30Jun08 - House Adaptions

Back in November I wrote a blog about adaptions. At the time the idea of altering our home was an uncomfortable one. It forced me to confront future realities regarding quality of life and how we are going to manage Lucy as she grows. I also feared that the adaptions would mean turning part of our family home into a hospital ward with all the equipment that Lucy will need. However I have had plenty of time to get used to the idea since then. It is clear to me now that it is essential as it won't be too long before handling Lucy starts to become difficult. Dawn is already finding it difficult to bath her.So although it is still difficult emotionally to accept that Lucy needs a "Special" bedroom and "Special" equipment there really is no other option so we decided that we would make sure that the room is as pretty and girly as we can make it. Lucy will still have a proper bedroom rather than a ward. We have already chosen curtains and bedding and are planning to use some really good sensory equipment as well. Watch this space!

It took two weekends and a skip to clear the junk out of our house and move all Joshua's toys out of what was his playroom. It is sad that he is losing that space. Finally on Sunday afternoon the room was completely bare and ready for the builders to start this morning.Joshua was putting a brave face on this morning but I could tell that he too is sad that the playroom he has had for nearly five years is going. I am slightly worried that not having this room on the middle floor of the house will drive him upstairs into his bedroom but then I guess he is starting to reach that age anyway.After the first day we can already get an idea of size and it is going to be cozy although we always knew it would be. The most striking change for me was the cut out in the ceiling where the tracked hoist is going to be fitted. The room is split into a shower room at one end and a bedroom at the other.The plumber arrives tomorrow to start on the shower room basin and shower tray. Overall the whole job is going to take two to three weeks at the end of which we will have to contemplate moving Lucy downstairs. She currently sleeps in the bedroom right next to ours so this will be quite a difficult step.

19Jun08 - Is it really?

There are certain phrases that people use to explain their lives and why things turn out the way they do; "Everything happens for a reason", What will be will be" and "It is meant to be". I have been one of those people most of my life. My philosophy was always, "everything will work out in the end". I believed that, all the time Lucy was in hospital and unfortunately for the first time in my life it was not true. I can even remember relying on this in the delivery suite when everything was going wrong. I have had to re-evaluate my outlook and curb my optimism. I can appreciate better that when you open your eyes to the many terrible things that happen in life, the outcome is not always for the best, things don't always work out. You only have to watch the news or look around, bad things are happening all the time and there is often no sensible reason. I know that there are so many positives about Lucy's life and I also know how she is changing peoples perception and experience. In her own way she is educating the world and illustrating through her very existence that disability is not to be ridiculed but to be admired. She is also a beautiful little four year old girl who brings a lot of happiness. However I still struggle with my old normal self. The same old questions are ever present. Why...., why....., why.....? How could the outcome have been different? By asking these questions am I disrespecting disability and its origins? I guess what I battle with most is faith. Lucy has undoubtedly got a big part to play in our society and nobody could convince me otherwise. I would not be without her, she is such a massive part of my life and I love her more than anything. I just can't help feeling how unfair it is that she faces the challenges that she does. There are so many unanswered questions and no matter what happens they will always remain unanswered. Is it fair that she can't talk, is it right that she can't run around and play with her three year old cousin, is it ok that we can't help drawing comparisons between how she is and how she should be? The one question that concerns me more than any other is this, "Will I be asking these questions until I die?" The future is not somewhere that holds hope and expectation. It is a place very much like now, no changes, the same questions and no prospect of improvement. Motivating yourself to be different and to alter your outlook is a difficult thing.
All I know is that Lucy is my daughter and I will be there for her for as long as she needs me regardless of my own personal failings. Lucy plays a central role in our family almost by default but at the same time she is treated as normally as possible. The fact that life is different is circumstantial and I know we share this life with so many other people. I think that I will always feel that she deserved so much more and that we are all missing out in different ways. Lucy is amazing just as she is and will always carry on regardless. Maybe I need to take a leaf out of her book and open my eyes more to the different world around me. I simply can't help picturing what she would have been like, how she would have sounded and how nice it would have been to see her running around and talking. The question "Why" has no answer.

11Jun08 - A Life of Love

I often wonder who reads my rambling commentary and how it is received. It is a strange feeling knowing that Lucy's life and my own personal experience of it is available for the whole world to read about. At times it is an uncomfortable feeling which makes me question what I am doing but then every so often I get feedback which reassures me that Lucy's story should continue to be told.

I received this poem from a reader in America.

A Life Of Love
Written for Lucy May & Family

There is no handicap in anything that loves
they say what we do below, effects the stars above
sometimes life’s a test, sometimes it’s gentle as a dove
but there is no handicap within our acts of love

For what we see within is the way things truly are
we see the light above, but it’s the fire of the stars
when we hold another’s hand it’s the touching of the heart
there is no handicap when love holds all the parts

Yes we can learn to love from those who need us here
because maybe we need them to keep our life’s perspective clear
and only by giving of ourselves do we understand the lights above
handicap is an illusion within the perfect heart that loves

We can’t know the reason for all of this life’s pain
or why we are the ones to hold the burden of hardships reign
but we must remember, on earth, as up above
there is no handicap when your life’s a life a love
within our every action we create worlds dreamed of
because there is no handicap in a life that’s full of love

Remember, my friends, we see people by the way WE ARE not the way THEY ARE

written by Eric Sander Kingston

02Jun08 - Lucy in Scotland

We have just got back from a weeks holiday in Scotland. A week without a mobile phone signal or the internet which made a nice change. It was a great time for Lucy because there were nineteen of us including eight children which meant that there was usually something going on or somebody playing with her. The girls especially spent a lot of time sitting and cuddling Lucy. Even Grandad got in on the act.It also gave us more of a break than we would have had if we were on our own which worked out well. Lucy was struggling with yet another wet cough for most of the week which was unfortunate. She was also on yet another dose of antibiotics which didn't really seem to do much good although she is getting over it now. Not wishing to risk Lucy's cough developing into something more serious we were a little restricted as to taking Lucy out. The cold and the wet seem to have an adverse affect so we kept her in and wrapped up.Maybe we were a little over cautious but better safe than sorry. When the sun did come out Lucy enjoyed being pushed down the road listening to the birds and taking in the Sottish scenery. Not too sure what the wildlife made of the little pink four wheeled cough that disturbed their peace though.Joshua had a good time too. It was nice for him to have all his cousins to play with and we actually saw very little of him. We did manage to persuade him to go out with us a couple of times but he mostly preferred messing around at the house with the other kids.Lucy still got some quality time with her big brother and without him around I guess she would not get to do half the things she does.We also passed another major milestone while we were on holiday, Lucy had her fourth birthday. We had a little party with all the kids and Lucy tucked in to jelly and angel delight.Lucy's birthdays always bring back lot of memories but at the same time they are a celebration of her life and how much she has overcome. I think she knew it was a special occasion and enjoyed opening all her presents. With all the new clothes she got she will be the best dressed little girl for a long time.Lucy's birthday was a nice way to end the week but it all passed a little too quickly. On the way home Joshua wanted to see Hadrian's Wall so we made a slight detour via Housteads. It was a very strenuous push up to the roman fort but Lucy didn't mind and the sun was shining.The Romans might have built roads and sewers and brought lots of other technological advances but they definitely didn't consider disabled access! All the same we got to the top eventually and Lucy found a new hospital that she hadn't been to yet.Joshua loved it, standing on the wall imagining hoards of attacking barbarians.Lucy was happy just to take in the history and the views.The push back to the car was more of a free wheel but I am glad she is not much heavier.Well that was Scotland, a great week, wish it had been two weeks but then who doesn't say that after a good holiday!