done for murder! :D) but it hit me how suddenly actually they are getting older. My mammy is generally the one more prone to being ill - though last time she was admitted was when she broke her wrist and hip. It just hit me, that one day they are going to die and whilst the thought of it petrifies me, it also hit me how comforting it would be knowing my boys had someone they knew. Okay, I know the youngest didn't actually 'meet' them but I know what I mean.

I think also it's because Princess's vocabulary is coming along alot now.... she can say their names and when you ask where they live she points to the sky. We are also wondering if they are visiting her and playing with her.

Why?

Well a number of things but at the weekend, she was playing in her room and we were getting ready to go out and called her. She came out of the room, babbling, as you do when you're two, and went to close her door (a new obsession: closing doors). She said 'Oh-no!' went back in, and waved and said 'bye', 'bye', as if she was playing with someone. Husband rather not think it but it brings me comfort that they are playing with her and then I wished they were here to play with her in real life.

Now, I'm crying. God dammit.

It's so hard.

Anyone who thinks this path is easy, needs their heads testing.

I was doing the accounts for the charity and realised I could go back and download everything since our JustGiving page was set up; so I read all the donations from when my eldest died. 

I cried again.

It made me realise that some friendships are worth hanging on to. Even that friend I wrote about a couple weeks ago.

We have been through so much. I loved her message when he died. I loved how she tried to make it to his funeral. A lot of things have been said in the last couple of weeks and I have been left wondering if there is a friendship there but I am trying not to obsess and think things will work out for the best.

So I have been emotional, down trodden and generally bleurgh.... I can say that we started potty training Princess (she started by taking her nappy off to do a poo on the potty) and we had a good first week, bad second week and slowly turning a corner again today. The accidents the last couple days are more when we are not getting to the potty in time but they can be few and far between!

Hoping I snap out of this bleurghness soon!

xxx

Reflections

It's hit me this evening that in 2 months time, I last saw my eldest 4 years ago. How quickly does time go???

There has been a couple of deaths in the heart world that has impacted on me. The first being Ned - a four year old HLHS-er who under went his Fontan. He came back from surgery well and he took a bad turn about a week post-op. he developed septicaemia and in the end, it took his life.

I felt heart broken for this little boy, and his family - whom I never met, just followed online. We were devastated with losing our boy with 4 months of memories but they had 4 years; Ned is also one half of a twin who is heart healthy.

We visited our boys on Sunday gone, as part of our weekly ritual. I said to them to look after Ned and show him around. I went to tell Charlie that Ned is bigger than him when I realised actually they are the same age. 

Another blow to my emotions.

I've been supporting a young mum who only had 15 precious days with her HLHS princess; it makes me feel so good. She's told me I will never know how much I have helped her. I just wish someone took my hand 3 years and 10 months ago. I even shared 2 pictures of Charlie - taken after he died - no one else has ever seen those. But I offered to her because she was unsure of seeing her princess before she was buried today.

I didn't cry at them, just remembered. Think this is apt:

"In life we loved you dearly,

In Death we love you still." 

So I have silently assessed where I am in life and I almost wish I could confidently say I'm proud of where I am now on the long path of grief. I've wholly accepted how I have changed as a person and how losing my children has made me stronger with not accepting bullsh!t.

I have so many good friends in my life because I have built up the walls and they are the ones who have tried and successfully gotten through. I no longer let people in willingly and I know who I can turn to when I need to 'sort myself out'.

Friendships are built through many platforms and thanks to the world of Facebook, it is easier to keep in touch and update people in a mass context. However, just like texts and emails, sometimes things can be misconstrued or come across in the manner they perhaps were not intended. But when should the benefit of doubt be put in place and how long for? How long before it becomes paranoia or personal insecurities? If it is indeed that. 

I try to be a straight down the line kinda gal - I don't always reach out easily to anyone, husband, sister, parents, best friends - but am always there for everyone. Yes I tend to brood on things and psycho-analyse myself and things a lot - does that make me paranoid or insecure?

Okay, I admit, I am insecure - about my weight, my looks, petty and trivial things - but who isn't?

Who's life is that perfect that they always have rainbows and no rain??? 

Without plastic surgery I cannot change my looks... However, I am changing my weight. I hate, loathe, being fat. That said, weigh in this week saw a 4lb loss. And slimmer of the week. Again. I think I am in the zone... Almost!

A positive note in a oddity post.

