Project Update #5, 28.01.20

Since my response to SSNAP, I have been back and forth via email with Caz. This has resulted in sending her the consent form with the view of her and anyone else from her team to sign. When I asked her for an update as to what she thought would be written by her and/or SSNAP, she responded with the below:


  • Kerri Knibbs, SSNAP Chair is very happy to contribute to the book, her focus could be about what the Charity does.
  • Nicky Boughton, SSNAP Director & Clinical Psychologist (working as a Volunteer in NCU) would like to write a piece about the link between SSNAP and psychology.
  • Amit Gupta , Unit Medical Director is very supportive and can also write a piece or help us edit.
  • Christine & I will  be delighted to cover our roles in the family care team and how we support families.


I am delighted with the interest from all the members of staff and think all the features above could be a great insight into SSNAP’s world, but also educational too. What I thought could be a small feature at the back of the book could now be more of a significant one. This is with Dominic, one of the consultants, replying to my email to him as well – he too is interested in writing a feature. However, he would rather wait to see how the book shapes up first before deciding what to write and how to write it.

In speaking with Dominic, he recommended someone to check out: Annie Janvier. I have since ordered her book, Breathe, Baby, Breathe! – I am waiting on its arrival. In the meantime, I have found the links below – written by Janvier:

Finally, as an update on the features from family members and Gemma, I have received a draft from both my parents, and Gemma is still writings hers – which has reached two thousand words. It is great to see people like my father and Gemma writing, because they have never written like this before. And for the latter to reach two thousand words voluntarily is great. Comparing what she has written so far to that of my father’s or mother’s (both shy of one thousand words), a noticeable difference is the depth of emotion and/or thought. In Gemma’s, she goes deeper into how she has felt and still feels. This could simply be down to word count – however, it could also be down to parents not wanting to reveal too much to their child.

In trying to find explanation through research, Jeffrey Bernstein’s articles below did not allude to this specifically, but highlight the dilemmas parents face as they try to juggle what is right for their adult children and how best not to feel guilt or to hinder their conscience. Perhaps this is why? Perhaps my parents do not want to go deeper as to not show me, their adult child, a side to them that they feel would not be beneficiary? Do they think that, if I read the extent of their hurt, it will add to my own struggle?

Other articles found, but do not directly relate to the questions above, are:

The latter one, wherein Brigit Katz talks about parents passing anxiety onto their children, touches on the reasoning here: ‘Witnessing a parent in a state of anxiety can be more than just momentarily unsettling for children. Kids look to their parents for information about how to interpret ambiguous situations; if a parent seems consistently anxious and fearful, the child will determine that a variety of scenarios are unsafe. And there is evidence that children of anxious parents are more likely to exhibit anxiety themselves.’ Though I am an adult, and not a child, could the same theory apply? If I read two features wherein my parents show the extent of their own pain and fear, then would I be likely to succumb to the same emotions knowingly and/or unknowingly? Even if this is not the case, are my parents still in a position where they think I will do as ‘kids’ do?

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