Living with Cerebral Palsy 🍋🍋

Thursday, 20 March 2014

A blast from the past

Yesterday I went to a meeting held by the First Minister Advisory Panel on siting of the proposed regional Neonatal Intensive Care Centre in North Wales. I was attending in my capacity as Chairperson of the Wrexham Charity "Cherish", which I have previously blogged about and which raises funds for the Special Care Baby Unit. However my interest of course is not limited to my position as Cherish Chairperson but is also as a Mum who needed these services and similarly a campaigner who has been fighting to keep essential neonatal services accessible to all area's of North Wales. It was a looong meeting and one of many I have attended. Maybe that story is for a different blogpost. What I wanted to blog about today is that I saw someone at the meeting I have not seen since those first hours and days after Elin was born, and whose voice instantly transported me back to the Special Care Unit, with it's clinical smells and mechanical sounds. It was the hospital chaplain. I have not thought about her for years. But just in that instant, a hundred memories came flooding back, not least the one where the ward sister asked us if we would like Elin christened by the chaplain on the Unit. I liked the chaplain a lot. But I refused. I could not contemplate it. Elin would be having a christening, I said, but she would be wearing our family christening gown and with all our family and friends present and a big party afterwards as I imagined it because SHE IS GETTING OUT OF HERE (the following May, that's exactly what happened). Anyway, the chaplain visited the Unit regularly whilst we were there, sitting by Elin's bedside day in day out and hoping for a miracle. Despite my practical atheism (if I believed in God before, I certainly didn't at that moment in time) I found the presence of the chaplain calming and comforting. She was kind, and supportive. When I saw her at the meeting I went to thank her for the support she had given us all those years before. Of course having seen hundreds of parents she didn't remember us and now works in a different hospital, but she was happy to have been helpful to us during the worst time in our lives and I was happy to have seen her again. As she asked in her calm, considered manner how Elin was and I gave her a brief snapshot, she demonstrated to me that even the wisest and kindest people can sometimes get it wrong. Not that I want there to be a 'wrong' when you talk to me about Elin as such, but there are things that can grate a little. I feel bad even typing this, as obviously the intentions she had were nothing but good, but this blog always had to be honest or there's no point in writing it. You see, she seemed to have missed what I said about the nature of Elin's condition. She started to tell me about her friend's daughter. Yep, you guessed it, her friend's daughter is now 50 and went to University and can walk and talk and they told her Mum when she was little that she wouldn't be able to..and now she does X, Y and Z etc etc. This is so far removed from where we are with Elin and will ever be..and that's ok! We've come to terms with it. The fact that Elin has achieved greatly in her little life and these achievements are what we must celebrate, not how comparatively 'normal' her life 'could' be. I have written in-depth about this before so I won't go over all ground again. But I was so disappointed. I thought she would have understood, I thought she may even have some wise words for me. If a chaplain can't prompt an emotional epiphany who can, right? But it turns out even those wearing collars around their necks and warm smiles on their faces can completely inadvertently make your heart sink in your chest just a little bit. Human, then, like everybody else. What, exactly, was I expecting I wonder??  However I have to still point out despite this, if there is anybody reading this who may feel they have a direct line to the man upstairs, we wouldn't say no to that miracle, you know, if there was one on offer. Put in a good word for us, would you?

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