Sunday, 29 June 2014

Sweet Are The Uses of Adversity

"Sweet are the uses of adversity,
Which, like the toad, ugly and venomous,
Wears yet a precious jewel in his head."
William Shakespeare - As You Like It

As regular readers will know I was diagnosed with Post Traumatic Stress Disorder in 2009 shortly following the birth of Joseph. I was a mess, I had nightmares, flashbacks, was constantly on high alert. In my head I had my childhood and Joseph's confused and was constantly frightened that either he would be emotionally scarred by being abandoned in hospital, or that someone would hurt him now or in the future. It wasn't as "simple" as almost dying myself before he was delivered and nearly losing him.

I do think we are so quick to label condtions. I wonder now if the label "you have a disorder" and the reaction "let's medicate" was the most appropriate one. What I really needed was to be wrapped up in love, and cared for. I needed to heal, and to be reassured that a lot of what I felt was actually entirely rational and I think if I'd had CAT (cognitive analytical therapy) or CBT (cognitive behavioural therapy) earlier, a lot of the protracted pain and symptoms I have had endured, and my family and friends have endured, could have been mitigated. Was my reaction a "disorder"? A difficult childhood, a life threatening condition, my only child in danger? Was it that "disordered" that I be frightened of something else going wrong in my life?

There is no doubt that out of the trauma of premature birth and pre eclampsia so much good has happened to me, that it was heartening to read this article during the week. In it Bob Clark refers to these 5 positive changes found by Richard Tedeschi at the University of North Carolina

• A renewed appreciation for life
• New possibilities for themselves
• More personal strength
• Improved relationships
• More spiritual satisfaction

I'm not quite 5 years on yet. The trauma for me was the separation from Joseph more than the birth or the other events in his stay, this I now know and understand, for to be with your baby is the natural thing, any separation no matter how logical, is deeply damaging for the mother. I believe the baby adapts, especially if attachment is as strong as possible during the stay with good family centred care and most importantly after return home. This is where we need to work hard, to give parents that confidence, and to help them heal when they come home.

I can certainly report that I whilst I have suffered Post Traumatic Stress Disorder, in far more measure have I experienced Post Traumatic Growth. My life now is vastly different than the one before I had Joseph, as anyone who has had a child would report. But my "self", that thing that makes me me is vastly different too. I am more confident, I have skills I didn't have before, and I have all sorts of people in my life I didn't have before.

I am happy, fulfilled and my life has purpose. And I have an amazing family.

Do I still have periods of crushing tiredness? Nightmares that wake me up in fear? Periods of panic attacks? Yes and possibly always will, but I can manage those and I have techniques and support.

And that's the reality of trauma, whilst it can crush you, and bring you to your knees, the most remarkable growth is possible.  Embrace your experiences if you can, get support, and most of all know that so many of us experience trauma and whilst it is hard, and it hurts, growth can happen.

On my other blog I have a fun post about gardening which you might enjoy

Wednesday, 18 June 2014

My Three Babies - Miscarriage Care

Joseph is an only child.

But I've been pregnant three times.

First miscarriage I had wasn't, as far as miscarriages go, that traumatic, in a strange sense. My then husband was unstable and violent, the baby wasn't planned, and he was furious. I spontaneously miscarried. My marriage ended. I was traumatised by it all. The miscarriage was just one brick in a wall of trauma. At the time, it hurt like hell, don't get me wrong, it all did.

My second miscarriage was deeply traumatic. With a new partner, the situation and timing wasn't entirely ideal, and I began miscarrying in the doctor's office having my pregnancy confirmed. This was in Australia and I was a private patient and it was sorted, a D and C and sent home. I had privacy, dignity and warmth. And $1000 shortfall in anaesthetist bills for 20 minutes work, but that's another story.

When I fell pregnant the third time I spoke to my midwife about my miscarriages "oh because they happened in Australia they didn't really happen."

I'm sorry what? I was hurt, scared, upset. And actually in retrospect, I should have been angry.

The thing is, this is largely indicative of how miscarriage can be handled in this country. Practitioners often don't know what to say. "Oh well at least you know you can get pregnant" one said to me. "Well you can go home and try again".

Even worse huge mistakes can be made, catastrophic things happen in miscarriage care that just shouldn't, that are too painful to even write about. 

To a medical professional a miscarriage may just a be a collection of cells, a fetus, but to the vast majority of women a miscarriage is a baby. You already have hopes, dreams and fears for that little being.
I later learned that actually, the fact I had two miscarriages and then early onset pre eclampsia could have been significant.  It's another of the reasons I wouldn't try to have another baby. I couldn't handle a miscarriage as much as I couldn't really handle another NICU stay.

