In Monkey's Shadow

Resignation butterflies

2011-12-28T21:42:00.000Z

I've just drafted my resignation!

It is with a fair amount of trepidation and a little excitement that I am resigning today. I have loved working at Santander over the last 15 years and it has not been an easy decision to leave. However, I think I’d regret it if I didn’t try and spend more time with Pickle & Wotsit before they grow up too much more.

Please accept this as the start of my 3 months notice period so my last day in the office will be 23^rd March 2012. Please could you consider the enclosed application for a career break in case I miss you all too much?

Kind Regards

Helen Foran

I have butterflies!

Pickle the peacemaker

2011-12-02T01:28:00.001Z

Wotsit has rediscovered tantrums. Thankfully, they've always been reasonably shortlived however they can be triggered by very minor incidents. Like cutting up his carrots for him!

Yesterday, I deigned to take the lid off his yoghurt. Cue stroppy talk: "Mummy, I wanted to take the lid off. I do not want that yoghurt. I want to take the lid off a different one."

I apologise for removing the lid but ask Wotsit to settle down and eat up. He is not remotely placated. "I DON'T WANT THAT YOGHURT". This continues for a bit so I take the yoghurt (and the spoon being wielded as some sort of weapon) and start eating it. Wotsit gets louder.

At this point, Pickle pipes up (he hates to see his brother upset). "Oliver, perhaps if you eat that yoghurt, Mummy will let you get a new one from the fridge afterwards and you can take the lid off that one". I'm impressed with his negotiating prowess - no-one needs to back down; everybody's happy (I only wish I'd thought of it myself!). Wotsit and I eye each other up. I nod. "That sounds reasonable". Wotsit concedes and starts eating.

When he's finished he asks if he can have another one. "Of course" I say "help yourself". Wotsit trundles across to the fridge and comes back to the table beaming.

Two minutes later "Mummy, could you help me with the lid on this yoghurt please, it's a bit tricky".

Remember, remember the 9th of November

2011-11-09T22:09:00.000Z

Monkey would have been 7 today. I woke this morning and cried. Husband was lovely but still doesn't quite get that it's okay to cry sometimes. He gets up to have a shower and Pickle gets up too. I then hear his door shut again. I go downstairs. "Daddy said you were asleep" he says. It staggers me that Husband doesn't realise that what I need most is a hug from one of my boys. I tell Pickle that Mummy is a bit sad because it is Alex's birthday and I miss him. In reply, he asks me to read Beast Quest. I ask for a hug first. The hug is half hearted. "Read Beast Quest Mummy. I think Alex would like it. Do you think he can hear? I think he can. God can so Alex must be able to as well. Read Beast Quest for Alex Mummy". We read Beast Quest.

After dropping Pickle at school, Wotsit and I visit the friend I made at the bereavement group I went to after Monkey died. It was a good place to go today. We indulge each other a bit and eat cake whilst the children play.

We collected Pickle from school and stopped at the church to drop off 7 white flowers on Monkey's plaque. We play outside for a bit and I sit on the Monkey Bench. After tea, we take the sparklers we've saved out into the garden and light them. I spell out the name of all my boys.

We come in and it's bath and bed for the boys. Wotsit is cuddling Monkey's dog that Grandma bought the week he died. It was the day she flew back to Australia and the day Monkey was readmitted to hospital to fight off a chest infection for a couple of days. In Pickle's room (after more Beast Quest), I ask what song he would like before he goes to sleep. "Happy Birthday".

Happy Birthday dear Alex. We love you. We miss you. xxx

Skyping Heaven

2011-09-08T22:00:00.001+01:00

"Mummy, can we Skype Grandma please?" We try Grandma, she's not there. "Can we Skype Granny S?" She's not there either. "Mummy can we Skype heaven and talk to Alex." Now there's an idea...

A catalogue of errors (and a lovely holiday)

2011-08-30T22:57:00.001+01:00

This year saw us going to Denmark for a family holiday. The first as a mini family, without any aunts, uncles or grandparents. It didn't ~~always~~ often go to plan but we did have a fabulous time. Unfortunately, Pickle & Wotsit may have added a couple of words to their vocabulary that I'd rather they didn't know.

Incident 1 (oops)
2 weeks before we're due to leave, we start to get all the details together (flights, car hire, accommodation) - doing this 2 weeks prior to departure, for us, is the height of organisation. We're staying at 3 different locations but unfortunately I can't find the details of our first stop. I scour emails, websites and excel spreadsheets to no avail. I remember remarking that the company hadn't taken payment at the time I booked and it doesn't take much to persuade me that I probably hadn't booked it all. Still, I email a few people to see if they have my booking. No joy. So, I set about looking for alternatives. I find a really great holiday resort that is fully booked and I'm gutted that I hadn't identified it first time around. Anyway, I find an alternative and breath a sigh of relief.

On our return home, I have a lovely answer machine message from a great holiday resort (namely the one I would have booked if it hadn't been fully booked when I looked at it) saying they hoped everything was okay but as we hadn't shown up for the first night, they were cancelling our booking... That pretty much sets the tone for the rest of the holiday.

Incident 2 (minor)
We're going away early on the Tuesday morning and we have to be at work on the Monday so we've booked the cat into the cattery from the Sunday. We're also visiting my sister, 2 hours away, on the Sunday so we put the cat in the car as we leave to drop her off on the way. We arrive at the cattery at 10.02 and I am pleased with my punctuality (I hate being late). Only problem is we are actually 24hrs too early! Although it would have been a great idea to drop her off on the Sunday, that's not what I'd arranged and the cattery can't take her until the next day. This is the 3rd time we've tried to drop the cat off at the wrong time! Hey ho.

Incident 3 (near disaster)
The night before we leave, the grandparents call to say they'll meet us at Gatwick to hand us some shorts they've bought for the boys that they want them to take on their summer holiday. They live 45 minutes from the airport and we try to dissuade them. We've packed and, what's more, we've not chosen Denmark for the weather. But, once my mother-in-law's mind is made up, there's very little you can do to change it. We concede.

Our flight is at 08:45 the following morning from Gatwick. Routeplanner says 1hr 17 minutes (on a clear run). We need to be there approx 2 hours before take off so we leave at 05:45 (I know, it doesn't quite add up does it?). Not only that but we haven't thought through which way we need to go around the M25 (we're roughly in the middle at the top and Gatwick is roughly in the middle at the bottom) and, I'm afraid to say, that clockwise wasn't a good choice! We get stuck in traffic. As gaps in the traffic permit, husband drives dangerously (and curses people in his way) and I am cross.

We arrive at the airport 35 minutes before take off and the only way we manage to catch the flight is due to my in-law's sweet talking the first class check in desk to fast track us.  (Thank you). The good news is that I have no time to worry about the flight.

Incident 4 (could have been a lot worse)
We locate our hire car at Copenhagen airport and start our journey to Funen. We've not gone too far (but far enough to be on a motorway) when we realise the child locks are not on. We know this, of course, because Wotsit has opened his door. Cue more swearing from my husband. Disaster is averted as we're travelling at speed so the door doesn't open fully and I manage to put my hand behind me to keep it closed until we can pull over safely.

Incident 5 (sightly annoying)
We arrive at our first holiday house.  It looks nice (although incredibly close to a high speed train line, hence it's availability so late) but it's deserted with no sign of how we get in. We wait for a bit before phoning the holiday company who say they sent us an email advising we needed to pick the keys up from a restaurant about 30 minutes away. Oh yes, it's all coming back to me...

Incident 6 (potential to be the biggest error yet)
The first 10 days have been lovely and we're heading to Copenhagen for a final 3 nights. We leave our second holiday home, drop the keys at the tourist office and head to the ferry port. We check in there and we're in the queue waiting to board the ferry. Which, thankfully, was a few minutes late. I don't know what reminds me but I turn to my husband and say "I think I've left my purse in the house". Reasonably tersely husband replies "do you want me to go back?". I say no. There's no money in it, I'll cancel my cards and hopefully someone will send it to me as it's a nice purse and has some personal effects in it. And then I cry.  Monkey's 'children with disabilities' is still in my purse and I fear I might not get it back. Husband softens and offers to turn back more gently. It's fine, I sniff. And then, two minutes later "I think the passports might be next to my purse". Husband says nothing but pulls out of the queue.

We return to the tourist office, collect the keys, find the purse and the passports (and agree it wasn't completely my fault) and start all over again.

In conclusion:
We're very lucky! Lots of near misses but no harm done. Not even any financial penalties. And we're still talking to each other! We had a fabulous holiday. Vikings, castles, Legoland, beautiful beaches, friendly people and beautiful children (most of the time), who (at 2 and 4) walked (mostly willingly) around a large part of Copenhagen, made up for all the incidents.

Although I am slightly worried I may be losing my mind.

Time flies

2011-08-10T22:10:00.000+01:00

It's been 4 years since Monkey died. I still miss him every day. In many ways I can't believe it's been 4 years and in other ways it seems like forever. I wish I could remember him better. I wish it still hurt more so it felt real rather than a distant memory of someone else's life.

When Monkey died I promised I'd do something one day to honour his memory. Help some families in similar situations who could do with a hand in some way. I hope this doesn't sound like an excuse but I've been busy with Pickle & Wotsit but I've not forgotten that promise and I'm getting closer.

I'm hoping to resign from my job in the next few weeks. It's probably a bit loopy to throw away a perfectly good job in the current economic climate but I'm going to do it anyway. The plan is to spend more time with Wotsit before he starts school - next September! - to work from home a couple of days a week and to start looking for useful things to do.

I love you Alex Monkey - you're still my inspiration.
x

Pickle no longer

2011-07-16T21:59:00.001+01:00

I'm not sure why Pickle is called Pickle, I can't remember when it started but he's been Pickle for as long as I can remember. I'm not sure we can stop but I think we may have to try...

"Mummy, I don't want you to call me Pickle any more"
"Why not darling?"
"I don't want to be called something which is a type of food".

Fair enough. And I'm trying Pickle, I really am (with the exception of this blog). But bear with me because it's quite hard to stop.

Keeping you alive

2011-07-15T21:41:00.001+01:00

It's a busy (and noisy) morning in our house, Pickle wants to tell me something. The radio is on, the kettle is boiling and the dishwasher is being unloaded. I can't hear him for all the noise.

