I was composing a blog post last night and I stopped mid way and deleted it – it was about how we were feeling let down and disappointed that Bear seems to be a second thought or something not special enough to make the effort for. It’s been three months now, noone has been that ill or too busy, even if the gesture was just a card through the door. But you know what? He is an incredible child, he has strength and courage beyond his years and a wicked sense of humour and it is a privilege to be a part of his life. We’ve extended that privilege by default to family and people that we consider close friends, second family, some embrace it and make the most of it – and he adores them. Some choose not to, or take it for granted that he’s there – they update their friends on how ‘their boy’ is yet rely on Facebook updates to gain that information. I don’t feel sad anymore, more disappointed, they’re missing out on something beautiful – tomorrow isn’t promised and it’ll only be them that has regret when that time comes. I’m not chasing anymore, you’re either with us or you’re not. Other people have come into his life by accident, a third family, the magic one. So me of these people are the very foundation on which our support system is based. They are the ones who understand what this feels like, that know what it is to be in a bubble that remains static while the world continues to spin around it, that send random daft things in the mail (virtual and snail) that make us smile wishing desperately that they could physically be here to help but are restricted by land and sea. Nurses who have to come and say good morning and good by at the start and end of their shift even if he isn’t allocated to them, that include me in the tea run (and the late night takeaway order!) and help out with Bug when Bear needs my undivided attention without a second thought – these are people who hold a special place for him in their hearts and their actions reflect this.
So maybe we’ve just come full circle, found acceptance, worked out who we can really depend on. If you ever find yourself, or your child in hospital long term, you’ll find out just how isolating it is, how tiring, how draining, and we’ll continue to do our very best to support you however we can, because that’s the kind of people we are, we’re just learning not to expect others to treat us how we would treat them – it’s only taken 30+ years but we’re entering a new chapter in our little family’s story – and the cast list just got chopped.
The Bear and The Bug 