The state of miscarriage care in this country is shocking. That's why I'm joining the Mumsnet campaign to pledge to improve miscarriage care by 2020.

Compassion, counselling, timely care, "caring care", care with real heart as well as good sound evidence base, is absolutely essential.

Miscarriage is brutal. Your body's betrayal, failing what it is meant to do. Don't let the system fail us the same way.

Please follow the link to see how you can help. 

Saturday, 14 June 2014

The Penny Drops -PTSD and A New Song

I remember when I was pregnant having some counselling, and the counsellor said to me, when you have a trauma things will stick in you mind, songs, movies, odd things. And these things will come back to you. I was having the counselling because I was still very upset about my miscarriages and this was causing me a lot of trouble when speaking to health professionals about the pregnancy that was causing me such anxiety.

When I think of Joseph's time in hospital I think of a few songs; Wires by Athlete, Fix You by Coldplay, or The Scientist by Coldplay, also a slowed down version of All My Loving by the Beatles.

Today these photos popped up on my Timehop.

The soundtrack that started playing was "Happy" by Pharrel Williams. Just look at my face, and Joseph's body language and his face. These pictures were taken 6 weeks into our journey. I had hit the wall. I was so fed up, upset, angry and annoyed that my husband took the day off to support me. This is a very un-Corey like thing to do.

Up to this point cuddles were incredibly dependent on who was on. I was never allowed cuddles when Joseph was on CPAP, and time off was often done at times I wasn't in. Not all nurses were confident handling him, and more to the point weren't confident in my ability to handle my own baby. The more experienced ones were fantastic, but they were taking care of sick babies. Joseph wasn't sick by this time, just the interminable feeding and growing.

The thing about neonatal stays is you don't know how long they are going to be until they are over. This was pretty much half way. Our release wasn't til the end of July.

On this day one of the younger but highly trained nurses said "of course you can have CPAP cuddles", fished him out, plonked him on me and left us to it. I even transferred Joseph to my husband's chest as well.

After this I never took "no" for an answer I would challenge respectfully, but honestly. "If nurse X was happy for me to have cuddles yesterday and you're not today, can you let me know what's changed?"

What I realise now was the only time I was truly happy in that time was when I was holding him. And that actually is correct. That isn't wrong. I was a mummy from the moment he was conceived and that came to fruition when he was born. It's correct that I was upset that there were barriers in the way and that at times I was prevented from being a mummy.

What isn't correct is that I still feel that way. It's going now as I realise that a huge element of my PTSD is separation anxiety. Both of us, Joseph and myself, have suffered from separation anxiety. We are both getting better. He has formed attachments with his classmates and his teacher. The problem at the beginning of the school year was that he hadn't learned to do this. Other children did this more quickly than Joseph. And that isn't my fault either. He just wasn't ready as quickly and we nurtured him through it.

I don't need to have separation anxiety now. He lives with us at home. He runs into my arms whenever he sees me. He knows me and loves me as his mother. And always has, and always will.

I don't have to suffer PTSD any more as the trauma is over.

It's going to take time and effort to retrain my brain, and CBT I think will do this. I believe, for the first time in 5 years, that I can be free of this.

And this is why.

Because we're happy. Even at 4.40 in the morning.

Friday, 13 June 2014

Mummy I Just Want to Be Star of the Week

Joseph's passage into school life hasn't been easy. I had given school lots of information, met with the teacher on a home visit, I thought I had done everything necessary to ensure a smooth transition. The teacher resigned two weeks in and we had an unsettled couple of months of supply teachers, then his new teacher started. I stupidly assumed that everything had been passed on to her. Rule number 1 assume nothing verify everything

I found out Joseph wasn't settling one afternoon in November, visiting a school drop in and was told in front of most of the class and their parents. There were concerns about Joseph, serious ones. We had a big meeting which I called, with the teacher, head of Early Years and the SENCO. Strategies were put in place and everyone started to work as a team.

Slowly but surely Joseph started to settle. A big turning point was May when his birthday was coming up he insisted on a party. I was going to just do something special with him, but no, he wanted to invite his friends. Friends. Joseph was finally starting to make friends after months and months of not being interested in the social aspect of school

His party was a roaring success and Joseph was happy. A couple of weeks ago we were walking to school and Joseph and said "mummy, I really want to be Star of the Week". I was surprised, he had never shown any interest in it before. I explained "you will have to work really hard and be kind, and caring to others".

