There is no getting away from the fact that being a carer is damn hard. Emotionally, and physically.
We are permanently tired, aching from lifting, exhausted from sleep deprivation.
And that's the time our minds go for a walk into the darker recesses of our psyche and start to poke things that should be left to sleep.
Having no firm diagnosis is incredibly hard and it is too easy to think this could be due to something you did, or didn’t do. That if only you’d done x, your child would be OK.
People told me and Sam's Dad that time is a healer, we’d overcome the grief and move forward as a new family of three. Time does heal and it has done, but I don’t think we will ever fully stop grieving.
Because every so often when a friends child does something new, or when my wonderful niece wins a race at schools sports day, there's a little voice in my head that takes a deep sigh and whispers ‘what if….’. The other one is more self-pitying 'if only…'
This weekend we had my family round with my niece. This child is incredible, she adores her cousin and doesn’t view him with pity, or see him as anyone other than the wonderful little boy he is.
She keeps telling me she’d really like MORE cousins, and I keep thinking only when hell freezes over!
But the truth is it hurts to see how much less Sam can do than his peers.
It's getting a little easier now, after finding out that Sam almost certainly has a genetic basis for his issues I know it's not specifically something I did that caused this…
But the guilt is still crippling because I know that we gave him his genetic makeup. And with it any faulty/damaged genes that he may have inherited.
It feels like I’m on some sort of merry-go-round, where my brain struggles to accept that some things just ARE, and all that can be done is to accept them and work with it.
Ever thankful for Facebook, today it has given me more than a little bit of peace – being able to chat to people I may never meet but who share the same battles and triumphs as me and mine is more than cathartic.
It's essential to my sanity.
And today there was a little link to remind us of ways we find happiness daily; many were lovely and simple, live well, eat well and be kind to yourself being the main focus. And it got me thinking.
Over the past few years we’ve said goodbye to far too many beautiful, brilliant people (both children and adults), often taken before their time, and while that heartbreak reminds me of how fragile we all really are it also serves to reinforce how precious life is.
I get tired by people who constantly comment on how hard our lives must be. Or how difficult it is.
Yes, it is difficult and, frankly, it's all but bloody impossible to keep going at times; but there is so much joy, laughter and fun in there too… I’m bored of being miserable.
1. Spending time cuddling my boy. Nothing more complicated than feeling his little body close to mine, feeling the rate of his breathing and smelling this perfectly formed little miracle nestled in my arms.
2. Walking the dog. Just walking really, as long as its outside in the fresh air.
3. Jumping in puddles. Sorry, but there is a kid inside me that still *loves* jumping in puddles. If I can splash my husband at the same time, even better!
4. Reading. No, I do not mean Facebook. Or Twitter. I mean ACTUALLY reading. Just allowing myself to get lost in a book is therapeutic enough.
5. Doing some form of craftwork. OK, I have my own cottage business doing jewellery and crafts, but the rule is simple. Find something you enjoy doing and do it.
7. Breathe. How many of us actually breathe properly? I mean *really* breathe – till you feel like you’ve filled your body with air, then slowly breathe out again? Try it. It relaxes all the main core muscle groups and tops you up on oxygen. Can’t be a bad thing. Ditto to singing
9. Spending time with my other animals. Not just the cats and dog, but the fish and the chickens. If I’ve had a really rough day, 5 minutes spent watching the chickens as they happily cluck their way around the garden always makes the world feel like a better place.
10. Being kind to others. Sometimes a simple smile at a stranger is all it takes to turn someone’s day from bleak to brighter. Be mindful of other peoples moods, they may also have just had the day from hell.
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