Having a child with special needs affects the whole family.

Having a child with additional needs changes a family.  I think you become more insular as no one can truly understand how much your life has changed.  We are not the same people, same couple, same family as we were before our special boy, Hugh, was born.  Our priorities have changed.  Our needs have changed.  Hell, even our political views have changed.  It’s not all bad though.  Yes, I am beginning to feel isolated from even my closest friends, but in turn, we have grown stronger as a couple, talk more openly and rely on each other more.



My overriding concern has always been though, the effect having a brother with special needs will have on my eldest son, Sean.  He is nearly three and I worry almost as much about his future as I do about his younger brother’s. Will he get bullied for having a brother that is so ‘different’?  Will he feel neglected because his brother demands so much care and attention?  Will he be embarrassed by a brother that can’t walk or talk?  Will he be jealous…

Que Sera Sera


I have been thinking about the future a lot lately and wondering what it may hold for us as a family.  I try not to look too far ahead and just concentrate on getting through the day, the next appointment, the winter ... but sometimes it is hard not to worry and the stark reality hits you in the face.

I took part in some research recently.  It was about support and services for the families of children with life limiting and life threatening conditions.  I tried to mentally prepare myself but it really opened up a whole can of worms, reminding me of memories I hadn’t even realised I’d suppressed and brought up feelings I’d not even admitted to myself.  Perhaps the most difficult question of all was the final one – “when you look in to the future, what do you see/ what do you want? 

What do I want for the future?   First and foremost, I want there to BE a future!  For us.  For all four of us as a family.  I want Hugh there, smiling and happy. 

And if the worst happens?  I want to be able to look back over his life and know I did the best for him.  That I made his life happy and complete, that he knew he was loved.

And I want him to see the sea.

Many of you know how scared I have been to leave the house with Hugh.  It is not an irrational fear either.  Having resuscitated him twice now at the side of the road, I am terrified that his last moments should be spent lying in the cold and wet.  There is never going to be a good time, but cars rushing past while I kneel in the mud trying to get him to breathe surely has to be one of the worst. 

But I am also terrified that my fear will prevent him living as full a life as he could.  That he is missing out on experiences that would make him happy because I am too scared to take him out.  I am slowly starting to take more calculated risks – “he is happy and well today, so less likely to have a seizure, we’ll take a short drive out.”  And so far it has paid off.  I am terrified though that one of these days I will make the wrong decision.

On a recent trip out we made it to our local children’s hospice.  And here again I was confronted with the stark reality of the path that potentially lay ahead.  On the one hand, I met some severely disabled children; it scared me to think that one day Little H will be that size and need that level of care and support.  He isn’t two yet – just a baby so it doesn’t seem such a big deal.  But when he is a teenager, people will see him as severely disabled.  They won’t see my little boy, my beautiful smiley Hugh, they’ll see a man unable to sit, walk, talk, eat, use the toilet, to attend to any of his own basic care needs.  They will see a severely disabled young man.  They will see, I am ashamed to admit, what I saw when I looked at the others in the hospice. 

And that is his best possible future.

His worst? Our worst?  Walking through the memorial gardens in the grounds of the hospice, seeing all the pebbles in the stream etched with children’s names, the benches with plaques and the birthday balloons tied to the railings, deflating.  Imagine seeing my little baby’s name here?

The alternative is much worse.  The alternative is terrifying.  I can not bear to imagine it.

I have a friend whose child died at 11 months old.  Another friend whose baby was stillborn at 40 weeks, just days before his due date.  And my sister died at just two months old.  Their mothers, my own mother, would give anything to have just one more day, just one more hour, to hold, to love their child, regardless of how disabled they were, regardless of what the future held, regardless of how much time they had left together.

When I feel sad and scared about our future, Hugh’s future, I try to remember that.  He is mine, he is here and I love him.  Surely that is all that matters?


Comments

  1. Emma i feel for you so much & you never fail to make my eyes well up when i read your posts. You sound like you do an amazing job with Hugh and nobody should have to go through what you are.
    I wish i had some wise words to say to you but i can't seem to find them. All i can do is send you huge hugs and continue to think and pray for you and your family xx

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  2. Thinking about the future is so difficult. I too have known mums who've lost their special needs children. It's our biggest fear but you have such a lovely, positive approach to parenting Little H. He's very lucky to have you as his mum xx

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  3. Thank you both for reading and for your kind comments. Hayley your thoughts and prayers do mean a lot - I appreciate them. Thanks again to you both. Xx

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  4. This really touched me in lots of ways. I have always tried not to look ahead and sometimes that means I've made wrong decisions because I thought that things would stay the same. But they don't. Then again my dd is now a severely disabled 15 year old and she's still lovely and people still love her, yes some people look at her, but many more come over and chat to her and she 'chats' back. I meet so many wonderful people that I would never otherwise have met. Don't worry, you'll be amazed at what you can do and how good life can be xx

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  5. Reading this post I can see why you found my letting go post terrifying! You've got so much going on with Little H now, I don't blame you for wanting to bury your head in the sand about the future. I remember finding it really hard to look at learning disabled adults when Chrissy was a child. I couldn't imagine Chrissy looking like that. Now I'm here I can see a mile off the people who look at Chrissy without really seeing her - they see the disability instead - but that's their loss! The people that matter to you will still see little H. It will be hard but please try to treasure the happy moments you have with him now. I wish I'd done more of that when my children were small instead of worrying so much xx

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  6. omg! what a post... we learn to appreciate that the future is now, that with each moment you will learn a little more about your child and love them more too.you will cope with the future no matter what happens - you probably can't see that now but you will. h is here with you now, in this moment, enjoy him - you see past his disability and those who are priviledged to know him will too. who knows how long we will have our children - but then every parent is in the same position - no one knows what the future holds and it's probably just as well xxx

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  7. Jane, blue sky & hopeful mummy, thank you all for reading and commenting. You're right, it is important to live in the present and enjoy it. And yes, the people that know h do and will see the lovely wonderful person that he is and not the disability. Those who can't see that shouldn't matter. X x

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