I reach over to turn off the radio, saying "Just a sec, I'm not good with radios and children". Pickle says "Yes, you are Mummy, you are good with children. You're good at looking after us and cuddling us and keeping us alive".

A good observation sweetheart. If only you know how hard I'm trying.

Watching baby hospital and remembering...

2011-06-14T21:55:00.002+01:00

Wishing it could all end well.
Knowing that it won't.
Not for everyone.
Watching the new parents desparate to hold their baby.
Praying that they'll breathe on their own.
And eat on their own.
Suck, swallow, suck, swallow.
Come on, you can do it.
That the brain scan will be fine.
The fits will be under control.
That they can take their baby home.
Show them off.
Start their life together.
Face the challenges ahead.

I am priviliged to have been there and lucky to have brought my baby home.

Losing monkey

2011-06-02T21:55:00.000+01:00

This post isn't about 'losing Monkey' but 'losing monkey'. We went to the doctors today to sort out Pickle's hayfever medicine and to have booster Hep A injections. To be brave Pickle wanted to wear his medal (which he got when he ran a mile) and Wotsit wanted to take monkey (Wotsit's not attached to any particularly cuddly toy, he just happened to choose monkey).

Lower case 'monkey' was bought at Cape Point by Monkey's Aunt and Uncle when he was 11 months old and we visited them when they were living in South Africa for a year.  He has arms that get longer as his legs get shorter and vice versa and velcro so you can attach him to things. So, whilst Monkey may not necessarily have been attached to monkey, monkey was often attached to him.  He was always in Monkey's bed and came to hospital when Monkey was poorly. When Monkey died, Sherbet (a purple zebra) and Goodnight Bear were tucked up in his coffin but I couldn't let monkey go.

So, the hayfever appointment was first - all sorted - and we rushed to the post office to post Grandma's birthday card and buy sweets just in case the injections were traumatic. On the way, we realised we'd left monkey with the nurse. 'Not to worry' I said, 'we'll pick him up when we get back'. I wasn't overly worried. However I don't think I appreciated quite how attached I was to monkey.

The surgery was busy when we got back and we didn't get a chance to ask anyone about monkey. And I started to get anxious. I thought we'd left him with the nurse but what if we'd dropped him on the way to the post office? By the time we got to our appointment I think the nurse (a different one) thought I was terrified of injections (I'm not), I was so close to tears.  Anyway, she was lovely. We told her about monkey and she promised to look for him when she'd done the injections. I don't think she could have made the link between monkey and the surgery computer system that says 'death of son' - but she really was lovely and I relaxed.

Wotsit went first - he is the bravest.  His injection record remains unblemished; he has never cried, in fact never so much as flinched. Pickle was next and he wriggled and squirmed and whined a fraction but, when the needle went in, there were no tears. I was also very brave.

Then the nurse went off to find monkey. I'm ashamed to say that when she returned him, whilst Wotist reached for him, I intercepted him and whilst she went to get bravery stickers, I gave monkey an enormous hug.

A wish list (I don't ask much)

2011-05-29T22:00:00.000+01:00

To my husband, I think I have reached some conclusions.

I am happy to move but;
I don't want your commute to increase by very much at all
I don't want to sell our lovely house in a nice area on the off chance that we find something else
I do want to live in a village with a nice community feel
School catchment is important
And so is walking to school - preferably to age 11
I don't want to increase our mortgage by very much at all, or our term
I do want to live in a grown up house or a house that has potential to be a grown up house (which isn't completely out of our reach to actually do one day)
I would also be very happy staying where I am

Oh, and if we do leave I will cry more than you can possibly imagine.

Catching up and overtaking

2011-05-28T21:14:00.001+01:00

Today Wotsit is 2 years, 9 months and 1 day old. He is exactly the same age as Monkey was when he died. He is so like his big brother in looks and cheekiness but not temper. Monkey was content and undemanding and I don't believe that was due to his disability; that was his character. Wotsit is feisty and occassionally stroppy but with a wicked sense of humour. They both love(d) cuddles.

Wotsit talks about Monkey now. He's learnt from Pickle mostly. He'll tell you Monkey died in a swimming pool. It took us a while to realise he thought we'd said Monkey had 'dived'. And he cuddles Monkey's monkey.

So he's caught his biggest brother up in age and is about to overtake. Irrationally, I'll be checking on him later just to make sure.

Moving on

2011-05-27T23:18:00.001+01:00

I've been doing a lot of soul searching lately. We're thinking of moving and I'm very confused. The move would bring us closer to husband's family but stretches us financially and we would need to make reasonably major compromises on the size of the house and garden we have. I know that we can be happy wherever we are but want to do the right thing for us all.

I know that leaving this house will never be easy. Monkey was only here for 9 months before he died but it's the last place he was. My memory is not brilliant but at least here there are lots of triggers. Most of his ashes are buried in the churchyard and I can hear the church bells from my bedroom. I don't think these are reasons to stay but they do make it hard to leave. I've always maintained that Monkey is with me but if we leave here I feel a little like I am leaving him behind. I know I need to look forward but it's tough.

There are lots of other positive reasons to stay too. We are happy here. Pickle's school is lovely and future schools are good. I have friends only 30 minutes away. It's an ok commute for husband. We have a study and a utility room!

So why go? It would be good to be closer to family. They'll help us out, maybe babysit occassionally. When they get a bit older, we'll be on hand to help them too. We'll spend less time on the M25. It's probably a nicer area which also has good schools and, in the right spot, the commute should be ok.

I think it boils down to two things keeping us here; Monkey and money. What to do? Not sure but feeling quite unsettled by the indecision. Although I do at least have a legitamate reason to feed my Rightmove addiction.

I still miss you baby boy

2011-02-11T22:37:00.003Z

That's it.

I'm home alone for the first time in weeks and I'm having a very self indulgent teary evening. Pickle & Wotsit are asleep and I am feeling sad,sad,sad.
I love you Monkey
x

Pickle starts school

2011-01-10T21:12:00.003Z

Pickle started school last Wednesday. I didn't expect to be particularly emotional about it. Pickle has been at nursery since he was 10mths old - I am used to him being independent of me. Nevertheless, it was a big deal. He was so excited and I was so aware of how fast he is growing up.

Day 1: He barely looked back when I dropped him into the classroom and I was grateful to be able to leave as I was mostly worrying that Wotsit would wee on the floor at any moment. When I picked him up his very sweet teacher told me 'he's been fine. He's very confident' then adding 'in a good way.' Pickle has been really excited about having school dinners but could only tell me that he'd had potato. His details about the day were all similarly sketchy. On the walk home he calls at least 3 children Tom. According to their parents (who I can only assume would know) not one of the children is actually called Tom!

Day 2: First trip to Breakfast Club and After School Club which I'm not loving quite as much as the school but Pickle is excited and seems happy enough (could be because there's access to food and television).

Day 3: Pickle asks why he can't have a packed lunch with crisps. He goes on to tell me that he's not had a hot dinner because the teachers thought he was having a packed lunch. He's quite insistent on this when I challenge him. This is not true - I can see the food around his face. He confesses later that Friday is chip day and that he had beans too (possibly with something more nutritious but I couldn't be sure). Pickle also tells me about P.E. In his words 'there was no climbing or running. I didn't have to put on my new indoor shoes or my p.e. kit. I just had to take off my socks and lie on the floor and pretend to be a snake going ssss ssss - it was a bit boring!'

Day 4: Already talking about Star Wars. Tom is still his friend (I don't think he's invisible but couldn't be sure). He had a lovely day. P.E. was outside so he got to wear his new outdoor shoes but he didn't have any jogging bottoms like the other children (I am a bad mother, I missed that bit of the instructions) so had to wear his school trousers becasue it was a bit cold for shorts. He fell over at 'they call it break time but I call it outside play' and grazed his hand but was very brave in the bath tonight. And did some clay modelling.

I loved school and hope this is the beginning of Pickle loving it too. In fact, I liked it so much that I'm hoping that one day soon I can go back and help out a bit...

Christmas Pumpkins

2010-12-27T22:51:00.002Z

My friend sent me this email on Chrsitmas Eve:

Not that you don't know this already but your boys are truly gorgeous. Pickle whispered in my ear this morning "Happy christmas and I hope Father Christmas brings you what you wish for!" Wotsit, wanting to copy his brother, whispered (in a not very quiet voice!) "Daddy is going to carve a pumpkin tonight cos it's Christmas Eve".

Thankfully, Wotsit wasn't too disappointed about the pumpkin...

Snippets

2010-11-28T19:40:00.000Z

"I can't wait until I'm grown up Mummy."
"Why's that Pickle?"
"Because then I can tell children off."

I think I'm reasonably horrified that he thinks that's what we do although maybe it's no bad thing that he knows who's in charge!

Wotsit's words are also coming along - "Daddy, stop stroking Mummy". (He was only massaging my shoulders). And, the sentence I've heard most this weekend "It's mine actually".

God, I love these boys.

Skirting around

2010-11-21T20:58:00.000Z

I like skirts (although recently dresses seem to have overtaken even skirts -   bizarre really given I actually spend most of my time in trousers). Anyway, I have quite a few. A lot of which haven't fit me for quite a long time (I've shrunk) but I've felt strangely fond of them. And now, I'm finally having a sort out (well, I have to make room for those dresses somehow) and it turns out I'm more attached to them than I thought.

In order of memory:

There's an a-line, just below the knee bluey-green number with a chiffon underskirt (nicer than it sounds) - my husband bought it for me for Christmas, the year I had Monkey. Along with some knee high black boots (which he chose himself). I'd had almost 6 months of swollen ankles and gained 4 stone during the pregnancy. So, 6 weeks after the birth, I was still quite a bit bigger than my pre-pregnant self with nothing to wear and a New Year's Eve dinner with friends coming up. We'd popped to the shops, I saw the skirt and it came home with us... We had a lovely evening, Monkey joined us for much of the meal and we asked our guests to be Monkey's Godparents.

