Constant Miss, Organ Donor List & Christmas … Talk about a mix bag of topics

Sometimes it just hits you like a ton of bricks and over the past few  weeks, I feel like I have been hit by a hundred ton of them. Some days, I just feel like I’m walking round in a daze, others I find myself doing a million things to distract myself so bedtime can come quicker. 

I miss my daughter so much, when I feel like this nothing feels right at all. It’s not just emotional reactions, it’s physical. My body feels like a lead weight, my shoulders are tight, my jaw feels stiff, the tears won’t stop falling (normally at bedtime) and my hands get so jittery that I can’t stop moving them.


This photo above is one of the last ones that I took of Millie, about a week before we lost her. I was going to London for the night on my first day back at work and I hated the fact that I had to leave her, I didn’t want to – so daddy put her in my case to pack so I could take her with me 😀

They came to the train station with me and I remember standing there with them on the platform not wanting the train to pull in then I wouldn’t have to leave her – but it did and I cried most of the way to London. Just over a week later, we lost our little girl and I was never going to get to see her again. I could never have predicted this when I was crying over the fact that I wasn’t going to see her for one night when I took this photo. 

Why am I feeling like this at the moment? I honestly don’t know. Maybe it’s just coming to that time of year again that we hate. October to January is so hard for us, Millie’s anniversary of her passing and funeral, my father in law passed a month later and his funeral, Christmas without our daughter, New Year without her and then mid January it’s her birthday. All this heartache in such a condensed period is not good for the soul.

Maybe it’s because a few weeks ago, we got Leo’s letter through saying that he was officially on the Organ Donor List and that brought back memories for me about when we tried to donate Millie’s organs and I know this is still in my mind at the moment (but because she had to have an autopsy we couldn’t donate Millie’s ) – I’ll go into this more one day. I know this has been playing on my mind since we got the letter – stirred up too many memories I think. 

SIGN HERE TO BE AN ORGAN DONOR

Or maybe it’s because it’s coming to the period that we should be weaning Leo. And honestly, I can’t face it. I’m not comfortable doing, it knocks me sick at even the thought of it. We bought a new High Chair for him and it’s still in the box – I don’t want it up, I don’t want to look at it. To be honest, I’m very surprised that we even bought it. I must’ve been having a good day. One of the flashbacks/nightmares I suffered an awful lot with was seeing Millie in my nightmares sat in that highchair that it happened to her in. I know I never physically saw her but your mind is good at playing tricks on you and I see the pain, hurt and struggle on her face in my head and it absolutely breaks my heart that I wasn’t there to help her, that I wasn’t there for her when she needed me the most. 

Of course, we will eventually wean Leo, he’s just on the verge of turning 6 months and we obviously know that this age it is suggested you wean. He’s already trying to grab food and staring at it when he sees any. We haven’t waited because of the recommend guidelines, we’ve waited because after what happened to Millie, we just aren’t comfortable yet. Millie was such a competent eater when she passed away, we started to wean her at 14 weeks, so by the time we lost her, she was a great eater. This is part of the reason that we struggle so much, she never struggled eating when she was with us – which is why we will never understand what happened to her that day. She was 100% medically fit and had absolutely no medical issues at all, yet we lost her. This is why we, I myself in particular, are struggling with the concept of weaning Leo. 

It could be because Leo is currently giving me heart palpitations when I look at him in his cot as he has developed the same habit as Millie and it seems that he likes to sleep on his front at night – we are currently still sleeping in his room with him and believe me , it’s giving me sleepless nights listening to him turn over! 

  
 
Or maybe it’s because I’m about to turn 30 next month and I feel like I’ve been through more than I should have done at this age. I never expected to suffer through a trauma like we have. To be grieving over my child. I wanted the perfect little life, the perfect family and I had it and then it all got screwed up in a matter of seconds and this has aged us both tremendously.

We’ve been married for 5 years next month too and we were talking about it tonight and Dan said feels like we have been married for 50 – and he’s right. We had only been married for 2 years when we lost Millie, we were still relatively newlyweds but we lost that so quickly when grief took over. 

