Waiting for a delivery

Jasmine in her stripes

Last week Neil dressed Jasmine in all of the stripey things that she owns altogether. Once he sat her down, he said that she looked a bit mad since the stripes didn’t go together. I said that I thought she looked really cute, and he said that I was as mad (how rude!). I think she looks lovely!

Today we are waiting for our Baxter dialysis delivery. I am a bit worried as our helpful concierge broke our doorbell again (he is still upset about Jasmine – he looks like someone has died everytime we walk through reception, which makes me want to go over, slap him round the chops, and shout: ‘Pull yourself together, man’). We told him to stop trying to fix our doorbell which isn’t broken after we got another concierge to fix it. But hopefully all will go well as it is not snowing today like last month and we have a fixed time and we won’t be on the phone. I know I should stop stressing but sometimes it is hard and it is easier to stress about the minor irritations in life than other things.

Jasmine is absolutely wonderful. This morning whilst Neil was washing her, she was shouting ‘Howzat’, so she is obviously into sport in a big way. Her other words are ‘Abba’ and ‘Ebb’. And once she said ‘Mama’ and I was thrilled. She waves when we take her off to bed and she lies in the cot rubbing her hands together, either rehearsing for Lady MacBeth or she thinks constant hand washing and handcream rubbing is normal.

We have been doing yoga together everyday and Jasmine claps when I put my hands together in Namaste. She also likes to rub my big bump and taps on it when she feels some kicking. The first time she was really alarmed but now thinks it is a good game to play.

Yesterday, I was round a friend’s house and Jasmine insisted on eating a Cadbury’s Chocolate Finger which was brilliant, as she has not wanted to have any food in such a long time. So, I didn’t mind when she rubbed chocolate all over my clean trousers. I am going see if she wants anything more nutritious today.

I tried taking Jasmine out to the corner shop in a sling too, but it wasn’t too successful. I had her on my hip in the sling and she kept leaning sideways to rub my bump and tug my cape and once I had a full shopping bag that didn’t help. Outside the shop luckily, there were a couple of workmen on a fag break who thought I was funny and didn’t mind fastening my cape, picking up all my items, and putting Jasmine’s hat back on. Although the buggy is a nuisance it is easier to go out and about with her in it, especially since I am 29 weeks now and getting quite round, so I think I will stick to that and stop imagining that life is easier without it.

The last week or so, it has been quite tough, thinking about transplant. It is exhausting. Neil was ill the other night – severe headache and feeling sick, and we only had calpol in the house to take away the pain (and that is enough to make anyone feel sick). In the end I had to resort to rubbing lavender on his temples (got that from my herbal remedies book) and spent the whole time thinking ‘Good Lord, I know why they invented neurofen’. Then a couple of nights later I ate something that made me violently sick and poor Neil had to tidy up after me and get me to replace all my fluids. He then phoned the hospital as we had a similar thing when I was pregnant with Jasmine where I was vomiting and felt unable to eat for three days. For a long time afterwards we felt that the illness had caused her kidney failure as it coincided with all the bad news. It wasn’t the case at all – her kidneys never formed properly – but when you are tired and you need some reassurance, it is great to be able to ring the midwife and know exactly what we should be looking for.

It is quite scary when something happens to one of us, as we are totally alone – with no one else to come and help – and that is a frightening thought. On a day when I have lots of energy it makes me really angry – violent, violent rage! People like to talk complete nonsense such as: ‘how sad/angry they feel’, ‘how hard things are for us’, ‘how terribly difficult their lives are but it is nothing compared to our in-their-eyes-really-sad life’. But very few people offer anything sensible that would be of help to us and most don’t even listen when you talk to them, as they are too busy telling you how they think you feel and giving you rubbish advice. But, the one thing that makes me want to strangle someone is their pity. We don’t want anyone’s pity, thank you very much. Having spoken to others in similar situations, this is a common complaint. Talk is cheap and people have difficulty dealing with anything out of the ordinary so instead they like to twitter on, thinking that they are helping. Or, worse still they like to tell you dreadful stories (worse than yours, Ruth) about people they know – ‘top that stories’ – and don’t seem to understand that knowing that someone is worse off than me isn’t going to cheer me up, it makes me cry to know that someone is suffering.

Practical help is thin on the ground. People just don’t want to be a part of anything unpleasant and might offer you two hours of their time on a day that suits them because they imagine it would be cute to look after Jasmine. They have given little thought to the fact that she doesn’t know them as all those visits I was promised, when we first came out of hospital and I was alone all day learning to cope with a baby on dialysis, never happened. Jasmine might not like spending time with strangers. And can these people deal with her constant vomiting or what would they do if her catheter snapped? And then when you say ‘thanks, but no thanks’, people take umbrage. Better still, other ‘helpful’ people tell us that we should think up things for people to do so that they feel better. My Godfathers! I am not running a day-centre here. Jasmine’s care is paramount and I don’t have the energy nor the time for other peoples’ feelings – it is not their life, they are not affected in the way that we are, and why do I have to demonstrate what our daily life is like before they begin to understand anything? Whatever happened to a) taking my word for it, or b) having some imagination. I don’t see why I have to be the one to help them deal with the way they feel about Jasmine. And no, I am not angry about what has happened to Jasmine, as our counsellor keeps asking. No, I am truly angry with, and feel let down by, so-called family and friends.

There have been a couple of people who have understood calmly and without fuss what we go through and have said specifically what they can’t do but have offered to help in other kind, useful ways at great inconvenience to themselves, including taking time off work, and coming to stay with us, which is humbling and brilliant, and moves me to tears. I am very grateful to these people and will be taking them up on their offers when transplant time comes around. And I will remain indebted to these people forever.

Hurrah! The Baxter man has been, like all the Baxter men, he was very nice and jolly, so now I am going to reorganise and count my PD cassettes, a very soothing activity, and then we are all going to go and do something very nice in the sunshine for the afternoon.

Oh yes, we went to GOSH on Monday for bloods and counselling and several people said that Jasmine looked fantastic. I was thrilled, as sometimes when you are tired, you do get a bit paranoid and think: ‘Am I doing everything correctly?’ So to hear our medical team say that Jasmine looks good is the best thing.

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