Then there's a full length, floaty brown skirt with a couple of ra ra layers and a small pink rose print (also nicer than it sounds!). I was with my Mum when I bought it, looking for a skirt to wear to Monkey's Christening (she's come over from Australia for the Christening of all 3 children - to be honest, it's a big factor in them being Christened - with no more babies, not sure when she's next coming...). I teamed it with a casual pink top and some brown sandals (I am not a fashion queen). It was a good day. Lots of friends and lots of family. Monkey managed not to vomit in church (something he had done spectacularly the week before). I was quite emotional and felt strangely comforted for having had him Christened. There are lots of pictures of an 8 month old Monkey having lots of cuddles that day. I remember my sister feeding him, Monkey not settling for his sleep and my Mum drinking lots of wine.

And then there's a black work skirt, knee length, a fine red strip running diagonally through it - straightish with a bit of a kick at the bottom. I wore that when we went to Manchester to talk to the lawyers who were developing a case for us in relation to Monkey's birth (a story for a different day). My Mum was over (Pickle's Christening) and she looked after the boys for the day with a friend of hers. She was really nervous about having them, about being able to care for monkey properly, doing his medication and lifting him. I'd left a few instructions. They got on fine although Mum was exhausted when we got home and said even if she did live in this country she didn't think she'd be able to help with Monkey on her own.  I had a lot of mixed feelings that day in Manchester - good news in that they felt they had a case. Bad news as inevitably that meant that something could have been done differently when Monkey was delivered.

And now - now I've written it all down - I can feel better about keeping those memories safe whilst the skirts make their way to the charity shop. I can give away skirts, but not memories.

An old fashioned birthday party at home...

2010-11-13T09:59:00.001Z

Pickle has just turned 4. We bucked the trend amongst his friends for hiring a village hall and instead invited 10 children to come for a bonfire birthday party. Whilst we're lucky enough to have space, we couldn't invite the entire nursery so Pickle had to choose his friends. All boys bar one, because he needed "someone to be Gwen"!

We only had one response in the first 2 weeks and I was worried about my son's popularity. We had to chase down a number of responders but ended up with a full house (my apologies to all those parents who I haven't replied to swiftly in the past).

I hadn't specified whether parents could drop their children off or stay with them and expected most to stay (as they don't know us and we don't know their children that well). But I was surprised that most children came with 2 parents and both stayed. Think they must be only children and some had to travel a distance to get here. Anyway, it didn't do much for my nerves! I'm shy and whilst perfectly capable of making a fool of myself in front of 12 kids, not quite so good with all their parents. My husband had been briefed to keep them all in the kitchen with wine and beer but he was still setting the fireworks when they arrived so they trooped through to a very crowded play room.

Pickle was also quite shy and extremely tired. He struggled with wanting to be centre of attention and wanting to sleep in equal measures. The pizza decorating was a little ambitious. Pass the parcel was safe (although nearly let Wotsit win which wasn't the done thing). Other traditional party games were fine but hadn't really thought through the winning strategy and didn't have any other prizes lined up. Sleeping lions was going the same way (i.e. nowhere) when I whispered in my sister-in-law's (ex-primary school teacher and music whizz) ear 'can you do sleeping bunnies'. Which was swiftly followed by very excited sleeping crocodiles, lions and monkeys (although Pickle at this point was mostly just sleeping).

Finally tea was ready. Only one child didn't like pizza. And most couldn't eat a whole one. Clearly my children are just gannets. I was only midly embarrassed during tea when one of the children knocked a painting off the wall (no-one was hurt) to expose a huge hole in the chimney breast my husband had drilled a few weeks earlier. I'm starting to see why people go to a Village Hall...

By far the biggest success, sitting outside with glow sticks waiting for the fireworks, the fireworks themselves (I was in the shed with the scaredy cats (including Pickle)), and then running around the garden afterwards in the dark. Pleased to report no injuries, just lots of mud. Oh and the party bags were pretty cool too.

I think they all had a great time. And I'm sure Pickle did. I spent a lot of time worrying that none of the parents like me (but it's hard to break a habit of a lifetime). And the tidying up wasn't too bad.

The day ended with me bathing 4 children and Pickle going into complete meltdown - too tired to hold it together any longer. He fell asleep as we read his bedtime story and I have to say, I wasn't far behind him.

Six wishes for your sixth birthday

2010-11-09T11:43:00.000Z

I wish that you could have some cake
I wish your brothers could hug you (and maybe jump on you a bit)
I wish we could snuggle
I wish I could take you swimming
I wish I could buy you a balloon
I wish you were here

Gone where?

2010-10-31T19:57:00.001Z

Following the lobster incident on holiday, it didn't taken Pickle long to realise that I hadn't quite answered the question about where people go when they die. Over cornflakes, he wanted to know where Monkey had gone and wasn't satisfied with 'he's just gone'. 'Gone where? he challenged. So, I thought, now's as good a time as any. And we had an early morning lesson in burials and cremations.

I explained that when people die, they stop breathing and their heart stops beating and although they might still be there and we can see them, they're not really there anymore and they can't see, hear or feel anything at all. And that we're not allowed to keep them with us forever.

I explained that some people are buried in a coffin and that some people are cremated which means they are turned to ashes. Pickle says 'but ashes come from fire'. That's right they do, so some people are burned in a special fire and turned into ashes. And that's what happened to Monkey and then we buried his ashes in the churchyard. His wobbly bottom lip does just that. And I remind him that it's ok, that Monkey couldn't feel anything. And then Pickle smiles which quickly turns to giggles and wants me to tell him about all the people I know who have been turned into ashes.

Pickle will be four soon and he's having a bonfire birthday party. With some glee, he asks 'When my friends come to my party, if they get too close to the bonfire then they will be burned and turned into ashes?' (Is that why we've not had many accepts?)

Not many minutes later, it's time for me to head off to work. Pickle is fine (me too) and I just wonder what he'll tell them at nursery. Perhaps I'll give them a call...

Your specialist subject is...

2010-09-29T22:35:00.002+01:00

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.

Just found this beautiful pic of Monkey post op October 2006

2010-09-28T21:11:00.000+01:00

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.

Lobster: Dead or alive?

2010-09-02T21:27:00.000+01:00

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.

Blonde roots

2010-08-19T21:14:00.004+01:00

I am very definitely a brunette (with streaks of grey these days). Why then, did my best friend teach my other friends how to sign 'blonde roots' a few years ago? And why is there a Barbie doll perched on my desk? In recent years, I thought perhaps motherhood had made me less scatty and the blonde moments had diminished. I thought perhaps I'd learned, at the very least, to think before I speak. It would, however, appear not...

Picture the scene. Holding down a senior-ish role in a retail bank, interviewing with a number of colleagues for our graduate intake. Marketing director presenting to them on why they want to work with us. Asks us to introduce ourselves. Hip HR graduate recruiter asks the graduates to share an interesting fact and encourages us to do the same. 4 graddies go first. Then colleague number 1 - her interesting fact is that she joined the graduate scheme at said bank in 1994. Colleague number 2 - his interesting fact is that he was a graduate for a large accountancy firm. And then it's me.

'I don't know about you' I say to the graduates 'but I'm not sure those were particularly interesting facts'. I wanted to reassure then that not everyone working for a bank is dull. I pause - not for dramatic effect but because, although I know what I want to say, I suddenly realise it might not be such a good idea to admit to it in front of the marketing director. But, by this time, my mind is blank and I cannot think of any other interesting facts - I am committed. I was going to share with them that whilst, by day, I worry about mortgage margins, by night, I design some adverts for my friends who own a lingerie shop.

What I say is 'in my spare time I do some advertising for a lingerie company'. Even as the room bursts into fits of laughter, it takes my bossfriend (interesting fact 'he's not a graduate') to explain that they're not laughing because my interesting fact is, well, interesting. They actually think I've just told them that I am a lingerie model.

Oh well, I think I achieved my objective (you don't have to be dull to work at a bank) and managed to put the graduates at ease. I gave my colleagues a good laugh and I imagine the marketing director won't forget me in a hurry. There are some lovely young people who for a second believed I could be a lingerie model (or perhaps that's really why they were laughing...). And, once I'd recovered from the embarrasment, I smiled until my jaw ached for the rest of they day.

How to mark the day...

2010-08-10T21:07:00.003+01:00

For the 3rd year in a row, I have taken the 10th August off work. I would be fine at work but in many ways I want to acknowledge this day in some way. I want to be close to my family and hold them a little bit tighter.

I appreciate the messages that are sent and I understand why people are thinking of us but please think of Monkey as well. Remember that sweet little boy who needed a lot of love and a lot of help. Who didn't complain all that much about how difficult things were for him. Maybe because he couldn't but mostly because I think he often took content to a whole new level.

Today, my husband worked and I took the boys to Warwick Castle. My grown up nieces joined us. They asked if I was sure I didn't want to be on my own. What? With 2 terrors who could have a grumpy, challenging day? No, I love these boys so much but today it was good to have company. 'I don't need to be on my own' I told them. 'I simply reserve the right to choose who I spend it with and you two, along with Pickle & Wotsit, are at the top of my list'.

It has been a good day. Bizarrely, Wotsit today has kept saying Alex's name and 'Where's Alex gone?'. He's getting to the age when those questions will come but I think it is merely coincidence today. They do not know what day it is.

We've seen jousting and eagles, climbed towers and dressed as knights. Wotsit was stung by a wasp and was remarkably brave. There was one meltdown (Pickle) but all over reasonably quickly.

My heart beat faster as we drove past the church on the way home (the beauty of living in Church Road is that we pass by every day) and it will pause again at 9.20pm tonight.

You are always on my mind

2010-08-08T20:29:00.001+01:00

Dear Monkey,

It is nearly 3 years since you died. Yet I think of you often, and so do your brothers - even the one that never got to meet you (and looks a lot like you).

This weekend, for example...

On Saturday, we visited Ben & Gillian and baby Sophia. Some other friends were there with their children. The eldest was 5 and he seemed so grown up. And then I remembered that you would now be nearly six...

The journey home was long and frustrating. Motorway closed - we took an alternative route. I had a flashback to stopping at a pub on the way to the South Coast with you and your Daddy. It was before Pickle was born. We were going to Worthing. Your Dad always fancied (and still does) living by the sea and we'd been looking for somewhere we could afford that looked nice. I wanted to be somewhere that would be good for you too. Lots of fresh air, wheelchair access and good NHS facilities. We walked along the sea front and went to a Chinese restaurant for tea. I love it when there's something I'd forgotten that jumps into my head - a memory discovered.

