Wednesday, 29 September 2010

Your specialist subject is...

The main reason I write about Monkey is that I can't say how I'm feeling, or what I remember, to many people. Friends and family want you to be okay and if they knew what was in your head, they might think you weren't. They would be wrong.

The other reason I write is that I think somewhere along the line (and hopefully for very few people) it might be useful for someone else to know that they are not alone in how they're feeling. A few weeks ago, a friend at work stopped me to tell me that his 5 month old, severely premature, nephew had died. He'd never been out of hospital and had been very poorly. He wanted some advice to share with his sister-in-law.

(By way of an introduction, my friend's daughter is 3 days younger than Monkey. He used to work for me and DJ'd at my wedding. He's the office clown. I remember having a chat with him about his career development and his suggesting we have a cup of tea. He confided in me then that his wife was expecting - something of a surprise. He was a little bit blown away and just wanted to tell someone I think. What was lovely was that I could confide right back, to being equally pregnant (albeit less surprised). When I returned to work after Monkey died, he was recovering from a stomach bug and was reasonably distraught that he couldn't hug me. He came back a few days later to do just that. The point is he's a lovely guy and able to ask questions like this. So many people, especially me (refer to previous blogs on shyness), wouldn't. For those who can't, maybe some of this will help.)

He wanted to know if there was anything I thought it would be useful for his sister-in-law to know. My advice (I rambled much less than this and the abridged version, I hope, was more practical and less emotional but this is unedited):

Linger if you can - you will be in shock. You won't know what you are meant to do. The medical professionals may be equally helpless. This is not something they experience every day either. You can't get the time back.

Do think about whether you want to go and visit your baby or child. Try to talk about this with as many people that you're comfortable with. Ask questions like 'what will it be like if I do?'. We didn't visit Monkey. I was reasonably adamant about that. I'd said my goodbye at the hospital. I'm not sure anyone could have changed my mind but, when I look back, I'd perhaps like to have made a more rounded decision, based on fact rather than supposition. Having spoken to other Mum's, the majority visited their child at least once. All of them prepared them for their burial or cremation. That is my one regret. I didn't get Monkey ready for 'bed'. I gave his pyjamas (and socks - he always had cold feet) to the undertakers to get him ready. I forgot to give them a nappy. I realise that's not important but to me, afterwards, when I thought about it, it was odd. He'd always had a nappy on. So talk about it, if you can, it might help you remember something that you might otherwise have forgotten.

Be selfish if you need to be. Choose to see people or not to see people. Chances are, everyone will want to see you to check you are still ok. To an extent, we did what people wanted us to do, and that carried us through. However it also meant there were some surreal moments when you realise you are having fun with friends but your child has died. That is okay too.

You have choices in terms of the funeral you want to have. We chose not to see the coffin so the undertakers arrived at the crem before us - we didn't think we, or our friends, could cope with seeing such a small coffin. We chose no flowers and a charity donation instead. That was a bit odd because when we came out, there was still a marker with Monkey's name where flowers would have been and I thought it looked a bit like no-one loved him. We chose to have a balloon release which was beautiful. But be clear when you want people to let them go.

Enlist a 'best man' if you need one (and try not to shout at your husband 'but it's not a bloody wedding...')

If you have a cremation, collect your ashes when you are ready. We collected Monkey's on the day we had the scan showing Wotsit at 12 weeks, Pickle was with us. It's the only time I felt like I had 3 children with me.

If you're not sure what to do with the ashes, take your time. If we'd hurried, we'd have scattered them. A year later, we actually buried them in the church yard but kept some back which we still have here in a box, in another box, in a cupboard.

It's okay to have a glass of wine at the wake. I refused several drinks before a friend's Mum put a glass of red wine in my hand. It helped.

If you're anything like me, make plans for the week after the funeral. I was at a complete loss and had plans for every day. I could not be on my own for a while.

Most of all, forgive yourself a lot, as you may not make the decisions you think you should have when you reflect upon it in the months to come.

I think the abridged version of the advice goes something like this; ask lots of questions, talk, take your time, do it your way, talk some more and forgive yourself.

Tuesday, 28 September 2010

Just found this beautiful pic of Monkey post op October 2006

Just sorting through some old files and came across this picture.  This is Monkey (with monkey), mid October 2006.  I went on maternity leave a few days before he went into hospital to have a gastrostomy (tube into his tummy to help him feed).  

