Living with Cerebral Palsy 🍋🍋

Sunday, 28 October 2018

Growing pains

In the month when the clocks have gone back, I seem to spending an awful lot of time wishing I could actually reverse or at least halt time in general. Things are changing pretty fast around here. Or not. Maybe the changes have been so slow and so gradual that we didn't notice them happening. I don't suppose there is a Mum in the whole world who wouldn't tell you there her children have grown up too fast. This is hardly news. So why am I struggling so much with Elin getting older and bigger?
Elin seems to have sprouted lately. We are finding it really, really difficult to lift her and to manage her weight. Obviously we have the hoist for tricky manoeuvres at home, like bathing.  It's not being at home that is difficult though- it's everything else. It's when you are out and the dystonia dictates that she needs to come out of her chair, or she has an appointment or a therapy or you want to visit a friend's house. Try lifting a ten year old who cannot brace themselves or hang around your neck or help you in anyway. Its becoming really hard. Our backs, most days, are in agony.
Coupled with the growth spurt Elin's dystonia has made a weird return, in the sense that she now has random periods of complete stiffness/bending backwards. It's not as distressing for her as her all-over body dystonic storms thank god. But it's not nice to see her straining against her own body and involuntarily trying to bend herself backwards in two. It also makes her very difficult to handle. She's definitely not a baby anymore. I always knew there would come a day when Elin grew so big that we would have to start altering what we do, where we go and how we manage day to day life to keep her comfortable. Of course I did. But that doesn't seem to make the realisation, that this new chapter in our life is pretty much upon us, any easier. I want to stop the clocks, I want time to stand still. I'm not ready. I'm not ready for growth, for secondary school, for hormones and their effect, for Elin to embark on the pathway to adulthood and all that this means. I'm scared. I feel like screaming..
I'm not ready.
I don't know how to be ready and I don't know how to stop being sad about all the things that will gradually shut off to us as Elin gets bigger. I don't know how to stop being sad that I am sad about my daughter growing up, because of the implications for her and for us as a family. I don't want to be sad,  but I'm not ready not to be. We are both so acutely aware of these huge changes lately, it's a bit like going into shock all over again. I berate myself for not handling this well, before I remember what happened to us and to Elin was huge and that will re-surface now and then. As I watch my friends bring up their children in an existence more alien to my experience of motherhood than I ever could have dreamed of, I still can't quite believe this happened.
As we both grapple with this, there is one person who is taking it all in her stride with characteristic strength. It's the person who's face makes everything ok again. She is happy, she is healthy, she is here. She looks at us as if to remind us that changes can be negotiated, anything can be dealt with in the great scheme of things- just think back to ten years ago and all the changes since July 2008. Change? We can do change. As long as we are all together, we can do anything- what else is there???
Once again, we have to take our lead from you, miracle girl. One day at a time. Never give in, never look back and never, ever stop smiling. 

Friday, 12 October 2018

Rainbow bright

"The greater your storm, the brighter your rainbow" said an inspirational quote I once saw on a wooden plaque hanging in a gift shop. Unlike some inspirational quotes, it didn't cause me to snort sarcastically and roll my eyes so far into the back of my head they almost disappeared. Because it's true, isn't it? The harder you've had things, the more you appreciate the good times. Well, this is definitely true of us anyway and basically the premise of this blog really, so I have never forgotten that saccharine but spot-on little saying.  I think as humans we instinctively search for justifications and answers to bad things that happen, so this saying fits in with that psyche. Today, it is as relevant to us as ever. Exactly three years ago we left Children's Ward after yet another admission. The nurses- who felt more like friends by this point- had made me the usual tea and toast in the morning, whilst I had groggily dressed inside our 'cube' room. The beeping of the monitors attached to Elin all night echoed through my memory like a never-ending reversing bin lorry that was flattening my sanity.
I couldn't, then, count how many times we had stayed over in hospital with Elin. I'd be interested to know actually. I do know that by the time she was twelve weeks old, we had spent seven of them in hospital. This set an unwelcome precedent for the next seven years of her life. It utterly blows my mind that there are some parents out there who have never entered a hospital ward with their child, such was the normality of the situation to us. First name terms with all the staff and a knowledge of the doctors rota's more accurate than their own (probably).  Let's not forget the ambulance rides and the times we were blue-lighted into A&E because that was LOADS of fun! Once, I did and ambulance call and run to hospital solo as Paul was away visiting family for the weekend. I didn't tell him until he got home because I knew it would ruin his trip and had to avoid his phone calls for 24 hours so he wouldn't guess where we were!! So even ambulance rides lost their vice-like grip of terror on us in the end. I suppose it's true that you can get used to anything if you deal with it long enough.
The thing is, one your child has been rushed by ambulance to hospital (normally because of seizures in Elin's case) and you have taken a call from the school to tell you to get there as fast as you can, it becomes very difficult to ever relax again. You are on high alert constantly. For years, the generic ring of a mobile phone in my proximity would set my heart pounding. I felt that my mind was always elsewhere. It was with Elin.
How lucky we were during this period to enjoy the care of the staff on Children's Ward. Some of these same staff, by the way, still follow this blog and even contributed to the stunning £1,400 we collected for charity in the name of Elin's 10th birthday. They cared about us, even in the malaise of the ravaged, busy, exhausted days working in the confines of terminally compromised NHS. These staff ( and the school staff too)  were the singular reason we made it through that period of time without losing our minds. I'm not sure if everyone that ever made a fuss of Elin on that ward, or greeted us with such open familiarity and constantly took time out of their day to reassure and look after us, truly knew the impact of their actions. It was huge.
So, three years ago today we were discharged from the ward after a bug/breathing difficulties for Elin. We left our favourite cube, waved to our favourite nurses on the way out (they were all our favourite!) and joked we hoped we wouldn't see them again too soon. We didn't. We haven't had a single hospital admission since then.
This luck is extraordinary, just like Elin. We were told quite categorically by a consultant at Alder Hey when she was four months old that Elin would spend a (short) life yo-yoing in and out of hospital and for a while it seemed like this may be the case. But it seems a different lifetime now, I can barely remember that feeling of continual anxiety. It's so freeing, to be able to release the day to day worry that we carried around like a weight on our shoulders. But, it's never quite far away either.  I don't think we'll ever feel that those days won't ever return because we are far too superstitious to assume. We know how quickly things can change for children as vulnerable as Elin. We can only hope, be thankful, once again marvel at the amazing strength and resilience of our little fighter and make lemonade while the sun shines. God knows life has served us enough lemons.
October 12th 2015. Last Children's Ward admission. 

Have a wonderful weekend folks. Stay hopeful.

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