Parenting · Special Needs

Scar tissue

One of the hardest things about parenting a child with special needs – in my opinion anyway – is the never-ending nature of it.  Everyone has stresses and strains in our lives and at times those are such that people need anti-depressants or counselling or both.  I have had both at various times in my life, most recently after we decided not to have another baby, because the risk of our daughter’s condition reoccurring in another child was so high.  I know myself well enough to know that I would need help to get through the initial phase of trying to cope with this decision, so I visited my GP and talked it over with her.  She recommended a low dose of anti-d’s and arranged some counselling for me.

I don’t know how well I would have managed without these but in the end it was me who made the decision to stop both.  Not that they weren’t helping, I think they were – but only to a certain extent.  And after some thought I realised what that was.  The issues in my life that cause me the greatest stress, worry and distress are the fact that my child has physical and intellectual disabilities and the related fact that I will never have any more children.  No amount of tablets and no amount of talking talking talking is going to change either of those facts.   So how to move on?  Hmmm. Now that one I dearly wish I had the answer to.  Most of the time I’m fine.  But sometimes I’m reminded of Sally Field in Steel Magnolias when Olympia Dukakis asks her “Are you ok honey?” when they are walking away from her daughter’s graveside.  “I’m fine”, she replies, “I’m fine”, and it becomes a visceral scream “I’m fine!!”  I can relate so strongly to that.  We keep saying we are fine, we are coping, we are ok, we are strong.  And yes we are strong and we are coping and generally we are ok.  But not always.  And – as yet – I have not found the magic way to make it all fine.  Its hard.  Its bloody hard.

But we put the good face out and we battle on.  I read a great line by Frieda Finlay once which for me sums it up: “Don’t ever think that parents get used to having a child with a disability.  We don’t.  We develop enough scar tissue to stop us bleeding in public, and to carry on some kind of a normal life.”

There is no logical end to this piece –in some of my other blog posts I’ve had a nice, logical conclusion, argument made, point pressed home, all neatly tied up, just like the academic I trained to be.  But life isn’t all neatly tied up.  There won’t always be a logical conclusion.  Sometimes all there will be is carrying on, day in day out, same old same old.  Its like I’m fighting against the serenity prayer.  I hope I have some courage.  I think I have some wisdom.  But the serenity – at times that eludes me.  I know I am not alone in feeling this way and I hope that knowledge helps other parents too.  Scar tissue has become one of my strengths.

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15 thoughts on “Scar tissue

  1. A friend on social media posted this link and was a wonderful read to stumble across. It reflects much of how I feel but worded far better than I have been able to so far… And knave tried many times. Have reposted the link on my Facebook page hope you dont mind x

  2. Sister, you need to accept the fact, and please, I am not being harsh here, because I have been where you have been and after a lot of soul searching and deeply evaluating my world I came to one simple albeit painful conclusion. I don’t owe anyone an apology for having kids with special needs. I put up with crap that most people would never imagine and I am doing the best I can. I have had to distance myself from people who added to my negativity and build relationships with parents of special needs kids who get it. We can laugh together, complain about teachers and administrators together and we can strategically discuss how to get the right Special Education programming for our kids. Put another, I just quit trying to but a round peg in a a square hole.

    I just started blogging about being a special needs mom with a tinge of humor and, as I said, it is cheaper than therapy and it makes me feel better!

    Sending you a HUGE hug!
    The Mom in Oz

    1. Hi there, yes I do get what you are saying, and I do have a great support network, but what I was trying to say in my post was that somedays it is just too bloody hard to always be positive – we are only human after all. Of all the parents of children with SN that I know I doubt any of them are upbeat and positive 365 days of the year. Its just not doable in my opinion. I am a little confused as to where you get the idea that I am apologising for having a child with special needs? All the best from a very wet and windy Ireland

      1. It certainly did not come across to me as if you were apologising for having a child with SN. You have written so honestly and touched upon a lot if issues here. I hope a lot of people get to read this.

      2. I agree and feel every feeling you mentioned. I couldn’t have said it better and just knowing even though I’m not alone…I still feel so alone and like my heart is broken and breaks a little more each day.

  3. Thank you for this lovely article. We too made that very same decision & it breaks my heart. Our 6 (nearly 7) was born with a mitochondrial disorder & he has physical & intellectual disabilities. So I totally get what you are saying & appreciate Frieda Finlay’s quote. Thank you for putting this so succinctly.

  4. Am glad I read this my children don’t have the same thing as your daughter but their is days that u want to run to the hills squealing but u just have to get up and get on with it that my motto lol. What u have wrote I couldn’t put into words myself but it exactly how I feel to day and am glad that its not just me

  5. Loved your article. As a SN parent I’ve learned one thing. The pain, the disappointment, the sadness never goes away. We just learn to live with it and go on. We don’t have a choice. I hope you have many bright days in your future.

  6. A friend shared this on Facebook. This is painfully and poignantly accurate. I think I may need to share this with friends and family who all marvel at “how strong you are!” Thank you for so eloquently capturing the feelings.

  7. What a well-written piece, well done! I totally get everything you say with regard to both special needs and the decision not to have another child, as I tick both of those boxes too. I agree that it’s impossible to stay positive all the time, and I have definitely developed a thick skin that stops me from breaking down in public on a very bad day. The way I look at it is that we parents are at the coalface of life while many other parents only get to scratch the surface. Unlike most other parents, we get to discover how resourceful us human beings can be and we get to experience the full range of human emotion – from the incredible highs of our children’s achievements to the incredible lows when things don’t work out as we had planned. We also get to meet some pretty amazing people that we otherwise wouldn’t have met. So I feel that I am truly living life in a way that other people don’t and at the end of the day, it makes me a better, more thoughtful and more appreciative person. That’s what keeps me going, well most of the time anyway. That and my beautiful son, who pushes me to my limits 🙂

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