What If I Fail My Disabled Child…?

(The post below started it’s life as an instagram post, but social media has such a short shelf life in general, and I feel that these thoughts deserve a somewhat more permanent place. So here it is, ever so slightly edited, as a blog post.)

Dark Clouds

I would have loved to be asleep right now, but you’re still awake so here I am. Laying in the dark, by your side. Dreaming of sleeping.

And I allow the dark clouds to sail in. The uncomfortable thoughts, the worries and the ‘what if’s…

What if I fail you?

What if one day, I get too tired to care for you?

What if any of us get really ill?

What if we crash mentally, physically, financially…?

What happens when you get stronger than me, stronger than us? What happens then when anxiety sets off a response in you of fight or flight?

How will you cope with growing up, how will all the hormones of puberty affect you? What if you get too angry? What if you lose your happy spirit?

What will life be like for you as an adult?

What if you outlive us and there is nobody left to love you?

Dark Clouds 2

Letting theses thoughts exist, and putting them into words can help, in a way, making me feel less anxious. Acknowledging worries is also an aspect of mindfulness.

But there are still some thoughts that I don’t want to put into words. Some worries which I feel (for no logical reason) will become more powerful, more real, if I name them.

Dark Clouds 3

Whatever the worries, I take comfort in the moment. Right now, you’re happy and we are here together.

In this moment, I’m here in the warmth of your presence.

And there is nowhere I’d rather be.

*****

What if I Fail My #Disabled Child? As a special needs parent, I tend to take things day by day and focus mainly on the present. But sometimes my mind wonders, and the dark clouds sail in, with the worries and anxieties... #SpecialNeeds #Autism #Parenting #Anxiety #MentalHealth #AutismParent

*****

Thank you so much for reading! If you have any thoughts on what you’ve just read, I’d love to hear from you in the comments below. And please join us on social media too:

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43 thoughts on “What If I Fail My Disabled Child…?

  1. I have these same worries for my child and even more! I agree with you – there are some worries I don’t want to write down or even say allowed for fear they will come true. Sending thoughts and prayers your way!

    Liked by 1 person

  2. My sister’s special need child is now in his 40’s and still a happy “child” but he can get upset on occasion. I think your feelings are normal and appropriate. My sister and her husband did financial planning for their son decades ago and have updated it when necessary. And yes, she still worries. #MMBC

    Liked by 1 person

    1. Thank you Carol, it’s so interesting to hear from/about those who are further down this path. I worry about the financial side of things as well, but even more concerning is the fact that however much you pay someone, they still may not have their heart in the right place… There are regularly heartbreaking cases of mistreatment exposed in the different kinds of homes which could be where our children end up in the future, if we don’t outlive them.
      Still, we have the here and the now available to us to make the most of, so that’s what I try to keep my primary focus on, most of the time. Send my love to your sister and her family xx

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  3. I had the same thoughts as my son was growing up. We worry so much about them and how they will find their place in life. My son is happy now, he’s had a rough ride, but he has come through it with a smile. No matter what happens in your lives you will do a great job and those worries will become insignificant afterthoughts x
    #MMBC

    Liked by 1 person

  4. I think all parents worry about failing their kids. I’ve been told that the fact that we worry is a sign that we’re being the best parents we can be for our kids. I for one certainly hope that is the case. #KCACOLS

    Liked by 1 person

    1. I think you’re right, about both the fact that (almost) all parents worry, and that it contributes to us being the best parents we can be. I don’t have a non-disabled child so I can’t compare if I would feel differently, but I imagine that the worries for most parents fade somewhat as their children grow and become more independent and more able to fend for themselves. Whereas for many parents of disabled children, the worries tend to grow rather than diminish. Though of course there will also be individual circumstances affecting these things too, and it’s not a competition about who has the greatest worries xx

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  5. Sending thoughts your way for being so strong – and for being willing to talk about these hard anxieties, which resonate so deeply with other parents. #KCACOLS

    Liked by 1 person

  6. I constantly worry about failing my kids. I am fortunate that if something happened to me my sister would step in if necessary but I am always worried about finances as the kids are still so young and need ferrying back and forth to school. Definitely thoughts I try to store in the less immediate part of my brain … x

    Liked by 1 person

    1. Thank you Martha ❤ It's lovely that you have your sister and that she would step in if needed. I can definitely relate to the extra layer of worries that come with financial difficulties. I'd love to generate some extra income for our family, but it's tricky to find away of doing that while not dropping any of the other balls I'm juggling… xx

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    1. Yes, it probably would be a worse thing to not be worried at all. I guess that what adds a lot to my worries is that my child in many ways is unlikely to develop the skills of coping as an independent individual, which most children achieve with age. So he will always depend on someone elses love and care, to keep him alive and safe xx

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  7. Pod on you for saying what lots of us are thinking but too afraid to admit too. I’n Terrified about what will happen if I get ill. I had a couple of cancers scares and I wasn’t so scared of the cancer but what happens to J and Baby F x

    Liked by 1 person

  8. Malin, I think you have summed up what so many of us parents feel, I’m reading this post and they could be my exact thoughts. A lovely post that will resonate with so many and help us all feel that little bit less isolated xx

    Liked by 1 person

  9. I have had these worries for my son for a long time. Most of the time you learn to live with them and push them aside as in the moment, your child is happy and content. As mine is entering his senior year in the fall we have definitely had some episodes of anger at school that have me concerned about him with college. Right now he has a para who helps him deal. But college won’t give him that. We are currently trying to find a way to help him learn how to better self regulate for the future. It’s definitely something that has kept me up at night, especially as he is tall and big but really is one of the nicest and sweetest people around. Just know you’re not alone with these fears. #abitofeverything

    Liked by 1 person

    1. Thank you Michelle! I can very much understand your worries about college, and how others may not be as understanding about (often anxiety-based) episodes of anger/agression, despite them being the most loving and sweet individuals most of the time.
      I hope your son will find some strategies which work well for him ❤ xx

      Liked by 1 person

  10. I’m sure all parents have such fears. Some of them will probably never happen but others might. There is no way to know and not much we can do about them. The only thing we can do is try to live in the moment and take it one day at a time. Easier said than done, I know. Thanks so much for linking up at #KCACOLS. Hope you come back again next time.

    Liked by 1 person

  11. Malin, what a beautifully worded post. I’m sure most people can relate to failing their child, but it’s when you have a disabled child that the worries truly set in. Living for the day is the best you can do. The future will take care of itself and you will deal with it one step at a time. x
    #abitofeverything

    Liked by 1 person

  12. As someone who has worked with adults who have learning disabilities I have seen and discussed these fears with many parents. The worry of what will happen when im not here is a big one.

    Obviously those decisions are a long way off for you, but I hope it helps for me to say that there are people out there, good people who genuinly care who can and will support you in whatever paths you chose xx

    #abitofeverything

    Liked by 1 person

    1. Thank you, for your supportive and understanding words! I know there are some wonderful and loving people out there, but finding them (and then holding on to them as well!) is not so easy. In a way I don’t wan’t our boy to outlive us. On the other hand, I don’t know how I could live without him. I hope that you’re right about those eventualities being a long way off xx

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  13. I can relate to this post and have similar feelings, all we can do is our best at the end of the day as long as they are loved and treated fairly then that is the key I think X #kcacols

    Liked by 1 person

  14. I suspect these feelings must come in waves and tsunami’s. Overwhelming to say the least. My best advice is twofold:
    1)plan for the future, whatever that may look like, and 2)live in this moment, everyday Sending love and hugs your way! xoxo #abitofeverything xoxo

    Liked by 1 person

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