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!
Having two boys with very different needs can make playing together a tricky task; Zac’s sma means he needs help to physically move around and Caleb finds social interaction challenging. However, I watched my two boys play together yesterday – both of them playing around each other’s different needs thanks to a scooter and a wizzybug.
“Wizzybug” is Zac’s little electric wheelchair which is provided by a charity called Designability. This amazing charity run a loan scheme where wizzy is loaned free of charge until a child reaches the age where a bigger power chair is needed. Zac was lucky enough to receive a wizzybug last year and he has gradually built up the strength and skill to drive himself. Wizzy has given Zac a little bit of independence and the ability to make choices for himself but I think most importantly wizzy has given Zac the chance to play.
Yesterday we went to the park and we took wizzy with us. Caleb raced around on his scooter and waited for Zac & wizzy to catch up, they “ran” together to the play park and thanks to wizzy Zac was able to access some of the activities by himself. I think for the first time ever I heard Zac say “mum I’m going over here” and off he whizzed to a game. I was waving as he drove away – it was such a novelty to be able to see him make his own choice about where he wanted to go! I then watched my boys chase each other on the grass – a wizzy chasing a scooter – they were laughing and were full of nonsense. Zac was able to drive through the crunchy autumn leaves as Caleb led them to a hideout in the woods and my two boys were pretending to be gruffalo’s in the forest! Wizzy has also given Zac the chance to get up to mischief and like any “normal” 3 year old, he decided to “run” away. He had freedom to be naughty. The lovely thing about this is that it also gives Caleb the chance to be big brother. Caleb was scooting along the path, giggling at Zac “running” away as he tried to persuade him to drive back round; a big brother trying to get his wee brother out of trouble!!
As I watched my two boys playing and having fun I realised that it really doesn’t matter what our differences are – fun is something that’s in your heart and with the help of a scooter and a wizzy I just saw two brothers having fun in their own world & they were completely unaware they were any “different kind of normal”.