Imagine if that was your child; the child you gave birth to, or the child you watched being born, or the child you met at the age of 4 and adopted- the miracle that someone else gave you. Imagine this: all that love you're imagining is real; all that loss you're imagining is going to be real one day; your child you're seeing in your minds eye, or are dreaming of, or will be seeing all too soon is real. And they have a life-limiting, life threatening illness and there is nothing you can do to stop it. You can't wrap them in a bubble of love; you can't hold them and tell them everything is going to be alright; and you know that the possibility of you burying your own child is a very real and quite probable reality.
It's the kind of thing you hear about- but know it could never happen to you. Or you see an article in the paper and think 'oh how horrible, I'm so glad that's not happening to me'. But it happens; premature death is real, parents do outlive their children and people are left behind, missing their big brothers or little sisters. It's not a romantic story about one couple's fight to save their baby, it's the reality of doing anything you can to make your child's life a bit better in place of it being longer. Some diseases can't be fought. Some illnesses don't get healed through miracles. Some children die.
And it's horrible. It's not nice for the child, it's not nice for those left behind and it sure as hell isn't nice to watch. You wake up every day and thank some higher power that your family is still alive but then you get up and wake your 5 year old who has to get themselves ready for school whilst you wash and dress your 15 year old who hasn't walked in nearly ten years. A door isn't wide enough- your holiday get cancelled. A cold means a week in a High Dependency Unit. Treatment isn't developed, your child slips away with you watching.
Let's rewind. Imagine those feelings again, that child, those pangs of grief as you sit in a room and doctor explains in clinical terms that your child has a condition which could very well destroy them. A week later you get a phone call- "we can help". A place where your child can go, be looked after and live happily- not for good, just to give you a break. Not only does this place offer respite for your poorly child, they'll also help out with your healthy children- emotional support, fun days, opportunities they wouldn't normally get because of their disabled or ill sibling. You get these opportunities too, mind. You get breaks, emotional support and the chance to give your child a safe, happy place where they can go every now and then, make friends like them and feel normal and special simultaneously.
Well these places exist. One, very close to my heart, is Rainbow's Hospice for Children and Young People. They have helped me and my family out incredibly, giving respite care to my brother which in turn gives my parents a rest, emotional support for my other siblings, myself and parents, fabulous trips to meet various big wigs, ponies in bedrooms, emergency care, incredible facilities, fundraising nights and most importantly, giving us all a bit of hope. We're not the only family to have been helped by Rainbows; thousands of families have received support just like mine over the past 2 decades, making this year Rainbow's big TWO-ZERO. My family would not have gotten through the past 8 years without them and I want to give them a massive thank you for everything they've done for us and the other families who have visited Rainbows throughout the years. They've been there in crisis', when Josh has been in hospital, advances in his conditions, always with a smile and sometimes with latex-free glove puppets. People might think a children's hospice is a morbid idea, but honestly I think it's the happiest place on earth. Yes, many of the children who go to Rainbows will sadly pass away, but their time there being looked after and loved means more to their families than anything a hospital or school could have given them. Children's hospices aren't about dying; they're about living. They're about making the differences they can make in a child's life while they still can; they're about celebrating people's differences and helping everyone cope a little (lot) better with those; and most importantly they're about hope.
That's why they're called Rainbow's; because rainbows bring hope.
Thank you for reading. The biggest and best thing you could do now, for me, is to go to the Rainbow's website, have a little look around and if you could, please please please donate. The best cause there is in my eyes. They've done more for my family than any other charities put together and every single penny counts a massive deal towards costs of keeping Rainbows running and its residents cared for. You could even do a fundraiser- handcuff yourself to your best friend for 24 hours, do a skydive, have a cake sale, lottery, coffee morning, anything counts.
Thank you.
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