{"id":45285,"date":"2024-03-10T06:45:00","date_gmt":"2024-03-10T06:45:00","guid":{"rendered":"https:\/\/www.sense.org.uk\/?p=45285"},"modified":"2024-03-11T17:22:44","modified_gmt":"2024-03-11T17:22:44","slug":"being-enabled-to-love-and-cherish-my-daughter","status":"publish","type":"post","link":"https:\/\/www.sense.org.uk\/blog\/being-enabled-to-love-and-cherish-my-daughter\/","title":{"rendered":"Being enabled to love and cherish my daughter"},"content":{"rendered":"\n

For Sheila<\/strong> and Peter, the birth of their daughter, Josephine, in 1993 turned their world upside-down. Due to medical negligence during labour, Josephine was left with very complex disabilities. We spoke to Sheila about her new book which reflects on this time of monumental adjustment, giving rare insights into the hidden world of fulltime care, post-natal PTSD and unshakable parental love.<\/p>\n\n\n\n

Can I speak to Josephine please?<\/a> \u2013 by Sheila Brill<\/p>\n\n\n\n

It\u2019s hard to write a book that\u2019s so personal. You expose yourself. But it feels important to be honest. There was so much I hid during Josephine\u2019s life, either to protect myself or, I thought, other people. On reflection, you wonder if that was the right thing to do. My own husband didn\u2019t know that I was suffering from post-natal PTSD for years, or half the things that were going on inside my head.<\/p>\n\n\n\n

There were times when I was desperate and angry \u2013 and the book is shocking \u2013 but I think that even the most challenging revelations will resonate with some parents. Writing everything into this book also gives me hope that hospitals will see fewer errors in childbirth in the future. I know that without reform, stories like Josephine\u2019s will, sadly, continue to be told.<\/p>\n\n\n\n

\"An
Sheila and Peter sharing the first few days with their beautiful daughter, Josephine, in the intensive care unit.<\/figcaption><\/figure>\n\n\n\n

It doesn\u2019t feel like being a \u201cmum\u201d<\/strong><\/h2>\n\n\n\n

I gave birth to Josephine on 11 May 1993. She was beautiful, and for 23 years we had a loving mother-daughter relationship – but one with a di\ufb00erence. Due to clinical negligence, my daughter su\ufb00ered catastrophic brain injury at birth, leading to profound and multiple physical and learning di\ufb03culties.<\/p>\n\n\n\n

I thought that instincts would just carry me through whatever parenting Josephine was going to be like. But actually, when you can\u2019t hold your child because they\u2019re in an incubator, or comfort them because the force of their spasticity pushes you away, you can\u2019t use those natural instincts \u2013 they don\u2019t work. You\u2019re left trying to find a different approach, and it doesn\u2019t feel like parenting, like being a \u201cmum\u201d.<\/p>\n\n\n\n

At the beginning you\u2019re just trying to work out what to do to get through the next hour. It\u2019s hard, and very frightening as a new parent. But you go through what you have to. You have to get on with it. Your only alternative is to say, \u201cWell, I\u2019m not going to look after my child.\u201d And that thought never entered my head.<\/p>\n\n\n\n

\"A
The Brill family enjoying time together in their home garden.<\/figcaption><\/figure>\n\n\n\n

Sense was a place that cherished our children<\/h2>\n\n\n\n

In the early years, we learned an immense amount through the Sense Family Centre at Woodside. All the professionals we met there were unbelievable. They just\u2026 they learned her. And they learned her alongside us, so we shared things with each other and it was a truly collaborative experience.<\/p>\n\n\n\n

Raising a child with complex disabilities is all about collaboration, being part of a team. Woodside fostered that; us parents were all very supportive of each other. We were all relieved to be in a place that accepted and cherished our children.<\/p>\n\n\n\n

