The Special Needs Tunnel

Magical but hard is a great way to describe the early years of motherhood. So far so familiar, in a beautiful and encouraging article by Kate Takes Five. But unlike other mums I didn't come out the other side. Motherhood is a bit like a tunnel you see, and the special needs tunnel is longer and more convoluted than most. Twenty two years after becoming a mum, my days are still book ended by children. I still stay up with one, and get up to another. So it was bittersweet moment when I acknowledged that I may never leave at all, and may always be on the inside looking out.

When you think of a tunnel, what do you see? Is it a dark, scary place that you can't wait to leave? Or a safe dry comfortable refuge from the world? The special needs tunnel can be both of these.

There are many ways to enter. Sometimes you go in the main door with everyone else, sometimes you start from a different place. But once you've been diverted, your journey changes. You watch as other Mums slowly emerge and start to pick up the threads of the life that they had before - if they want to - while you wait and wonder what will happen. Later on their adult children may leave home while you're still in the tunnel, wiping faces and bums.

Sometimes it can be grim, the lights go dim, or black out completely, leaving you to feel alone in the dark. The walls close in and everything outside seems unreal. All you can see and deal with is right in front of you. And sometimes not even that. There are monsters down here too, mostly in the form of uncaring faceless bureaucracies, that seem determined to grind you down until you lose any hope of seeing daylight again.

Then around a corner the roof falls away and you blink in the sunlight of a good day when everything looks bright and sharp. You spot the dust on the windowsill and actually see the smiles on people's faces, and the deep colours of spring flowers in bloom.

But there is one thing that makes a difference now: wherever you are, if you are on the internet at all, then the special needs community will be with you. Supporting, advising, sharing, hugging. Perhaps you will make it through to the other side, perhaps your children will grow up to be strong and independent, they will be able to live a good life with their differences. Then those families who have already made it will hold out a hand to welcome you, and those still in the tunnel will cheer you on. Because we all hope to join you one day. Out the other side.




21 comments:

  1. I am still in there, wiping face and butt..... although I do emerge on occasion, only to be pulled back in after a brief respite. Nice piece of writing and really highlights what life is/can be like.

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  2. This was so well written and describes the world you live in, to me and outsider, so well. It also helps for me to know what small difference I can make in the life of someone in that tunnel. I hope today is one of your good days.

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  3. This piece really moved me, beautifully written. Can I share it on my blog?

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  4. A beautiful piece and so honestly written.I think you should write a book.It would be just an extension of your blog. Maybe an ebook even ..and extend yourself to even a larger, different audience. Maybe a group of short simple books for the mom who is in the tunnel ,who has only a few minutes in between struggles. You have a gift...It would possibly a source of income that the government have cut that you could use on your family or put into respite...Just a thoug thought.Nancy

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    1. One day maybe :) Thanks so much for the lovely comment Nancy x

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  5. When I've had a crap sleep or few days or few weeks, my mantra is "this too will pass". I think I'd be more than a little panicky at the thought of it not ending... so here's to you and every other parent who are in the special needs tunnel:sending you so much light, energy and love (and considerable more sleep) xxx

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  6. Beautiful way of showing how our perception can change,depending on the day that's in it XXX

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  7. This is exactly how I imagined it to be for you. Your posts about the happy times made me see that it's not all dark and hopeless in the special needs tunnel although it is very very very long. xxxx

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    1. No it's not, and I'm so glad that that comes over too xxxx

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  8. So beautifully described - you always bring me to earth, in a good way

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  9. So beautiful....yes it's a tunnel sometimes without end but there is always light there at the end. usually it's the child's smile :)

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    1. That definitely applies to both of our girls :)

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  10. Beautifully written and very well said xxx

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