Another positive is I had the most beautiful cuddles with my gorgeous god daughter this week. She's so precious and dear to me, like my two other god children but fate (or my boys??) brought her family and us together. Her parents don't realise how much I treasure their friendship and having them in my life and will never know how privileged I feel for being a big part of their lives.

So today is a new day... what will the future bring? It may be in our hands but fate and destiny play a big part too!

Reading the signs

If, like me, you believe in signs from our angels to show us they are near then this will be a promising read (I hope!).

So following on from my last post about becoming a Godmummy again - the service was lovely - the Deacon made the service.

As a catholic, things are different than in a Christian church. Not meaning to denounce anyone's religion but personally I feel the Catholic Church really does emphasis on the role of the parents and godparents and to quote the Deacon from last weekend - "we are not there to make up the numbers" - which in my experience is what it felt like in a Christian church.

This has a point, I promise.

So after the welcoming and prayers we all head to the font to where the baby is baptised and it is at that point the Deacon points out that there was an extra guest - in the form of a butterfly! 

I have long said that butterflies are my sign the boys are around me and have commented how there is always a white butterfly around us. Usually it flies into the garden and round and off again, if we are in the garden or may do it a few times. On days out, driving etc we always 'see' the white butterfly.

My god daughters baptism was brought forward as she was due open heart surgery on Thursday just gone. I anxiously waited by the phone all day and at 1.38pm I got the text to say all had gone well and earlier than expected! Phew! As I sat in the garden, pondering this and offering up silent prayers of thanks to my boys for bringing her through the surgery safely, a white butterfly flew into the garden and in front of me!

I have no doubt they were saying 'its okay mummy'!

So today is visiting day - where we go and see the boys and spend some time as a family. As we got out of the car, I was busy messaging a mummy who had lost her 16 day old baby girlie on Friday, when my husband called me and told me to look... There were 3 butterflies dancing together before one flew off and two remained dancing together! I watched them with a heavy, but happy heart for 5 minutes before making my way to their special place. 

As we sat there talking, playing and losing ourselves in our thoughts, we could see the two butterflies had separated and were playing either side of the cemetery, either side of their special place. Occasionally coming close to us.

So much comfort and joy.

Friendships

Noun The emotions or conduct of friends; the state of being friends. A relationship between friends.

Forming friendships start from the very beginning of life itself and we may lose many along the way because of time, distance, indifference, age etc and we form many new friendships too.

When life throws you hard times its then that we realise who real friends are and who will stand by us no matter what.

The first point of this post is realisation of who I can turn too. Last weekend was a tough weekend for me; it started a few days before. Princess was napping and I was catching up on Facebook and I started crying - I felt just so miserable in life and needed to talk to someone.

I saw one of my dear friends was online - she moved to the other side of the world over a year ago but she usually is always there. Believe me I am a stubborn person and I don't reach out easily to people. Due to the difference in time she was just going to bed and promised to reply in her morning time.

I still haven't heard from her.

So the weekend I posted I was feeling low and upset and one friend commented on it. We are very good friends and I would class her amongst one of my best friends. She and I are also friends with the one I mentioned above.

I wondered to her whether she felt there was issues there and then I poured everything out to her. She is a truly fab friend and the only reason I didn't turn to her the few days before was because I knew she was at work and I 'needed' to talk to someone at that moment.

Said friend from the other side of the world has meanwhile been able to update her Facebook regularly! 

So whilst I feel so hurt and dejected by this friend, tomorrow marks a symbol of friendship.

I am Godmummy to my niece but you almost assume its a natural progression... In May, a good friend asked me and hubby to be godparents to her little boy - her words were that she and her hubby couldn't think of anyone more awesome to guide their son. I've know this friend since she was pregnant with her first so it would be just over 3 years now.

Less than a year ago, I posted on one of the big charities dealing with half a heart conditions about our new fundraising event and a mum saw it. They had just been told their unborn baby girl had a heart condition and they live in the same town as me!

So we have known each other since then and they have become really good friends. Last week she asked me her daughters Godmummy! She said she felt we were meant to be friends - both having babies with HLHS, both being under the local hospital, in the same town, apart of the same church parish... We have so much in common too and it's such an honour to be asked to be anyone's Godmummy! 

So whilst there are a couple of friendships which are on the downside at present for me personally, there are some friendships that pop up and remind you that you really do matter!

So enough of my ramblings for one night!

Xxxx

June 2013

I haven't written for a while as I haven't had time really. June has been a hectic month for us and I've barely had time to think.

