I'm still alive

Just in case anyone was wondering!

I have had a really bad time with anxiety, to the point of not sleeping for nights running and panic attacks but I seem to be back on track now with the help of citalopram and I was taking temazepam but I don't need it anymore.

We had our post mortem meeting at the RVI yesterday. The diagnosis is definitive but Ellie's case will be taken forward to the next meeting with the fetal med team, NICU team, geneticists and the post mortem doctor etc as there is still some questions regarding her enlarged heart. What Prof Robson and Dr Berrington did say was that without ARPKD, the heart would gave been fine so there isn't two underlying conditions, it is just this is not a typical feature of ARPKD and further information and investigation is required. They will also discuss the possibility of a CVS in future pregnancies which involves taking part of the placenta and looking for defective genes at 11-13 weeks. However, if they can't find the faulty genes on Lee and I or in Ellie's tissue sample, they can't offer it. This means Lee and I would basically have to take our chances and be monitored via scan with the possibility of late termination. It's a horrible thought and it breaks my heart. It hurts even more knowing that apart, Lee and I could hav healthy children. I'm so angry with the world.

To top it all off, I am aching for Ellie, desperate to hold her, knowing that I never will. I feel so alone in my anxiety and my secret feelings (that I really only tell Henrietta and my diary) and like nobody cares. Why would they? I mean, our parents have or can have other grandchildren from other kids so what does it matter to them if Lee and I don't have a healthy child? But it is killing me slowly and everyday I hate the world a little bit more, become more jaded and just don't want to bother with people.

What it means to be loved

A couple of ARPKD mums had posted this song on facebook and the lyrics are so apt...not the happy ending bit though :(


For five months and eight days my wife and I had waited
Gettin' ready for our baby girl
But when he called the doctor said I need to see you
and could you come in soon
then something died inside of me to sit with him and hear
the tests that said our baby may not live to be a year
then turnin' to my wife and he said "whata you wanna do?"
and she said...

I wanna give her the world
I wanna hold her hand
I wanna be her mom for as long as I can
and I wanna live every moment until that day comes
I wanna show her what it means to be loved

so we spent each day, watchin' every minute
and prayin' for our baby girl
and I will not forget the way I felt that moment
when she came into this world
but they took her from the room just as soon as she was born
and watchin' through a window I could see her holdin' on
when a voice inside me said...

I wanna give her the world
I wanna be her dad

I wanna hold her close for as long as I can
and I wanna live every moment until that day comes
I wanna show her what it means to be loved

I said everyday
we've got to bring her home
she's been out to prove the doctors wrong
oh and you should see her now
she's as pretty as her mom
and theres a boy at the front door waiting just to take her to her high school prom...

and he wants to give her the world
wants to hold her hand
and someday she may get a wedding band
but she's gunna live every moment until that day comes
and we're gunna show her what it means to be loved

Oh yeah (what it means to be loved)

show her what it means to be loved
what it means to be loved

Exhaustion

The anxiety is taking over...I am so tired, physically and emotionally.

I am so frightened of all the physical aches and pains, etc which make me anxious, which then causes the physical symptoms. I can't win. Going to see my own GP on Thursday hopefully to discuss it. I've been to see Henrietta today which is always insightful. Now I won't see her until the 23rd though.

I want to grieve without the anxiety taking over. The anxiety is harder than the feelings of loss. I am scared all the time. I feel so alone, in my fear, and in how I feel. Nobody understands me.

Talking to the moon

I think Bruno mars wrote this song for me

I know you're somewhere out there,
Somewhere far away
I want you back
I want you back.

My neighbors think I'm crazy,
But they don't understand
You're all I had
You're all I had.

At night when the stars light up my room,
I sit by myself,

Talking to the moon
Tryin' to get to you
In hopes you're on the other side
Talking to me too
Or am I a fool?
Who sits alone
Talking to the moon

I'm feeling like I'm famous,
The talk of the town.
They say I've gone mad.
Yeah, I've gone mad.

But they don't know what I know,
'Cause when the sun goes down
Someone's talking back.
Yeah, they're talking back.

At night when the stars light up my room,
I sit by myself,

Talking to the moon
Tryin' to get to you
In hopes you're on the other side
Talking to me too
Or am I a fool?
Who sits alone
Talking to the moon

Do you ever hear me calling?
'Cause every night, I'm talkin' to the moon
Still tryin' to get to you

In hopes you're on the other side
Talking to me too
Or am I a fool?
Who sits alone
Talking to the moon

I know you're somewhere out there,
Somewhere far away...

Progress

The past few days have been a struggle with the level of anxiety. Half the time it's a catch 22, because the physical symptoms caused by anxiety make me anxious something is wrong so I get more anxious. I think, for now, I've managed to break out of the cycle, enough to get some sleep with the help of my GP. My head was still banging and heavy with funny eyes but I have an eye test tomorrow, plus, after going to my mum's and being 'normal' for a while, it has eased off.

Sorted out my passport form, should be here in a week or two. Only a month to go.

Not sure what to do now. Get a job or not yet, start back on my uni work or not yet, concentrate on music or not yet? People say when I'm ready but how do I know? I really don't know anything except how much it hurts day by day, how much I miss Ellie and that she isn't coming back.