Tag Archives: awareness

melody and me

It Is Okay To Cry

I don’t cry for Melody a lot these days; I certainly don’t when amongst people. I’m open about our loss, about my grief; but the tears for me I prefer they fall in private, more I think because often society gets frightened by tears, by emotion.

When tears particularly of sadness show, head tilts and the comments of worry.

“They’ve been crying again.”

“I’m sure they should be over all that now.”

“They’re obviously not coping.”

“They should get help.”

 

Crying is okay, sadness is okay. They’re both more than okay to happen.

There was a charity event in aid of two charities; one of course is very close to my heart, involving Melody, out of nowhere the day made me feel incredibly emotional, it was an overwhelming feeling on how well the day was going.

I never expected to begin crying, I never expected it to remain like a cloud hovering over me for the rest of the day. I hadn’t felt that way in such a long time.

I get a tap on my shoulder to tell me my son was also in tears. As I did my best to remove him from the eyes looking at him, at us his tears turn to sobs; I knew then they for him were a release. They were loud, and so perfectly natural.

My children also rarely cry over their sister, they speak of her always, but never with sadness. He just let go so much, I could see in his face it was such a relief for him. He loved his sister dearly, although together for such a short time they were close. He, along with his older sister and us we all hurt over the loss over this girl, a loss which is incredibly complex, and so terribly misunderstood.

Having these overwhelming bursts of emotion means nothing of being strong or of signs of weakness. But of just how consuming the loss of baby, a child can be. Grief can pull you under, making it incredibly hard to breathe; I now know it will pull me back to the questions, to the complete brain fog of wondering how the hell we got from this tiny cuddly baby, to doing things for her in memory of.

People have often said they’re always worried about bringing up the name, or a memory of a loved one; this is very much the case where baby loss is concerned, for fear of making them cry. We’ll never forget who we’ve lost.

But there is nothing to be feared in crying, there’s nothing to be feared in mentioning a name.

Crying is good, whilst the reasons can be the ugliest things in the world, watching pure sobs, as I did with my son at this event, as I held him tight to my chest, I found it can be the most beautiful and uplifting thing to see, the release is empowering.

Children are incredibly versatile, I know today for him is a far better day. For me it’ll take a few days to get my head around things, I find the strength of these emotions very draining. But I will be okay.

I always am.

baby loss awareness

I Tried To Keep Her Safe

Decisions

We chose to not have a Post Mortem right from the beginning, we felt she had been poked and prodded enough, particularly her final few hours; we wanted her to be left.

Do we regret this decision?

Sometimes, yes.

It was initially thought that a condition called Necrotizing Enterocolitis – N.E.C, had taken her from us, that being premature could have been a probable cause, so these reasons swayed us against having a PM. It wasn’t until meetings and then a Child Death Review months later we questioned.

Did we make the right decision?

August 2012

In August 2012, a group of health care professionals gathered together in a room, a room we weren’t allowed to go, all we knew was the date, which she would be discussed in great detail.  Some of these health care professionals had never met her; they had records of words and figures, a timeline of events but had never met her. Talking about her whole life, in a clinical way, she was down as a number.

Only she’s not really a number, she barely makes any statistics. Statistics for me are important, it gives her some kind of inclusion, even if it is something we didn’t want her to be a part of.

Back to the meeting, I remember we spent the day clock watching, wondering how she did; almost like an exam or something she needed to pass, we had no idea on what we were expecting, answers to help with closure I guess, although five years down the line I don’t think closure is really ever that easy, nothing about this would ever bolt shut.

An email arrived, the words gently filtered through, how they discussed her life, how they discussed her death. It took approximately two hours.

Processing

Less time we got to process the fact that she was going to die; less than the time it took for the infection to spread which killed her.

The infection which we learned was Sepsis swamped her body, her CRP was of a level that was far too high for even an adult to have coped with (or at least that was what we were told).

She’d had a couple of blips leading up to her death, she’d had these previously but she always, always recovered.

It was this that gave the factor, that had antibiotics been administered sooner, the outcome could have been so much better. Everything could have been so different.

Tiny things, which we’ll never know if it would have saved her life.

Something that made her death preventable.

Keeping her safe

We did –  I did everything I could to make her safe, I did all what the guidelines told me to, reported movement changes, reported changes in my own body. I rested when I was told; I remained in hospital when I was told.

I expressed milk, we visited, we spent time with her, we stayed away when we were asked, we did everything we were supposed to. We listened and got excited about the discharge date,

Yet somehow, five years from having my third child I am writing in memory of her.

Everything I did to make her safe just wasn’t enough. I’ve stopped beating myself up, and focusing the blame on me. But closure is harder to find. I’ll always search for the what ifs, I know it’ll never change anything, I am not hurting myself –  maybe I am, but I’m not hurting anyone else.

Changes

Her death meant changes to the Neonatal Eye Exam which made her poorly.

Her death meant that there should be more staff on, especially a lead nurse on in the PM shift.

Her death has meant looking into timescales around Sepsis and when to treat, to empower staff to contact other members of staff in shorter timescales.

I just wish it hadn’t been her to have made these changes.

I just hope she has been able to save at least one family from the heartache we are living with.

 

Capture your grief

Capture Your Grief 2012 Day One: Sunrise

Today the project begins with Sunrise. Which for us is very apt, the day Melody was born 26th February 2012, she brought the first of the Spring Sunshine. 90% of the 35 days that Melody was with us the sun shone, even wearing Flip Flops and vest tops, that time of the year, seemed crazy!
Weather had become one of the two things I became obsessed with in the first few weeks of losing Melody. If it rained I knew it was Melody’s way of reminding us of her, playing with the hose pipes, or turning on the heat lamps when (or if) the sun shone.
Today is also 6 months since we we’re told she wouldn’t survive. That she would in fact never come home. Our lives changed forever.
So here is my first instalment of Capture your grief, isn’t particularly done well as we don’t really have the beautiful sunrises that a lot of places have, Plus we’re surrounded by buildings, so here is the start of a sunrise
capture your grief s
Take two tomorrow