Music was an integral part of our sessions with Sense. It was a time I made the biggest emotional connection to Josephine. When I reread the chapter that I wrote about Woodside, I could recall just what it meant to us. It was a place of solace, a place of comfort \u2013 though of course it was very intense, but magical. It made her life better.<\/p>\n\n\n\n

Finding a way to live in the moment<\/h2>\n\n\n\n

It\u2019s very easy to focus entirely on the person who has complex needs, and to forget about other people\u2019s needs \u2013 or your own needs. And that can go on for many, many years.<\/p>\n\n\n\n

But taking care of yourself is essential, otherwise your child won\u2019t get what they need because you\u2019re on your uppers. It\u2019s about looking after everybody. At Sense people would say \u201cWhat about you?\u201d<\/p>\n\n\n\n

I lived in a world of perpetual fear for many years. I was always waiting for the disaster. I could never live in the moment. That\u2019ll resonate with a lot of parents. The nature of the joyful moments is that they\u2019re fleeting, and they\u2019ll be followed by more difficulties. So being able to cherish those moments of impact and joy, even when you know it\u2019s only going to last for a minute, makes all the difference. <\/p>\n\n\n\n

I think it\u2019s probably a common thing for parents to have some level of PTSD after a traumatic birth. For me, getting Eye Movement Desensitisation and Reprocessing<\/a> (EMDR) therapy made a huge difference. If you\u2019re thinking about going down this therapy route yourself, make sure you\u2019re in the hands of a qualified professional. Once I started my recovery, I started to reconnect with myself and be more present with Josephine. <\/p>\n\n\n\n

I found I had a daughter with a distinct personality, who loved music and company and chat. We loved our wee girl deeply. I spent Josephine’s lifetime trying to do what made her happy, but this competed with the emotional pain and su\ufb00ering I felt as her mother. \u2018Can I Speak to Josephine Please?\u2019 is a reminder to anyone touched by similar experiences that parenting a profoundly disabled child is no less – and, perhaps, no more – complicated than parenting a “normal” one.<\/p>\n\n\n\n

\n\n

Sheila and Peter are amongst thousands of families who have sued health trusts over negligence during births. In their case, it took six and a half years to reach a settlement which provided financial support to give their daughter the best possible quality of life over her remaining 17 years.<\/p>\n\n<\/div>\n <\/div>\n\n\n\n\n

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\"\"<\/figure>\n\n\n\n

Can I speak to Josephine please? by Sheila Brill<\/strong><\/h2>\n\n\n\n

With a foreword by Miriam Margolyes<\/h3>\n\n\n\n
\n

“This is a deeply moving, tender and proud book, a tribute not only to courageous Josephine, who knew how to love but also to her mother. In Sheila\u2019s words the triumph of love is fierce & awe\u0002inspiring. I have been enriched by reading it. I have no doubt you will feel its power too.\u201d<\/p>\n\u2013 Miriam Margolyes<\/strong><\/cite><\/blockquote>\n\n\n\n

Available on Amazon<\/a> through Resilient Books<\/a>.<\/p>\n\n<\/div>\n <\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

For Sheila and Peter, the birth of their daughter, Josephine, in 1993 turned their world upside-down. Due to medical negligence during labour, Josephine was left with very complex disabilities. We spoke to Sheila about her new book which reflects on this time of monumental adjustment, giving rare insights into the hidden world of fulltime care, […]<\/p>\n","protected":false},"author":26,"featured_media":45286,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_searchwp_excluded":"","footnotes":""},"categories":[7],"tags":[],"display_author":[1297],"class_list":["post-45285","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-blog","display_author-sheila-brill"],"acf":[],"_links":{"self":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/45285","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/users\/26"}],"replies":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/comments?post=45285"}],"version-history":[{"count":0,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/posts\/45285\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media\/45286"}],"wp:attachment":[{"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/media?parent=45285"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/categories?post=45285"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/tags?post=45285"},{"taxonomy":"display_author","embeddable":true,"href":"https:\/\/www.sense.org.uk\/wp-json\/wp\/v2\/display_author?post=45285"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}