Firstly we were away in Ireland for my cousin's wedding and it was lovely being home with all the family! I always feel a bit homesick when we come back to the UK though. Especially as I have two cousins due the end of this year and it pains me to realise that their babies will not be newborns when I see them!

Then I turned 30... Such a milestone but in truth, I don't feel any older! I aged when I lost my babies and to me it's just another step closer until I see them again. As I think about it now, it is such a landmark as I feel really grown up now. They say your an adult when you turn 21 but I feel more grown up, more socially acceptable as a grown up, now that I am 30!

We had a party to celebrate my 30th and princess's 2nd birthday and it was lovely having all my loved ones with us. It didn't come without all the dramas from thein-laws  though. There is always drama where they are concerned! One day I will write it all down... Perhaps in the next bout of insomnia!! Lol!

So princess turned 2 and she really did grow up overnight! She is amazing, and I know every parent says that but she is! However the terrible twos have definitely set in and she is pushing boundaries!

Then to finish the month we had a big family fun day for the charity we set up in the boys' memory! Such an amazing day and even I am in awe of all that we produced!

So July approached and the exhaustion and de-stress happened... Took me a bit longer to get over June than I thought but am hoping I am over it!

June saw me gain 1/2 stone and lose my mojo.. Me and a friend joked at the beginning of the year how we would go to the charity family fun day, size 10s in hot pants... The reality was I was still a size 16!

So first weigh in of July and I have restarted! Having just realised my twitter account and Facebook account are linked, I am hoping to get support emotionally, mentally and skinny-ly (I made that up!)

Love me! Xxx

Happy Birthday To Me!!!!

I have never been an attention seeking person but I always love my birthday over Christmas - and the only difference is its all about me :-)

Seriously though, I turned 30. A big milestone. Everyone made a big deal of it but it wasn't a big deal to me. Another year older, another step closer to death, which is another step closer to time with my boys. I know its morbid and I am not wishing my life away but for me, I know, when the time comes, I get to have a whole new life with my sons.

I changed when I became his wife.

I changed when I got pregnant with the eldest.

I changed when I became a heart mummy.

I changed when I became an angel mummy, not just the once, but twice.

For me. I feel my life and persona did a 180 degree turn after losing my youngest boy. Nothing ever felt the same and I was definately different. Counselling help me to push the black clouds away and to get some light in. It may be stand up and realise that the worse has already happened and I am just me now.

I think this is when a lot of friends walked away permanently, and that's fine. They may get a second chance or they may not. I am who I am and I have learnt that since February 2010.

Turning 30, for me, is looking back and thinking, well in the last 10 years what have you done:

1. Graduated from Uni with second class honours
2. Went to Florida
3. Got engaged
4. Lost weight
5. Got married
6. Had a baby
7. Lost a baby
8. Had a baby who flew to straight to Heaven
9. Set up (with help) our charity
10. Had a baby who has stayed on Earth

So one step at a time, what would I like to achieve in the year that I am 30.... I want to get to 31 and be the weight or clothes size I am happy in, I want to be even more successful with the charity, I want to make sure everyone in my life knows how much I love them and care for them and I would do anything for them....

So, Happy Birthday to Me.... xxx

Airplanes

Anyone else feel the deep centred joy of being high in the clouds on an air plane? We are off for a mini break at the weekend and knowing I am nearer to the boys than I am here on Earth feels me with comfort :-)

Hi.............

Wow, it's been a month since I last posted... sorry! Time has gotten away from me. I keep meaning to write things down but then I barely have time to sit :-(

So eldest's 4th birthday has been and gone. Feels weird to think I have a 4 year old, just out of sight and just out of reach. I miss him so much! He visited me about a week before his birthday. He's so beautiful, but he always will be. We had a gentle day, found the build up worse, as usual!

The day of his birthday and the Sunday just gone, Princess has been acting weird when we get to the cemetery. She is fine until we are about half way up the path and then freaks out - screaming, sobbing, say 'no, no, no' and wanting to go back to the car. I don't know why.

The only thing different was obviously his birthday we brought balloons up and Sunday just gone, we took them down. Now she is a freak and doesn't like balloons occasionally so we are hoping it was just that and not the start of her not wanting to go to their garden.

I know the time will come eventually but it will break my heart if its now. I treasure, beyond anything, our family time :-(

Talking of family, we have a new addition and he is male! He has 4 legs before you get excited! My new boy puppy! It's hard work, its like having two toddlers at the same time! LOL!

