Tuesday, 24 November 2009

"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...

Thursday, 12 November 2009


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.

Monday, 9 November 2009

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.

Sunday, 1 November 2009

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.