Finding the right words

I've been meaning to write a post for a while but I just haven't found the right words to express how I am feeling or things going round in my head.

I still can't.

This is most likely the last post of 2015 and I know I am in a better place than this time last year. Having the message from the medium healed some of my open wounds. I know they are okay, I know they are happy in Heaven. I will never ever be 'over' their deaths but a weight was lifted then and living without them is a tiny (teeny tiny) bit easier.

June saw my then-best friend's mum die from the injuries she sustained in her tragic accident. It brought me and then-best friend closer again but too many things had been said by her, that will not be forgiven or forgotten. So here we are, over 6 months later and I probably wouldn't say we are close.

Friends? Acquaintances? 

I'll always treasure the friendship we had but now my eyes have been opened and I actually don't like the way she has treated me and continues to. I will not go into specifics as I actually do not want to be brought into a negative head space with her.

End of October saw me reach a new low for me. I felt at rock bottom and didn't want to be here anymore. I was blowing things out of proportion in my mind and feeling worthless. Thankfully I have an amazing GP who saw that I wasn't me but I had been 'okay' a few weeks ago and there had been an increase in my pain medication... The same medication which was giving me pain relief was causing me to be suicidal. Reducing it again has made me "normal" once again. Problem is, I now have to wait until February to see the pain clinic and get that medication reassessed. 

But did I once have a call or text from her to see how I was? She has no clue what went on because she is so self absorbed on her own planet.

So for 2016, out goes the negative influences on my life and I need to get a grip on everything that is making me unhappy. Starting with my weight.

I have got to stop pissing around, pretending that I am doing something about it when in reality, it is very far from it.

I realistically have around 7-8stone to lose. To get back to a weight I was most happy at. But that weight was my early 20s and let's not beat around the bush, I'm 32 and a half years old.

So let's start with that bloody 1 stone award. If I can get that, but the worlds my bloody oyster.

2016 will also see me starting more counselling, I've been recommended it because I need help learning to live with my loss. I had counselling to help me work out the whys and wherefores of their deaths but it was pointed out that I live in a cycle of moving from one milestone to another and never getting a break from grief and loss.

Yeah, let's see how that goes, shall we?

10 Pieces Of Advice To The Parents Who Have Lost A Child

From one angel mummy to other angel parents...

#1 - Own It

This is your grief. This is your loss. Cry. Don't cry. Scream, hurl abuse or stay silent. No one can or should have the right to tell you how to behave, how to react, how to exist without your child. Not even another angel parent. Each loss is different, that occurs in different circumstances and at different points in life and time. Contextually, they may seem the same on a piece of paper. But no two people are the same. Fully embrace the grief, the loss, the death of YOUR child. It will help in the long run.

#2 - There Is No Right Or Wrong

This entwines with #1, because there is no right or wrong way to grieve, to live without your child. It is against the natural order to be burying a child you have brought into this world. There is no right or wrong way to parent a living child, so why is there a right or wrong way to live without them. Everyone is going to have an opinion, everyone is going to give you advice. What may feel right today, may not tomorrow, and that is okay. Have you ever bought something and at the time thought it was okay, but later reflected on it and its not? Why is this any different? You can't take it back and return it but you can decide, that actually, that its not what is right for you. At the end of the day, it is your child that has died. You are bearing the brunt of this grieving process, so you can decide what may be right or wrong.

#3 - Don't Forget About Dad

Daddy hurts too. Daddy has also lost his child. But he is also your husband/boyfriend/fiance/partner. He is a man. Real men don't show their emotions. Or do they? He is hurting too. He doesn't want to have to be the strong one but if he is not, how can he look after you? Society has cultivated how men should react and behave in certain situations. But we are in the 21st century and so many men are standing up, wanting their voices to be heard too. Everyone rushes to the mum, but take time out to check on him too. He is the one who will be up at night, crying silent tears, so not to wake his partner, because he needs to make sure she is okay. A dad hurts too.

#4 - Friendships

Family is family. Blood ties will always be there. Friendships. Now that is a whole different playing field. Don't be afraid to seek out other bereaved parents. They are the only ones who can make sense of what you are thinking, feeling and saying. Because they will have been there, done that and bought the t-shirt. They are the friendships that will last for eternity because you are linked by that invisible cord of recognition. You will also have before-loss friends. The friends that knew your child, knew you before your child died. They are the ones who will Facebook how much they are sorry for your loss and how they are always there for you. But half of them will run a mile. They won't know how to deal with the friend-who-has-lost-a-child. They will shy away from wanting to talk to you, or meet up with you. Now, the other half. They are true friends. The ones who want to know the new 'you' (yes you will be different). They will not be afraid to speak your child's name. They will hold your hand, perhaps cry with you. They will remember with you and grieve with you.

But then there are the after-loss friends. These are also divided into two camps. The ones you lost touch with but heard on the grapevine. They start off with well meaning messages, and the friendship rebuilds itself to the same stature as true friends. The ones that will make you question why you lost touch in the first instance. Then there are the new friends. The ones who know nothing of who you were before your child died, but got to know you weeks, months, years after. The ones who will say 'tell me about your child who died' 'I want to be a good friend to you' - the ones who will cry as you retell funny stories or what happened the day your child died.

