Picture the scene: it’s early Saturday morning, you’ve been up several times in the night to reposition your son and you’re pretty tired. You’re desperate for a long lie and all you want to do is snuggle in bed. You’re back and neck are sore from the constant lifting you do and then you hear the little voice calling “mummy I want out of bed”. You sigh – it’s too early and you feel like you never even met sleep last night. You shout back “I’ll be there in a minute” and you try to muster the energy to get out of bed. The voice calls again “mummy hurry up I want out of bed” and you snap…… “I’LL BE THERE IN A MINUTE”. You are exhausted and the demands just keep coming. You immediately feel guilty for snapping – it’s not his fault he can’t get out of bed himself and you imagine how scary it must feel to be trapped in bed so you rush through to start the morning routine.
You do the chest physio, medication and set up feeds. By this time your other son is up and he’s carrying out his own morning routine – he lines up his toy cars on the kitchen worktop and you’re trying to make breakfast in between these strategically placed vehicles knowing that if any of them get knocked out of place your whole Saturday will be a catastrophe! It’s one of those Saturday mornings where your mind starts to wander; what would we be doing if we weren’t living this “different kind of normal”, what would our Saturday look like if we didn’t have these routines to stick to, it’s one of those Saturday mornings where you want to run away and have a “normal” life.
Then the post arrives and there’s a card addressed to “mr & mrs Cameron” – it’s unusual – most of our post is addressed to “parents & carers of …” . You open the envelope & see a little card with the words “thankyou”. There is a little verse inside saying your journey has been an encouragement to them & you’ve helped them. The card isn’t signed.
Your Saturday morning mood changes; you don’t want to run away anymore and have a “normal” life, your “different kind of normal” has made a difference to someone else and that makes it all worthwhile. So to whoever sent us that anonymous little card: Thank you, I needed that today to remind me that my “different kind of normal” is my reason for being on this planet!