The psychology graduate in me is fascinated with people in general, why we behave the way we do, how two people can be affected completely differently by the same situation, why one person may become a successful entrepreneur and why one may kill. I love those things that make us unique but as well as this I am interested in the patterns that we all follow, the things that unite people and the common ground the make strangers feel connected.
Of course, it’s much easier to objectively scrutinise the behaviour of others than it is your own but if you don’t mind passing me that trumpet in the corner I’ll give it a quick blow and say that self-reflection is definitely one of my strengths (the negative self-talk is a weakness but we’ll come back to that another time)
When I received the news that my new born son had a rare cranio-facial condition which effectively means he had half a face I proceeded to work my way through a rollercoaster of emotions. Recently, I have joined an incredible group of parent bloggers who also share their altered lives and it got me wondering if they had worked through the same emotions. I asked the question and we found that a lot of our emotions did follow a very similar pattern. Although there is no ‘text book’ response to hearing the news that your childs life will change forever, here are the stages that many of us felt we moved through.
Depending on whether we knew about our babies condition made a big difference for the first stage of emotions. Despite lots of scans as my pregnancy was a twin one, Harrys disfigurement was never detected and so for me, my initial feeling was utter shock. There was also a moment of denial and blind panic as other parents have also reported. For parents whose children received a diagnosis later in life, many of them say they felt relief to have their concerns validated. Knowing that your maternal instinct is correct is small comfort when life ahead is changing but for those parent’s relief replaced shock initially.
Its hard to talk about grief without sounding either ungrateful for the child you do have, or as if you wish they were different somehow. Neither are true and every single parent adores their children regardless of their needs but when a diagnosis is given, you and your child are suddenly put on a different path. Derailed on the journey you had planned and sent on the scenic route to who knows where. I have written before about the ways in which I felt different to other mums and the things I grieved for; the freedom of choice that would now be restricted for my boy and the memories he might never make. That’s not to say I don’t think he can still have an incredible life but there is a period of adjustment when you realise that the goal posts have been moved and the rules of the game are now slightly different for your star player.
The questions made my head ache. What? How? Where? When. Who? Why? Do we..? Should we…? Will he….? There were so many questions and inevitably, the few answers that we did get just lead to even more questions. It was never ending and exhausting.
When the doctor came to tell me about Harrys syndrome he told me not to google it. So as soon as he left me, what did I do? Googled it! I wanted to know the ins and outs of the syndrome, the implications and the options. I wanted all the answers to all of my questions and I wanted that knowledge immediately. More than once I have wished for the ability to read a book simply by laying my arm across it like Daryl Hannah in Splash (showing my age now!) It frustrated me not to know and I agree with my friend Deb who said that it was hard not to be able to explain the situation to family and friends when they asked. There is an understandable but impossible expectation that we are the expert on all things related to our child and that’s simply not the case at the beginning.
With the questions and the research comes fear. There will be answers we don’t want to read, options we don’t want to consider and implications we can’t bear to think about. We fear an uncertain future, we fear the lack of control we will have as other professionals become involved in our children’s future, we fear the way that society will judge or exclude our children. We fear how hard it will all be and whether we are up to the task. Of course, these things don’t happen over night and we adapt slowly over time so that generally we realise our fears are manageable at worse and misplaced at best. But just as the grief of what will never be is real, the fear of what’s to come is equally as strong.
Then there is the dusting yourself down phase. The realisation that worrying changes nothing and only adds grey hairs and wrinkles to a face that will need to show such strength and bravery (at least on the outside). There is the acceptance that whatever trauma is happening right now, it will pass and you will deal with it, learn from it and grow both as a parent and as a person.
The final stage is the acceptance of knowing that this cycle can start again at any time – a new wheelchair for my friend Lauras son put her right back at the shock phase, a new school for Harry equally saw us returning to square one, passing go and not collecting £200. Sometimes we can rattle through all 7 stages in one day, other times it’s a longer process pausing for longer at some points to gather ourselves than others. Regardless of how long it takes, we feel each stage like a physical symptom at times.
Parallel to this rollercoaster, runs a much calmer route. One of loving the child who has changed and shaped you into the fiercest protector and loudest cheerleader that you are. Yes, it can be hard to move through these stages and to constantly adapt to the new changes. After all, if we were meant to be chameleons we’d have scales – but adapt we do and we buckle up to face the journey.
Nothing detracts from the intense love we feel and in fact, if life is indeed a rollercoaster, our children’s unconditional love and incredible bravery is the fuel in the engine.
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