We'd always fed Monkey orally and only a couple of times had to have an NG (Nasogastric) tube passed when he'd had chest infections and become too tired to feed himself.  But it's fair to say that it was never easy to feed him.  That said, it was one of the things I loved to do the most.  Something 'normal' we could do together.  I'd do something (feed him) and in return, he'd do something (swallow (sort of and sometimes)).  He responded to different flavours.  You could tell he loved cake!  However as Monkey got bigger, it was hard to get enough food into him for him to keep growing without us spending every waking hour feeding.  No fun for anyone.  And as much as I loved the feeding, there were days when it was so hard that I would cry. 

Our wonderful peadiatrician had mentioned a gastrostomy a few times and I had resisted but, with a new baby arriving any day, I knew it was the practical solution.  We still agonised over it.  Sometimes I think about the decisions I have to make today (should I have a fixed rate mortgage or a tracker mortgage?) and I'm reminded that whilst these might be important in some respects they are nothing like the decisions we have to take when we are talking about the health or care of other people we love.

We were booked into Leicester and in we went.  They were fab. 

I remember how I felt as the anaethetist put Monkey to sleep.  Still unsure whether this would be the right decision for him and wondering whether I was being selfish putting him through this - was it all for me?  Was it for the new baby?  Worried, though not overly, about the chance that Monkey might not make it through the operation (there were no specific reasons to worry but I guess general aneastheics carry a risk).  I remember getting into the lift and going down to the canteen.  There was someone in the lift with us.  As soon as they got it, I made one of those noises you make when you're trying to hold in a cry but it escapes.

I remember being reasonably irrational and cross with my husband who wasn't beating himself up about whether this was the right decision.  Wasn't feeling the guilt that I was.  But was feeling hungry!!!!

I remember going back up to the recovery area and hearing Monkey cry in pain before I could see him.  I thought it was him but wasn't quite sure - it was a cry that I had not heard before.

He was fine.  He recovered well from the operation - so did I!  I stayed in every night, sleeping beside him.  36 weeks pregnant and 5 days on a ready bed on an NHS ward.  I got up for a wee every night and the nurses were keen to check I hadn't gone into labour.

I found it really hard to look at the tube in his tummy for a while and I remember my Dad coming to see us (actually on the day he was being discharged) and not being able to look either.  I still felt guilty.  At that stage I didn't know what a godsend it would be. 

We were very lucky.  Monkey healed well and tolerated his feeds from day 1 (other than being quite sick occassionally if that makes sense).  We came home as planned.  Pickle arrived by c-section 2 weeks later, as planned.  And we moved house 10 days after that.

The gastrostomy definitely made all of our lives easier.  Oral feeding could be about tastes, rather than nutrition.  I don't have regrets as such but if I had my time again, I'd have done 2 things - we'd have had the gastrostomy a bit sooner and I would have done more oral feeding afterwards.  We were lazy some days (maybe tired, maybe busy but sometimes lazy) and Monkey didn't get to taste food every meal time and I think he might have liked that.

Thursday, 2 September 2010

Lobster: Dead or alive?

We are on a beautiful beach in Ile de Re.  There is a fully intact, but very dead, lobster washed up on the beach.  Pickle, Wotsit and Nephews 1 & 2 are gathered around for a good look.  Wotsit and Nephew 1 give it a good poke whilst Pickle and Nephew 2 look on a few safe steps away.

"It's dead, it's dead."  Nephew number one yells with glee.  "No it isn't" says Pickle, a touch perplexed.  "It can't be dead, it's still here, so it must be alive." 

Nephew 1 pokes a bit harder.  "It's dead" he squeals "it's not moving".

Pickle turns to me.  "It's not dead is it Mummy?  When things are dead we can't see them anymore.  They are completely gone... like Alex.  He's dead and we can't see him ever again."

I flounder momentarily - trying to work out how much to tell this bright, but very sensitive, almost 4 year old.

"It is dead pickle.  But when things die they don't disappear straightaway.  We can see them for a little while longer and then they go.  If we come back tomorrow, the lobster will be gone and then we won't be able to see it anymore."

Bright but still very accepting, he accepts this...

...And I hope for a high tide.