Friends are the family we choose.

#5 -Time

Give yourself time to grieve. Its so simple. Don't rush yourself through the process as you will end up back at square 1. Just allow yourself as much time as you can give.

#6 - Work & Money

I've combined both as they go together. If you are employed, then its difficult to think of having to get up and carrying on with that daily routine of going to work. It goes hand and hand with time but then your employer can only give you so much because they are running a business. And without Work there is no Money. Money is the root of all evil. Seriously. You don't worry about it immediately after losing your child, sometime after it, it dawns on you that actually, the reins need tightening. It could be that you are not at work, or work cannot afford to keep paying you. But any nest egg gets eaten up and the sensible person in you begins to worry about the future.

Stop.

It is only money.

Yes we need it for a lot of things. But it cannot buy you more time with your child, more memories, or even just one more kiss and cuddle. It is just money. Nest eggs can be rebuilt again, bills can be sorted out.

There is a dark side to money and that is debt. Sometimes, the black hole just gets too big and Peter begins to rob Paul. And yes it is terrible to get yourself into debt. But one day you will be able to get yourself out of debt, when you are strong enough to face the world again and your grief is not all consuming.

It is only money.

It is not love, memories or your child.

#7 - Mental Health

Most GPs will label it as depression but I would say it is more Post-Traumatic Stress Disorder (PTSD) because it is a deeply traumatic moment in your life when you lose your child. Please, do not be afraid to ask for help as if you leave it too late, the mountain gets bigger to climb.

#8 - Talk

Linking in with #7, talk. Find someone to talk to. It is usually better to talk to someone not directly connected to you or your loss. Another bereaved parent, your GP, a counsellor. It may not make sense, it may feel jumbled but you know what, you are talking. And when we talk, it is our minds way of making sense of everything and can be hugely theraputic.

#9 - Emotions

No I am not talking the distraught, the tears, the sadness. But the anger, the betrayal, the hurt, the guilt. These are valid emotions and will come up. I remember the first time I properly laughed after my son died. I went from laughing to sobbing in a spilt second as it then felt instantly wrong because I shouldn't be laughing so soon after. But the truth is, it felt good to laugh and actually feel happy and the guilt ruined it because society almost dictated I should have been in this state of mourning.

#10 - Life After Loss

It does happen. You will stand again. You will look back and think how far you have come. You will shock yourself. You will be proud of yourself. It is not easy, but you will come to a point when you realise that the grief doesn't consume you or control you any more. It's there. It will always be there. But you are able to get through life without it controlling you 100%. It will be there, like the devil on your shoulder, waiting. But it won't be in front of your face, shaking its booty in a dance to rival Beyonce.

It feels like you have to conquer the world before it will even feel marginally normal. But you will get there. Just one step at a time, when it feels right to you.

Finding The Right Words

This blog post is about 3 weeks overdue as I just haven't been able to find the right words to say what I want. If you know me personally, this is a new thing LOL!

I've actually started and deleted countless times.

Nothing seems right.

So this is where I will start, a quote I posted on my Facebook/Twitter pages yesterday:

"They say that time’s supposed to heal ya,

but I ain’t done much healing ...”

(Adele)

 Two sentences that can sum up how I have felt for the last 3 weeks.

I bumbled along in the build up, waiting for it all to hit, being distracted by life in general. Both hubby and I were quite shocked that I hadn't fallen to pieces already.

Then at 10 minutes past midnight on the 1st October, my wifey texts me. And the floodgates open. My heart breaks as if he had died 6 minutes prior, not 6 years. The sobs that leave my body are mirrored from 6 years ago. The pain is so bloody intense and raw, it's as if I had been cut open again. Hence, why I started with that quote. 

But then I have healed. In the sense that life is not one giant obstacle course that I need to get through every single day. The healing is there in the sense that I can and have gotten through the last 2,190 days without him. I have healed from the freshness of grief.

But every single day without him is a rite of passage as I may have lived this date, last 6 years, without him but each one hurts just as much as the previous one.

I sat at their garden reflecting on all their sleeping friends and the pain and agony of seeing how much that row has grown is visually in front of us each and every week. But we are still the only family, that probably comes, every single weekend. There is only 1 other family who comes regularly, but not as frequent as us. I cannot begin to imagine not going every weekend, but then 6 years ago, I couldn't imagine not going every day. I knew one day, I would have to stop visiting every day but I can't see us never going every weekend. Likewise, I don't understand why families only visit on the memorable dates (birthdays, anniversaries, Christmas...). Don't get me wrong, there is no right or wrong way to travel this path but for me, it is difficult to understand how parents can painfully bury their child but to one visit their garden 2 maybe 3 times a year. I can rationalise it but it doesn't make sense to me at all. I won't delve into who is right or wrong in the scenario and every family has secret heartaches, no one knows about, I just know that it will never be me.

My dear friend, Andy, has done a blog recently, and so many of what he said, is so true. There are key elements, which I hope he doesn't mind me picking out.

