Words are a mixed blessing.
Some can really resonate, a quote from an author, a word of scripture from a holy book.
Some can irritate.
Some are just plain wrong, I’m pretty sure that Winnie the Pooh didn’t make the, “I have a dream”, speech, and the things that Oscar Wilde, "reportedly said", well, just don’t get me started.
Hand in hand with this come the helpful little phrases people choose to share with parents of children with additional needs.
Most of this comes from the right place, although, “God only gives special children to special parents”, should be shoved somewhere else altogether.
I have compiled, for your reading pleasure a short summary of some of the most common.
You probably have some favourites of your own.
If any come to mind that help you/make you want to punch somebody please get in touch!
Don’t sweat the small stuff, and it’s all small stuff.
In parenting a child with disabilities, as in life generally, this is not entirely true.
We brush up against mortality, severe illness, pain and struggle on a regular basis, plus the big questions of faith, meaning, love and loss.
It’s not all small stuff.
Whether you have enough likes on your Facebook Page, if you have sent a birthday card a bit late, if your house is a bit untidy this, my friend, is the small stuff.
You have my permission not to sweat it.
What doesn’t kill you makes you stronger.
This has always been one of my favourites.
However, now I wonder whether to replace it with, “What doesn’t kill you makes you exhausted, sleep deprived, clinically depressed, the possessor of a fierce and dark humour, snappy and reliant on alcohol”.
Self-care suggests the first reading is preferable.
On the days where the second is more accurate be kind to yourself.
Which brings us neatly to:
Be kind for everyone is fighting a hard battle.
You my fellow parent, if you care for a child with additional needs you are fighting a hard battle.
The person who has parked in a disabled space with no badge, I have less sympathy for.
The Local Authority responsible for providing care and support for you, your family and your child?
Well, they are paid, and should be working on your behalf.
For most special parents this could be adapted to Be Kind for everybody is fighting a hard battle with the Local Authority.
It shouldn’t be accurate but there we are.
What cannot be cured must be endured
Well in reality yes, and emotional resilience, the ability to bounce back and keep on keeping on is useful tool in the special parents armour.
I would argue however that you need to find people who get you, family friends, parents in the same position, so you can endure it with a better grace together.
It may be that you can (whisper it quietly) even enjoy it!
I will leave you with my current personal favourite, which happens to be biblical but I think describes us, our children and our struggles well no matter what beliefs we do or do not have.
But we have this treasure in jars of clay,
to show that the surpassing power belongs to God and not to us.
We are afflicted in every way, but not crushed; perplexed, but not driven to despair, persecuted, but not forsaken, struck down, but not destroyed.
(2 Corinthians 4:7-9; The Bible)
As I frequently find myself perplexed, despairing and feeling forsaken this curiously helps me.
Despite all this I am a treasure in my 47 year old body, as is my beauteous daughter in her tricky, muscle weakened, wobbly, treacherous, one.
We are all the same no matter what our abilities or disabilities and that,to me is rather wonderful.