I have been very careful about talking to the press
Since Matilda Mae died
There has been a lot of interest in our story
And I have turned many offers down
I did not want the story to get twisted or diluted
I do not know any journalists
So did not have anyone that I trusted to get it right
When I spoke to the lady who wrote the article for Mother and Baby
We spoke for a long time
She was lovely and sensitive
I know that she wanted to get the story right
Not just the facts but the tone and feel of the piece
It is not easy to write about the death of a child
The loss of a baby
When the lady had written the piece she had to send it to the editors
We then had a read back over the telephone and a few key facts were changed
Today I have seen the article in the magazine
I am not sure how I expected to feel when I read it
I realise I am too close to the story to have an objective view
But it did not feel like I was reading about me
And there are a few things about the edited piece that I would like to say
Things that I would like to clarify
The article was written because last year I was nominated for Britain’s Bravest Mum
I wrote about it here
In two pages it gives an overview of our story
From battling infertility to premature birth
Raising premature twins
Having three children under the age of two
Losing one of them suddenly and unexpectedly to SIDS
Living after loss
I realise that ours is not the easiest story to tell
With a limited word count
But I wish there was more of me in the piece
More of how proud I am of all my children
More of our journey through NICU and SCBU
More of how special Baby Tilda was to us
And now is to hundreds perhaps thousands of others
But the main points I want to clarify are these
1: Esther and William are now nearly four years old not two. I adore them and know I am lucky to have them alive. It is not luck that they are as healthy as they are, it is the dedicated work of the doctors and nurses on SCBU but it is also the choices that David and I made about how we would care for them once they came out of hospital. The magazine article seems to imply that I carried on working after Esther and William were born and I did not.
I gave up teaching full time long before they were born, long before they were conceived. Our IVF/ICSI journey was not an easy one and I could not dedicate the time and energy my pupils deserved and so I gave up teaching my class, I have up my management positions and I moved to our village school to give one to one tuition to pupils in need. I worked a few hours a week throughout my pregnancy with Esther and William, and I did not return to work after the emergency surgery I had during my pregnancy with them.
David and I spent every single day of Esther and William’s hospital stay with them. I sat by the side of their incubators and cots, singing, reading and talking to them each day. David spent his time preparing our home and working every hour he could so that when the babies did come home he could be there for them full time.
When Esther and William came out of hospital we basically quarantined them through the autumn and winter, through the RSV season, until they were big enough and strong enough to face the world.
This was our decision and it meant that though we did not see many people our children have never been readmitted to hospital. Esther and William even now very rarely get sick. That is something I am fiercely proud of as it is not the case for all 27 weekers at all.
2: Tilda only crawled once. It was on the day that she died.
3: The night Tilda died my Mum was with us and David’s parents both rushed to us the minute we called.
4: When we said goodbye at the hospital, when we had that precious time with Tilda before we had to leave her forever. I cried so much. I could not think straight, could not hold her or do the things I know other mothers do. She was gone from her body, even then. All I wanted at that moment was my baby back. I begged her, pleaded with her, please please Baby Tilda wake up. I was not yelling at her, I was not angry with her, I was just utterly broken and I wanted my daughter back.
5: Esther and William did not race down for breakfast. They were only two and a half and still sleeping in cots themselves. When we heard them wake we went upstairs to get them and carried them down. Even now Esther and William are not able to race down stairs.
6: Esther and William even now have questions about Tilda and death and why babies die. Even now they sometimes mix up Tilda and the new baby growing inside me. Of course they do. The are toddlers. They were only babies themselves when she died. It was just a week or so after she died that we all got in the car to go to Granny’s, we had taken Tilda’s seat out of the car and Esther and William got upset as we loaded the car, worried that we were leaving ‘Baby Tiger’ behind. It was then for the first time that they repeated back to us, Baby Tilda died, Baby Tilda is up in the sky, We will not see her anymore. This still breaks my heart today.
Our whole sorry story just tears at my heart.
It is all still so raw and so painful and hard to believe that any of it is true.
7: I do not check on Esther and William when they are sleeping, not unless David is out. It is their brave brave Daddy that checks them each night. I have a panic attack if it has to be me. Every time I check, even now, I assume they are dead until I hear them and see them alive. In the morning, if one wakes before the other, I cannot breathe until I know that the other has made it through the night too. I am not sure that feeling ever will go.
8: “Over time, the rawness of my grief has slowly eased” I think anyone who knows me or reads my blog will know that these words are not mine. I do not feel that anything is any easier at all. It still hurts as much today as it did the night she died. My baby was stolen for me and I cannot ever get her back. 15 months on and I am still not sure I believe that to be true, I am certainly not finding it easier to comprehend or live with. It hurts like hell every single day. Every single day.
9: I am actually not inspirational at all. I am a very selfish mummy who wants her baby to be remembered and wants an answer to the question. Why my baby? Why our daughter? Why did Matilda Mae die? The people that might one day be able to answer that question for us are The Lullaby Trust and that is why I do what I do. Because one day, somoene might tell me, this is why she died and maybe, just maybe, in doing that, we will save some other little lives along the way.
10: I am just a mummy whose baby died who still has a chink of hope that one day, if I do things right, I might see my daughter again.
