Jasmine Stalker-Firth

Neil and I have had trouble sleeping these past two nights. This is a bad thing, because we need to be refreshed to manage all our dialysis tasks. If we are not fresh to do this, we can make errors, errors which can lead to Jasmine ending up in hospital. We live on a knife edge.

The reason for our unease is that someone close to us who wants to help has always offered unsolicited advice and often sent email. This is because this person cannot help with dialysis which is where we need help, but wants to help in anyway, now that they have finally overcome their distress and fear of Jasmine’s condition. Back in November, this person offered to pay for the storage of the umbilical cord and blood of our new baby (due in May), and asked if we had done that with Jasmine because they had been shocked that I had said on the blog that a kidney transplant only lasts 10 -15 years.

This email although well intended caused me to lose my temper. I replied:

I am astonished and extremely irritated by your email. I can’t believe that you didn’t know about the length of transplants because we have told you many many times over the last nine months. You would have also known had we stored Jasmine’s umbilical cord and blood because we would have told you.

I do wonder why I bother keeping a blog or indeed tell anybody about anything to do with Jasmine because I feel that I am talking to myself and the only person who really really listens and retains the information about our baby and doesn’t think that he is qualified to offer an opinion every two minutes is my Dad.

Our lives are difficult as it is and I really do wish you would bear that in mind before you offer us your constant stream of advice. It is highly offensive when you tell Neil how to give Jasmine her medicines or how he should feed her or when you ask how much money Neil has left in his bank account every single time we see you, as well as taking pictures of Jasmine without including us as if we don’t exist at all, which is a most hurtful thing to do on the regular basis you seem to.

We didn’t store Jasmine’s umbilical cord nor blood since it was an emergency section and we had only found out about this sort of two days prior to her birth and didn’t have time. There are only two places in London that do it and it is science fiction to think that you could grow a kidney from stem cells – the research I have read doesn’t concentrate on this sort of thing at all.

Jasmine is screaming and Neil is trying to calm her down when we are both exhausted so I will finish here and will ask you to please think before you give us anymore advice. We don’t need advice what we need is practical help and a sympathetic ear – both which are in very short supply.

I stand by what I have written. I know that it isn’t particularly warm and fuzzy and reading it now it seems harsh and pompous. I was 12 weeks pregnant at the time and we were thrilled but petrified of having a new baby, after all the heartache we have been through. I like to think that if I had received such an email I would cut me some slack.

This person’s spouse has rung me up twice – both times lasting over an hour and screamed at me down the telephone: I am ridiculous, I am spiteful, mean, and nasty. It is the most devastating thing this person has read and that I would be really embarrassed if this email was shown to anyone. So, today I am showing this email to everyone. The tirade went on until:

Me: It isn’t about you. It is about Jasmine receiving the best care Neil and I can give her.
The person: It is about us.

And shouted at us until we were physically drained and depressed..

The first time this person shouted and screamed, afterwards we had to leave our house at 1am and go down the hospital with Jasmine for an emergency. The next day I rang them up to explain where we had been and to demonstrate no hard feelings etc. A few days later we had a visitor, who trying to help, told me that I had to apologise because this bad feeling caused by the above email wouldn’t go away on its own. I didn’t.

Finally, I got a letter from the screaming person, saying that we were in a ‘muddle’ and they just wanted to help. I appreciated the gesture and wanted to move on but was having a hard time forgetting all the dreadful things this person had said about me, as things said cannot be unsaid and stay with you whether you wish it or not. To help, we had some counselling and learnt that living with a child with a chronic illness means dealing with all sorts of people and their behaviours. People want to help and be good, but stressful times don’t always bring out the best in people.

Our counsellor advised us to get some ‘closure’ on the event so that we could move forward and put our energies into caring for Jasmine. And to use our precious time in counselling discussing how we should deal with Jasmine having a transplant, particularly if Neil is a suitable donor.

So, yesterday we took the opportunity to try and explain how we felt when this person rang us. It did no good. This person shouted again (an improvement on screaming) down the telephone and said that on top of me being all the things I was before (nasty, spiteful, etc), The Family are shocked at my sending this email. When I asked which bits of the email, it soon became clear that this shouting person cannot remember what is in the email and has blocked out all of the horrible things they have said to me. Now I don’t know who The Family are but what I do feel is that I have been misrepresented, which has upset me further. So I am using this opportunity to put forward my side of the story. I also want people to see that having a chronically sick child on dialysis means that you have to deal with lots of things, not just medical problems.

It has also put an immense strain on our marriage – something that having a chronically ill child could never do. We have had blazing rows, tears, lost sleep and lots of sadness over Christmas because of this one person. And we have never ever in our whole relationship of ten years been in a phase like this. We love Jasmine more than words can express and we love and respect each other deeply.

I have not blogged about this before although the situation has upset us for two months, because I thought it would cause more damage. I am blogging about it now because I have found writing about all aspects of Jasmine’s illness here to be cathartic and after yesterday I feel no more damage can be done.

We are not coping well. I am weeping as I type this because of tiredness and because of the emotional stress this person has caused our little family here and the fact that this person has gone about misrepresenting me to others. Neil and I can cope with what we have to do each day for Jasmine. We thank God everyday that she is alive and at home with us. But at the end of each day we are exhausted and don’t have anything left to do deal with other people and their frustrations.

We have taken the step of asking this couple not to contact us again. We must protect ourselves.

Jasmine’s care and the health of our unborn child are the most important things in our lives. If airing our dirty linen in the public domain causes further upset and distress to anyone then I will take down this blog and never write online about Jasmine again.

This entry was posted on Wednesday, January 14th, 2009 at 9:09 am and is filed under home. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.