Your brothers climbed into our bed this morning and Wotsit was looking at my mobile phone. The screensaver is a picture of Pickle pretending to sleep. Wotsit says 'Alex'. I tell him it's not you but he insists it is. Funny that Wotsit is actually the one who looks like you. Extra big kiss for Wotsit for learning your name and thinking of you.

We are selling some things on ebay, including the double mountain buggy that we bought for you and Pickle. For a while, it was hard to know how to go out with the pair of you. We were trying so hard to get some supportive seating for you. I'd written a few snotty letters to wheelchair services! But we needed to get out. It was not ideal and I know it wasn't supportive enough for you but it did us for a while and you looked like you loved it. And we could go off road! We walked to Old Harry's Rocks with you in that pushchair and made daisy chains at the top. And Daddy and I took you for a walk in the countryside when we first moved here. It was reasonably disasterous! The ground had been churned up by horses and it was sticky clay, we got lost and there were a couple of stiles to lift you both over! I may not have been smiling on the day but today the memory made me smile a lot.

At the end of the day, we were having some wind down time with cbeebies. I have a son on each side, snuggling up. I said 'who is the luckiest Mummy with 2 gorgeous boys?' Pickle replied 'not you Mummy, you have 3 gorgeous boys'.

We love you
x

A Journey

2010-07-28T11:18:00.005+01:00

5.30am alarm. Pop down for a quick shower. Pickle is awake. Last night he was feverish and he has not had enough sleep. I cuddle him for a few precious moments and persuade him to drift off. Quick shower and out the door. Drive to a station about 30 minutes from home. Lose £1.50 in the Pay & Display machine. Give in and pay for parking by phone. I am, of course, early. Collect tickets and wait for train. Arrives on time and for the first leg of my journey I relive the first 6 months of the year in the text messages that are on my phone. Lots of good wishes, some cryptic and amusing messages from my 'bossfriend' and some sad ones from close friends who are going through IVF.

Second leg - disappointing pain au chocolat and milky, milky tea. Reading The Age of Innocence that my bossfriend bought me for Christmas to encourage my appreciation of classic literature. Took me a while to get into it but I am now really enjoying it - hoping to finish it on this journey with no little people to interrupt. Occassionally my mind strays back to work. I spend a few minutes contemplating a loyalty proposition and then go back to gazing out the window.

I find this type of journey quite liberating in a 'I could go anywhere' kind of way. Today I am a Mum but I'm not being a Mum and I'm not doing what I do every day I go to work. No one here knows who I am. I think I am proud of who I am but I also like the idea of maybe being someone else just for a day. I wonder about the people around me. I dream about where I could get off the train, where could I go? York? Glasgow?

The reality of my day ahead? I am visiting a call centre and meeting up with one of my team who is underperforming. She's a lovely lady - in my opinion, she's in the wrong job. She'd be fantastic in another job and happier, I think. I would like for her to see that without feeling she is failing. Easy to say I know. Last time we met, we had a difficult review and I am apprehensive about meeting up today.

Third leg - I cry. Eventually, if I spend enough time on my own, it is almost inevitable I will cry. I don't think that's a bad thing at all. It means I am actually feeling. I am not numb. I am not overly accepting. I am still sad. I miss my son. It has been almost 3 years since he died and I wish he was here. I am human.

9.52am, I arrive. I am calm.

Pickle's early views on reincarnation

2010-07-20T21:02:00.003+01:00

So Pickle told me yesterday that I had a baby in my tummy. I've put on a few pounds in the last few weeks but I don't think it's that bad. I tell him we're not having any more babies. He says it doesn't have to be a new baby. That we can have Alex again and he can come back. He thinks that's a great idea. I tell him it doesn't work like that. He knows that but thinks on...

"Alex is in your heart Mummy and he can't move because he is disabled but Nan is in there too and she can move so she can push Alex out into your tummy and then he can come back." As always, I am loving his logic. I tell him it doesn't work like that. He knows that but thinks on...

"If Alex was in our throat then we could be sick and he could come back". I tell him it doesn't work like that. He knows that.

Flying solo

2010-07-19T20:30:00.001+01:00

I quite literally managed to fly solo. Well, I say that, I wasn't actually piloting the plane. But I did fly from Luton to Belfast alone, managing to leave my children behind without leaving any notes (or posts) saying how much I loved them in the event of my death. I did ask one friend if she'd stay in touch with the boys if something did happen but only because I wanted her to know that I'd like her to. I realise to any frequent flyers this is a touch melodramatic, even my former (pre-kids) self who has happily(ish) flown to Australia alone, realises this - nonetheless I was pretty proud of myself. Also glad it's over.

Life has been reasonably hectic lately. Working a bit too hard (although feeling like I'm not doing quite enough), seeing lots of friends, writing a charity newsletter for http://www.specialkidsintheuk.org/ and trying to be a good Mum and a good enough wife. Think I'm just about holding it together.

Iguanas love bananas (and other Mexican tales)

2010-06-24T22:06:00.003+01:00

Our holiday to Mexico was hot and very humid. My husband doesn't really like hot holidays. To be honest we wouldn't have chosen to go there if it hadn't been for my niece's wedding. I promised her years ago that I'd go to her wedding anywhere in the world and I do like to keep a promise.

I wonder if we'd have gone if Monkey had still been with us. I don't think we would have done. I think I would have used him as my excuse not to fly. It would have been difficult. Organising medical supplies and special seating arrangements. The threat of last minute illnesses meaning we couldn't go. I think I would have found it all too stressful (and conveniently so). I know (although only virtually) a lady who happily packs up her 2 beautiful daughters with a range of complex health issues and I am a little ashamed. Most things are possible if you want them enough.

However, although my motives may not have been pure, with hindsight, I think it would have been the right decision. It was a long flight and uncomfortably hot most of the time. The swimming pool would have been Monkey friendly and there would have been some new experiences; sounds and smells and the Mexican people were lovely. Ultimately though, I think it would have put too much stress on us as a family.

There's a pressure when you go on holiday that you have to have a great time. Even without Monkey complications, this was not always possible. Did I mention husband hated the heat? Pickle and Wotsit played up occassionally, in a very normal nearly 2 and 3 an a 1/2 year old kind of way, and we disagreed about how to respond. The music by the pool was loud and the holiday was a little Ibiza-esque at times. Throw in sickness, diorrhoea, epilepsy and sleepless nights and it would, understandably, have been quite tough and less of a break from day to day routines and difficulties. I think we'd have stayed closer to home and had shorter breaks. That would have been fine for me. And the boys for a long while. But I thnk there could have been some resentment about not being able to do things as readily as other families.

I think about this because it makes me cherish our freedom, our ability to do things on the spur of the moment and to realise how lucky we are. Don't get me wrong, I would give up this freedom for one more day with Monkey but, hey, that's not possible.

So how was Mexico? I don't know! I feel a bit of a fraud in that we have visited Mexico but not really seen Mexico. The hotel was all inclusive and the holiday expensive. Day trips were even more expensive so we only managed one. Sitting still is not a family strength.

All that said, we had a great time. We spent a chunk of time together. I got to see my niece get married (she looked stunning) and got to know, and love, her new husband. Wotsit started to talk A LOT (also chipped his tooth in the swimming pool) and Pickle's swimming came on leaps and bounds. As a result of sharing a room Pickle's heffalump Lumpy is now called Humpy - who knew little boys could be quite so amorous! And my husband was definitely jealous that his son was having more fun than he was.

We also learnt that, when looking at Mayan ruins (our one cultural trip), the only thing worse than being frazzled in the sun, is being viciously attacked by mosquitos in the shade. To distract the boys from the heat and the mossies, I decied to give them some fruit (food never fails to distract in our house). And that is when I learnt that Iguanas love bananas.

Off we go to Mexico (no valium required)

2010-06-14T17:59:00.001+01:00

Actually, we're back but I wanted to write about the build up...

I've mentioned before my fear of flying. I was doing quite well and wasn't too apprehensive this time. I had some herbal sweets that were meant to calm me and my friend had given me some of her valium which she'd got from the docs for an upcoming flight to Spain (clearly not advocating sharing perscriptions but didn't see the harm). My husband knew that I was very unlikely to take them but I gave him permission (I'm surprised he didn't make me sign some kind of consent in advance to absolve him of all responsibility) to administer them if it became necessary (in much the same way he'd give the cat her worm tablets).

We were leaving on a Thursday and I had everything packed on the Sunday. This is out of character. Very out of character. My preferred state is, in many aspects of my life, to be a little bit out of control and last minute. However, I have to say, this level of organisation was definitely a key factor in keeping me calm.

My last day at work on the Tuesday and I worked until late so everyone said 'Bye, have a nice holiday' as they were leaving. This started my nerves a little and I reacted in a way that may have been more appropriate if they'd said 'It's been nice knowing you'.

On the Wednesday I was in sole charge of the little people and had to take the cat to the cattery and do a few last minute bits before driving to the Grandparents who were taking us to the airport the following day. And then I started to feel sick. It dawned on me that I was leaving Monkey behind. I realise this is reasonably ridiculous and we have been on holiday since he died and I hadn't felt like this before. I think it was to do with the flight. Anyway, we cut some flowers from the garden and I wrote a little note and we stopped at the church and dropped them off. I can't remember exactly what I wrote but I think Pickle captured it when a week later he was pretending to write on the wall of the swimming pool 'Dear Alex, I still love you but I am in Mexico'. Think that pretty much summed up my thoughts.

So, how was the flight? We flew with my youngest niece (21). It was the first time she'd flown without her Mum and she was a little bit apprehensive. I took charge, maintained an air of calm, my children were the best behaved children on the flight (although they slipped down a place or two on the return journey) and it was uneventful - no valium required.

The jokes get better

2010-06-13T19:50:00.001+01:00

Mummy, when is a door not a door?
Pickle's punchline: When it's a jam pot.

Like his Daddy in every way except his ability to tell jokes, which he gets from his Mummy.

Tipping Point

2010-05-11T06:17:00.003+01:00

One thousand and five days you were here
One thousand and five days you've been gone
I knew I would mark this day, if only in thought
I worked out when it would come

It has been taunting me and now it is here
A day that means something and nothing, yet something
This is the tipping point
And I don't like it.

Pickle compliments

2010-05-05T20:43:00.003+01:00

'You are my favourite Mummy. If I was in a shop I would pick you.'

