I am thankful


We are holding out for a quiet, Christmas. A happy one, spent with those that mean so very much to us. We learn so often in this life that we should make the most of every single moment we get. That doesn’t necessarily mean we need to be taking part in extreme sport, travelling around the world, or going on wild, lavish holidays, although of course, these can be wonderful, fulfilling things to do.
To me, it is ever more apparent that cherishing each moment and living it to the full is as simple as just being with those you love, doing the things that are so easily overlooked and undervalued. Snuggled in pjs, reading a book with your children, or going on a crisp winter walk and crunching the leaves underfoot. Cuddling, play fighting, dancing around in your crackers if the mood takes you. Just being at one with yourself and with those around you, appreciating how absolutely lucky you are to have them, to be you.
The last couple of months have been particularly draining for us. Not just the emotional pain of living with Alexander’s disease, knowing it is consuming every morsel of our lives, that the worst is yet to come. But, also the constant pressure of attempting to keep a balance between peace and joy for Corry, also for us as a whole, alongside my desperation at trying to keep him here with us. The physicality of having to meet all the appointment times, the check ups and therapy sessions, whilst making sure that the rest of our needs are still being met is at times impossible and we have therefor gone without. Be it each other’s comfort, a nighttime cuddle, clubs that we enjoy, time out with friends. It is very easy to be dragged down by it all. To feel alone. To want to give up.
But, in these last two dark and difficult months, our family and our friends, other people who I had no idea that cared, some whom we have never even met, have shone from out of nowhere to support us. To show us that love and hope is here. They have offered so much kindness and comfort. We have received help with daily errands, offers to fundraise. People wanting to give and do things for our children to attempt to make this a little more bearable for them, to help build furniture for us to aid Corry in being mobile. To give us words to ease our sadness and to make me see how much I have to be thankful for.
For all of you, I am so thankful.
It is truely heartwarming to know that we are not alone in this. I have a new found strength within me and a will to fight this with every ounce I have. I am not fighting it by myself. I have a force behind me. Thank You.
Enjoy this festive period, all. Enjoy each other. Be at ease with what you already have. Notice the goodness in those around you, and in yourself. Be happy.


The diagnosis

An MRI scan picked up abnormalities in Corry’s brain just shy of his 2nd birthday. I knew then that whatever this was, it would not be good. I was given a year to contemplate, a year to think things through, a year to come to terms with what could be, but a year later, recieving his diagnosis of Alexander’s disease, I broke and have been broken ever since.
It’s easy to get sucked into a diagnosis. We spent the first 3 years of Corry’s life searching for answers, a name to work with, to enable us to understand, something to fix. But it didn’t work out that way for us. The answers we thought we would find cannot be found. So little is understood about Axd, research is limited and other than therapeutic support, we don’t have much else to work with.
I have been with my boy through his daily struggle to gain the basic abilities we all take for granted, to now face watching them be stripped away from him in the cruelest of ways.
I am frightened of what is to come, of what it will do to him, to me and to our family. But, despite this, I have hope. I hope he stays happy. I hope he remains strong. I hope he continues to find joy in each day and see the beauty around him. I hope he feels how much I love him, and can understand how much happiness he gives me. I hope he doesn’t see how painful I really feel. I hope for a cure. My lovely, beautiful, sweet boy.