What Bluebell Wood Hospice means to us...
10 May 2010
I was asked what Bluebell Wood meant to our family.
As a mum of 3 sons, Max being fit and well, Thomas 17 and needing 24 hour care, prone to fits and choking and having 3 respiratory arrests requiring life support and then having Sam who had a stroke and has Cerebral Palsy, learning difficulties and his autistic type behaviour, the hospice is now very important to us.
I try hard not to think about our life in the early years when all the distress, emotional chaos and feeling shattered beyond belief were part of our every waking hour which was all new to us.
Every parent dreams of this idyllic world of having a baby and everything being perfect. You fall in love, get married, devote all your love and attention at each other and suddenly your beautiful little baby is fighting for life with so many tubes and drugs and support, you can’t imagine he could possibly survive.
They told us children like Tom normally die in the first month of life. Thomas has been a real fighter, everyone describes him as so gentle and happy and he is completely surrounded by love. He needs 24 hour care and cannot do anything for himself. A slight temperature can throw his little world into chaos when he goes blue and starts fitting, the feeling of panic and anxiety is hard to describe when your child is struggling. This frightens everyone so much but then a little smile appears and a twinkle in his lovely eyes and you know he’s back. The worst thing is he can’t tell you how he’s feeling.
Sam is totally adorable. His cheeky face and quotations from films like Shrek and Wallace & Gromit make you want to kiss and squeeze him. He’s so funny and makes people laugh. The difficulty he has often causes frustration because the left side of his body was affected by a stroke and he cries until someone sorts it. He is at his happiest at home, talking non stop, asking the same questions over and over again. Sam is reluctant to change routine and anything different totally throw him. You can’t reason with him. He wakes very early and is still asking the same questions I know he knows the answer to at 11 o’clock at night. He’ll keep wandering in the bedroom with Woody and Buzz Lightyear tucked under his arm and gives a cheeky grin ‚lets have a cuddle mum’.
Our house is full of equipment and we are always gathering more. The washing machine never stops. Sam goes round the house turning all the TV’s and lights on.
At teatime Thomas eats soft food, Sam wants something different and it ends up being chaos.
When you’re just about to go out you lift Thomas in the car and then you realise even though you’ve just changed his nappy it needs doing again. Lifting, lifting, pulling, pulling, tugging, tugging – never ending. Have we got the medicines, spare clothes in case Sam in travel sick?
When the snow arrives all the children can’t wait to go sledging. I can’t wait to go sledging but disability and snow don’t go together. I won’t give in and I think we can do everything everyone else is doing but somehow it feels fifty times harder.
The chaos, exhaustion, emotional upset never ever goes away – we’ve just got used to it and have learnt how to smile and say everything is fine without going into details.
Our children, I believe, couldn’t be happier. They have all the love, care and support any child could wish for but what Bluebell Wood means to me is that light at the end of the tunnel, that feeling that they will catch me when I fall, that feeling when everything goes wrong they will help us make it better. They allow both me and my husband to be able to have some time to ourselves with no demands on us. As parent from the moment you have children your responsibilities are forever with them. When their needs are continuous in a 24/7 situation to have your responsibilities removed just for a few hours is what I crave for – Bluebell Wood helps me get this.
I’ve witnessed first hand what the staff of a children’s hospice do and no child with a life threatening or life limiting illness or their families should ever have to walk along the challenging path without holding their hand.