Thank you sweetheart. I love you too. x

Cinema heaven

2010-05-03T21:31:00.005+01:00

We took Pickle and Wotsit to the cinema for the first time on Saturday. In years to come, I wonder if they'll be embarrassed that their first trip to the cinema was to see The Princess and the Frog!

Pickle was initially a bit apprehensive about the dark and one of the trailers nearly had him heading for the exit but he settled in when the film got underway and was mesmerised throughout. He managed not to be scared by the voodoo shadows and was really excited when the frogs became human again. Wotsit was equally transfixed and loved the music. But if I'm honest, I think he enjoyed the popcorn the most. He fell asleep 20 minutes before the end and gently snored. I wanted to capture that moment (hence the post) - Wotsit on my lap and Pickle snuggled in. It was a very good moment.

If you get the opportunity, Go Ape

2010-05-01T21:33:00.004+01:00

It's so much fun. Surprisingly, given my previous post, flying through the air on a zip wire or a tarzan swing in the tree tops is brilliant and not at all scary. I am behaving in a slightly evangelical fashion about it and want everyone to give it a go if they get the chance. And I want to do it again. It was great to be oustide (rain threatened but held off), doing something a bit different and getting some exercise without even realising it (but my stomach muscles are well aware of it today).

And that is how I celebrated my 37th birthday. (Well that and a few glasses of wine!)

Scaryplanes

2010-04-28T13:35:00.005+01:00

I have a fear of flying. For the most part I am incredibly rational but planes do something to me I can't quite explain. Once up in the air I'm generally okay. At that point, I no longer have a choice about being on the plane and therefore there seems to be very little point worrying too much. Don't get me wrong, I never actually relax, I'm just not screaming 'let me off'.

We didn't fly much as a family when I was younger but there was the odd trip to Portugal with my Dad. I don't remember being afraid. I do remember the first time I was a bit apprehensive. I was 18 and going to Ibiza with my boyfriend (the quiet side of the island for those who might envisage me raving). I was aware that I didn't have an adult with me and that made me a bit nervous. But it was fine.

My first major flight was to Australia to visit my Mum when I was 21 (different boyfriend) and I was so excited that I don't think I was scared. I flew out again when I was 24, on my own this time. On the way out I felt quite intrepid - I'm not reknowned for doing things on my own and I was proud of myself. But I was visiting specifically to see my Step Dad who was on his last legs (aged 60 but a diabetic who didn't really look after himself). I had a lovely 10 days. My Step Dad was actually really well and you'd be forgiven for thinking it was a false alarm; that he wasn't dying.

They took me to the airport and we said goodbye. I've never liked goodbyes (since Mum emmigrated when I was 14) but this was really bad, as you'd expect I guess. My Mum doesn't really do tears (not openly anyway) so I pulled myself together and that was that. I boarded the flight feeling so sick and so scared. I think it was just all too much emotionally. Saying Goodbye to Mum everytime I see her is always tough for me - a lot of sadness and some anger, the feeling of abandonment all over again. But with the added knowledge that I wouldn't see my Step Dad again, it was a tough flight.

I don't know if this is why I'm scared of flying but I know that from that point on, I've dreaded flying. I have flown but never willingly and it really takes the edge off holidays. Monkey was a well travelled little boy - Italy, Spain, South Africa and Scotland. And I was much better for having the distraction of a Monkey. But the last time we flew (to Scotland), there had been an incident on the runway (turned out to be reasonably minor) and the flight home was delayed. I persuaded my husband to hire a car and we drove from Edinburgh to Northampton.

I haven't flown since. It would be helpful for work sometimes but I don't. The recent volcanic ash cloud was a godsend for me (couldn't have got to Belfast if I'd wanted to).

But here's the thing. I'm going to Mexico for my nieces wedding in a few weeks. It will be the first time Pickle and Wotist have flown. And I need to be brave. I promise to be brave. I will not show my irrational fear. I will make it part of an exciting holiday for the boys. And at no point will I refer to the contraption we are flying in as a 'scaryplane'.

I am truly selfish

2010-04-25T19:29:00.003+01:00

When Monkey died, we wrote a few words for his funeral, maybe one day I'll share them. One of the things that came to mind was that I was glad that he was no longer in pain. There's no doubt that he was often very uncomfortable. Constipation was sometimes hideous. He cried and I cried. Air in his tummy from his gastrostomy. Stiff arms and legs. The tightest hamstrings. Seizures that would twist his neck very sharply. Reflux burning.

All that pain and I could not write those words, they would not have been true. I was not glad. I wanted him back.

I am selfish

2010-04-24T14:18:00.003+01:00

At the minute, I'm working compressed working hours. This means I'm in the office at 7.30am and rarely get to see Wotsit before he wakes up. Doing this means I can have Wednesdays off with the boys and get paid for 5 days a week. A little while ago, we needed the money. Now my husband is about to start a new job and I can't decide whether to continue these hours or go back to 4 days.

A bit of me says carry on, at least until husband is through his probationary period at work (6 months), earn a bit more money, save it and help towards the long term plan of finding a different job when the boys start school. If I'm on honest, the bit of the day I'm missing out on is normally quite stressful. Getting everyone dressed and out the door on time. I've always found this easier if there's just one adult trying to be in charge! Do the boys miss me? Pickle's okay I think. Wotist's a bit clingy but not sure if the two things are connected. I'm also a lot better at my job and I like that.

I think mostly my motives are selfish but I think it works for the family so I may carry on a bit longer and see how we get on. The bad news is there's less time for blogging!

Run a mile

2010-04-18T20:59:00.003+01:00

Finally feeling better after a couple of weeks of some kind of lurgy. Scared myself by passing out at my in-law's house. Only happened the once, 4am whilst sitting on the loo (how glamarous). I was reassured in the morning that everyone heard the crash, thought one of the children had fallen out of bed, waited for the cry and when it didn't come, rolled over and went back to sleep. I did wake my husband up - he cleared the blood off the bathroom floor and bought me some frozen peas for my head.

A few days holday with family followed. Definitely the best place to be when you're feeling under the weather. Kids had a blast at the 'pirate ship' hotel, were well behaved and grew up before my eyes.

Back to work, still feeling groggy but not groggy enough to stay at home. Week was busy but all ok. And then a lovely weekend. Swimming with boys, shopping with friends, a babysitter for a night out on Saturday.

Today, managed a short run this morning and then took the kids to the park where we watched the end of a 10k run in our local town. This was followed by a kids fun run - 1 mile. Pickle was desperately uninterested, he was working his way through a picnic and running didn't appear that attractive. Moments before the race started he decided he wanted to join in. He was going to do it with my friend but, at the last minute, needed Mummy. We weren't aiming to do the whole mile but turns out Pickle has some of my determination and responded fantastically well to encouragement from marshalls along the way. Much to his delight, he pipped me at the post and crossed the finish line ahead of me. He was rewarded with a medal. I was very proud. No need to scratch around for something to take to show and tell tomorrow morning!

3 is a magic number

2010-04-15T21:16:00.002+01:00

I always wanted to have 3 children. I am one of the 3 (the middle one - can you tell?). My husband is one of 3 (the eldest (for completeness)). I always wanted to have 3 children (have I said that?). My husband really only ever wanted to have 2 (never let the buggers outnumber you - the words of a close friend). But when we had Monkey, we knew that one day he would die and we didn't want baby number 2 to be an only child. To be the sole focus of our attention. To have to cope with the loss of his brother on his own. So we started our plan to have 3. No hardship for me, as you can tell.

The thing is, I think I forgot to clarify my requirement - to have 3 children at the same time. We assumed that Monkey would be here until his teens. Maybe that would have been long enough, I don't know.

I know that Monkey can't be replaced but in my mind, my family is incomplete. Of course it is - Monkey isn't here. But that's not the only point. I also have an unfilfilled dream of having more children than we can handle; of being outnumbered, too much noise and an element of chaos (ok, we maybe do have a little bit of chaos).

I am jealous of those who have 3 children. I can't help it. I am delighted for you. I mean it - truly delighted. But the green eyed monster appears.

We have, jointly, decided not to go for number 4. 3 pregnancies, 2 c-sections and 37 this year, means it's not a particularly sensible option for us. I am very glad that my husband, with my agreement, was very happy to go for the snip (Valentine's Day last year - how romantic). As by now, I would be on my knees. And I could probably be quite persuasive.

I know that life rarely goes to plan for any of us and I am so incredibly grateful for the children that I have and the one I had for nearly 3 years. And I am particularly aware that some people struggle for a long time and are unable to have any children. So know that I am grateful but forgive me for still being a fraction envious.

To Monkey's Dad

2010-04-02T12:08:00.004+01:00

You don't get mentioned here very often so I thought I'd write you a short note. We've had some good news this week, you have been offered a job. You had a second interview on Monday which you were reasonably confident about before you went. The interview started at 2pm and when I hadn't heard from you at 5pm, I was guessing that was a good sign. And it was.

I picked the boys up from nursery and they were reasonably vile! By the time you got home with the champagne, I was in tears. I kept trying to congratulate you but I couldn't get excited and I couldn't describe how I was feeling. Which was reasonably miserable. You see, it isn't the first time you have needed to look for a new job because the one you were doing wasn't going so well. And that's fine. I understand that. But I get scared that it's something of a vicious circle. In an ideal world this isn't the kind of work you would do. You'd be a gentleman farmer or an estate manager. We've looked at alternative options/alternative lifestyles but we can't find what we're looking for (or we can't afford it!). I've offered to be the sole breadwinner. Selfishly, I don't want that, I'd like to spend more time with the boys (however vile they can be!) and you don't want it either. But it would give us the stability that I crave.

However, if you insist on working, then I want to plan my dream (which I think you share). I want to be able to pick the boys up from school, do their homework with them and generally be a bit of a nuisance to them. Before they grow up. Whilst they are at school, I want to help some families who either have children with special needs or who have lost a child. I want to honour Monkey's memory in this way.

But I am scared of being disappointed. I love you.

Monday, Tuesday, Wednesday, Thursday, Friday, Saturday, Spaday

2010-03-29T21:05:00.004+01:00

Oh, if only every Sunday could be a Spaday. Two good friends, a massage, a facial, some bizarre mineral treatment (mostly a placebo effect I'm sure) and a good chat. Even with absolutely no wine, we had a fabulous day.

