Thursday, 31 October 2013

The beginning of Harry

Today is Halloween.
By the way I love Halloween. I make a huge deal of out it and for me now it's a bit of a distraction about what follows on 1st November.

The 1st November 2011 I discovered I was expecting Harry. I will remember that day forever.

I has taken test after test as I was late and they were all negative and I couldn't understand what was happening to my body. That day I was at work and came home for lunch and I'd bought a pack of tests from the supermarket. Anyway I thought it wouldn't hurt to take another test and there we had it. A lovely positive test.

Anyway that day stuck with me as although I was really happy to be carrying another child, my mind started to fill with "what about..." Scenarios. Like what about William, how will I cope with two, what about my job, how will they react, what about our families, how will they react so soon after William? Then after that I started worrying about every little thing and worked myself up.
My work were a huge pain in the backside and tried to fire me for being pregnant which was insane and I also wound up in hospital with hyperemesis.

The pregnancy was a tough one and I never felt like I could bond with this baby. I always had a feeling of huge fear that something bad was going to happen but no one took that seriously.

A girlfriend reminded me recently of the time she'd seen me last which was before Harry had been born (I went into hiding after losing Harry until giving birth to Florence so if you spent time with me in the meantime frankly you are one of a few!) and she told me about how I just knew something bad was going to happen. Strange. I'd forgotten that. The shock of it all has made me forget quite a few bits.

I can also remember vividly the day before I had Harry and the fear of what was about to happen. We had been shopping to get the final things and Harry's dad had had enough of me worrying about everything that we had a massive row and he ended up going to sleep and I ended up downstairs doing toe massive baskets of ironing to take my mind off it all. I just felt like something awful was around the corner and everyone felt like I was being a drama queen. So much so I didn't trust my own instincts.

So tomorrow marks another day in my Harry anniversary calendar. The day his life began for me. The day I knew he was existing inside of me. A mothers love starts there.... And my love for this little man will always be. He is always in my thoughts and in my heavy heart. Things in my life are certainly more positive but that heaviness of loss will always be my sadness to carry.

Thinking of you more than usual tomorrow sweetheart x x x x

Wednesday, 30 October 2013

The big day

Today was a very important day in my journey with my promise to Harry.

My promise to Harry was to keep his memory alive by helping others. Part of that promise was to make sure fewer babies lose their lives to vasa Praevia, by raising awareness and trying to get somewhere with a routine screening programme nationally.

If you read back in my blog to "Hospital Debrief" you can read about the first time I realised that what caused Harry's death could be screened for.

Since then I have been on a journey. Many media opportunities and many letters and phone calls with various bodies has bought me to today. A meeting with the UK's National Screening Committee. They have conducted a review on vasa Praevia and whether or not a universal screening programme should be ruled out.

Well they have decided a universal screening programme right now is not applicable as there isn't enough evidence in the identifying, and monitoring areas as it is such a rare condition. However today they have decided to bring about screening the "at risk" women.

I was so nervous ahead of the meeting, knowing there would be representatives from the Department of Health, the Royal College of Obs & Gynaes, the Royal College of Midwives etc. I felt truly honoured to be in the room today listening to professionals who want to make a difference and see the lives of little babies saved.

I didn't contribute much to the meeting as I do not hold any medical training or indeed do I know enough statistically about the condition to put up a massive argument with someone who truly knows their stuff. But to listen and be a part of a change was humbling. My son Harry has bought this passion to me, to give those babies a voice and to stop them dying needlessly.

I kept thinking about Harry and how if someone had only taken then time to diagnose him then I wouldn't be there in that meeting. I would be at home with my two boys. He would be big now. He would be having so much fun. But doing all this good has made me so happy, and fulfilled. Would I be happy if life had been so different? Who knows.

The screening committee has taken small steps today and I am very proud of our journey. But I want to thank everyone who has been on this journey with me. I have been very lucky to have massive support, on FaceBook and in "real life". This journey has bought new people into my life and made relationships closer, and shown me some new wonderful friends. Thank you everyone who has and still are part of "Harry's Army" helping me to raise awareness of this dreadful condition and make a difference to other families.

And those of you who helped me find my confidence when I needed it most over the last few days. Thank you. You're amazing xxx

Monday, 28 October 2013

Smiling through tears

It has been a long time since I have felt this happy, and I am so grateful to feel happiness again after such a long time of darkness.

I feel guilty for feeling happy, as I think of Harry and how he would never know conscious happiness. My counsellor used to tell me that Harry only knew happiness, as all his life, inside my tummy and his short time with us, he was always surrounded in love. I like that thought and I carry that with me.

I feel like I have my old self back, a bit more confidence and a bit more fun.

I feel happiness bursting out of me when I look at my two beautiful children. William is such a darling and says such loving, sweet things. And Florence truly is a blessing. Such a happy baby and so cute and gorgeous.
But when I cuddle her, and feel such amazing love for her, I can't help but burst into tears. I miss Harry. Watching Florence grow and change is so amazing, but Harry will never be more than my newborn Harry.

Sometimes I can't beleive what I have been through. My own child has died. I wish I didn't have to have these memories.