Joseph seemed to take it in. Every week the teacher has had something funny and good to say. The funniest was "Mum mum I have something to tell you. Joseph asked me to read him a story, I was busy and explained what I was doing. He said "oh Miss you are a whingebag". " I was mildly horrified, the teacher went on to say "Joseph where did you get that word?" And I knew what was coming. The teacher giggled and said "he said "I got it from my mummy"" It could have been worse. Could have been you great flaming galah.

Today we picked him up from after school club and there it was, on his t-shirt. "Star of the Week". My lovely little boy who at the beginning of the teacher's year was "difficult, disruptive, hard to manage, far behind the others" is now doing just fine.

Not just fine, he's shining, like the bright star I always knew he was.

So for those of you with premature children starting school here are my tips.

1. Put all key elements of their story in writing
2. If your child has any idiosyncrasies or rituals write them down
3. If there are changes in personnel engage with them in a timely manner
4. Keep believing in your child and fight for them if you need to. 

Thursday, 12 June 2014

Fairfield Hospital - A Reluctant Return

I have complex PTSD. Complex isn't because it's complicated, complex as it has more than one root. I don't particularly like the term because it's misleading. The first stream is the abuse. I have worked incredibly hard in therapy last year, and I am much better. However as I have gone on it's apparent that stream 2 is alive and kicking. The birth of Joseph at 27 weeks, more specifically having a close call with a severe illness myself, and Joseph being so ill too. The most harmful thing about it all was being separated from him, something I still find hard.

Working in the field was at first cathartic, now at times it's painful. It's still very rewarding and I have amazing colleagues and volunteers but it isn't easy. It's not easy for anyone, to be honest. To be exposed to premature birth and sick babies, and their parents and those who are involved every working day isn't easy. But when your mind has wounds that haven't healed it's particularly difficult. I have embarked on medication again, and specific CBT fortunately this time funded through the NHS

My therapist recommended we arrange a trip to Fairfield Hospital. In a sense, this was pointless, in my opinion, as the unit isn't there so what was the point? I decided yesterday, as I had an hour after work finished and before I collected Joseph, to call in.

As the bus got closer to the Gamecock, the pretty pub in my little set of pictures, it started. My hands started sweating, then my neck, then my brow, my hair was feeling sticky. I started to worry about Joseph, Joseph the baby. I got off the bus and just stopped for minute, calmed my breathing and concentrated on correcting the self talk. "Joseph is on a school trip, he's having fun, he isn't a baby! I walked in the main entrance and again stopped and took stock. I popped my head into the shop, looking the same as it every did. Nearly every day I called in there for a drink, sometimes a medicinal mars bar. I haven't eaten one since.

I stopped at the handwashing station and sterilised my hands. Habit I guess, but it is a hospital and it felt the right thing to do. The smell reminded me of all those times, over a hundred, I walked up that corridor in 76 days. I remember the very first time, still as an inpatient, I escorted my church minister down. The return 3 minute walk took me 20 minutes, I had nothing in the tank and was so sore.

What hit me was noone knew me. In those 3 months I was constantly stopped by people, I got to know cleaners, volunteers, staff. Now with no maternity services apart from an antenatal day unit there is no buzz, hardly any folk around. I was stunned to see that antenatal and postnatal wards are both totally unused, padlocked.

And finally, the unit. Also disused, I have readded the  sign at the top of the door as it was blank. The old sign that I hated is still there. I hated being reminded that I had a premature baby, and I felt sorry for the many mothers who had termies. I peered inside. It's being used as a makeshift store room. The dreaded intercom no longer in use. How I hated that button. Waiting for permission to see my baby. Many times staff too busy to answer, me locked out separated from him.

The final picture is particularly poignant. When we were in Fairfield that building was a pub. Before we left it was shut down with "to let" signs on it. I told my husband if I had the money I would turn it into a cafe bar, serving coffee and cake, nice lunches, have it a nice place for people to go. And that's what has happened, without any investment from me whatsoever!

The key lesson I've taken from this is that this place has no hold on me now. I have avoided since Joseph was discharged from follow up. Any medical issues for any of us I have used choose and book to avoid it. Not because it's a bad hospital, but because of my memories.

So many of my memories are happy ones; the day Joseph had his first cuddle, took his first breast feed, his first bottle. The friendships I made, the camaraderie. Yes, there is sad too, babies lost, tears, oh so many tears, anger, frustration, guilt and failure.

But there is joy, so much joy and the joy is in our journey, now over 5 years long that 10 and a half weeks such a tiny part of the Joseph story.

It's time.