Made even better by returning to a calm house at bathtime with the most delightful two small boys incredibly excited to see me. Bliss.

The Joker

2010-03-25T20:29:00.004Z

Pickle is developing a sense of humour. It is fabulous.

Bedtime now comprises one bedtime story, one quick look back through the book, 3 songs and 2 jokes! Am I a bit soft?!

Most of the jokes are about animals crossing the road, or walking on one leg or rolling down a hill. They are not funny. Which makes them so much funnier. Pickle does this lovely false laugh after the joke and says 'that's funny' and we're all expected to crack up. Tonight took a slightly different turn:

Pickle: Why did the chicken cross the road?
Me: I don't know, why did the chicken cross the road?
Pickle: Because the fox was trying to eat it.
Me: (laughing) That's really good.
Pickle: (completely serious) It's not funny Mummy, the fox is trying to eat the chicken.

Oh well, I've never been that good at understanding jokes (evidenced this weekend when my I finally learned that the newspaper wasn't black, white and red all over but black, white and read all over).

2010-03-14T21:01:00.002Z

On Friday, I was asked whether I was doing anything special for Mothers' Day. My reply? Not really. We're going to my Mother-in-Law's for a family lunch. It will be nice but I'm not really big on the whole Mothers' day thing. I want my kids to love me every day and vice versa. And my husbands really helpful at home all the time (please don't hate me, I know I'm lucky). And one of my children is missing (less lucky). And my Mum emigrated to Australia when I was 14 and I hated Mothers' Day for quite a long time.

Today? I'm up with Pickle early. He's being a delight. I go for a run before Wotsit wakes up. (I never run far (or fast) (or often) but I love it. 30 minutes of solitude, if I run on my own. Or 30 minutes of therapy, if I run with my friend.) I drive for 5 minutes so I can run my favourite route. On the way back, I had no concious intention of stopping at the church (Monkey's ashes are there) but I did. I welled up, shed a few tears and was comforted a bit by a woodpecker.

I got back and the boys were having their breakfast. I told my husband something had made me stop at the church and I'd cried and Pickle pipes up:

'Why did you cry Mum?'
I had a lump in my throat I can normally contain. 'Because Monkey's not here Pickle and I wish he was. But when I came in and saw you two eating your breakfast so beautifully, you made me smile a really big smile'
'You musn't cry Mummy, me and Oliver haven't died yet'.

And I didn't cry anymore and we've had a lovely day.

Why Monkey died

2010-03-11T21:03:00.004Z

I wonder, if you read this, if you have ever wondered why Monkey died. It's a difficult question to ask, I know. In the last two and a half years, only one person has asked me why. I understand that, I don't think I'd ask someone. But I kind of think you should. Otherwise, where does the conversation go next?

You: How many children have you had?
Me: 3

Interlude: By the way, ask me how many children I have and I'll say 2. I hate it, I feel a bit like I'm denying Monkey's existence, but I feel I should answer the question you have asked me. Otherwise I'm drawing you into a conversation that will make you (and me) feel awkward and you hadn't even asked. Ask me how many children I've had and I'll nearly always say 3. Giving me an opportunity to mention Monkey's name. However difficult (for everyone) I need to tell you so I can believe that, once upon a time, he was here.

You: How old are they?
Me: Pickle's 3, Wotsit's 18mths, unfortunately Monkey died a couple of years ago.
You: Oh, I'm sorry...

What comes next? Often, nothing. Sometimes, something reasonably inane 'did you see that programme last night on telly'. But only once, 'I'm sorry, what happened?'.

The answer 'I don't know'. Really unsatisfactory. There are two shools of thought.

He had a major epileptic fit which was so severe, it turned him over and stopped his heart beating. This is the school of thought I like (if it's possible to like any of them). Quick and painless AND nothing I could have done to prevent it.

Alternatively, he rolled over onto his front, something he'd never done before. Something he could probably only have done by kicking his legs a lot because he was uncomfortable (which he was when I left him). Face down on his pillow, he could not move and could not breathe. Now you can see why I prefer the first option.

During that first week, I spent some time with my head in my pillow to see how it would feel if I couldn't breathe. Hard to say, as self preservation kicks in pretty quickly when you have normal use of all your limbs.

Surely they'd do some kind of post mortem so then we'd know? No. I'm not really sure what happened here. I honestly think someone was trying to spare us the pain of perhaps identifying school of thought number two. We assumed there would be a pm. That's what they said at the hospital. When we (my husband) spoke to the Coroner on the Monday (Monkey died Friday night), he said that a pm was unlikely to be conclusive as Monkey's brain damage was so severe, they wouldn't be able to see very much. We accepted that. It was a good thing in that it meant that we could get on with funeral arrangements (we needed something to do) and Monkey could be left in some kind of peace.

His death certificate states the primary cause of death as 'aspiration pneumonia' and the secondary cause as 'complications arising from cerebral palsy'. As someone who goes to reasonable lengths to be truthful, I found this quite difficult. The way I write about it, you'd be forgiven for thinking I'd like to know, that I need to know. But I don't, it doesn't change anything. Monkey's still gone.

So, on second thoughts, maybe it's better not to ask....

Surplus to requirements

2010-03-06T21:15:00.003Z

It's been a lovely day. Despite, for a few moments, feeling I was surplus to requirements. I don't want to be a Mum who needs her children to need her but it does take some getting used to when you suddenly realise their independence...

Pickle was playing with his cousin in the (very muddy) garden. Out I went with Wotsit. In his wellies he's a wobbly walker so there we were, hand in hand. We had a little plod around the garden, then stood and watched Daddy rotovating.

And then Wotsit let go.

He wandered off without so much as a backward glance. Climbed over the garden wall and found his brother and bigger cousin. I was proud momentarily, admiring his independence. And then I floundered a little. Obviously I'm not completely surplus to requirements - he is after all only 18 months old. But it was definietly a glimpse of the future. I was a bit sad and suddenly very broody. So I reached for the smallest nephew and gave him a great big hug.

Moments later, Wotsit took a (minor) tumble and I was needed once more.

Crystal Ball

2010-03-03T13:28:00.002Z

I'd quite like a crystal ball. I think I'd like to know where we're going to end up and then I could work out the best way to get there! I know it doesn't work like that but it seems to me that it should. That's what I do at work. I work out what we ought to be doing, review some options, make some recommendations and set about implementing it.

I know there are lots of arguments against this and I know I should just be enjoying the journey. But it's all a bit stressful at the moment. Husband has lost his job at a time when I was hoping to lose mine. I keep searching for places to live (house porn as my husband calls it) and really want the boys to be settled somewhere when they start school (Pickle starts in January 2011). I don't even mind if we stay where we are (as long as we can afford the mortgage), I'd just like some certainty.

I'm sure I remember posting, not that long ago, that I was going to try and go with the flow. I think I lied!

Is Pickle reading my blog?

2010-02-23T21:22:00.003Z

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)

2010-02-21T16:47:00.007Z

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

2010-02-20T09:52:00.005Z

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

2010-02-10T11:03:00.003Z

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?

2010-02-07T20:02:00.003Z

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

2010-02-06T14:20:00.003Z

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

2010-02-05T20:04:00.005Z

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

2010-02-01T21:19:00.004Z

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.

Last Word

2010-01-30T20:31:00.003Z

I finish work at 4pm on a Friday and I enjoy listening to Last Word on the way home. It always makes me think that I might like to be on it (in the very distant future). I'm not looking for fame or fortune and I think it's highly unlikely that I'm going to change the world but it would be nice to make a difference to a few lives so that your not being here anymore might be worthy of mention. That there was some kind of lasting impact of you having been here. Maybe beyond your own family. Let's hope I don't go too soon because I think I have some way to go!

The upsides to Wotsit potentially having German Measles

2010-01-26T13:59:00.004Z

1) A sneaky afternoon blog (whilst Wotsit sleeps I hasten to add)
2) Peanut butter on toast for lunch
3) Avoiding one dull and not very relevant meeting

The downsides
1) It's cold in my house
2) I have a tonne of work to do today
3) He may actually have German measles (thankfully, he's pretty chirpy and symptoms to now have been almost non-existent so looks pretty mild)

PS - Wotsit didn't have German measles and the house soon warmed up - so turned out to be mostly upside!

The gist of it was...

2010-01-23T19:28:00.004Z

I've not felt terribly happy. And not because Monkey's not here (I want him here but I can be happy whilst wanting him here). Just some kind of internal struggle with being a good Mum, being good at my job, husband's job being at risk, wanting more from life, pressure, pressure, pressure. All self generated. I think I was happier when Monkey was here. Don't get me wrong, life with a severely disabled child can be tricky, but I had a reasonably clear role. Haven't quite worked out what mine is/should be yet. Not great with ambiguity (or so my boss tells me).

Am in the last throes of putting together a photo book capturing much of last year. And on reflection (I know you don't take pictures of the miserable/mundane moments) have realised (better late than never) I am happy! Here's my little summary which is going on the front page:

Starting with Christmas 2008 at Pear Tree Cottage and finishing with Christmas 2009 in Pxxxx. With lots in between... in no particular order. Raising money for Keech Hospice Care dressed as Santa and dressed to impress at the Butterfly Ball. The arrival of Baby B in January. A year in which Pickle still loved his builder's helmet and Wotsit loved muslin squares. A fair bit of snow and a broken arm for Big B. Knoll House of course, with the Fxxxx & Fxxx tribe. Lots of parties. Lots of friends. Lots of days out. Picnics. A Christening. An impromptu visit from Grandma. Wotsit's 1st birthday and Pickle's 3rd. Axx turned 21 and Nxxxx was 40. A grown up weekend away in the New Forest. A lovely family getaway - farm holiday near Southwold with Grandma. The arrival of the chickens. Lots of fun with 'The Usual Suspects'. Walls knocked down. Walls put up. I returned to work. Father Christmas bought Pickle the oven gloves he'd hoped for. The boys grew up (and so did the girls). Happy days and someone missing xxx

So, my belated New Years Resolution is to remember to enjoy the moments whilst I'm in them.

Post MIA

2010-01-22T19:25:00.003Z

I've just lost my last post. Sure I saw it saving its merryself. Not in draft, not there to be edited. I think it may lose something second time around but will have another go soon.

