Is Pickle reading my blog?

Last time I posted, I wrote about how we say Monkey is stuck in our heart. Tonight, bathtime, Pickle is being a horror. Defiance at every turn. I tried an element of pleading, some bribery a little bit of withdrawing attention (by far the most effective) and (I'm not proud of this) a small amount of shouting.

It culminated with a meltdown of amazing proportion which led to him screaming 'I want my big brother'. This has happened once before and was, I believe, genuine. It stopped me in my tracks. Tonight, I have to say I doubt how genuine it was and think Pickle was looking for a reaction. However, he eventually calmed and it ended with a big cuddle and gulping tears. And then...

'What's that noise Mummy?'
'It's just air in the radiator Pickle'.
'No, not that noise Mummy, THAT noise'
'I'm pretty sure it's the air in the radiator'
'NO IT ISN'T'
'What do you think it is Pickle?'
'I'm listening to Alex in your heart Mummy, I can hear him.'

He is pressed right up against me, ear to my chest, listening to my hearbeat, listening for his brother.

Gilbert the Great (stuck in my heart)

We have a story. We've always had it. It was just on the shelf. It came in a set of 10. I didn't really like it all that much. Then Monkey died. And I read it again.

It's about a shark called Gilbert who loses his friend Raymond the Remora. He goes through lots of emotions (anger, regret, sadness). At the end (after he's been to the Wreck for some junk food), he meets a Remora who has lost her shark (predictable but sweet). He tells his new friend about Raymond and says - 'He's stuck in my heart, I shall never lose him there'.

That's where Pickle says Monkey is. (When Wotsit was on the way, he was a bit confused for a while about Wotsit being in my tummy and Monkey being in my heart and I think he expected them both to come out.)

I find 'stuck in my heart' easier than trying to explain any kind of heaven, nicer than saying he was cremated and his ashes are buried in the churchyard, truer than saying he's up in the clouds.

I've looked for Monkey in a lot of places and I can honestly say it is the only place I've found him. Stuck in my heart. Forever.

Glue sniffing

Hard to know how to follow the last post and I will need more time to collect my thoughts and work out what I'd like to share next, so here's an interlude...

Wotsit and Pickle have their names on their bedroom doors. We recently lost a letter. This morning my husband (after fixing the toilet seat) turns his attention to the door. He fetches the 'contact adhesive' (couldn't just be glue) and sets about tackling the job. Pickle is watching avidly and I hear from Daddy 'you musn't touch Pickle'. Good advice, I think. And then... 'Would you like to smell it?'.

If he has a solvent dependency in years to come, at least I'll know where it started.

The good news? 'Olive' has become a boy once more.

Saying Goodbye

A room that was full of medical professionals suddenly empties. You are left almost alone. One nurse has to stay with you to make sure that nothing untoward has gone on and you don't try and cover anything up. What do you do?

My husband wants to talk to the nurse to find out what happens next (so very practical). And I want to say goodbye.

I said goodbye to my son in the space of about 3 minutes. I told him these 3 things - I told him I was sorry (for not being able to keep him alive). I thanked him (for teaching me so much). I told him that I loved him. And then I kissed him and said goodbye. Just as I had 2 years, 9 months and 1 day ago, I encouraged my husband to kiss him and then we walked away.

With hindsight I think I regret walking away so quickly but I'm not sure and I can't change it. He wasn't there and I knew that. However I'm reasonably staggered at my ability to string the words together that I did. Even if I'd had another 10 days, I don't think I could have said anything more meaningful.

And then? To the family room. To be offered tea. So many cliches. No thank you, I didn't want tea. And then the door closed and my mouth was so so dry, all I wanted was tea. We were asked to wait until a consultant arrived to speak to us. I don't know what we talked about whilst we waited.

We phoned our friends who had been with us and were looking after Pickle. I suspect they already knew.

I phoned my Mum in Australia - I needed to tell someone to make it real. She answered the phone 'To what do I owe this pleasure? I spoke to you this morning'. 'I'm sorry Mum, I have some terrible news, Alex has died'. She actually made a sort of howl, slightly hysterical. I held it together and this was the first of many calls where I comforted the recipient of the phone call. 'What can I do? I'm so far away'. 'You can phone me every day for a month to see how I am'. 'Of course'.

My husband phoned his parents who were at the Edinburgh festival. It seemed a much more factual call but I guess everyone reacts differently.

The registrar who had been part of the resus team came to talk to us. I remember liking her. The consultant came (from his bed) and said that the most likely cause of death was due to an epileptic fit which had been so severe Monkey's heart had stopped beating. Quick and painless.

Then we had to wait for a police escort home. As we were leaving the hospital I had an urge to run back to Monkey. I didn't want to leave him. I didn't want him to be put in a drawer (have I watched too many films?). But I resisted the urge.

