Reflection…

Following on from talking about Jack’s progress this past year, I was drawn to think about my own. Jack’s journey has sent me on one of my own, one I never thought I’d take. I didn’t give people living with disabilities and their families much thought bar the few thoughts about ramp access to buildings. I had no idea when it came to the many struggles they faced in the quest of having a typical family day out, a typical life. I didn’t realise the thought I should to give to the mental and emotional wellbeing of their family. I didn’t give thought to noises, lights, people, the food available, the space and safety in which to change their loved one, the everything.  I just didn’t think. Not because I didn’t care but because I didn’t know how, or what I should be thinking about. There’s a wealth of information on the internet regarding the things people need to think about, the adjustments that need to be made, the things to say and not to say. When we started down this road I didn’t want to read them. I didn’t want my world to be consumed by the do’s and don’ts. I learnt that that isn’t possible though. The things to do and say are in my head every time we go out. The coping strategies are always in my head, even at home. The mental critique of places we go, it’s always there in the back of my mind. This playground can’t accommodate Jack even though it’s only just been built, I shouldn’t bring the others here with him, it isn’t fair. There’s no where to change him here, we can’t come here again with out a back up plan. There’s nothing here that he can eat, we must always bring a lunch for him. Being prepared, it becomes second nature, things that were once alien become normal. People ask me to describe how Jack’s condition affects him. I struggle because he’s always been Jack and I don’t see that he should be any other way. I don’t see the difficulties. I see the love, the smiles, the caring for animals, the joy when he’s in the water. Ask me to talk about my son and I’ll tell you all of the amazing things that I love about him. I won’t tell you the rest. Because the rest doesn’t matter. I’ve come a long way over the last 6 years, I’m more patient, my understanding is greater than I ever thought it would be. I am an expert in my son. I see problems when others see none, my senses are always alert, always ready for what may be thrown my way. But my heart is always open to calm and soothe. I am  relaxed. Knowing that I can control very little helps me to relax and live in the moment with my beautiful boy. Knowing that our lives could have been so different makes my heart sing with joy that we are where we are. We are lucky. We might not be in control all of the time but we are here, as a unit, as a team and we are lucky.

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