Grief. Anger. Stress. Gratitude. Feeling like the world owed you one. Fight. Determination. Control. Grief.

It always comes back to grief. Because that is the beginning and the end.

I remember telling Andy that he will go on a massive roller-coaster ride following the death of his son. And just when he thinks it's coming to an end, there will be a unforeseen twist.

My advice, just go with it. There is no right or wrong way.

And that is what hubby and I always agree on. There is no right or wrong way. Only what is our way.

How we chose to deal with, manage, live, exist, with our loss, our grief, our lives after loss.

First Day Of School

Today was her first day at infant school.

Fact of the matter is, I should have done this particular 'first' twice over, once in 2013 and once last year.

I felt guilt at posting my pictures of her today, so grown up, so beautiful, so happy, to be going off to big school. Not out of guilt for my boys, there is only regret there, never guilt.

Guilt for my baby loss parents, because I know the anguish they felt with their social media pages taken up with the 'first day at school pictures' knowing they would never experience this joy with their child who has died. I know, because it was me last year. I understand the heartache, more than anyone and I almost didn't post the pictures out of respect and understanding.

But this happiness came at a price, it made the moment all the more precious. It didn't escape me that I should have 3 happy children, one entering Year 2, the other Year 1 and my baby into Year R and I did have 'I wish I could do that' moment.

But I know, as I was taking those pictures that there were two small boys around us, jumping for joy and full of pride for their baby sister. I just know because I can feel them.

The hardest part of today wasn't the sadness, or the guilt, or the 'I wish'; it was the stark realisation that today, Thursday 3rd September 2015, I was going to have to let her go.

Not completely.

For the last 4 years, 2 months and 11 days, its been me and her (and her daddy too) but mummies you will get me. I was the one who stayed at home so she was and is my whole world. I don't really count pre-school, mainly because she wasn't there full-time and in the end I had to pull her out of pre-school because of issues I had with the care. But now, she will spend 6 hours a day, in a world where I am not her centre, learning, growing, changing, forming friendships, and she will do all of this independently.

I want her to grow more confident, form best friendships that will last her whole life, enhance her love of books, just like me and her daddy, to get the most out of school. I have such fond and vivid memories of being at primary school. I can remember most of the teachers names, I am still in touch with my head teacher from primary school, I remember the lady who taught me to read, to discovering my love and intelligence for Maths; but most of all, I want her to look back and have the same fond memories as I do of my time at primary school.

There will always be guilt, there will always be sadness. I will always wonder what if, I should have, and I wish but I will always be thankful to have this moment.

20th August 2015

My head is everywhere but screwed onto my body. I'm hit with the realisation that in 2 weeks time, first day at Big School will be done and dusted; 6 weeks today, it will be that day of the year I hate and this date 6 years ago, was 'that' failed cardiac catheter.

The thought of what ifs are creeping back in. What if you hadn't of died..?! Would you still be alive now? A happy 6 year old? Or would we have lost you further down your earth bound life? Would I have lost touch, or pushed away, so many people? Would I have hit target on my diet? Would we be living where we are now? Would we have had your brother or your sister? It's undeniable that we would have had another child but perhaps we wouldn't have had you both so close in age. Would he have been our next child even if it had been further down our life path or would we have skipped straight to your sister? Who would I be now? Would I be working back at the council? Would daddy be still at Homebase? Would daddy have learned to drive as it would have become easier with your appointments. Would you be at school? What if? What would?

Every year I torture myself with the sliding doors effect but unlike the film, I don't know where it ends.

There is no denying that I can feel myself slipping down the dark path but I haven't got the time for it this year. I've a little girl about to start infant school and that will occupy my mind for the first 3 and a half weeks of September so by the time I can fully absorb the reality that the day you left me is around the corner, it will literally be around the corner.

I'm sat here in bed, staring at your picture on the wall. I remember every sight, smell, touch, moment of that photoshoot. I remember that we went with the intention of just getting the freebie picture but having to tighten the reins to spend £150 on 5 pictures. But they were worth the sacrifice. I remember going to collect the pictures on a wet August day. Above all, I remember you.

I remember doing simple, every day things. Like trying the baby carrier out for the first time but I practically carried you as I was scared you would drop out. To being frustrated with your reflux and being reminded today as I went to John Lewis, of the time I fed you next to the glass lifts and sat you up to wind you except you threw up all over me and yourself. Daddy wasn't best pleased either as I needed clean clothes so a trip to the shops for me! Another memory that came to mind today was sometime from Friends (the one with the Yeti) where Emily tells Ross that they need new furniture because she wanted things that have not been breathed, let alone touched by Rschel. Your daddy and I wanted to keep everything that had a memory associated with it. Storage problems meant we had to be practical with things lol!

And as much as my heart aches and is breaking at memories and the next few weeks, I smile because it's all about you. And I am in an okay place. I'm at peace with a lot of things but it doesn't stop the aching heart and missing you more than anything.

