More of Monkey's story

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

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


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

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

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

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

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