Remember a couple months back I freaked about possibly being pregnant, turns out that my coil possibly has come out so perhaps a slight justification on freaking out. Wonder if Hubby could get tested whilst he is off! That would put some pressure off!

Not much more has happened here, still struggling with weight but found out my thyroid is low again so hopefully it will kick start again!

Love
Me xxx

Good Shepherd Sunday

Having lost my faith and understanding of Gods will particularly after I lost the boys and in my moments of darkness I do question still Gods will. In the sense that, why "giveth to taketh away"?

Today's newsletter from Mass included words from my priest about Good Shepherd Sunday (today).

He was talking about vocation into the priesthood for himself and for others and quoted Cardinal John Henry Newman who stated his vocation was "Gods definite purpose" for him and that there was a definite purpose for everyone.

The priest posed the question "What is God's definite purpose [for me]?"

I am yet to understand my journey or purpose and wonder why there was a reason I had to have children on heaven and earth. But I wonder if anyone can say what is their purpose?

I think of an acquaintance  Kristine, who is campaigning for CHD newborn screening after the death of her beautiful girl, Cora (www.corastory.org). She has taken her girlie's death and is empowering others and saving babies lives in the process. Was this God's purpose for her?

Update from Me!

Well, hopefully, you can see I have had a bit of a revamp! I wasn't overly keen on the last one and found this which I think is more me!

I am also now on Pinterest (not that I know what I am doing!) if you would like to follow me!

Not much else has changed here, Princess has been poorly and we have all felt the effects of it.

I've been helping two local families by providing support whilst they are in hospital and it's been a really ego boost :-)

The diet is failing and I need to get my butt in gear for a family wedding on the 1st June!

xx

All out of sorts

Haven't posted for a while as haven't been able to put into words why I'm out of sorts. "Something" feels odd.

Lets start with some positives. Firstly, I finally cracked the weight loss and met my newest baby boy. He was so snuggly, only 3weeks and 5 days until he comes and lives with us.

Negatives.... Cracked the weightloss and lost focus again. Put it all back on :-( I'm so frustrated and I have a wedding in 8 weeks but I feel like I'm still going to be the fat one. Why can't I just lose weight. Husband thinks I should just accept this is where I am going to be weight wise but I look in the mirror and I hate everything I see. I've had toast and tea this morning

I feel like I am plastering a smile on my face when I don't feel at ease inside. Why is that?

I am worried about getting my boy. What if we are meant to only be a family of girls? My boys live in Heaven, what if he does do? I'm scared.

Bleurgh, sorry for the random post of jumble

Help

Okay so here goes. I have had two letters addressed to 'The Parents of {ELDEST}'.

The first was an invitation to a genetic study and I was VERY upset about it as it was a shock to have post for him 3.5yrs later. I replied back and did say you know he is dead.

Then I got another letter last week and it was entirely wrong. I didn't even read the form - just phoned (no answer) so emailed and said you know what its upsetting. The head of genetics called me to apologise and asked what we have had and I then read the form 'consent form for adults who lack consent' - WTF?!!!

She was hugely apologetic and said did we still want to partake in the study. It's the DDD study (http://www.ddduk.org/) as she believes we will get the answers we need.

Get the answers we need.

This is bothering me. In as much of the sense of do I want the answers? Of course I want to know if there is a genetic link but I don't want to be told that well we can do something before you get pregnant to stop you having another cardiac baby.

I am done. I am done because I cannot go through the heart ache, the rollercoaster, the worry again. I have my boys in Heaven, I have my human and feline princesses and a soon to be a new puppy.

So I know it shouldn't bother me but it does.

Mothers Day

It was Mother's Day here in the UK over the weekend and it was gentle and lovely for me.

Last year, I think my husband and I had high expectations of making it perfect as it was my first Mother's Day with an earth bound child and it was perfect. Well as it could be with your two babies in Heaven.

This year,I was happy for a low key day, a day with those I love. I was spoilt by my husband and rainbow and saw my boys too. The great news is we are having a new addition to the family!

No, not another baby!

I'm getting a puppy! I've been broody for a while (if you haven't read back) and been watching and waiting for a dog to give birth. We weren't in the first 7 to get a pup but the family just before us pulled out which meant we had one!

We get to meet him over Easter and then he comes to live with us at the beginning of May. I am slightly worried about the cat as she is my baby and she goes everywhere with me. Even the husband doesn't get a look in unless its on her terms and I'm in sight lol! I'm hoping it makes her more loving as I am writing this, me and the husband are cuddled on the 2 seated whilst she sleeps right in the middle of the 3 seater.

