Yesterday evening I had one of those awful moments where something happy led to a wave of sorrow. We'd had a great day - fab news from Bean's observations from her keyworker at preschool; things like that always lift my spirits and make me feel confident in the approach we're taking. We'd come home, played some games, sang a few songs and laughed a lot. As I held her in my arms and looked into her smiling eyes, I felt a tsunami of emotions hit me.
In an instant I'd leapt forward 10 years imagining having to discuss the difficulties she might face...the major one being sustaining relationships or having a family. I pictured this beautiful person suddenly having a whole wealth of problems and anxieties firmly being sewn to her shoulders...and my heart broke. Knowing that it would be me, my voice, sharing that news with her and being aware that I'd be watching her innocence evaporate as each word would be uttered.
You see, the every day doesn't frighten me. We live and breathe genetics and the impact it has on our lives - for the most part we've been incredibly lucky and she has been quite the enigma, rarely possessing the vast traits of WS. But the future? That has the power to send me into a quivering wreck. I get moments where I wish I could place her in a little bubble and prevent her from facing any of the potential hurt and sadness that's round the corner. I would happily share my home with her for the rest of our lives but I know that wouldn't be enough for her. She has a zest and power for life, for new experiences. It's those awful glimpses into the future when I abandon my normal positivity and begin only seeing negatives.
It's in moments like this that you have to take a breath...catch yourself and say that the only thing that counts is right now, this minute, this second. Guarantees and certainties simply don't exist for any family but perhaps those of us with children with SEND know this or feel this more than most. Today is the focus and tomorrow should be viewed with hope. As Aristotle said 'Hope is a waking dream'. Hope is the vessel that will guide us to tomorrow and great things can & will be achieved. As long as hope fires our core, the conversations of the future, the moments of sadness can be vanquished by the joy, love and dream of all that she is and will be capable of.
Bibi xx
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