So forgive me if you ask me how I am and you get 'okay' because okay is just the code for actually I'm falling to pieces with memories but rebuilding myself because of those memories. If rather have 142 days worth of memories than none. But then I don't want memories, I only want you.

Hitting The Ground Hard

This is really hard for me to say to anyone so hoping that just letting it out via writing will help.

But I have hit the ground, the bottom of the barrel... you name it; I feel like I am sinking faster than the Titanic.

And for the first time it isn't just about being an angel mummy.

Or a rainbow mummy.

It is just life in bloody general.

Yes, I will always grieve and miss my sons terribly. There are only so many ways you can say you are hurting and missing them and that occurs EVERY single day. They are in my thoughts, heart, and soul every second, of every day.

My previously bottom of the barrels have been to do with them.

Perhaps I am grieving; but for the life I once had. This time last year, my back was aching and giving me more niggles than usual. My usual painkillers and anti-inflammatories were started. I could walk everywhere, I was skinnier then but failed to see it compared to now. Life was pretty good, we had not long come back from the holiday of a lifetime in Disney World.

How quickly things change in a year.

I am now heavily dependant on 1 crutch, mainly because it is easier to get around on 1 although, I really could do with using both. I have a wheelchair for longer distances, usually with hubby as I don't like to be a burden on friends. I use shop mobility when I can. I am 32 fucking years old. I didn't need any of this shite a year ago.

I am having more and more panic and anxiety attacks. I am mentally forcing myself out of the house, Monday to Friday, because I can't do it to Princess. I can't keep her house bound for 6 weeks because mummy cannot cope. She doesn't deserve it. I have 5 weeks left before my toddler princess becomes a big girl and starts infant school. I want to make memories, I want to revel in her existence because without her earthbound existence, I just can put my hand on my heart and tell you, I wouldn't be here, writing, no pouring, my heart out on a blog, that probably won't be read but having the faith or hope that maybe, just maybe, someone will listen to me.

I sobbed and sobbed and sobbed last night. I broke my soul up (the remaining pieces of it), I think I scared my husband.

I am desolate at the amount of pain I am in. The problem being with Chronic Pain is that you can't see it and I have perfected the performance of 'normality' when every fibre in my body wants to curl up and scream. It primarily existed in the lower back region. Now my hips burn if I walk too much. By walking too much, I mean, for able bodied people (like me a year ago), it would be, say, walking half way around the block towards the shop. A walk I took for granted a year ago. My knees hurt because I am constantly trying to adjust my back, hips and pelvis to the position of the moment that will get me through the next step or two. My feet constantly feel on fire. The podiarists of the world would proclaim it is because I live in flip flops. But I cannot bend into a position where it is comfortable to put any other type of shoes on. They are comfortable to me, they are easy. They are my life until either they break or winter sets in. My neck hurts. My shoulders hurt. I want to chop my head off and lay it down for a while. Perhaps an indefinate period. It will relieve the pressure on these two areas. I am having migraines. I am struggling to get to sleep. Yet once I am asleep, I cannot wake up. I keep dropping things, or forgetting things or words to the most simplest things. Or my train of thought disappears completely by one small interruption.

We live in a modern world, where medicines are discovered and tried and tested regularly. With huge successes. Yet I am quite often, left to get on with it. The (locum) GP I saw last week's words were 'let's get you to your pain clinic appointment' - that's great but am I meant to be left like this for a whole month???????????!!!!!!!!!!! I have been switched from one medicine to another so I may be more cranky but then I stopped taking the other shite because they weren't working so why pump myself full of medicines that don't work.

Then to top it all off, I am the fattest I have ever been.

But not fat enough for NHS help!

Work that one out.

I don't mean surgery or anything, just help.

They, the GPs (not my lovely GP who has been on a sabbatical for an eternity it seems! Roll on Tuesday when I see her!), say that the pain I am in, plus my weight issues, plus my out of control thyroid, plus my mood mean that I am fighting a losing battle.

I am even considering the extreme weight loss diets, like your Cambridge and Lighter Life, because I need to do something to help me lose weight. If I eradicate eating from every day life, maybe it will give me a chance to refocus on sorting everything else out in my life and hopefully, just losing some weight will mean that my mood will boost, my pain will lessen (cos apparently losing weight is key)... the problem being is I like food.

I feel like every door I try to open, gets slammed in my face. Pain relief, help with pain, thyroid problems. I feel like an emotional burden on everyone.

My demons are coming out to play and having a great time. Friends don't really want to see me, or hang out. I am too much of a hassle to be around. What with my anxiety, panic attacks, physical disability. Or if I am with people then are they only with me cos they feel sorry for me? Or have nothing better to do? I am such a horrible friend, and am not the person I was. I miss the old me. I miss the old me with friends.

I've tried explaining it to my husband and he tries to reassure me but I don't want to be me anymore.

End of. I just don't want to be me. I don't want to be the woman who had a son, with a heart defect, who died suddenly at 4.5mths old; who fell pregnant, lost another son, with the same heart defect, at 17.5 wks pregnant; who fell pregnant, had a healthy rainbow princess, her birth was traumatic, needed neonatal, needed intensive care. But is a rainbow of light in amongst the darkness. I don't want to be the woman who gets engulfed in the black cloud of depression and has literally the characters from 'Inside Out' (Disney Film) arguing things out. I don't want to be the woman who is trapped inside this fat body. I don't want to be the woman who is living in Chronic Pain.