My husband chatted to the policemen on the way home like you would a taxi driver on the way to the airport. They came in and had a look at Monkey's room. Our friends had washed Monkey's covers (my husband had been blowing air into his stomach when he was doing mouth to mouth so he'd been sick). I know why they washed them but I kind of wish they hadn't. And then we all had another cup of tea. I couldn't believe that at 9.20pm I had found my son, not breathing, and by 12.05 I was home in my kitchen having a cup of tea.

Our friends stayed with us until about 3am. The most surreal moment of the evening was when my husband and friend started discussing how we could block in the window in the living room in so much detail that it was competely absurd. The feeling I had at that moment stays with me. It was so inappropriate except it wasn't. I don't think there's such a thing as 'appropriate' conversation when a child dies so suddenly.

More than anything, I did not want to go to sleep. If I went to sleep, I had to wake up again and then I would have to deal with reality. But eventually my body took over and I slept.

Mummy, can you count to ten in Punjabi?

I've had a lovely weekend.

We brought Wotsit up to our bed on Saturday morning so there were four in the bed (not sure why we haven't done it before). I was loving it. Being fought over by all three men in my life!

Pickle swam beautifully, a width with his armbands on but otherwise unaided - I was very proud (my husband had said I should take a book! No way, I spend the whole half hour grinning, watching him).

After swimming, as Pickle's putting on his shoes (it took me a while to work out what he was saying) he asked if I could count to ten in Punjabi. I can't and I'm ashamed to say I have no idea whether he can either but I imagine he was having a very good go at it!

Pickle was finally good enough for the whole weekend to deserve a treat and is now the proud owner of Oliver the engine.

Off to brush up on my language skills.

The Last Day

It was a Friday in August
A hot sunny day
So unremarkable in so many ways
Mum phoned in the morning
We did normal things
We went to the park and Jake played on the swings
You were a little bit grumpy
Tired I think
I spent too long on the net, you had forty winks
You had tea in the garden
We got ready for bed
Mr Lazy the bedtime story we read
Your Dad came home early
He kissed you good night
I told you I loved you and tucked you up tight
It was a beautiful evening
Friends came for tea
We drank wine on the lawn, I was glad to be me
I checked on you later
At twenty past nine
But you’d gone to sleep for the very last time.

Love you forever little man x

And then you were gone

When Monkey was 15 months old, I fell pregnant as we'd hoped and we planned for baby number 2. We didn't really worry about the pregnancy as there was no reason for any complications and I was checked slightly more often then before. I stopped work 3 weeks before Pickle was born - it was a busy time. Monkey had a gastrostomy on the 15th October as I knew it wouldn't have been possible to feed both children at the same time and also I wanted feeding times for Monkey to be fun - rather than necessary. It was the best thing we ever did and I wish I hadn't resisted it so much previously. Pickle was born on the 3rd November 2006 by elective ceasarian (so I could be home in time for Monkey's second birthday). I struggled a little with how easy it was to have a c-section and how things could have been different - hindsight is cruel sometimes. Two weeks after Pickle's birth, we moved to Bedfordshire (I like a challenge).

The support in Bedfordhsire seemed really good - but it meant a ton of appointments - I think I counted 20 one month and that wasn't too exceptional. Pickle was an angel (until he was about 18mths old!). We got to know everyone and started working on Monkey's statement and we were feeling really positive about the future. My husband lost his job and was out of work for 5 months which was a little stressful but we were lucky, we managed without me having to return to work and we got some time together which we wouldn't have had. We were looking into some respite care for Monkey and Pickle was doing really well.

Monkey had a bout of pneumonia in June 2007 which had him in hospital for 12 days - my first wake up call I think. I could see that life would be like this sometimes and how hard it would be. I missed Pickle terribly whilst at the hospital and he became a Daddy's boy. I don't think I realised how poorly Monkey was until he started to get better which took an incredibly long time. He came home and my Mum arrived over for a visit from Australia. We had a fab 4 weeks. Although on the day she left (Thursday) Monkey went back to hospital for 2 nights with another chest infection, needing a quick burst of IV antibiotics to clear it. He came home on Saturday.

On Sunday morning I somehow managed to put my back out and couldn't lift either child. Typical, Mum had gone home only a few days earlier and my husband started his new job on the Monday! I had thought that Monday would be a sad day on our own but instead I enlisted friends to help and we had some fun.

Tuesday, my sister-in-law came and my back was a bit better. Wednesday we were on our own and I was sad. Pickle was becoming such an active little man and this was the first time in a long time I was trying to look after him, stop him hurting himself (and Monkey) whilst stimulating Monkey as well. It wasn't possible and I'm afraid it was Monkey that lost out. However, I knew I was returning to work in a few weeks time and had a nursery sorted for the boys where Monkey would get 1 to 1 care so things would be okay. Thursday we got out the house which I think was good - I managed to see a friend and felt better. Monkey was a bit uncomfortable and I couldn't work out why but it wasn't too bad and he settled at night.

