Monthly Archives: February 2017

Five

I’m actually fairly lost for words, I’ve already written a post for her anniversary in April.
But ultimately, her birthday I cannot comprehend that we have a 5 year old daughter, her birthday being today, yet we don’t have a 5 year old.
The years have move on, people have moved on. Everything changes. People you’d imagine would still be around aren’t, people you never expected to be now are. Seems such a long time, but it really is so short.
Time hasn’t healed a thing. it actually makes me watch it more.
I’m feeling particularly numb and cut off from everything this year.
Everything about this year is so similar to that of 2012 (bar the weather). Today is Sunday, her birthday; she was born on Sunday.
The day was glorious sunshine, it continued to get hotter the whole time she was alive, I even had sunburn in March, was wearing vest tops and flip flops.
I’ll always remember the day she was born, I remember all my children’s days of births, hers is no different.
But I wish things could have been different. I truly believed that once the first year was out of the way everything would have been back to normal, I would have healed, moved on and forgotten. But I have learned that isn’t going to happen, I’ve adjusted and adapted in a way I feel comfortable, unfortunately it hasn’t been understood the way I have found my coping mechanism, I’m open and honest, I’m still breathing. I never imagined I would be where I am today.
I still don’t understand how or why she died, the unfairness of it all, that emotion is as raw now as it was back then. The pain remains the same, simply because she is still not here, but she is still my daughter, no amount of eye rolls, back turning or conversation changes will stop her from being our little girl.
The little girl who is so beautiful. She had blonde hair with a hint of red, so maybe like her brother, but lighter, her eyes were a bluey colour but under the unnatural light of the unit it was hard to tell, I’ll never know what they would have been, that will always bother me, and I will always say that. She had the most delicate soft fingers, 8 fingers two thumbs, she was always fidgety, she was on the go most of the time Little Miss Fidgety Pants. She had character, she was her own little person, living inside a plastic box, in a blanket of wires. She burped milk out of her tube, pulled 12 feeding tubes out a day, smacked the cardiologist, kicked the doctor delivering her, and had a dummy weeks ahead of schedule, she was even trying to root the breast.

Little Diva. 
(The brightness of the photo shows just how sunny it was outside, her first bed was by the fire exit).

There is a well known quote in the baby loss community, about babies who die in the womb never feel pain only know love (something along those lines). It struck a chord with me.
I have no idea if she was in pain, particularly in her final hours, she went through so much in her final 6 hours, she didn’t have us. I cannot forgive them for not phoning us sooner. I can’t. I’m allowed that little bit of bitterness.
I worry she didn’t know that we were her parents, I was her Mummy, looking back I sometimes wish (had we known she was going to die one day, which we didn’t), that we’d not had so many visitors in, just grandparents, that we had kept her to ourselves our little unit, to not have let anyone else come to say goodbye. Too much went on that final day so many, many regrets that we can never ever change, but cannot ever be forgotten.

I bloody miss that girl so much, I just wish people would understand, or at least try to understand.
I am not the person I was. I am never going to be. You cannot expect us to.
I guess we cannot expect understanding either.

I’ll never be able to comprehend any of it. 
It feels like she is memory almost forgotten.

Rather than a party today, and a living room full of paper, we had lunch at a local pub which has some how become a traditional place to have her birthday lunch. We usually have a family and friend get together, today it was just us. It was perfect, we’d been to visit before hand took her some flowers.

Before the judgmental thoughts enter any heads, they always like to have a photo with her, it’s sweet

Today is her day. 
Her birthday. 
Today she should have been Five. 
Would have given anything to kiss those fingers again..

Stages

Denial. 
Anger. 
Bargaining. 
Depression. 
Acceptance.

The stages of grief.  
The stages that once all are completed, everything is better.

In almost 5 years since our daughter died,  I have stepped and paused on each and every stage. 
Several times. In no order, but they’ve all been met,fought with on occasions. 
Most people know the stages,  and in the beginning in my head, with all the time healing quotes,  the obsession of time I had as the weeks rolled by I would attempt to tick the words off the list in my head.
Denial – ✅ 
Anger –  ✅ 
Bargaining –  ✅ 
Depression – ✅ 
Acceptance – ✅

All completed.  

Only something would happen, a trigger, a thought; then one of the stages would hit again.  Not all at once or again in any order. 