Common sense is to squeeze in beside her but you have no chance as she looks at you in disgust and jumps on the floor and gives you evils! She certainly has control on this house.

Charity Work

After the eldest died, we threw ourselves into raising money and awareness of his heart condition and now obviously do it for both boys.

Saturday night we had an event and my friend's mum cornered me before the start and told me how proud she was of me. She is like a mum to me too and to hear her say that meant more than she will ever know.

She said how proud of me she is for picking myself up and doing everything that I do and hopes one day, there will be enough research for us all to know why and how to make things better.

She told me that she knew my boys would be proud of me too.

It's heart-warming to hear it as sometimes, even though I do know, its nice to hear that people are proud of you. I can look back now and see how far I have travelled. Don't get me wrong, I know that there is a long way ahead.

Bit like this picture:

I say that because as Mother's Day approaches I am not consumed with making a million memories, I am content with letting them happen. Last year, it was my first ever Mother's Day with an earth baby and it felt important to make it special. And it was.

This is I am happy to be with my husband, princess and visit the boys and feel whole for as long as we are there.

Turning 3

My little boy is 3.

Where has the time gone? It still feels so raw. I remember feeling emotionally raw yet shut down at the same time. No one said it would be easy, I didn't expect to be given a free pass on how hard it would be.

Silly things you remember, being at the hospital early (for a change), waiting for the nurse, waiting for contractions, waiting for him to be born.

My heart aches with the pain of his labour. It was more painful than princess' one. I remember the cold. I remember the grey day. I remember the view.

I remember the tears.

I remember the gentle snow shower right before he was born. The gentle sign he wasn't going alone.

I remember the fear.

I wanted to see him. I wanted them to push him in my face and show me him; but I was scared. I was scared of looking into the face of the death of another one of my babies. I was scared of seeing all my hopes and dreams as dead as he was. I was scared of the unknown.

I remember aching to see him, hold him, to want to die to be with them both.

I can feel the cool touch of the door on my forehead as I leant against it. Knowing he was the other side of it. Wishing that the door would open and he would be there and I would have to seen him.

I remember the fear.

I cry for my lack of strength at the time. I cry for my unwillingness of embracing fear.

I cry because I never saw his face.

I cry because I see him in my mind's eye as he would now. A 3 year old, with brown hair and blue eyes. A slimmer, slightly taller version of his sister. I see him with beige cords and a off-white jumper. Teddy in one hand.

Standing there on his own. He is just out of reach. I reach for him but can't grab him. I want to hold him and say I am sorry.

I'm sorry baby.

It never gets any easier, the hot tears flow so easily. The hardest part is the fact they are so private now. I don't want their sister to associate them with mummy being sad. I want her to know about the bravest two boys I ever knew. I want her to be proud of their journey. I want her to be proud of them, of me.

To my darling boy, my smallest, perfect little man. I love you so so much my darling boy and I wish you a very happy 3rd birthday.

I miss you so much.

Strength

Just when I think I am doing okay....

I almost beat myself up over it now and I wonder why. I fell so stupid when the littlest things make me cry.

We had a letter today; the actual front of the envelope said 'Parents of [ELDEST CHILD]'

I haven't had a letter regarding him in 3 years.

Bollocks.

Books

I am an avid reader. Always have been. I am also an incredibly nosy person so anything autobiographical or a true story gets to me too.

I read a book in March 2010 call 'A Mother's Tears' and was by Nicole Wyborn; she lost her beautiful boy and it was her journey along the grief path. Nicole's recount of her emotions and feelings always made me feel 'normal' and gave me the power to believe that I can work through my grief.

She and I have a shared love of reading and writing and this blog is my emotional outlet and a way of me expressing how I feel. It is a way of me saying I need help without actually saying it. As my friends would know, I am not the greatest at saying and showing how weak I feel.

Last week, a good friend, read this blog for the first time and said she had a book I might like to read. She brought me round, Stephanie Nielson's 'Heaven is Here'.

Whilst our stories are completely different in circumstance  I felt a lot of her struggles paralleled my own. The difference being she came across confident in who she was before the accident.

As I write that though, I feel it was only becoming a mummy to my Eldest that gave me confidence. I felt I was where I needed to be in life and that was to be his mummy so when he died that was taken from me and my confidence diminished.

So what is my story? Who knows......

Neighbours

Anyone watch it?

I do.

