I think it was a good Chrsitmas

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

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

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

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

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"

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

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)

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

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.