For so long my greatest fear was that I might lose my son, but now it is that he might lose me.
His health has improved so much and I am truly grateful for that because for so many years the fear of losing him was an unbearable pain. My pain.
But losing me would cause him a pain beyond his ability to express. His whole world would be turned upside down. His pain takes on a whole new depth in my heart.
Who would take care of him? Who would devote their life and their own health to making his world great again?
For caring really does take an emotional and physical toll, albeit one which we don’t question when it is our loved one. We just love.
My physical body aches all the time. Some days it is a struggle to get up, let alone to be enabling another person to do all the things they want to do. The pain is constant and draining, but I try not to let my son know. Because I love him.
People have told me that they couldn’t do what I do, but I know that they would if it was their child. Love really does change everything.
But who else would love my child like I do?
To be honest, even looking 10 years ahead is scary.
Ten years from now he will be almost 21. I will be 52 and my husband will be 62.
What if our son still can’t stand? Or walk? Or cook for himself?
Will I still be able to look after him? Will I still be able to hoist him? Won’t he be a lot bigger than me? Will he want to live at home? Will he have a choice?
His big brother will go to university before long and it will be a wonderful opportunity for him. He will be ready because he has slept away from home a lot, gradually building from odd nights with Grandma to a couple of nights away at a time with friends. He knows that his room will be here waiting for him and that I will be wanting (expecting) him to come home every holiday. He knows that the family home will be his base till he no longer wants it to be.
But I am slowly realising that it might not be the case for my younger son.
And that is beyond difficult to think about. For this child doesn’t have sleepovers at Grandma’s house, or with a trusted auntie. He can’t even get in most friends’ homes to visit for a few hours, let alone sleep away from home. He isn’t building his confidence at time away from home like most children his age and those opportunities are not going to magically appear as he gets older.
People often have no idea of just how limiting life can be when you have significant physical disabilities. Visiting family or friends is often just not possible.
“Professionals” who are supposed to support families like mine just make me feel guilty for wanting support in the here and now. They talk about their “person centred” approach but they have no interest in providing what we actually need in order to keep going physically or emotionally, let alone in helping to slowly build a path to adulthood, just like able bodied children do.
I know that I am not ready to make decisions about the future.
But the future will happen, whether I am prepared or not.
He doubts his place in the world and sometimes he is afraid to go out because facilities disable him more than he can cope with.
In a world where children are afraid to go out and parents are afraid of the future, there is a lot to do.
Ordinary Hopes 
It’s so hard isn’t it? I can remember thinking this way with my older son, he’s 29 now and still at home and I still care for him, although his disabilities are not physical. Now, I am faced with an uncertain future myself and three young ones to care for. You never know what life is going to throw at you, no-one can really predict the future, you have to go with the flow and just hope it all pans out well xx
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This brought a huge lump to my throat as we are in exactly the same situation as yourselves, albeit Andrew and myself being a couple of years ahead of you both… Ryan too.
We have no suitable family to take over when we cannot, we cannot get into relatives homes, not even Ryan’s grandparents’ homes… everyone comes here.
Sending you all our love and shared worries xxx
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xx
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I didn’t want to read and run, but not really sure what to comment. I always worry about the ‘what if’s for my own children, so can’t even begin to imagine how scary that must be when your children have those additional supports. Sending much love to you x
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Thank you. I worry about my first son but know that he is starting out on an amazing adventure that he is ready for. It is very different with a vulnerable child with high care needs.x
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I hope you find answers to some of your questions. I don’t think we’re ever really prepared for the future, no matter what
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You are probably right.x
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It must be incredibly hard but only you know when you need help and don’t be ashamed or feel guilty for asking for it x
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What can I say? Nothing which makes things easier I’m afraid. All I can do is send you some virtual love xxx
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I know you understand.x
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This was really hard to read. It’s awful that you feel like you can’t ask for more help and support. I hope over time things seems clearer and your questions are answered. Wishing you luck for the future.
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I can’t even imagine what it must be like. We all worry about our children’s futures and what will happen to them when we’re gone – especially if we go sooner than expected. But it must be extra difficult when your child has unique needs. I hope that with time you will be able to work out some plans for your son’s support, but also that you will keep your health for many many years to come. #kcacols
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Oh this must be so hard. I can’t even begin to imagine. I think sometimes all we can do is just keep putting one foot in front of the other. I know that I worry about so many things, and the worry makes everything so much harder because you panic about how you’ll cope. But you’re strong – you’ve got through everything that life has thrown at you so far. Let tomorrow worry about itself… (easier said than done) #blogcrush
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and im so certain you won’t fail him. I completely get your fears though. I cant imagine what it must be like and I’d be one of those people who would have said I couldn’t do what you do. but you are right – you just do what you have to for your child. no real advice or anything constructive to offer other than hugs xx #KCACOLS
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It is hard. I always say I can’t think too far into the future because I just don’t know what’s going to happen. But in the back of my mind when we think about doing things is..what about the boys. Should we move.. what about the boys? Should we get the loft converted… what about the boys? At least one of their future’s is going to be with us – for a long time, and then what? See I can’t see that far. Perhaps I should be, I just can’t at the moment. Thanks so much for linking it to #kcacols and hope to see you back again next time.
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What a heartfelt post. I can’t even begin to imagine. #KCACOLS
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Although I can’t offer any answers or wisdom, I share your mommy heart. My oldest has high functioning autism but he struggles. And I think constantly about what his future holds, how he will cope. I just want others to love him as much as I do and care for him the same way!! I don’t know what the future holds but I just from reading your blog posts you stir up such love in me for your son 🙂 Have faith mama!! There is still good in this world 💕
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That is a beautiful thing to say. Thank you.xxx
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