Tidying the spare room

I’ve tidied the spare room. You probably can’t really see much difference.

Is it wrong that I want to put everything into white boxes? [I’ve tidied more stuff into boxes since the second photo was taken…]

A short autobiography in which my heart defect is a major character

This is a slightly amended piece I wrote for the booklet for visitors to the Scarred for Life exhibition. It’s based on something I wrote years ago for the Somerville Foundation’s book of ‘stories’ from adults with congenital heart defects. If you’ve been reading this blog for any length of time you’ve probably heard it all before (sorry about that), but I thought I’d post it anyway.

I was born with Ventricular Septal Defect (VSD), Transposition of the Great Arteries (TGA), Pulmonary Stenosis and various other non-heart related medical conditions which have made my life interesting. The VSD and the Transposition were both corrected at Harefield Hospital by Sir Magdi Yacoub when I was three years old, using the Rastelli procedure.

I have never been a particularly confident person, although people say I have got better in more recent years. As a child who was slightly built I was easy to knock over. At my wedding my dad mentioned in his speech that I used to get blown over by the wind! And as everyone knows, anything different about someone can be used by other people as an ‘excuse’ to bully or intimidate them, and I got my share of this at school.

As you can imagine, this didn’t exactly help with my self-confidence. Neither did my ineptness at sport and physical exercise! However, school wasn’t a complete disaster for me, because I was good at lessons and a conscientious pupil – or so my teachers said! I think this was my saving grace really, that and some loyal friends. I actually enjoyed school on the whole, and particularly so once I got into the sixth form when we no longer had to do PE!

After I left school my confidence improved due mainly, I think, to continuing and new friendships, for which I am very grateful. I went to university, and loved it. I loved my independence and made the most of the fact that no-one knew much about me. I didn’t tell people about my heart unless I had to, and, because I had more of a say over what I was doing with my life it became much less of an issue. I was more in control of my life than I had ever been – it was up to me how much I exercised, I could decide what I ate and when, I could slow down or speed up just as I wanted! It helped that I was at university to study, and having a heart defect didn’t really affect my ability to write essays.

I became a person with opinions and ideas; or rather I became a person less afraid to express these things. I decided to become a librarian, and eventually got a job as a trainee librarian.

I met my husband at our first training session (although he has now seen the light and decided not to become a librarian!), and we got married in February 2006. Physically, and in other ways, we’re opposites – he loves exercise and doing adventurous things, and water (which I hate!), and when we go shopping he can carry all the stuff I’m too wimpy to carry. He also pushes me up hills, which is great! I hope I’m not becoming too dependent on him, and that he will continue to be patient with me when I’m a difficult person to live with.

We have been through a lot since we got married, including me having heart surgery in 2008, and the birth of our daughter in 2014! The heart surgery was basically a complete re-do of the surgery I had as a toddler. I was getting get more and more tired, and I let my cardiologist know. After various tests (including an attempted MRI I ran away from!), it was decided to clean out the old repairs and make new ones. It was very complex surgery and I was in theatre for 12 hours. It must have been a horrible wait for my parents and husband  – apparently he coped by playing board games! Even after the surgery I still didn’t feel quite right and was experiencing the infamous “dodgy beats”, so I had a pacemaker fitted in 2009. This made a massive difference and I felt much better with a lot more energy.

In 2013 I found out I was pregnant! To say this was a surprise is probably an understatement. I had been told I could have children as long as I didn’t leave it too late and didn’t have “hordes” [this is a quotation from my then cardiologist], and, actually from a ‘heart’ point of view, the pregnancy was all right, it was other things that were a problem. I had obstetric cholestasis and gestational diabetes and I found the second two trimesters really stressful because I was anxious about the baby all the time. I attended the outpatients’ clinic for women with congenital heart defects at the Chelsea & Westminster Hospital. I had a lot of appointments – every week towards the end of the pregnancy. We planned a caesarean because as well as my heart defect there was also the fact that the baby was breech. However, our daughter had other ideas and arrived five weeks early, naturally, in our local hospital. So much for best laid plans, but I think she had the right idea!

Following our daughter’s birth I became a bit more unwell – feeling very tired and carrying extra fluid around, so I now take medication to treat mild-moderate heart failure. Although I feel tired more than I used to I still manage to look after our daughter (with lots of help from my husband) and work part-time in the library I’ve been at since 2005.
Despite the fact that I seem to be living an average middle-class sort of life, I still yearn to be ‘normal’. Sometimes I feel angry about having a heart defect; I feel like it’s taken things away from me and denied me opportunities I could have had – and given me things I’d really rather not have experienced! But on the other hand, I have survived this far (thanks to the NHS and its wonderful people); I’ve done things I never thought I’d do (having a baby, travelling across the world) and, thanks to the Somerville Foundation, I’ve met some lovely fellow heart-defect survivors along the way.

P.S. I think this is a very badly written piece of work, including inappropriate use of exclamation marks.

Rooms

This is just a short post to show you our new house. Sorry the pictures aren’t great – I took them a couple of weeks ago in artificial light at night, and there aren’t any pictures of B’s room because she was asleep in it at the time! I’ll try and post one later. Also, sorry I didn’t tidy up or move anything unsightly (like the bin full of tissues) out of the way…

Choral society

I have joined another choir! It is on my day of rest, so in theory I should have enough energy to go to it, although this hasn’t been the case every week so far.But I have managed to get to a few rehearsals. We’re doing Mozart’s Mass in C Minor, which I haven’t sung before, and Vivaldi’s Gloria, which I have. It is fun and challenging. The conductor is fun and not scary (yes, it is possible for a conductor to be fun and scary). I had to do my ‘voice test’ the other night. This wasn’t as bad as I expected it to be, mainly because I singing with another person and not entirely on my own. Despite the fact that I couldn’t pick out and sing the lower of two notes played together on the piano (I’m sure I could do this once – what’s happened?), which was a bit embarrassing, I have not been thrown out of the choir. Also, I am definitely an alto. Hooray!