Friday we were at home again and he still seemed uncomfortable (not that unusual) however I think he was tired as he went to sleep for a short time in the morning and again in the afternoon - after 2.5 hours I tried to wake him but he really didn't want to wake up. I knew I needed to wake him so he would sleep that night and I wanted to get out of the house so I put the boys in the buggy and we went to the park. Monkey was still a little grumpy but not bad and I realised it was food time for him anyway so we went home. He had his pump feed in the garden whilst Pickle and I played. It was lovely and my husband arrived home early so he put Pickle to bed and I gave Monkey my undivided attention. He stayed up a bit later and had cuddles with me because he'd had so much sleep earlier on. I put him down about 7.30 and read him a story (Mr Lazy). He slept on his side as he was most comfortable that way and it was safer if he was sick. He was still grumbling and kicking his legs a bit but I said I'd leave him and check on him later (normally he'd cry if he's uncomfortable or wants some help getting to sleep).

We had our best friends over and sat in the garden - outside Monkey's room - and didn't hear anything. About 9.30, I remarked that I was surprised that he hadn't grumbled and went to check on him. Monkey was face down and not breathing but still warm. My husband tried to resuscitate him until the paramedics and then ambulance arrived (they were quick). We got to hospital and they gave him some adrenaline but it was clear that nothing more could be done. That was the 10th of August 2007.

More of Monkey's story

When I started this blog I thought I wanted to write about Monkey's life. I wanted to capture the moments I never wanted to forget. I think that's still true. But I'm a bit stuck. I feel like I need to write the abridged version, get the inevitable over with (he dies) and then come back to some bits I'd like to dwell on. So here goes (if you've followed us before you'll know we've just learnt about Monkey's life expectancy and headed to the shops to buy a sofa).

I had 9mths maternity leave and found it tough - I wasn't doing the things I thought I'd be doing, I struggled to join normal baby groups as people didn't talk to you as they didn't know how or I found it hard to listen to them comparing milestones. Although I had some hospital appointments, I was living in Northampton, and the support from the Child Development Centre didn't start until Monkey turned one so I was very lonely. Naturally a positive person, I coped fine but it wasn't easy and there definitely should have been more support in the early stages. I found the Scope website quite early on which was good but missed the one which became a fantastic support (and my first foray into internet forums) http://www.specialkidsintheuk.org/. We had no family close by and some of the grandparents were finding it hard to love a little boy who gave very little response (sometimes not even saying 'hello' or 'goodbye' to him). I never found it hard to love him but I did find it hard to continually stimulate him - really hard and I know I wasn't always brilliant at it.


Monkey projectile vomitted a lot - I have several friends who can testify to this day that their sofas will never be quite the same (thankfully we had bought a wipe clean leather sofa on that fateful day). I had many tears over spending hours feeding only for it all to come back again. However we did get quite good at knowing the warning signs and aiming for the sink. It may have been reflux but I think it was linked to fitting. It stopped dead for a while once he was put onto clonazapam for his infantile spasms. He did have some reflux too. And constipation (although the nappies when they came were spectacular). All the classics. He was also visually impaired but his hearing was good - I have a house full of noisy toys. We went into hospital with a couple of minor chest infections but really only becasue he needed an NG tube fitting because he stopped feeding at these times. We actually had surprisingly few hospital visits, so I'm told!

The crying is noteworthy - I can't remember when it started and when it stoppped but I know it went on for a long time. It was a bit like colic but didn't stop until some time after he was 1. It was very stressful, to hear him in pain and to be able to do very little about it. As a result I have a high tolerance to cyring babies (Pickle and Wotsit didn't stand a chance!). I cuddled Monkey for hours and tried to protect my husband from the crying because he found it more difficult to cope with. The good thing was that once he was asleep he tended to stay asleep (at least to start with). Once I went back to work, I do remember more sleepless nights though but it's all a bit of a blur.

Returning to work was interesting (4 days a week). The original nursery we'd booked for Monkey wouldn't confirm that they could take him (if only I knew then what I do now!). We found another and he went every Friday morning for 2 months to settle in and all was well until the week before I was due to return to work and they said they couldn't have him without one to one support and this would take too long to arrange. I postponed my return for two weeks and found another nursery with fabulous, compassionate people. I cannot rate them highly enough. The nursery was close to work and I spent time with them settling him in and they managed with a 1:3 ratio and loved him. We learnt together what Monkey liked and disliked. (He liked balloons, cuddles, music, baths (but not getting out of them), people around him, cake and movement).

Monkey's 1st birthday was tough and I asked for redundancy at work as there was an opportunity. I think I felt that a year was quite a lot of his potential lifetime and it had gone so fast. I didn't get the redundancy and I think it worked out for the best (at the time, although with hindsight and knowing how little time we had, I wish, I wish...). Although I wanted to be with him, I think I was forgetting how hard I sometimes found it on a full time, one to one basis.

If anyone's got this far, well done - not sure if there's an optimum blog length but I imagine I've exceeded it.