I want to be the mummy who has 3 beautiful children, who is happy more than she is sad. Who isn't in Chronic Pain, who isn't fat.

I know its very easy to judge and say that if you are that depressed about your weight, do something about it. Believe me, I am trying but you may find it so easy to lose half a stone, or a stone. It's like climbing Everest to lose 1lb. Apparently I shouldn't be so hard on myself for it. Yeah right. I want to punch you in the face.

Normally, I can plan my way out. But that light at the end of the tunnel is literally a pin prick. Blink and you will miss it.

So if you are one of my friends reading this, I am sorry for the out pouring.

I understand if you walk away.

I would walk away too if I could.

Hell, I would happily run a marathon to get away from this miserable cow LOL

I just need a break from life.

xx

Feeling Alone or Desperate...?!

So here I am, 3am and still wide awake. This is not a new occurrence for me. But I don't like it.

I've not blogged for a while and I should as it is quite therapeutic.

Life is shit. What else can I say?

I'm on a downhill spiral and I can't seem to get off the ride. Both physically and mentally. Physically.. I've more and more issues, with the insomnia being the newest addition! I'm exhausted but I get to bed and my mind just will not switch off. I've given in and worked, watched TV, read a book, tried to count sheep, got a drink for princess, turned her night light on because daddy forgot... I don't do not sleeping. I don't trust myself with sleeping tablets during the week, I worry about princess.

Mentality, I feel so bloody drained and at the bottom of the barrel. I've tried so hard to keep that brave face on when inside I am crumbling to a million pieces. Having a panic attack as I'm going to one of my 'safe' places. This is not be, I don't want to go backwards. But I only feel safe in the 4 walls of my house.

I'm panicking about the weekend, I've got to drive to London, my daddy is turning 60. Being in their house, my childhood home, it's a safe place. But we've got to go to the pub to celebrate. I don't like it, it's out of my control, it will make me claustrophobic, it will put my anxiety through the roof. But I have to do it. So that's Saturday. Sunday we are off to the park for a friends' daughter's birthday. I can deal with that, we will be outside, it's a favourite park as there is sea. There is something calming about the sea and it makes me at ease.

I went to the doctors today, not my normal one. Not sure if she's back from her sabbatical. Anyway, broke my heart to her and told her everything and I didn't get any support or anything.

What do I do to get some help?

My laid in bed, and my husband is snoring away and all I want is to curl up in his arms and sob. That's not normal. I shouldn't feel this way. I'm not an attention seeker, I'm not one of those people who would do something drastic to get the help but is that what I have to do?

All I feel like is that they are trying to get to the next pain clinic appointment but what if they can't help me?






I just hate feeling this way.

Dear My 32 Year Old Self....

What do I want to say to you??

Life is too short, you know that from losing your precious boys but not only that; your best friend lost her mum 6 days ago. 

It feels surreal saying that. Are we best friends again? Jury's still out but slowly things may be returning to normal!

Things have changed so much in the last year. You know you have changed. It's all good though; you are more at peace with  things surrounding your boys. You are no longer in the depths of grief but are at a stage of celebration and want them to be recognised in a positive light rather than a sad light! 

Your health has taken a massive down hill spiral. Your weight has gone up. Your thyroid is out of control.

But you are still fighting. You are still here.

Make this year count. Look at this in a year's time and be proud of you for what you have achieved again. Lose the weight. You can do it! 

Losing Your Best Friend

I've known her for over 13 years but sometimes things happen that change a person.

Of course, I naturally changed after losing my boys and she was by my side throughout it all! Like she was by my side when I had my rainbow princess.

She said that she told me last year she felt I had changed. I didn't know what she meant but I can see it now.

I feel more comfortable with who I am and what I want from life. It means that I've a different approach for life but I still think I'm me. 

Subconsciously, I think we've been withdrawing from each other for some time now and it seemed we had to make an effort to see each other rather than it be natural. Hubby thinks it's because princess started preschool so we have a new friendship circle, one that she's not apart of as its people with children the same age as her. 

The stupid thing is it started over some cards and its escalated from there. She's in a tense situation where her mum is in hospital from being hit by a car so I tried to reasons with her, saying I know things are tense but I was told in no uncertain terms it was a bunch of crap. 

The difference being is this time when she had a go at me, I didn't roll over and apologise but I stood up for myself and i told her a few things that had bothered me. That didn't go down well.

So whilst I am upset that I possibly have lost my best friend, I can't keep stepping on egg shells around her and watching what I say. The worse bit possibly is the fact I am not deeply upset about it. I left it up to her to decide but she never replied. I can't and won't chase her for an answer and just hope she comes back to me.

11th May - Birthday Eve

Today has been a day of reflection, recognition and moving forward.