When people look at Florence they ask me is she my first? I always say she is my third and hope that the nosey old people will be satisfied with that. The other day in the doctors, I had a lady ask me how the other children like Florence. I said "they love her" and hoped that would be it. Then she asked me their names. My god. I know you're just being interested but....! I told her William and Harry. Then went back to my magazine. Then she said "How old are they?" Ugh, now I have to tell her the story. I am ok with telling the story. With the work of the Trust I have to do it all the time, so it's ok. I told her William is 3 1/2 and Harry sadly died. She asked how old he was when he died and I told her he was just over a day old. I know it must be hard to be told that a baby has died, especially when it is not spoken about in public. She looked so uncomfortable and asked what happened. It was pure disbelief when I told her, almost like I was making it up. Man, I wish I was.

Others say, oh one of each, you're very lucky. Yes. One of each here. And I have an angel watching over me too. I am very lucky. But my heart is broken. I had to kiss my son a final goodbye. No one should have to do that.

Some say, at least you have Florence. Things are better now. Like she is some kind of plaster, covering a huge wound. And I am always grateful for Florence. She really is our rainbow. But the devastation of the storm won't ever be completely cleared. Harry has left a massive scar, but I don't want him covered up. Some people don't understand why I don't just tell people I have two people to save those awkward moments, but to me, that is denying Harry. He is a part of our family and I think about him every single hour of every single day, so I won't lie to make someone else feel more comfortable.

So yes, smiling through the tears. Happy times after sad times. But sadness coming through the happiness. It's a bloody tough old ride.

Friday, 25 October 2013

A different life...

So I've started referring to my time before becoming a bereaved mummy as pre-Harry and after as post-Harry. The difference in my life is staggering. Aside from the obvious trauma, shock and true sadness my life has changed immensely.

Last week I found myself short listed in two categories at the Butterfly Awards, an awards ceremony recognising achievements in the baby loss world. It was a real honour to be there, amongst others who understand. I didn't win but after the initial disappointment I have used the inspiration of the other finalists to drive on my work for Harry's Trust.

We went to the awards with two lovely friends and it was so nice to spend time as me not someone's mother and enjoy myself without having to think feeding schedules or bedtime routines. It was lovely to have adult conversations and to hear about other peoples lives.

I am also going this week to meet with the National Screening Committee to discuss the screening programme for vasa praevia, alongside the Royal College of Obs & Gynaes, and the
Royal College  of  Midwives amongst others. I have no medical training so I am obviously nervous about the meeting but this is one of the most important days in my work since losing Harry. When I was told at our birth debrief at the hospital that the condition that cost Harry his life could be screened for but isn't - I made a promise to Harry that his life would not have been lost in vain and that no more babies should lose their lives unnecessarily.

And the rest of my time when I'm not taking care of my two kids and running a home, is spent organising our objectives for 2014 and planning our huge annual fundraiser which is at the end of next month.

My life pre Harry was less emotional and much more innocence and happiness but now I am busy trying to keep Harry's memory alive, save other babies from dying needlessly and helping others who experience the pain of losing part of them.

My life post Harry is crazy busy but he has given me such a wonderful  new direction . I feel a real sense of purpose.

In my life post Harry are some amazing people. I have been shown my true friends. Those who are there no matter what. Those who genuinely care. Those who will listen, and cry with me. Those who celebrate my triumphs with equal excitement. Those who understand exactly, and  those who don't understand but will hold your hand  and  care.

How blessed am I to have these opportunities and such wonderful people to share them with.

And that blessing is Harry. He has made my life this way. I miss him with all my being,  my heart aches for him. But he is doing so much good and I am so proud.

Tuesday, 8 October 2013

Since My Last Blog Two Months Have Passed In a Flash

Time is just whizzing by at the moment. 

Who can believe Little Pip will be 12 weeks at the weekend? 
She sure is our little miracle and we are so thankful she is here with us. 

Since writing last we have discovered that infact I didn't have dodgy blood as I was first led to believe. The reason they couldn't fathom why I had such a high level of fetal haemoglobin was that my beautiful daughter had bled across the placenta into my blood stream. 
Thank goodness I pushed for her delivery as I was told by her consultant that she lost approximately 200ml of blood, which given her total blood volume was 350ml at birth she'd lost nearly 2/3 of her blood.
Here are two newspaper articles about Florence's story:
After seeing Harry so poorly after a catastrophic bleed, I keep thinking about him. 
I look at Florence and pray that her bleed hasn't affected her long term. 
Harry and Florence are identical babies:

They are similar in so many ways....

So you can understand that when I look at Florence, not only am I so grateful that my little girl is here with me after all her and I went through, but I am constantly reminded of Harry. I am reminded of his experience and his time with us.

 When I cuddle Florence and am bursting with pride, I am also remembering my only cuddle with Harry. I am remembering how sad I was that I was saying goodbye. Trying to fit in a lifetimes worth of memories into a few tiny moments. Harry has made me truly appreicate every minute I have with Florence.
I know so well how it feels to have your loved one snatched away too soon.

Harry gave me so much in his short life.
He taught me empathy.
He taught me patience.
He taught me to appreciate the small things in life.
He showed me my real friends.
He showed me my true path.
He bought my family closer.
He gave me my daughter.

So two months have passed since my last blog, and I haven't blogged not for lack of things to write about, but from literally being so busy I have barely had time to scratch my head! But things are well and little Florence has bought a very happy ray of light through the very dark clouds. She is our wonderful rainbow.

I am going to try and  get back to writing every week or every two weeks as it helps me and I hope it can help others in some way too.