Sometimes, during the 'new normal' of the life you have cultivated as a parent of a child with quadriplegic cerebral palsy, you get smashed straight in the face with a wave of grief and nausea when you least expect it. In my experience, this happens less and less the older your child gets, until you almost forget your 'new normal' because it has morphed into what is now just 'normal'. This is a euphoric state that you could only dream of when you embarked on the new life, the one you didn't choose- the one that started when your baby was born not breathing. Back then things felt that they would never be the same again, the world collapsed. It's life Jim, but not as we know it.
But things slowly and painstakingly change, they get better. Does time heal all wounds? Or is it what you do with that time that does?
I know we are lucky. Elin is doing well and that has changed everything as she has grown in the last ten years. There is reduced stress when you are no longer having to call an ambulance to deal with seizures regularly, no longer yo-yoing in and out of hospital. You start to forget to worry. Then you stop worrying almost completely. Life becomes settled, there is a status quo. You can even go out for the day without putting your phone in your bra which you used to do daily (so terrified were you of missing a call from school/home/babysitters) Sadness about what happened to Elin rarely surfaces, you are now just getting on with your new life as though it had almost been meant to be.
Almost.
But then, a little face-smash occurs. A little reminder. Don't get comfortable, things could change and they do. Recently, two things happened in the same week to contribute to one of these moments. Firstly, another one of Elin's little friends passed away. This is something that we will never get used to, will never stop halting us in our tracks and will never ever stop hurting. There is nothing more poignant to remind you just how precarious life is for our beautiful, vulnerable children. Elin's little friend, who used to attend her school, did not have the same condition as Elin, but she had the same vivaciousness, bravery, cheekiness, mega-watt smile and ability to make everyone around her fall instantly in love with her through her beautifully expressive eyes and face of pure sunshine. She had the same family- a mummy and daddy, sibling, grandparents and wealth of people who cared about and loved her all around her. We know each other, our families. Even those we've never met. We share a common ground nobody else can understand. So a loss like this is devastating for all and we will never forget these children who so richly deserved more. It hurts beyond words.
Secondly, Elin had an appointment at Alder Hey about her hips. She has these appointments annually and in truth I mostly completely forget about them from one year to the next. Her right hip is sub-flexed, meaning it is coming out of it's socket. This is totally normal and in fact, common, for children of Elin's age who don't weight-bear. One year when we went it had even popped back into it's socket a bit!!! I've never really been too worried about it. But this time, it had protruded a little further. The consultant had a student in with him, so perhaps his candidness this time was centred around that. He was using us a teaching exercise. He basically let us know that we could expect Elin's hip to come out of it's socket altogether some point in the future. This could be the near future or take years to happen. When it does, it may cause Elin massive pain or discomfort or not bother her at all. At this point surgery would be considered based on her pain levels and handling issues due to the socket being out of joint (changing nappies and things can become very difficult). The surgery, he explained, was not easy and entailed weeks and often months of recovery. Incase his medical student was in any doubt about this procedure, the consultant began to remonstrate about the risk of death during such surgery. SERIOUSLY! An operation that she may or may not be having possibly one or ten years down the line!! Slightly unnecessary I felt but then as Paul reasonably pointed out to me afterwards, we do ask a lot of questions too. He probably thought we wanted the big picture..you know..since we asked for it! Some things I'm better off not knowing until I need to though. It really bothered me. It reminded me entirely of Elin's vulnerability, the unfair nature of her condition- the way we are powerless to change certain things about her path.
Why do we have to think about these things? Why will we one day have to decide whether to put Elin through a big, nasty operation or not? Why will we have to watch her in pain? Why are we damned if we do and damned if we don't?? Why do we have to make these decisions and then deal with the consequences when some parents will not set foot through a hospital door with their child in their entire life? Why did this even have to happen? Why do these things still take me back to the day Elin was born as if it happened yesterday and begin my struggle with what happened all over again?!!???
Who knows. Not me. But I have to accept that knowing families who lose their children and dealing with difficult decisions are just part of our life, it is how it is. This doesn't mean I have to accept them as normal though, because they never will be and the day they feel normal would perhaps be the saddest and most heartbreaking of them all.
So maybe we all need a little face-smash now and then, if only to serve as a reminder of where we are in time, or rather, where we've not yet got to.
Sometimes, when life gives you lemons, you have to just cut them up and put them in a gin and tonic.
Have a great weekend folks, this face will be my positivity -you're welcome to use it as yours, too :-)
Ruth x
