This post was inspired by a wide collection of other’s I’ve read recently and by a few recent events in my own life. I’ve read quite a few blog posts about what to say to someone with a child with SEN’s/disabilities and what NOT to say. I rarely comment on such things, as my feeling’s with regards to what one should and shouldn’t say is that whatever we say can be open to different interpretation. One person’s words of comfort could be another’s twist of a knife.
Having 2 children with disabilities I’ve received the most inspiring words of kindness & wisdom, and then the most hurtful insensitive of comments too. I’m 15 years in to my eldest child’s disability, that’s 15 years down the road of being a parent to an extremely disabled child. I also have an 11 year old son who has autism ( I’m very grateful he has his health).
After such an amount of time I still don’t appreciate insensitive or thoughtless comments but what I’ve learnt is that if/when someone say’s something insensitive it’s often come from a place of ignorance, a lack of understanding, rarely from a place of spite. I don’t find myself getting angry at lack of awareness anymore,. These days I often even smile at people who stare. I have enough in life to feel angry and hurt about, I spare myself the grief of getting angry or hurt by people who don’t know better. I used to want to be a one woman crusade for raising awareness. Now I direct my energy in to the charity committee I chair and nursing my daughter. Raising awareness is still incredibly important and I like to think this blog is a contribution towards that, all be it a small one.
This past year has left yet more emotional scars, my daughter’s deteriorating health, my son’s increasing issues, and my fear of what will be has grown tenfold.
The other day though I had a moment of clarity, the kind that makes you go ‘thank god for what I do have’. I met a lovely girl with serve disabilities. I also met her mother and had spent sometime getting to know her. I was stood near by as another parent chatted to her, this parent didn’t have a child with disabilities. This lady pointed to the girl with disabilities and asked if what she was doing was something she often did/typical of her behavior. The parent explained that yes it is, it was a result of her condition,and then their conversation continued. I stopped listening as I paid attention to something else that was going on, 2 minutes later though alarm bells rang as my ears picked up the conversation again as I heard the parent of the child with the disabilities voice just crack. Just that lilt in the voice that says someone is about to cry. I intervened quickly and turned the conversation to another topic. Later I asked this lady if she was OK ? (I didn’t ask what the other Mum had said that had so upset her).
She smiled and said ‘it’s funny how because you laugh and smile and get up and get dressed each morning that people think you’re OK isn’t it’. I completely understood. I said ‘I know it’s not ever really OK’ , she looked at me and then smiled and said ‘I know you do’. To which I replied ‘well we’re not alone then ‘
Just as laughter bonds people, grief often unites us too. I won’t disclose any more about this person or their child and you’ll have to trust me when I say that what that parent lives with on a daily basis is both very scary and heart breaking, and akin to heart break it is a sort of grief, a grief that can never really be healed.
Our conversation moved on and the one lovely thing that came from our chat was her telling me about her amazing husband, how her husband is her rock, never doubting, never fearing that they couldn’t manage. She said he was always on her side, be it with family, friends or medical professionals that had differing views, he never questions that she knows best. He always makes sure she gets a break from the caring too and has just always been there for her for 27 years now, despite him having had an illness for many years himself. She said he always say’s they’ve got each other and that’s enough
Another thing we both have in common. I too have a husband who is my rock. I also have a Mum who goes to lengths far further than many other’s would ever dream. As a carer it makes such a difference to have someone there for you. I often wonder how on earth people with out someone there for them do it. Not the practical side of things, though that is hard enough. I mean the part where they keep going in the face of nothing but adversity. When life seems’ determined to test how much more you can take each day.
Your rock doesn’t have to be your other half, or your family if you don’t have either, it could be a very good friend. Everyone needs someone who has their back, no matter what their circumstance, but to carers that support is SO precious. It can mean the difference between coping and just surviving. So today, instead of blogging about what we’re going through with our daughter at the moment (which isn’t good). I decided to blog about what I’m thankful for. The love and support from my wonderful family….and here’s hoping that those with out support find support too. If you’re reading this as a carer and you’re someone with out much support, or you have support but just could use some information about help available to carer’s then I’d definitely recommend looking here .
If you’re someone that care’s for or about a carer, chances are your kindness and friendship is appreciated more than you will ever know.
I wrote this because after this conversation I had with that lady is struck me, I wondered if her husband really knew just how much she thought of him. After 27 years of marriage he probably does, but so often things go unsaid as each day unfolds and it would have been nice for him to have overheard all that she said.
All to often I read about the negativity carer’s encounter and while I’ve experienced it too I thought it would be nice to show the good some of us are lucky enough to encounter too. We know it’s not easy being a loved one or friend of a carer, we spend to much time wrapped up in our own worlds (not out of choice) and we might forget to ask how your day was, or even your birthday
So a huge thank you to my husband and my Mum. Also to my family and my very kind parents in law, and a couple of friends (I don’t have many) and to all my very good twitter and blog friends. I probably don’t say it half as often as I should. Thank you to you all, you make a difference when you don’t have to Don’t underestimate the difference you make, you give some of us the motivation to keep going when we feel like we’re wading through treacle