Living with Cerebral Palsy 🍋🍋

Sunday, 22 May 2016

Thank you..

...for the incredible response to my previous post. It is now the most viewed post I have written since starting the blog in 2008. It has been shared by Scope Wales, which I find extraordinary. It has also been shared, amazingly, by the Association of Paediatric Chartered Physiotherapists, who emailed me to say they had picked it up and felt it would be useful for their students to understand a little more about some of  the children they would be working with and their families. WOW. I always say I will be completely honest writing this blog, as otherwise what's the point? Even though sometimes that can be really, really hard. But I guess a little honesty goes a long way.
I have received some wonderful emails from some of the parents who have picked my blog up just from the sharing of this post alone. I needn't tell you how lovely this has been, since a huge driving force for me to start this blog was that it may reach out to others in our situation. When Elin was born, it was the internet that was able to bring us the most comfort-various websites, social media groups and blogs by other families- given that at the time we knew of nobody locally who had been through the same thing. Now, my blog has been a source of comfort to others and the journey has gone full circle. Not that this means I am going to stop any time soon. Just wanted all you readers, sharers and champions of this blog to know what your time has meant to me.
It has meant everything. 
That I'm not pouring my heart out in vain, that people are interested in our girl, that we will never be alone in this- and that even complete strangers can kind beyond measure. 
So thank you.
You're all awesome :-)
Ruth x

Tuesday, 10 May 2016

Choose life.

I recently chanced upon this photograph and instead of giving me the warm, fuzzy feeling that old photographs of your kids are supposed to do, it made me cry like the world was running out of red wine.
You would be forgiven for thinking Elin was relatively newborn here. She was actually almost five  months old. She should have been starting to try solid foods. Rolling over. Smiling . Exploring textures. Putting anything and everything in her mouth. Babbling. Teething on time. Laughing.
Of course, she wasn't doing any of those things.
She was about to go with us to Alder Hey children's hospital, for open surgery that would take hours. Her brain had been so damaged during her birth that she could not swallow and was fed by a tube we had to learn to feed through her nose and into her stomach. Her stomach, in turn, on not receiving the correct 'messages' from her poorly brain about digesting food, rejected anything that went into it. This meant Elin vomited every feed (hence the reason she is skinnier that some newborns in this pic). As the vomit was acidic, she was often in agony every waking minute of the day. She cried for hours and hours, every single day. Each one of these cries pierced our hearts and slowly suffocated us. Each time her face twisted in agony that nobody seemed to be able to help her with, a little part of us died. Her agony was our agony. I hated myself for having her. Sleep deprivation will twist your feelings and muddy your thoughts like nothing else. I figured I forced her existence by having IVF and that my selfish need to be a Mum was being punished. But it wasn't just me being punished, it was Paul too but mostly and worst of all, it was Elin. They were categorically the worst few months of my life. 
They should have been the best.
Everything was back to front and upside down. Absolutely everything was wrong. I wanted to crawl under a rock and die. But mostly I wanted to scoop Elin up and run, except I didn't know where to. Beyond the rainbow? There was no colour in our world . We thought we were going to Oz the day we drove to the hospital, knowing our miracle was in sight. But we ended up spinning around in the cyclone of a storm that did not pass. The miracle was not the safe delivery of our longed for IVF baby. The miracle was that she survived. There was nothing else.
Oh, how clearly I remember taking this photograph before we travelled to hospital that day. I thought it might be the last photo I would ever take of her, who knew how the surgery would go? Here's the worst bit.  I didn't know If she should survive. I didn't know what was best, the unbearable cruelty of the pain of her short life was hard to shake. My heart was rotting and turning blacker by the day, with every scream of Elin's and every time her tiny body frantically writhed in pain. I can hardly believe it now, but I didn't know for sure if I wanted her to live.
When I look at this picture I remember all of that. I remember the grave Neurologist taking us into a room at Alder Hey a week after the operation and asking if we wanted to see the brain scan he had requested on noticing her abnormal movements which he was concerned were seizures. We declined to see the brain scan. We didn't want to think of it every time we looked at her beautiful face. But we asked him to tell us what he had found. He told us the whole picture and it was the first time we had heard it all laid out before us. There would be no walking, no talking, no feeding. There would be endless hospital visits. A lifetime of illness. Her brain damage was about as bad as it could be. She wouldn't, he said, ever be 'a thinking person'. My baby, four months old and recovering from massive surgery, would never be a thinking person. 
To digest and accept this about my daughter and keep putting one foot in front of the other (in all honesty even just getting out of bed) was easily the hardest thing I've ever had to do.
But, when I look hard at this photo today, my overwhelming feeling is how wrong I was about her future. How the darkest time of our lives slowly but surely gave way to light, as Elin recovered from her operation and the amazing gastro surgery that saved her life. As she slowly healed, so did we. My heart began to stop aching. Things did not magically become ok. It took months (has it taken years?) for us to focus only on the positive. To grieve for the little girl who died in the moment of Elin's birth. To see Elin for the amazing child she is, for what she offers the world in her own right. She has only reached two of those four-month old milestones I mentioned earlier and she is almost 8 years old. She reached them on the same day. She was ten months old. They were smiling and laughing.
She hasn't really stopped doing either since.
So the torrent of tears this photo produced, I slowly realise, are not tears of sadness but tears of happiness and relief. Tears because I can't believe how bad things were and I can't believe how far we have come. How blessed we are with Elin's incredible fighting spirit. The girl who would never be a thinking person is so much more. She is a fierce, brave, funny, intuitive, stubborn, joyful and loving. 
She is a miracle twice over. 
We love you so much, Elin.

"Some people will never understand the shadow. They don't realise it's part of the light"
Nia Wynn, Blue Sky July 2007

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