Disability awareness at 3

2010-01-19T19:44:00.003Z

Pickle came home from nursery yesterday telling me about a boy who was sick in The Hut (his room at nursery) - fascinating to a 3 year old. I'm thinking 'great, hope there's not some kind of bug going around'. He went on to say that the little boy couldn't walk like Monkey and that he was disabled. All perfectly believable although I was worried that his imagination had taken over (the nursery room isn't that accessible and I hadn't seen any disabled children). When he said there was another little boy who was disabled, I really thought he was making it up (is that awful?).

Anyway, I asked the girls tonight and he is absolutely right so I am proud of my little boy's disability awareness.

Pickle and I went on to have a further chat when he referred to the boys with disabilities as babies. I asked if they were babies or big boys who couldn't walk. He decided that they were big boys who couldn't walk just like his big brother who was bigger than him so couldn't have been a baby. Good logic, Son.

It's behind you!

2010-01-17T21:34:00.002Z

I realise it's not ideal to have to scare your children into giving you the best hug ever. However at the pantomime yesterday afternoon - half scared, half fascinated children clung to me and I loved every minute of it. Not sure if they were more scared of the baddie, the dragon or Grandad dressed as a very camp genie of the lamp!

Overcoming shyness

2010-01-15T19:29:00.004Z

I am painfully shy. I find it incredibly hard to strike up a conversation with someone unless I know them really well (or it's virtual). It frustrates me a lot. As a child, particularly following a move of schools, I was considered stuck up. As an adult, it has stopped me making new friends (although I'm very happy with those I have!) and joining mother and baby groups. At the theatre the other evening, I know the American guy next to me at the theatre would have struck up a conversation but I avoided eye contact on every occassion. Yet I was really interested to learn more about him. I like knowing more about people, so what am I scared of? Looking silly, maybe unintelligent, saying too much (I can't really do small talk). I'm not sure really - probably all of these things. Actually, I think mostly it's that I'm worried that people won't like me.

Yesterday I agonised about speaking to someone. This was part shyness and part awkwardness. Their baby had recently died, 2 days old, completely unexpected. They were back in the office after some time off - it was the first time I had seen him since I'd heard the news. What's the right thing to do?

I was completely unproductive for the next hour (sorry boss) as I agonised about this. I know that grief is very personal. I know that one of the things that I found hard was that very few people spoke of Monkey or what had happened when I returned to work and that made things harder for me (whilst shy, I am also incredibly open). But this was a man... in the office. He might not want to get all emotional. I might make it awkward for him. He might just be trying to carry on, not wanting to dwell. Grief is very personal, whose to say what his preference might be. I weighed it up and decided that on balance the right thing to do was to put my shyness to one side and to acknowledge his loss, if there was an appropriate opportunity.

The perfect opportunity arose, the conversation went well. I think I may have helped a small bit. And I think it was the right thing to do.

My next conundrum. We had a brief chat and he asked me how long it took me to get back to 'normal'. I came up with an answer (which I'll share one day). The thing is I now have a much better answer which I want to share because I think it might be helpful but don't want to appear like this mad, bereaved stalker woman. Hmmm.

Hush Little Baby

2010-01-13T19:57:00.004Z

Every night, following Pickle's bedtime story, he has 3 songs. This is his attempt at staying up. I know that, but I humour him and love it. We don't deviate - Hush Little Baby, Twinkle Twinkle Chocolate Bar and Twinkle Twinkle Little Star. (I can't sing by the way).

Some nights I can't quite make it through Hush Little Baby without crying (Pickle either doesn't notice or doesn't mind!). I used to sing it to Monkey when he couldn't sleep. It started when a friend bought him a musical butterfly when he was born - pull it's tail (I know butterflies don't have tails but this one did) and it would play Hush Little Baby. The butterfly came on holiday with us and to hospital stays. Monkey seemed to like the music. I didn't know the words so I looked them up. Then, when he was a bit bigger, it became something I'd sing to comfort him. He'd go through phases - I guess based on how comfortable he was feeling. Quite often, he'd wait until I'd just sat down to eat my dinner before starting to wail. I used to sing Hush Little Baby followed by I know an Old Lady who Swallowed a Fly (strange combination) and if he hadn't dropped off, I'd start again. I have no idea how many times I have sung these songs. It seemed fitting to play Hush Little Baby at Monkey's funeral - a last lullaby.

I can't remember how I came to start singing it for Pickle but I do.

Today, after an exhausting day for Pickle, he lies still whilst I sing and snuggles in, sometimes his little arm comes out, reaches around my neck and pulls me in. (Normally, he wriggles and squirms and plays me up a bit until the last minute). The very last minute when I shut his door he calls out sleepily 'I love you Mum' and I melt...

Coming Home

2010-01-09T19:10:00.007Z

I remember phoning my friend to say that I wouldn't be able to make it to the work Christmas Party as Monkey was coming home (can't actually belive I was contemplating going), so he must have come home early December 2004. We'd stayed at the hospital the night before in the hottest room ever where Monkey had slept with us - to check we could cope. We didn't get a lot of sleep that night - partly becuase we were so hot, excited and scared and (oh, isn't this the reality of a natural birth) I was in agony with piles! When we finally fell asleep, and then woke up, we were so worried that Monkey wasn't breathing as he was so quiet - but we had all survived the night and we were finally discharged.

We knew at this stage that it was likely he had some brain damage although the initial brain scan hadn't looked too bad - we had been prepared that it was highly likely that he might have some difficulties but had no real idea what this would mean. It's impossible to know - I realise that now - but that was a difficult concept to grasp initially.

Monkey had never mastered the feeding so was discharged with an NG tube. And we had our first professional, Belinda - a lovely, slightly batty but all the better for it, community nurse who checked up on us and showed us how to repass the tube if it came out. It did come out a couple of weeks later but we didn't repass it. We told Monkey he'd have to manage without it - and he did. It was not easy - for either of us. I often dreaded feeding time but I had nothing else to do - I was on maternity leave to be with my son and we bonded over those hour long feeds.

I can't remember the sequence of events but I remember the appointment to review Monkey's second MRI which showed the extent of the damage to all areas of his brain. The doctor seemed sadder than I think we were. I think because she knew a lot more about what was to follow than we did. We were given a diagnosis of severe spastic quadraplegia and my husband asked about life expectancy - not a question I was expecting him to ask and not something I'd given any thought to so the answer came as something of a surprise. Based on that, we thought we'd lose him in his teens. We then drove to Nottingham and bought a sofa - well what are you supposed to do?

Unconnected, reasonably random thoughts

2010-01-04T20:29:00.003Z

So here's what's in my mind at the moment:

1) New Year's Eve was lovely - highlight was seeing the New Year in with a hot chocolate - I know how to party!
2) I really would like to do something with my life that is a little more worthwhile (referring to my day job rather than the upbringing of the boys).
3) I'd love to sleep the whole night through with no interruptions (last night it was Pickle, Wotsit & Husband).
4) Wotsit really is becoming a Wotsit. Think I may have experienced his first tantrum yesterday - wow! He is both a daredevil and a terror.
5) Managed a short run yesterday morning (reasonably treacherous given the ice). Stopped at the church yard and a had a few tears at Monkey's plaque - another year/every year without you.
6) Must buy my husband's birthday present (potato ricer, conical sieve and a cake stand - what more could a man want?).
7) Rupert Penryn-Jones is lovely, even in a dress and The Priory was a fab play.

Is it any wonder I feel quite tired?

I think it was a good Chrsitmas

2009-12-28T20:17:00.003Z

Christmas Eve take away with good friends (year 3 of our 'tradition'), a little more frantic than usual given broken arm, us hosting Christmas and working Christmas Eve. Pickle woke at 4.30 (lost Lumpy) and 5.30 (weeeee Mummy) and failed to notice Father Christmas had been. Stockings were exciting, about 6ish followed by breakfast and a few pressies, a chat with Grandma on the webcam and then waiting for my husband's family to arrive. Christmas Day felt reasonably fraught - everyone tired and a frustrated cook in the kitchen - but on reflection was nice (did I mention I was given tickets to see Rupert Penryn Jones at the Royal Theatre?).

Boxing Day almost a repeat but throw in 2 more nephews and their parents and its double the fun. Pickle and Wotsit much happier for the company. I managed to elicit tears from my mother in law with my home made Christmas Crackers complete with personal limericks!

Evening of the 27th, half the party departed, spent the evening (I say evening, I was in bed by 9.30)reading one of my new books 'An exact replica of a figment of my imagination' by Elizabeth McCracken. I'm finding it quite good at explaining how I feel sometimes, most pertinently "It's a happy life and someone is missing' - think the key there is that it's not 'but someone is missing' rather 'and someone is missing'. (Love you Monkey).

Tonight, we are home alone. Content and tired. I'm getting my computer fix, Top Gear is quietly annoying me (just too ridiculous) and we're spinning out the anticipation of watching Gavin and Stacey on bbci...

A new found respect for my husband

2009-12-21T20:08:00.005Z

I've always known that I'm spoilt by my husband. He cooks most meals (he's better at it -in fact he's reasonably brilliant at it), he empties the nappy bin, he cleans out the chickens, he tidies the kitchen, he starts my car when it's frozen, he'll happily do the food shopping, he'll change a dirty nappy if I ask him to, I sometimes get to have a bath for an hour on a Saturday morning, he rubs my very tense shoulders and he even occassionally cleans my shoes.

And it's all on hold! A trip to the tip at the weekend, some ice, a paving slab... Need I say more? One broken arm later and I'm in charge of all these things. I can't promise this feeling will last 6 weeks, but so far I'm quite enjoying it; being a bit more independent and, if I'm honest, maybe a bit less selfish and a bit more helpful.

Slightly apprehensive that this is the first year we have persuaded the entire family to come to our house for Chistmas and my chef is incapacitated! Turkey fajitas anyone?! (Mend quickly darling.)

Three kisses

2009-12-17T20:02:00.003Z

There are a few things which I think are particularly poignant. For me, one of those is signing a card.

When you first have a baby there's the excitement of adding their name to yours. And then to their siblings as your family grows. But what do you do when you stop including a name?

I remember the first time I had to do this - my sister in law's 30th birthday - 19th August 2007. 9 days after Monkey died - the day before his funeral. It was horrible. 17 days earlier I'd written her anniversary card from me, my husband, Monkey & Pickle. I saw both cards on the windowsill and it really brought it home.