  

I look back at these photos and it feels like a lifetime ago, not 5 years. I look at how happy we were on that day and I wish that we had a bottle with that happiness in it, along with the happiness that we had the day Millie was born – just so that when we have sad days, like I’m having at the moment – we could open it up and let a little out and just feel like that again for 2 minutes – that perfect happiness. 

Everything is always tainted with grief in our lives and it always will be. When we had Leo earlier this year, we of course were so amazed by our little son and we loved him straight away so much – which was a complete relief to me as I had struggled a lot through my pregnancy thinking I wasn’t going to be able to bond with him because I was so scared – but although we were happy , it was also tainted with so much loss for Millie. Maybe it’s a different type of happiness we experience now – it’s certainly not “normal” happiness. I don’t know, maybe it needs a new name “Grief happiness” “Tough Love Happiness” (feel free to suggest a name here) 

At least nowadays we can laugh and smile – for a long time after losing Millie we couldn’t and if we did , we immediately felt guilty and stopped. Every new experience we took on we felt guilty for, we didn’t enjoy birthdays and we haven’t celebrated Christmas since we lost Millie – in our minds, we were programmed to think “If Millie isn’t here to enjoy this, then we shouldn’t either.” – I’ve since learnt that this is known as Survivor’s Guilt, which I learnt through my Pyschology treatment  was actually one of my symptoms of the PTSD that I was diagnosed with.

We’re not sure how we are going to do Christmas this year, we of course are going to do it for the first time in 4 Christmases but we know whatever we do, it won’t be big or fancy or spent with anyone but ourselves, it will of course include our Chrismas Day visit to Millie and will just be enough for Leo. I’ve even bought Leo a couple of Christmas presents already – which has been hard in itself as Millie’s are still here untouched – the ones that  we had bought her that she never got to have.  

We’ve still got plenty of time to work Christmas out… (although not according to Facebook with all the statuses I keep seeing that include how many Saturdays there are until Christmas 😀) 

I just think there is a lot going on around us at the minute and it’ll be good to get a break at some point in the next few months when we can fit one in. It’s all the little things that affect me that start to mount up and that’s when I crash and burn… But I see it coming now, so I know when to stop and re-evaluate things.

My mum sent me a photo earlier today, think it sums me up perfectly.

  

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6 thoughts on “Constant Miss, Organ Donor List & Christmas … Talk about a mix bag of topics

  1. Valerie

    I can feel your grief so much in your writings..it makes me feel so helpless and I just want to hold you and take all the pain away even though I have never met you.I am a retired Nursery Nurse and have always felt that anyone who works with children should carry a paediatric 1st Aid certificate so at least something positive has come out of something so horribly negative.Please açcept my love and best wishes to you allxxxx

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  2. Gina Panayi

    I am usually the sort of person who is full to bursting with words & they come tumbling out in a waterfalls of hope, understanding & love.
    But I honestly don’t know how to find the right words for you today.
    But I will say.
    The storms that you sail through are beyond anything I can compare & right now those waves seem to be engulfing you. You search for reasoning behind the bleakness being worse than the usual suffocating wave. Each time you manage with your mighty strength to surface take ever larger gulps of air. The stillness will return, even though understandably never, ever completely or without ripples. Sail through with your loved ones keeping you afloat & know that Millie will always be the guiding light to lead you towards calmer waters & solid shores.
    My heart breaks for you all & for what you should never have been put through!
    You are inspirational and are allowed self doubt, but you must stay well & I really hope that you can defeat this darker period.
    Sending positive wishes & love. 💖 xxxxx

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  3. Vicky

    I lost my baby 7 years ago when he was just a day old from the hospital mis managing his birth – reading your words is like reading all the thoughts I have had over the years anniversaries are still tough and Xmas and mothers day and other random days or weeks but I would say in past year or 2 the heavy day to day pain has lifted a bit more maybe that’s time maybe it’s having 2 school aged children working and being crazy busy I don’t know really but it has definitely changed and is a bit easier to live with. Grief is so cruel and unforgiving it has changed who I am the partner friend and mother that I am some ways for the better some for the worse but despite everything we are survivors and know that the intense pain will always pass and make room for smiles and knowing that nothing stays the same good luck with weaning Leo it won’t be easy but he will guide you xxx

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