Declans Diary August 2012

Six years ago today was a bright, hot, hopeful day. I had spent the weekend in the paddling pool with Declan and watching England get beat by Portugal in the 2006 world cup, again by penalties. During that sunny weekend I was aware that Declan had had some blood tests on the Friday at the LRI, as finally doctors were listening that Declan actually had more than just dyspraxia. His enlarged calves, all the falls, yet amazing hand eye coordination, proved to me that this was not a coordination problem. What I wasn’t aware as I drove myself, Declan and my mum to the hospital for the results, was that my life would then take a different road forever. It’s funny how days like that stick in your head like they were yesterday, I remember the white long skirt I was wearing and Declan showing off his, what we thought were muscular legs in a navy pair of shorts, where I sat in the waiting room, and how I felt when I was told that Declan had Duchenne Muscular Dystrophy and what the condition would do to his body, starting with his legs, which were already showing weakness, his upper body and his organs. I remember going into the cafe after being told this news and trying to keep the tears at bay, whilst Declan told me what he would like to drink. I went outside to ring my dad and a close friend to tell them the news. How I drove home I am unsure. The next few days however are a total blur. Six years on and looking back at the rollercoaster that is our life, brings both fond and painful memories. The day that Declan walked me down the aisle will always be one of my proudest, happiest moments of my life, flying to Australia to fulfil Declan’s wish of going to Steve Irwins zoo was also a very fond memory that will stay with me forever. The five house moves, two miscarriages, Declan going off his feet, Declan’s surgery, giving birth to a sleeping baby, my marriage splitting up and watching the person I love most getting weaker and weaker by the day has been very painful. I’ve had people say you could write a story on my life, maybe they’re right. I would love to say that six years down the line things have settled down, but they haven’t. I have been fighting since November to make the house safe for Declan. Now that he has spinal rods he cannot be carried and due to the two turns on our stair case a stretcher couldn’t be used on the two ocassions Declan has needed to go into hospital. The risks of Declan not being able to be taken down the stairs in the event of a fire or more likely medical emergency could be life or death. The only sensible option is to have a down stairs bedroom for him but due to funding, every obstacle has been put in our way for this. We have had to try evac chairs, evac beds, several meetings as to why they don’t work but as of yet the outcome is simply more meetings.

A close friend who I have met at rainbows put into words the way I feel about my life, ‘we walk down a parallel path to everyone else, we look after our children like everyone else but in very different ways and every now and again we take a little walk on their path, we go to the gym, meet up for a coffee, but then quickly go back to our path of hospital appointments, professionals, painkillers, physio and equipment. As it is now all we know, the other path is quite scary and we know one day with a blink of an eye we will be thrust back into it’.

Mine and Declan’s life is very different from the ‘norm’, he relies on me for all his personal and emotional care and thankfully this has led to us having an incredible bond. My life is different and most of the time very tiring and stressful but seeing Declan’s smiley face enriches my life every day.

I pray that he is still here in another six years and I can continue to write about his story.

Alex

Following on from Declan’s grandmother Kate’s article last month, if you haven’t had time to sign the petition yet, then please do so as soon as possible. They need 100,000 signatures to get the attention of the government. Please ask your family and friends to find the link and join all those who want to put an end to Duchennes. The petition can be found at http://epetitions.direct.gov.uk/petitions/14427
A million thanks to one and all.