I think you know by now – no one can tell you what the future holds. No one can tell you that this path will be easy, that it will not be fraught with heartache and frustration. No one can tell you that this will all go away, that the child you love so fiercely will be just like other boys and girls.
I cannot tell you that.
But I can promise this –
One day, you will wake up, and that cold dead weight in the pit of your stomach will feel a little lighter. You will barely notice, hardly perceive the change that happens oh so slowly. But, one day, the texture of your reality will feel comfortable again. You will no longer feel like you are in a bad dream that you need to escape from, if you could only wake up. One day, there will be a new normal and you will know that you will be okay even when some things are not.
I know, right now, that future does not seem possible. You might be desperate for immediate relief – for someone to tell you that there has been a mistake, for tales of other children who lived ‘normal’ lives, who achieved amazing things. You may scour the internet for every scrap of information, for every sign that your darkest fears are unfounded. Be careful. Madness lies that way. For every story that brings you comfort, a dozen more will paralyse you with dread.
But they are not your story. They are not your child’s story.
There will be dark days. There will be times when the sick terror returns and you could scream with frustration. Sometimes, the fight will exhaust you – the fight to make it through the day, the fight to stay calm, the fight to be your child’s champion when no one else seems to care. You will feel so tired that you will wish there was a choice, a way to stop, a way to curl up in a ball and give in to despair. These things are almost certain.
But certainty is a scarce commodity. Your worst fears are a physical presence, concrete, weighing you down, restricting your airways. Hopes and dreams seem light and flimsy – as inconsequential as the air. You cannot grasp them long enough to trust that they are real, to imagine they could come true.
But some things are true.
You are strong enough. You will adapt, become a better person. Love, safety and happiness – they can be enough. Most days, they will be enough. When your child achieves something, you will be delirious with joy. When they do something you once thought was impossible, you will dance, giddy, around your kitchen. When you can penetrate their world, when you share the wonder of their unique perspective, when they make connections with you, and others – you will know that there is peace and goodness in the world once again.
Right now, you feel raw, bruised – your wish to take it away is all you can focus on. Or, you cling to a future you could bear, a future filled with those flimsy hopes, and you cannot escape idea that it is the only future that you want, that it is the only future that will not be a tragedy. That will not change quickly. This grief – it is too powerful to melt away.
But terror will retreat. That concrete spectre of dread will lose its power to haunt you so relentlessly. Hopes and dreams will evolve. Joy will become tangible again.
I cannot tell you that it will be okay but I can promise you that okay will change.
And that will be okay.
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