How and why we write the blog
I thought it would be worth explaining a little about the motivation and process behind the publication of Rumer's Rainbow.
Why do we write the blog?
We started the blog for a number of reasons:
- For ourselves: to help us remember and look back on Rumer's life and our part in it over the years to come
- To provide help, encouragement, knowledge and foresight to other families who receive a trisomy 18 diagnosis
- For medical professionals to refer to, both for an insight into the point of view of one set of parents involved in an intense conflict over the treatment of their child, and for information on a condition that is widely misunderstood and sadly under-researched
- To advocate for babies, children and adults with trisomy 18, with the goals of:
- achieving fair treatment for these individuals, and
- families no longer having to fight hospitals as they use dirty tricks to avoid engaging with ethical issues that seem, perhaps, easier to ignore
How do we compile posts? Who writes them?
Of the two of us, Helen is better by far at writing, but less good at punctuation and grammar. For this reason, she usually writes the first draft of posts and pages (although sometimes we do this together), and most of the blog is written from her point of view. (This page is an exception for which I – Chris – am writing the first draft.) Once this is written, Chris goes through the piece and edits it extensively, both rearranging wordings and punctuation etc, and adding and deleting sections and liaising with Helen about things about which he feels differently. When he has finished, the piece goes back to Helen, and when we are both happy, we put it up on the blog.
Thus, although for the sake of convenience and consistency the vast majority of the site is written as if by Helen, it incorporates the thoughts, experiences, feelings and opinions of both of us.
Particularly in the case of Rumer's Story, but also for other posts in which we talk about our experiences, these obviously describe what happened from our point of view. When writing them we use a wide variety of sources to assist, including our own memories as well as relevant letters, reports, emails, social media posts and so on. Our aim is to provide an account that is both detailed and accurate. We have no wish to embellish the facts, especially since the first of the reasons given above for writing the blog is an important one.
However, complete accuracy is not possible. For example, when we quote ourselves and others, we make every effort to represent what was said correctly, but minor differences will exist both for the sake of concision and because, often, no definitive record exists. The time in question is however relatively recent, and as mentioned we do have a wide range of materials to assist, so we are confident of representing what happened, as we experienced it (perhaps supplemented by thoughts or evidence that came to light later), to a high degree of accuracy. If after publication, despite our care, we become aware of an inaccuracy (also for reasons such as changing the appearance or organisation of the website), we may adjust the post accordingly at a later date.
But I was there and that's not how it happened!
No source is neutral, and we recognise that this is as true for ourselves as for anyone else. For this reason, we welcome input from others who were involved and who would like to contribute their point of view.
If, for example, you are a member of staff at one of the hospitals that cared for Helen or Rumer, and you would like to contribute your experience of her case – either in general or in relation to a specific event – please do get in touch. You can either use the commenting facility on posts or, if for example you would like to write a guest post, email us at email@example.com.
We don't promise to publish absolutely anything , but are happy for our points to be challenged, to be subject to criticism (even heavy criticism) and for recollections of events that clash with our own to be aired. We are happy to use a pseudonym (as in the rest of the blog) or your real name, whatever is your preference. Needless to say, patient confidentiality is not an issue as it would be we who would be publishing any material. Please do get in touch.
I hope this explanation has clarified our blog's purpose, any confusion around who exactly is ‘speaking’, and our enthusiasm for sharing other involved parties' points of view. Thanks for reading!