When a person loses a child, you get the textbook phrases said to you, even 6 years later. Most of the time (fellow bereaved parents will know what I mean) its all well intended and as the bereaved mumma, I take the sentiment.

But there comes a time when as a bereaved mumma, I am thinking about what others are thinking. No, I haven't got over his, or their, deaths. No I haven't moved on. I am no longer the sobbing, quivering wreck at the mere mention of their names. I am at one.

That's all I can say on it. I am at one. Yes, I miss them. Yes, I hate the fact that life is so fucking unfair; to bury not one, but two babies in the space of 4 months. Yes, I wish they were here. No, I don't know how I cope, I don't know how I have gone from not being able to leave the house for just feeling overwhelmed, to being able to do 'normal' things.

The whole process of being a bereaved mumma is fucked up. There is no manual. Just like there is no manual for the first time parent. I just muddle through as best as I can, swim as hard as I can, sometimes the tide takes me back. But you know what, that is okay.

I see the desolation, the rawness of the pain, in the eyes of that mummy whose precious child has just become an angel. I see it. I feel it. I relive it. What can I say to her? Other than, you know what, it will be okay. I was where you were, there was no one holding my hand, but I am here for you. I will hold your hand. It's okay to let go of my hand and try and sort it on your own, but my hand, and my heart, will always be open to you.

Because I am further down the path than you are.

You see, I envisage a path, more or less the same as Dorothy on the yellow brick road. Only it's not yellow. The beginning is darkness and you are travelling towards the light. Along the way, you will encounter various people who may or may not help you. I am no where near the Emerald Castle but I am in the hazy sunshine, the slight warmth of spring on my skin. I can see the darknes behind me, I can see the clear path ahead of me.

If I step further towards it, it doesn't mean I forget, or move on. It just means, I have found a new path of understanding.

This time 15 years ago, I went on a first date. Unknown to me and this boy, but our paths should have crossed years before it, but fate... destiny... brought us together at this particular point in our lives. We laugh about that first date now, Pizza Hut followed by Kevin and Perry Go Large at the cinema. I know, so retro!

But that boy held my hand for the first time on that date, and he's never let go. He has been my rock, my strength, my better half (I will admit that here as he probably won't read this!), my sanity, my stability, my true love, my soul mate... we were just meant to be.

You see, I was meant to go to his secondary school and he mine. But we never did.

His family friends daughter, was one of my best friends at school. But we never met. (Coincidenitally, her ex-boyfriend was his best man and one of our best friends now!)

I was a checkout chick, and I did a lot of checking out ;-) I once saw him and thought he was a bit of alright. Didn't know who he was.

Only fate finally intervined at this point and back then, you wouldn't believe it but we had no Facebook, Mobile Phones were relatively new - so we wrote letters to each other. Before we went on a date.

We used to write letters to each other all the time; even after our first date. As you can tell, I like to write. I can express myself literately better than I can vocally. But once we started texting, that was it.

I remember the first texts. I was in afternoon registration at 6th Form. Don't remember much more after that afternoon as once we started, we didn't stop.

I do have a point to this story... bear with me...

So, the date of our first date, the date we became a couple was Thursday 11th May 2000.

Fast forward to Monday 11th May 2009.

We had moved in together, moved away from family and our friends. Started a new life down south. We had our bumps in the road. I graduated university, we got engaged. We got married.

Monday 11th May was our 9th 'date' anniversary, but it was the last day we were officially a couple.

I was induced that morning.

But he waited 24 hours to make our lives complete.

One chapter ended and now our new chapter began as a family.

So tomorrow is about celebration. Celebrating the fact that 6 years ago, this small baby boy came into the world. 7lb 15oz at 36 weeks and 5 days gestation.

He changed everything. He made us a family. He made us fighters. He showed us how to be strong. He showed us true love. He showed us that nothing could break us. He made us believe in miracles.

He not only came into our world, the world, but the heart world.

He showed us true courage, he showed us that love can change everything.

So tomorrow is about celebrating our biggest boy's 6th birthday. He isn't physically with us, but we know he is always around us. He is playing football in the clouds above with his brother and all his angel friends. He is happy, he is free, he doesn't know the world full of pain, medications, surgeries, procedures. He is free as a butterfly.

It's about celebrating becoming a family for the very first time.

xxxxx

p.s. to the parent who isn't at this point just yet; don't wish for it. You will learn alot more about yourself before you get to this point. I am not saying the pain, sweat and tears will be gone, but you will be able to smile at the memories of them, for they have made you strong enough to live another day.

The C Word

As many of people across the country, I watched the TV adaptation of Lisa Lynch's book, based on her successful blog, Alright Tit.

I, like most people, know the devestating impact cancer has on people. I am grateful to not have known it in my immediate circle of friends or family.

Though the innate selfish person within me, almost wonders, had my boys been cancer kids instead of heart kids, would the social acceptance be more present?