This week Sonya went into labour. When her waters went, there was meconium in them and she was rushed to hospital.

She ended up having a c-section.

Her baby was born and needed NICU as they were a meconium aspiration and she needed antibiotics.... if that wasn't already too close to home.

I got myself all worked up over it as it was far to similar to my princess' birth!!!! Thankfully, both are doing well.

Then I read today that the other pregnant lady, who had her baby, Vanessa.... her baby is diagnosed with a CHD next week!

Yes I want to applaud Neighbours for highlighting this fact but you know when it won't be a true representation on life? Well, I can't judge because I haven't seen it but the land of make believe in soaps!

<3

Genetics

Where to start?

Well, circumstance has brought us round to the discussion of genetics and research into HLHS again. After not speaking to our genetics doctor for so long; we decided to get in touch after being given the name of a researcher who specialised in HLHS.

Our genetics doctor is lovely and although I have spoken to her countless times but only met her once; she was confident of getting us a heart healthy baby.

A meeting is being arranged with this researcher but this morning I had an email from her regarding a study they are doing in Cambridge and it is the first time we have been asked to provide samples from me and the husband. They already have the boys there.

How do I feel? The large part of me is wanting to go for it and to find a reason or cause in my lifetime for why HLHS would occur or how or anything but then there is this tiny part of me who is saying:

"Do you really want to open that can of worms again?"

I guess it goes back to the grief path doesn't it? Am I taking a step back and for what? I know it won't bring my boys back but it might prevent another baby dying in the future. Perhaps my friend's unborn baby who has been antenatally diagnosed with HLHS? Maybe baby Seren wouldn't have died? So selfishly I may ponder if it is the right step forward but I cannot 'not' do anything. What if Princess was to have a heart baby in the future and me opting out now may have prevented it?

But then what if her DNA would also be beneficial to the study, in particular of our family? I know I am probably jumping the gun and thinking too far ahead but it's not just about me and the husband now. It's the whole family - like if we did have another baby; it's not us on the journey and selfishly worrying about the unborn child. Could we face it for her? 

It's taken 3 years to get this far with trying to get some action on the genetics route and I know it is a needle in a haystack and I wish more was put into the research of CHDs as there was cancer. I mean cancer is horrid and I don't wish it on anyone nor do I wish a CHD on anyone but if there was more public awareness and more research then there would be a greater understanding.

Plus I think it still freaks me out that a part of my boys is in a lab a few miles away from me. I know it's not 'them' but the concept of them still being there is weird, well I guess I am weird.

When will there be a right answer to all of this?

Courage

This doesn't seem like a huge milestone for many but it is for me.

Tonight I went to Zumba - ON MY OWN!!!

My friend wasn't feeling too good and asked if she would cancel. I really wanted to go still because I need to lose weight as I want to be skinny for my 30th.

And I went! I was shaking beforehand but thankfully, know the instructor and she chatted away to me. She will never know how much that meant.

Then it was time for class and it was nice to have familiar people around me.

Whether it will do anything for my weight loss.... who knows?!!!

I may use here as my weight loss tool.... what do you think?

Number 5....

............ be more active in the heart community - to spread awareness and love; be supportive at all times and be a good friend.

:-)

Christmas and New Year

So it's New Year's Eve here and I am sitting here, reflecting on the last year.

Princess has learnt to walk, talk and we celebrated her first birthday. Another year without the boys, but I guess its another year closer to when we are reunited again.

A year of ups and downs.

Emotionally, I feel 'better' than last year - stronger perhaps?! Mentally, the demons are still there but what is that saying...... they stay quiet with chocolate.

Now talking of chocolate... I am not where I wanted to be weight wise to end the year and whilst this hugely bothers me - it also doesn't. I am 2 dress sizes smaller than last year and the same weight I started now on the journey to losing weight to marry my husband. I am focusing on that rather than the figure on the scale. Everyone asks me what goal is, and I don't know. Not til I look in the mirror and go, you know what, you look alright, you do.

Traditionally, we make New Year's resolutions and I have a couple :-D

1. To continue to get 'better'

2. To get to 'goal' by my 30th

3. To stop thinking about how far I have to go and look at how far I have come and be proud of myself for getting there

4. To meet up with friends more; esp one lady in particular, who I am united with in grief and loss

5. I don't have a 5th but 4 seems shoddy! LOL!

Anyway, I hope you all have had a good Christmas and it wasn't as painful as anticipated. Here's to another new year; may it be better than the last or what you want from it.

Thank you for reading!