Minor tribulations contributing to general glumness

Nothing too bad, but…

B fell down the stairs on Sunday. Mr C was with her, but she had a head start and slipped, and fell down almost all the stairs, bumping herself several times on the way down, like Winnie-the-Pooh but with no Christopher Robin holding her paw. She had a nosebleed and a big bump on her forehead, so we took her to A&E. Fortunately, she was fine really, and was very good with the nurse and doctor who examined her. Once again, we were really impressed with the care we received at Medway Hospital. If you have to go to A&E, early on a Sunday morning is probably a good time to do so – we just went in and were seen straight away, as we were one of only a few people around. I think it also helps that there is a children’s A&E at Medway – a much nicer atmosphere and lots of toys to play with.

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Christopher Robin and Winnie-the-Pooh. Photo by Thoth God of Knowledge on Flickr

Then, on Tuesday, I was supposed to do some preparation for an interview, but I had to go and collect B from nursery and take her to the doctors because she had a rash. She quite often has a rash when she’s a bit under the weather, but the nursery said this one was different so we should get it checked. So we went to the doctors and, thankfully, it was fine. Just another benign viral rash. As I arrived to collect her from nursery, the nursery nurse said, “I’ve just filled out an incident form for [B]”. Uh oh. She’d fallen off a log (not sure if it was real or not) and cut her lip. Poor B.

Later, I did some stuff on my presentation but it was no good.

Wednesday was much nicer. I spent most of the day at one of my favourite places, the lovely Drill Hall Library. The librarians have a big bear in their office, and their own tea room and toilets! It’s another world.

Drill Hall Library
Drill Hall Library by Ash87it – Own work, CC BY-SA 3.0

Yesterday, I had the job interview, which went badly. I’d actually been fairly confident about it beforehand, but the reality of it was disappointing. I messed up the test (I had no idea what to do and ran out of time) and the presentation (lack of preparation) and the interview (not sure why – perhaps too much on my mind).

 

Confessions of a struggling mother

On Monday, I turned into That Woman. You know, the one you see (and hear) yelling at her child in the middle of the high street. B was playing with her “sticks” (some coffee stirrers), drumming on the pavement, and didn’t want to follow me to the bank machine, which I had to go to because I had no money on me for the bus ticket I thought I’d lost (it was in my pocket). Because I ‘made’ her come into the bank she then threw her sticks to the ground in protest, then threw my work lanyard (which she has taken to wearing) to the ground also, and said “mummy pick up [the sticks]”. I didn’t want to pick up the sticks and said so and asked B to pick them up instead, to which she refused. There was a stand off, which would have been a lot better had it been a silent stand off, but sadly it wasn’t – I made most of the noise, getting increasingly louder and ending up (if only this had been the end of it) shouting at B to “pick them up NOW!!!!!!!!!!!!!!!!!” (the number of exclamation marks increases with the loudness of the shouting). In the bank. It was not a good moment. Of course B didn’t pick them up (why would she?) so I picked them up and said I would throw them away (I didn’t – no follow through=bad parenting), to which B cried most noisily and sadly and still refused to follow me (again, why would she?- No one in their right mind would have followed this crazy shouting woman) so, having totally lost the plot by this point, I bent down and shouted “NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!” right in her poor, sad, face. I had become That Woman.

I then picked her up and put her in the pushchair and haired off, B wailing piteously, to the bus station, but we had missed the bus by this point so I went to buy some fruit (attempting to be a better parent by feeding her healthy food?) in Sainsbury’s but we kept getting in everyone’s way with the pushchair and that was the last straw. I broke down and sobbed next to the cucumbers. B (who had previously calmed down) joined me. Eventually I pulled myself together because I had regained enough sanity to see that my crying was making B cry, and managed to buy the fruit and get to the bus stop. The bus came and we went home. B was asleep by the time we got in the door.

I lay awake that night and cried a bit more.

This incident made me think more about That Woman. My only defence for my behaviour was that I was tired to the point of exhaustion, Mr C had been away so I’d been looking after B on my own more than usual, and I hadn’t had any lunch. If there is anything positive to be gleaned from this sorry tale it is that it has made me more empathetic with those women like me who shout at their children in the streets. I have a helpful husband, enough to eat and a steady income and I still get overcome with anger and emotion when things get too much. There isn’t an excuse for shouting, but it is easier than you might think to get into that state.

I researched ‘shouting and toddlers’ (as I do, the librarian in me can’t help herself) and found some useful links:

How to handle your anger at your child

Discipline and cooperation

Toddlers: your game plan for the terrific twos

I have to admit, reading some of this made me feel worse before it made me feel better, but that’s OK. I know I need to find a way to deal with my anger – it has always been a problem. The irony is, my dad was/sometime still is very shouty and I hated it. I can’t cope with people shouting at me – I just cry, even now – and I really, really, didn’t want to be like that with B. Must try harder. I’ll let you know how it goes…

#ScarredFORLife

The Scarred for Life exhibition has now opened, so please go and see it if you can! If you can’t please have a look at the webpage instead.