But that is the selfish person in me, wishing that there was more awareness of congenital heart defects. (NB: more children die yearly from some form of congenital heart defect than they do from ALL childhood cancers - so to be blunt, you are more likely to have a heart kid than a cancer kid and for them to die but hey, the compassion / awareness / knowledge is all to present in every aspect of media life for cancer #getsoffherboxtocontinuewithherramblings)

My point of this innate rambling is the way Lisa speaks about blogging. How the almost-anonymous world of blogging is so cathartic in times of strife.

How bloody true!

This <whole blog> is my story, my ramblings, my journey of living after loss, parenting after loss, raising my rainbow baby, mourning, grieving.

There is no time limit on grief.

There is no manual on how to deal with life after loss. When that loss is your 4.5mth old baby boy or your 17w5d (gestation) old baby boy.

I don't pour my heart and soul into this blog, thinking that Steven Gerrard will read it and fall madly in love with me. I do it so that I let everything out, its cathartic, it's a way of processing my thoughts and feelings. So that when I am having a truly shitty day and thinking what the hell - I can see, look how far you have come babes, you've made it this far, you can keep going.

Believe it or not, I never kept a diary as a teenager - too much effort LOL! I preferred switching off and going to sleep rather than write about my meaningless day where the boy I fancied never looked my way or the cow bag who kept giving me filthy looks tripped over and fell flat on her face (please note, this are not actual events from school - I tend to block out most of what happened there as I didn't enjoy it!). I always started each year with the intention of keeping one but never lasted long enough for it to be worthy!

Now I flit in and out, when I have something to get off my chest (Dear Stevie G, you never need to get off my chest ;-) ); I hope that there is a babyloss mumma reading this who is fresh on her journey of life after loss and isn't thinking 'jeez, who's this nutter?!' but getting something from my honest ramblings and all it takes is to find the outlet of where you can truly be honest of how life truly is!

xx

You Raise Me Up

It's that time of year again, where I struggle beyond where words can express.

Saturday morning, I had a complete and utter breakdown. It had been building for some time, and it just poured out. I actually felt suicidal. It wasn't just because of the boys, there was other things as well. I won't go into detail as it was just a culmination of life in general.

A couple of weeks ago, I went to a mediumship event and was a member of the audience. My boys came through. Some people are skeptical, some people are believers and there are those who sit on the fence. My word, she knew things, no one would have known. I drew a lot of comfort from that and I still smile at the thought of it.

But then the build up happens and life because unbearably shit. I did a post on my personal Facebook page about how I was struggling. I don't do this for sympathy or people to send love. I do it so they realise I am struggling and the reason I am not wanting to meet up or go out is because actually, every day is an effort of going through the motions. It's so difficult to explain the feelings of the build up and you will only truly understand if you are a bereaved parent. Talking to a good friend today about clock watching, and the minute the clock hits that significant time, it feels like the weight has been lifted. It's so true.

This weekend, we had the opportunity to attend a memorial event. We didn't make the one last year as we were going on holiday so this was our first time. It was exclusively for bereaved families; a chance for us all to just feel at ease. There was an invisible cord that connected each and every one of us. We all knew the pain, the tears, the heartache. We all understood when no words needed to be spoken.

The lead person said when he was asked to do the event, two words popped into his head, and he couldn't shake them.

The first was recognition.

The event was a chance for us all to be on a social level of acceptance. There was no pity looks when you mentioned your child has died, there was no awkward silences. There was love. There was a time for remembrance, reflection and recognition. Our babies are here. Some of them, their feet didn't touch the earth but left imprints on our hearts.

The second word was celebration.

My ears pricked at this as it wasn't a word I thought of. We were there to celebrate the lives of these precious Angels and all that was and continues to be, achieved in their name.

It made me think about my own personal journey and how far I have come. He will be 6 in 9 days time. I'm still grieving, I'm still angry, I'm still desolate.

But I have never celebrated either of their lives and their everlasting imprints.

Eldest changed me, the minute he was fighting for his life, I was the lioness protecting her cub. I was his voice, I was his strength. I gave him all my strength so that he could fight to come home. He became my world. A world different to life with a healthy child. His death broke me. Shattered me into a tiny million pieces. Every day, I am picking up another piece and putting it back together (in me) like I have been for the last 2041 days.

Two things happened in the darkest days following his death; I found a part of me that dug deep to help others. And I found out I was pregnant.

But again, the events surrounding his life and death, shattered me into a billion pieces.

I have lost myself in a world of grief, desolation, loneliness, heartache, confusion, and resurrection.

I almost feel like Jesus, rising from the dead again, (no blasphemy intended) or a Phoenix from the ashes.


I feel like I'm confusing you. Imagine one of those 3d puzzles; carefully constructed. Then, one day, something drops down and crashes into it, sending all the pieces into a million different directions. You then look for the pieces and begin to put the puzzle back together when another drop sends the pieces even further afield. And you have spent the last 1900 days trying to put all those pieces back.


Those pieces are pieces of me.


So what have I celebrated? As in truly celebrated, when it comes to them??


▫️ a fundraising body, dedicated in their names

▫️ them

▫️ their imprint on the world and me

▫️ the fact that they continue to link their invisible cord

Celebrate that I am still here because I need to continue picking up the pieces; I need to sort through all of them to figure out if it is the right piece for that time.