I’m currently in yet another run up to a birthday without the birthday girl, the remembrance weeks of when she was alive, and real, then of course the anniversary. 
Each of the above arrive in waves, each wave named after each of the grief sections. 
Looking through photos of her, which isn’t something I do often, maybe for a project or, well I don’t really need to justify myself the times I do, I can’t quite get to grips with how she died, this baby, tiny little baby who gave us a smile, fed, pooed..how she just died. 
It isn’t about acceptance or a denial thing, lets face it none of the five titles really are equipped to be included in baby/child loss. 
I know she isn’t ever coming home, that she is dead, we all wish that weren’t true. It is comprehending such a thing happening. 
Even now, looking at her photos, I still cannot believe this happened to us. 
Yet you still get people say “It happens for a reason.” 
I think this is probably where the anger part comes in to play. 
Every year these run ups to dates bring the waves, since the turn of the year, I’ve hit a couple of them, I’ve now come to realise that this time of year is difficult, how can it be anything but? 
Some waves are rougher than others, nothing it seems is going to change that. 
For me the firsts were extremely painful, full of overwhelming ‘what the fuck just happened’s’?
 The firsts are the worst bit. But then it turns into the seconds, when you can no longer include them in the year, or say “This time last year.” 
The moving on of folk who offered mere condolences, life goes on. 
The stages for those who don’t feel the full ripple effects, can be ticked off the list. 
It is time to move on, “it’ll only make you sad…” Another of those beautiful quotes. 
I’ve found time hasn’t healed a thing, having spoke to others they feel the same too. Hitting this 5th year has floored me somewhat, it is such a significant number, I just didn’t realise just how important the 5th year would be. 
I’m back to the feelings of
 Denial. 
Anger. 
Bargaining. 
Depression. 
Acceptance.
Stroppy Bitch Syndrome,
Too many time limits.  Too many tick lists.
I’ve added one..
That’s me, around the same time each year, I guess there comes a point where I just can’t tolerate, little annoyances,that are probably not even that annoying.
Patience is incredibly thin.

It is such a hard thing to explain why.  Watching friends’ children turn the age ours should have done, it is such a happy event,  but it is so bittersweet,  filled with many emotions and thoughts.
Buying flowers for a child,  cards that will never be read.
It isn’t surprising that I end up with stroppy bitch syndrome.
But I do hate the feeling too. But I know once the heaviness of the next few months lighten, then my patience expands more.

There is certainly no black and white when it comes to the stages of grief, they certainly don’t disappear once you’ve completed them.  Let’s be honest they’re not exactly an accurate quide, or at least for me I don’t think it is.
These waves are crushing don’t let me paddle alone.  I don’t want to drown. 

What I have learned in Five Years

Five years in the scheme of things doesn’t seem a lot. 
A 5 year old human is still growing, learning and a long way to go before they’re ready to face the world as an individual. They’re so young.
A car which is 5 years old also has so much more going for it, more miles, more adventures. More places to be.
It just isn’t very long. 
But to me five years seems almost like a life time ago, far too long to remember everything about her. 
But if she’d still been here, she would have been almost ‘just’  five years old.
Since April 2012 I’ve learnt so many things, things I never would have imagined learning. 