The 2007 Christmas card writing session was tough. You're repeatedly leaving a gap. The flow of names is just not right. You do it about 40 or 50 times. That year was tough for others too - I know a lot of people didn't know what to say. 'Happy Christmas' just wasn't quite right (although we did have a Happy Christmas). One (lovely but slightly odd) friend included Monkey's name in brackets which was lovely (but slightly odd). But I loved the fact that she was brave enough to say his name and let us know in that way that she was thinking of us and him. We did have lots of lovely acknowledgements but we also had lots of friends and family who didn't, or couldn't, acknowledge Monkey's absence in some way. I don't blame them - I would have had no idea what to do in the same situation. And even now couldn't promise I'd get it right.

2008 year was strange too. A new name to add, Wotsit, but it didn't have quite the same ring.

This year, what was hard was that actually I have got used to Monkey's name not being there. I still feel the gap but it's not as obvious. Although just as painful. I had a Christmas card from a friend whose daughter died and she had written the card to the four of us and drawn a little star. And she'd signed it from the four of them and her little star. I loved that.

So, if you're on my Christmas card list - have a look - you'll see 3 kisses. One from each of my boys.

xxx

Occassionally losing it

2009-12-15T04:54:00.002Z

I'm lucky, I do only occassionally lose the plot and even then not too drastically. I don't know why that is and I'm sometimes not sure it's a good thing. I think perhaps it's because I'm lucky enough to have another 2 children who need me. I sometimes wonder if it's because I didn't love Monkey enough and I have to remind myself that the only thing I was certain of when he died is that I couldn't possibly have loved him any more than I did. Maybe I'm just built that way. Perhaps we all are a bit - maybe it's just survival.

Whatever it is, Friday (for me) was a 'losing it' day. Which basically means crying intermittently at the little things.

Driving boys to nursery, Pickle and I are discussing Christmas and for the first time I explain to him how lucky we are and how there are lots of children who won't get toys for Christmas and who actually just need food, water and clothes. He offfers to give them some of his. Cue disproportionate tears.

We arrive at nursery. Pickle is deposited in the hut. I take Wotsit to his room. Just as I'm leaving he trips (whilst reaching to snatch a toy from an unsuspecting child) and lands head first on the pointy roof of said toy. He's a tough nut but this definitely hurts. One of the girls starts to comfort him and I intervene. I find a rocking chair, we cuddle and he starts to settle. There is Christmas music playing in the background and an occassional whimper. Cue more tears (mine). I eventually extricate myself (still crying) and convince the girls I'm fine. I think they get that I'm not overreacting to Wotsit's bump and maybe understand there's a bit more at play but I'm not sure. And I don't mind.

I confess my tears to a couple of friends at work so they are suitably warned, just in case. And as a result get at least 2 cups of tea and some chocolate to help the day along. But I'm actually fine, keep vey busy and have little time (zero) to dwell.

I collect the boys from nursery and I wonder if someone has told them how I'm feeling as they are reasonably angelic at bath time. I manage to get them to bed with no tears (mine or theirs).

I phone my friend who is moving home the next day and am unprepared for the tears that follow as I realise I won't visit her old house again and how many memories there are of Monkey there. She is the friend most likely to cry with me but (in a nice way) has no time as she still has a million boxes to pack...

And I am fine.

Special Care

2009-12-04T19:57:00.004Z

Monkey was in special care for 4 weeks. What do I remember?

I remember the first time I saw his eyes - well one of them. Maybe he was nearly a week old, we were wheeling his cot down Hospital Street at Northampton General for his first brain scan and he opened one eye, just for a second.

I remember trying to breastfeed - unsuccessfully! And expressing lots of milk (whilst watching Escape to the Country) that we fed Monkey via an NG tube.

I remember trying every type of bottle and teat combination to try and get Monkey to feed. We were told that he'd be allowed home when he could take a bottle.

I remember the first time he cried. Maybe 10 days old. Having a bath. We were so excited to hear him cry. Other (more experienced) Mums on the ward thought it was funny that we were so pleased to hear him cry, and that that would change in the months to come (and it did).

I remember his consultant. A fabulous doctor who I didn't really like because of the news she had to give us (it is highly likely your son will be severely brain damaged) - but I came to respect and like over the next couple of years.

I remember cuddling my son. For hours and hours and hours. There wasn't really anything else to do. I used to feel like I shouldn't cuddle him all the time, that he'd never learn to settle himself (what would Gina Ford say?). With hindsight, it really didn't matter. There are some things I regret but I can honestly say that too much cuddling is not one of those things!

When your baby's in special care, or your child has special needs, you're referred to as 'Monkey's Mum', never by your name. I can understand this in SCBU - you need to know you are a Mum. Your baby doesn't necessarily have the same demands on you as other babies. You don't get to take them home at night and it's a strange and scary kind of limbo. When your child has special needs, you have a thousand appointments with therapists (many lovely (but not all)) who probably can't possibly remember all the parents' names, so you remain 'Monkey's Mum'. And then, when Monkey dies, it takes you a while to remember who you are without him.

"Look Mummy, there's a low loader"

2009-11-24T14:30:00.003Z

Pickle is 3. He asks lots of questions. In the last few months we've had some interesting discussions about his big brother where you can see he is starting to think for himself but also copy a lot of learned behaviours and comments. 'Alex died didn't he Mummy? (copied). He's with Nan now isn't he Mummy? (making connections). We can't see him any more can we Mummy? (copied) It's a bit sad though isn't it Mummy? (copied and almost exactly matches my tone when I say this). He's still my big brother though isn't he Mummy? (copied). Mummy can we have another baby and he can be my big brother? (thinking for himself). Just as I am reasonably stumped as to how to respond to this, without missing a beat or changing the tone, 'Look Mummy, there's a low loader'. Oh to be 3...

Five

2009-11-12T19:16:00.004Z

Forgive the jumping around but on Monday, Monkey would have been five and I want to talk about that. Five. What would he have been doing? He'd have been at school - that much I know. Other than that, it's actually quite hard to imagine. He'd have been a lot bigger! And heavier. We would have had to have had that hoist installed. But what would he be able to do? I don't know. I can't look at other five year olds for that to be immediately obvious. Would he have been able to sit in his chair and hold his head up for any length of time? Would he have perfected his 'smile'? Would he have been able to press a switch on his tray to get my attention or activate a toy? The latter being what I had dreamt that one day he might be able to do. His disability was severe.

I can probably tell you a lot more about what he still wouldn't have been doing. He would not have been able to sit unaided. He would not have been able to turn to someone who spoke. He wouldn't have a regular or obvious smile. He wouldn't have said Mama.

I have so many questions but not enough time to think about them. What would I have been doing? A subject for another time! Too long for now. Would his brothers love him? Would they resent him? How would my husband be coping? What would life be like? Hospital appointments. Therapists. Stays in hospital - chest infections/operations. Suurounded by medical equipment. Regular vomiting. Constipation followed by (amazing) diarrhoea.

Does it matter? All these hypothetical questions? It does to me, it matters a lot. Sometimes when I'm cuddling Pickle & Wotsit, I need to know where Monkey would have been. I need to know that he wouldn't have been left out. I don't want to forget and this is a way to remember. I also want, at a point in my life when my children don't completely monopolise me, to be able to work in some way with families going through some of these things. I hope that I can help, whether emotionally or practically I'm not sure but if I can remember what it's like to be a Mum to child with a disability, I think I'll be better qualified.

So what did Monday entail? I really wanted some time on my own. Not to cry - although that was part of it - but just to remember and think about the answers to these questions. However, people worry about you being on your own and want to keep you company! So my lovely husband joined me at home. The day was fine. It is just another day, like any other. I tidied the house, messed about on the internet, looked at some photos and missed my son.

How it all began (5 years ago today)

2009-11-09T05:14:00.003Z

I had a reasonably uneventful first pregnancy - put on 4 stone, had hugely swollen ankles, high blood pressure and some protein in my wee. The baby was big for dates but this settled down. I was occassionally checked for pre-eclampsia but was reassured everything was okay. At no point was I concerned. Why would I be? I had no experience to draw on and lots of trust.

I was 4 days overdue and my blood pressure was rising so the midwife told me to pack my bag and in I went (still convinced I wasn't going to have a baby that day). I was induced and started having strong contractions very quickly. Labour started properly at 10pm. I was unaware there were concerns for the baby. According to my husband, I was too busy being terribly polite. However, the midwife had been unhappy with the CTG and had escalated this on several occassions to the registrar who initally thought the baby's heart rate was accelerating, noting some later decelerations with good signs off recovery. The senior registrar arrived at 2.30am. By 3.30am she told me they were going to prep me for theatre but nature took its own course and Monkey was delivered at 4.32am on the 9th November 2004.

The resus team were bleeped - I guess that's when I knew something was wrong. Perhaps I was a little slow on the uptake but the medical staff seemed just as shocked. Thay handed my baby to me whilst we waited for them to arrive and I knew he wasn't okay but don't think I realised he wasn't breathing. I kissed him, and encouraged my husband to do the same, then handed him back. I think I realised how serious things were at that point as I didn't realise that 'he' was a 'he'. I asked the midwife and she said he was a boy and asked his name. Alex.

He went straight up to SCBU and we didn't know much for a while although someone bought us a photo. It was about 8.30am when someone came and told us how he was. Not good. He took his first gasp at 7 minutes, was on a ventilator and had been fitting continuously. We were told very early on that his brain could have been damaged but remained hopeful. I went home after two nights, my husband needed me and I couldn't stay on a maternity ward any longer without my baby beside me. We only lived 5 minutes from the hospital and I spent every waking moment there for the next 4 weeks.

And I fell in love.

To explain

2009-11-01T19:21:00.000Z

Monkey was my first child. He had severe cerebral palsy as a result of a difficult birth. He died aged two and three quarters. I'd like this blog to tell the story of the impact he has had, and continues to have, on my life. I debated the blog name (is there a techie word for that?) long and hard - I don't want anyone who might read this (assuming anyone does) to think that Monkey's shadow is gloomy. It's not (I actually think it's pretty enlightening). Monkey's shadow is just the feeling I have that he is here with me somewhere; that we can't be completely separated. It's the thing that colours my world. My perspective, I suppose.