Celebrate the person they made me.

Celebrate the love I have.

Celebrate that I can look back down the path and know they are still standing by me.

Celebrate being their mummy.

I think I've just put a massive piece of my puzzle back together.

At the end of the service, the brass band played Westlife's "You Raise Me Up". Truth be told, I love a bit of Westlife but like everyone standing there, the lyrics flowed through my mind and matched feelings I never knew that were there.

The lyrics could be applied to their short lives, to their deaths, to how their deaths continue to implicate our world.

"You raise me up to be more than I can be"

Asking For Help....

I don't do it. I physically cannot say 'I need help'.

Except I need to do this tomorrow at the GPs.

I'm not seeing my usual lovely GP as she seems to be on holiday but a different one - I class him as the boss man of the surgery. I've seen him twice before, once for eldest and once for princess. He scares me because he is the boss man.

But it is because he is the boss man that I opted for an appointment with him.

What do I need help with?

Lots really.

Apart from the usual dippiness - which seems to be hitting new highs lately; pain, but I guess until my medication is up to the full dose, we won't know if that is helping.

Mainly, the fatigue and weight issues.

Once my head hits the pillow, I am out like a light. I cannot be rouse in the morning. I don't hear princess get up, I don't hear husband's alarm or him getting up. He tries his best to rouse me. But it takes a good hour before I am even three-quarters awake.

On the weekends, I can easily sleep for 12-14hrs each night. I do feel better for naturally waking up but by the middle of the day, I could easily return to bed.

I cannot lose weight. I am now 8lb lighter than 30th December. I was marginally 11lb lighter. But the last 6 weeks has seen me lose 1lb, put 1lb on, lose half a pound, put it on. I gained 2lb last week because I went f##k it. Husband has been doing it same time as me and lost 2.5stone. I am so proud of him but I feel even frumpier next to him.

I'm fighting an uphill battle and I know losing weight will give me the self confidence I crave but I am tired of fighting it when it hasn't been worth it at all.

I had my thyroid rechecked last week because the previous one, 6 weeks ago, flagged up an unusual error.

The results stated I need to speak with a GP.

So I know before I even go in tomorrow, he is going to say, it's my thyroid. But I want to stamp my feet and say 'hang on, we can't always put it down to my thyroid'. It's depressing, even for this manic depressive with anxiety and OCD issues.

I just need help. Constructive help.

Or someone to wire my gob shut!

Tiny Boy's 5th Birthday

It's been a whole 5 years since I gave birth to my previous tiny boy. He weighed just 158g and was 20.4cm long.

I've found the lead up this year different to previous years. Could be a whole host of environmental reasons, my chronic lower back pain, the fact that the lead up to my monthlys are getting worse each month and the fact that once again, I appear to be getting tonsilitus.

The tears haven't fallen as easily as previous years, and I think the guilt is the biggest feeling I am trying to deal with.

I know that I don't love him any less but the guilt is hurting me more.

The husband and I had a 'friendly' debate on what happened 5 years ago. He seemed to remember things differently to me which raised doubts. So much so I made him get the medical notes down from the loft.

We found out on husband's birthday in 2010 (it was a Wednesday) that there looked like there was a cardiac defect. But the images were not clear so we were told to come back on the Monday (15th). It was this scan that they told us they felt he had at least Aortic Stenosis but given the fact that eldest had died from HLHS, they felt that this was the most likely diagnosis for my tiny boy. I couldn't take likelys or probable. I asked for a second opinion. We went to The Evelina where we were told that along with HLHS, he had other complications with his heart. I was given an honest diagnosis by a consultant who did not insult my intelligence with probabilities.

The decision was made between myself and my husband that we couldn't put another child, a child with a more critical diagnosis at 16weeks, through what his brother had been through. We couldn't do it again either. I don't wish to be judged on the basis because he wasn't perfect, he was no longer wanted. I judge myself enough for the decisions we made and I know we made the decision with love, first hand experience and knowledge.

I last felt him move just before I went to bed on Monday 15th February 2010. I sat on the edge of our bed and I prayed to God and I begged my little boy to forgive us for the decision we had made, and he kicked me. A strong kick. I cried.

My medical notes state that he was a Termination of Pregnancy for Fetal Abnormality.

I will always have my regrets, I will always have what ifs. My husband tells me as much as he wishes he did push me into seeing our tiny boy, he knows it would have broken me in to a billion more pieces and he would never have been able to get me back.

He questions why I frequently need to re-read his postmortum report. Because I have to see in black and white that I made the right decision.

He had major cardiac defects that came under the spectrum of HLHS. He also had other defects that alone were complicated but with the HLHS it made him more unique. He had left sided isomerism, which they say occurs in just 7-8% of all HLHS cases. He had problems with his bowels too.

He was just destined to be our precious tiny boy.

I've felt so much love today from friends, acquaintances, and strangers, yet my best friend, who was there when he was born, hasn't even acknowledged today.

None of our parents or siblings have either.

My husband tells me as long as we always do. That's what matters.

But it fucking hurts like hell.