1. I was told in the beginning I’d never be the same person again.  I didn’t want to believe it, she’d only been here 5 weeks how could she change me, us so much. 
But at the same time why wouldn’t it have all changed us.  You can’t expect anyone to grow a baby, a child love, bond, feed as you would any other baby, for the baby to then die.
To have to decide “what’s best” when removing a ventilator, to watch their life leave them, to organise an event that should only be set for the elderly,  a burial or a cremation for the child you bring into the world.  Tiny coffins and holes in the ground.
It isn’t not going to have lasting effect.  You can move forward to a degree, but you’re just not the same. 
I look at people differently, I have to pick conversations with people, so not to offend them, but mainly to not alienate myself. 
I have to pause when answering parenting questions like how many children I have.
I see the world differently. EVERYTHING changed. 
2. Time is not a healer.  It really isn’t. I’ve section scars that will never go, they will always be there.  We will always be minus one.  For me the further away the harder it seems,for me in particular this 5th year. So many missed milestones, never started school, or had birthday party invitations, not knowing what things she’d have liked, who her friends could have been.  Pictures made with love.  I’ll never be “better” because I wasn’t ill. Time has just added to the crap that goes with all of this. 
3. Grief Tourism exists. The rubber neckers.  The people who only want to know or speak to you due to their own personal nosiness. People who want the grief for themselves, it’s a bizarre thought I know, and I’ve seen it done for adults too,  but those who somehow want a piece of the action, which in turn the grieved ends up being the supporter.  Which isn’t right,it’s not how it should work. It isn’t a sightseeing trip. 
4. It is a complicated type of grief,as I have mentioned before, the grief I had for losing my Grandparents, losing my Dad is so different from the grief I have for Melody.  The first thing I can think of is I could breathe when they passed away, their deaths weren’t easy,  they were incredibly hard, I do think of them at birthdays and Christmas, but Melody’s death, is something, although I speak about so much is not something that is really easy to explain in perfect detail either.  We’ve lost a lot over the years, friends, relationships with family.  Not something you’d expect when you lose a baby, you’d have thought the opposite. But we have gained people too (which you’ll see in a moment).
There’s so many times when your brain wanders back to the time of life, of normality, there’s nothing to stop it, it is a nice time to remember; but then you get to the part where you think you could change things, but obviously you can’t your heart stops for a millisecond for a short moment you’re back to the beginning again.
Nobody truly understands, unless you have / are going through it.
As much awareness, with premature births,  causes people only listen so much.
It’s complicated.

5. Online Support is wonderful.  I’d met my husband online, but never imagined to meet lifelong friends via the Internet too.  Some were from Melody’s pregnancy, when I was suffering with HG unable to face the world, and people didn’t have patience with me either,  the friends behind the screen became my life line.  Together we went through so much, not just my own loss but others too,  then the pregnancies that came after.  When for me once again the HG took hold and they were there no matter what.  This included the women I’d met through bereavement forums too.  Without them I’d have no idea that what I felt was indeed normal, and actually I wasn’t alone in these thoughts.
I will always be grateful to these people,  I’ve met a couple of them, two are God parents to the littlest ones.
I never knew online people would become my people..

Five years is far too long to have last kissed her.
But not enough time to have healed.  Maybe not even forever.  

A photograph.

In parenting there is such constant competition.  
My baby took their steps before yours.  
My child read a whole book before yours. 
I’ve done so much more as a parent than you. 

It is hard to know that even in the devastating community of baby and child loss that even then there is some kind of competition.  
There shouldn’t be.  

I remember feeling particularly bad because all other baby loss mums had a shelf or something in their home to remember their babies with, I didn’t.. But now I have and I don’t really like it.
Over the course of the years there’s been a lot of mention about the quantity of photos I have for our daughter, the clothes, the memories we were able to build. 
How I’m lucky I got to spend time with her.
How lucky to have a “million” photos of her. 
(of course it isn’t a million, maybe just about 50).
I know it is 50 more than other parents, but it also 50 less than others too. 
I feel sad that I am made to feel less because I have these photos, these photos like I said others may not have. 
When the first photo was taken, not by me but some random nurse, I’d not even met her, I didn’t know that the photo that arrived in my room was the only photo I would have knowing she was alive at that point. 
I was stuck to the bed on drips, body still numb, still really poorly and I was desperate to see her, to know she was OK. 
John went to see her, midwives went to see her EVERYONE went to see her, they returned with photos and even a video. 
They’re precious to me.  The first few photos at that point were the only things keeping me going. 
Once she’d come off the ventilation, I knew then I needed to document everything about her journey. 
Her life, because at one point, she was coming home, these photos were meant to be her story to tell her at her 18th birthday.  They were never meant to be.

“In Memory of.. “

I have empty folders of days I’d not photographed or days where I wasn’t allowed to visit.  To me now that kills me that I don’t have every single day of her short life. 
She was not meant to die. 
I don’t have cuddle cot photos, or bed sharing photos, we didn’t get chance to spend extra time after she died, we didn’t get that option.
So when I share the photos I have it isn’t to hurt anyone else, for attention,  it is because it is all I have, I don’t expect other people to comment on “how lucky I am to have these photos”.
I hear this often, as well as “at least you got time to with her”.  Same with everyone else it was never enough.
Well because if I had a choice, the same choice anyone in our situation would have, I’d swap the photos for her any day. 

