An understanding

It’s taken me a long time to understand my parents, the bigger picture, the role they played, why my life would never be any different and why I came to struggle.

I remember a conversation I’d had with someone years ago about parents and that just because we become parents, doesn’t mean we we are emotionally ready. Parents aren’t always equipped to nurture or support their children, particularly if they’ve not had the support themselves. They parent as they have been parented.

It’s what they know. When it comes to a child who copes with any form of disability, parents will cope even less. Unconsciously, they may also feel responsible and guilty that in some way they are to blame and may find it difficult to cope with the guilt. It’s not something they talk about.

Although a child doesn’t ask to be born with problems, there is also still very much a stigma behind what that child and the family have to deal with and that coupled with their parents’ already bruised emotions, is something parents find difficult.

I get it. It’s not that my father didn’t want to know what it was that I had been dealing with for all of those years. He couldn’t deal with wanting to know. There is a difference.


4 Oct, 2014

14 thoughts on “An understanding

  1. I agree with you. You have hit the nail on the head.

    I’ve worked with children with disabilities most of my nursing career and have had it lucky due to the fact that all the parents were accepting of their child’s disabilities and were well informed about what ever the problems were. They were involved and sought out support from others.

    I have adopted a special needs child and if it wasn’t for support from others I would have been lost. I think support and help from others is paramount for the child to strive.

    It is very difficult for parents when their child has a disability. They do feel guilt and lost. Their dreams of a child that is normal is shattered and they wonder what they did to cause this, when most of the time it is just something that happened and it isn’t anything they did.

    Nowadays people are more open and want to talk about their problems which is good. I think the biggest thing that helps these parents are support from others and support groups. Also having a good medical team that will have the child and parents’ best interest at heart is important also.

    Our son has 17 doctors and therapist and everyone of them are supportive of us; some more than others. I think if your parents had that support things would have turned out differently for you.

    1. Thanks Lisa! Their parenting probably wouldn’t have been any different, but I do agree that with the right support for all of us, will have meant they would have been able to at least emotionally cope better.

      However we’re born and whatever difficulties present themselves at birth, parents always feel responsible, even though it’s usually nothing they’ve done. It doesn’t stop the feelings of guilt.

      Your last two paragraphs say it all Lisa. I can resonate because I understand what support is. Your thoughts are a beacon for me today, because I can imagine what support feels like.

  2. My parents never should have had children is the understanding I have come to!

    I find it insulting at times when I hear things like, ‘They did the best they could with what they had!’ I know I tried to be so much different than they were, but turned out to be so much worse which has been so very hard to deal with.

    I did feel so guilty when I found out my daughter had CP because I felt like I had done something wrong and she was the one who had to pay for my sins. I was used to getting a raw deal in life but felt it was so unfair and would have so gladly traded places with her.

    “You live what you know” is exactly the understanding I have come to. I tried so hard to be a good parent but never fully accepted my demons so they eventually came back to haunt me. My biggest mistake was not doing the right thing as a father when I had a chance and it was used against me.

    I punished myself for so long because of it, but I’ve had to come to terms with only being human! People are often judgmental about how I feel about my parents, but they didn’t grow up in our world so they don’t have a clue!

    1. Thanks Randy. I am not sure how your daughter came to have CP, but it must have either been medical negligence at the birth or something from happening before your daughter was born. Either of those have nothing to do with you having done something wrong for this to happen.

      I know in my own case, my mother got into difficulty at my birth and wasn’t being re-assessed after she gave birth to my twin. I think no one knows what we go through, but are quick to form opinions of us ‘when we’re seen not to be doing the right thing.’ I’m not sure anyone is really in a position to comment or judge.

      Only those whose slate is perfectly clean are in a position to comment, but are we ever at that stage? I don’t believe we are. You’re making a difference now and that matters.

  3. Your last paragraph made me smile and I felt happy for you.

    I’ve come to similar conclusions with my own circumstances; I get it too. It’s a beautiful thing to watch healing, growth, understanding and forgiveness in progress.

    1. Thanks Tim. I agree and feel happy for you too and you’re right when healing, growth and understanding is obvious, it’s a wonderful thing.

  4. Part of me is irritated that my parents didn’t get more testing done as a child. Another part of me is thankful they didn’t because I wouldn’t have known my true physical and mental potential.

    Perhaps its a good thing I wasnt tested. Now I’m doing it all at 33.

    1. Thanks Bonnie. I think we have to make our minds up about what our parents have and have not done, whether it’s around disability (as in our case) or around other issues.

      From what you say, although your parents didn’t throughly look into your disability, you did find some things out. You’re lucky that your parents continued to encourage you with your disability and that they didn’t hold you back in that respect, which is why you’re so relaxed about looking into it now.

      I tend to bring acceptance and closure through my understanding. Not knowing what it is we have to deal with can bring with it an enormous amount of anxiety and stress. It sounds like your parents balanced things out.

      I didn’t know what I had and had no support and encouragement to help me go out and achieve my full potential. I’m having to do that now by myself.

  5. I understand completely. My parents did do the physical therapy at a real young age, then stopped. I dont know why.

    All throughout school I had my own special physical education teacher that taught me things, like how to dribble a ball and skip at my own pace then I would join the rest of my class and do their physical education to my ability.

    1. Thanks Bonnie. You’d probably have to ask your mum why your physical therapy stopped. Perhaps it was a financial thing.

      I remember mum doing my exercises with me and I did have physical therapy, but as far as emotional support for my physical problems were concerned, it wasn’t there. My physical symptoms were never discussed. I never knew what I had. In school I was expected to keep up with the other kids. I was made to do the High Jump, because without a parent or doctor’s letter I wasn’t allowed to be excused.

      When I look back I can’t believe what I went through. I can’t do much about it now of course. I can only find an acceptance and move on.

  6. Thank you for your understanding and help with all of this. I’m sad you didn’t get that support as a child and you clearly needed it!

    We’re all here for you and each other. Thank you to you and to God for this Diary and bringing SO many people together.

  7. Of course! Part of me truly believes this is part of your purpose in life. To bring so many people together with disabilities.

    Thank you so much for this help! Today I’m going to be recorded walking without me noticing, so that way I don’t walk a different way without ‘knowing.’

    I’d like to send you the recording thru email.

    1. Awww thanks Bonnie. This isn’t something I consciously thought about, it just happened and I couldn’t be happier doing it.

      I’d love to see a recording of you walking by email, if you’d like to send it to me. I’ll PM you.

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