Charlie Gard and my cognitive dissonance

My cognitive dissonance about Charlie Gard

Charlie Gard has died, after unimaginable trauma and suffering. Yes, I mean his trauma and suffering, not that of his parents. And certainly not that of the bandwagon jumpers; the shockingly exploitative media, religious, political and medical figures who intruded unnecessarily on what should always have been a private situation between Charlie’s parents and Great Ormond Street.

I can’t get the situation out of my mind. It is too close to home. 37 years ago I was pregnant for the second time. I had a wonderfully engaging and loveable two year old daughter. She and I had been through some hard times since her birth with her treatment for the cleft lip she was born with, and would still go through more during her growing up. I was looking forward to seeing how she would be with her expected sibling.

In late September, my son, Benjamin David (after my father, who had died far too young earlier that same year) was born at home after a long but not painful labour. The midwife gathered him up and handed him to me. He did not feed well from me. I cuddled him and talked to him. Two days later, on our doctor’s advice, my husband took him to hospital (the same one which treated my daughter) and returned alone to tell me that Ben had Down’s Syndrome and serious stomach complications. I thought, that’s ok, I will love and raise him as he needs to be loved and raised; we’ll get through this too.

The next day we met the consultant caring for Ben. He explained gently that Ben’s digestion would never work, never allow him to receive nourishment other than by tube, that he would die within days if we agreed to palliative care, in weeks if he was given nutrition medically. The Down’s Syndrome wasn’t the issue, his ability to live and grow was. Such a momentous decision. In the years since I’ve rethought it many times, especially when similar cases become public. I don’t think my decision was wrong, but when I read about parents like the Gards and see their evident passion, I do wonder if I was horribly cold hearted. I had my daughter to consider, myself to consider, most of all my son to consider. We agreed to palliative care and eight days later, Ben died peacefully in my arms.

Here is my cognitive dissonance. I have many disabled friends. I don’t agree with those who want to change the law to allow assisted dying. I believe the law is sufficient as it stands. I don’t equate disability with illness. I want much much better support and care for all disabled people (not cure, unless that’s what they want) and excellent palliative end of life care available to all who need it. I support the Not Dead Yet campaign. And yet…..

My view now is that nobody can judge another’s situation, even if you have been in it; that believing you are truly thinking of your child, rather than yourself as parent can result in different outcomes for different families; that I need not feel guilty about my decision; that involving the media circus creates a public monster from a private dilemma; that both death and disability are part of life and perhaps we are too reluctant to accept that in our society. Live ‘perfectly’ or die? Live suffering pain or die? Who can really judge? If I believed in a god or fate, maybe I would have different views, but I don’t. Life really isn’t what happens to you while you are busy getting on with stuff, it’s what you decide to do with what happens to you.

I was given a little book on my marriage, these words were in it:

http://www.thepoetryexchange.co.uk/poem/on-children-by-khalil-gibran/

 

 

 

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