Every single baby/child loss parent is in this shitty time together. Nobody’s journey is worth less than someone else’s because of how different the situation is. 
I’m not lucky I got to spend time with her. 
I’m lucky because I GET to be Melody’s Mum, no matter how long she lived.
This photo is her second photo, (her first she is completely naked flat out in her incubator).
Here she is Two Hours and Fifteen Minutes old. There are a few taken close together. 
At these moments I did not know how many more pictures I’d get. 
Whether this would be the only way I’d have seen her alive, 
I didn’t know a thing, apart from she was stable. 
But to me it could have meant anything. 

This is her second from last alive, (her last is with the three of us broken beyond repair, watching the vent being removed from our precious daughter).
When this photo was taken, she was 34 days One Hour and Ten minutes old. 
We had no idea that she would die. 
We had no idea that this photo was going to be the final one of our then normality. 
We had no idea that this photo would turn into a part of a memorial. 
We had no idea that LESS than 24 hours after this photo was taken she’d be dead. 
We have photos of her after her heart stopped beating, and in the chapel of rest, only but a few have seen that one (the hospital ones only myself and John have seen those). 
I cannot bear to look at them, this may sound particularly ungrateful to anyone who hasn’t got photos, 
I can’t imagine that loss, that feeling. 
But to me Melody is so like her sisters, and even her brother at times, seeing her in such a devastating way, only reminds me, not just of the loss of Melody, but the unimaginable anxieties that come with being a bereaved parent. 
I don’t just see her, I see them too. 
I cannot imagine ever not having photos, or for the parents that couldn’t have a footprint…because there are footprints just too small. 
But please don’t make my memories, my pain any less because I do have the photos. 
Because if I could choose to have any of this shit, I’d have chosen not photos and no footprints just to give her one last cuddle and one last kiss. 
I’d have never let go. 

What If

On their own what and if are insignificant, tiny little words.
But together are heavy reminders of things that might have been. 
What If. 
What if is something that is engraved into a person when they lose someone they love, of course not just a baby, so many missed opportunities, occasional regrets. 
What If. 
When I lost Grandparents, a parent there were many what ifs but over time for me they have passed, my Nan had Alzheimer’s Disease, so sadly inevitable that we’d lose her at some point. She had days where we visited her, spent time with her thinking, that would her last day, but when it came her final moments she sent alone, I missed her last breath by moments. But in all honesty because the disease hadn’t taken hold for me there wasn’t really any what ifs. 
When my Dad passed, it was sudden, for a time there were the usual, What if he hadn’t taken my brother out? What if he’d been at home, or surrounded by people? Would there have been a chance for him?What if my relationship with him was better? So many what ifs, but in time they have faded, occasionally they creep up, but they never feel like a punch in the gut; like the What Ifs that come with losing Melody. It doesn’t mean I loved my Nan or my Dad any less, it just really means that the grief over the three are so different, for me incomparable. 
Even almost five years down the line, the What ifs, the questions are still as clear and as painful as the first days after she died. 
For me even her birth presents these questions in my mind.
I was ill, I felt terrible but I often question whether there was more, to go through the events leading to her birth, of course these were answered with just how seriously ill I was, moments from seizing, but still; 
What if there could have been more to be done?
What if I hadn’t had a peanut butter craving?
What if I hadn’t brought the pram in the house?
She was the only one I ate peanut butter with (or peanuts in general), 
she was the only one we had the pram in the house. 
Of course those are silly ones, to you maybe but to me they’re huge.
What if I hadn’t had the car accident in the beginning? 
I was about 10 weeks pregnant when I wrote off my car, I still see the man who caused the accident, and still wonder if that was the start of it all.
What if we had been phoned sooner? 
There were little things that we noticed that the nurses hadn’t, not all bad, not because they weren’t doing their jobs, but as her parents we saw things that they didn’t always notice, maybe we could have spotted something that night. 
What if there had been more staff?
What if we had been asked about the eye procedure? 
What if we’d refused?
These are just a few. 
So many questions that are still as clear as the day she left, some answered, some not. 
Some still cause our hearts to skip a beat at how different the outcome should have been had things been done differently. 
What If I had done more?

Why do I keep on, keep punishing myself? 
The simple answer is I’m not. 
For me it is part of my love, my journey I have with the girl who couldn’t stay. 
Our Daughter.