I’ve had people ask me why I don’t give up – Give up advocating for disability and carer rights. Give up pointing out the failings of the government when it comes to those rights. Give up fighting for suitable housing so I can properly care for my son. Give up going public about our struggles on this journey. And, I’ve even had people ask me why I don’t give up Brendan Bjorn.
I don’t give up because if I do, who will take my place?
I know that some people get tired of my posts about disability on social media. I understand that, although I think they should ask themselves why they get tired of it. Why don’t I give up talking about it? Because the fact is – you or someone you know, maybe even someone you love with all of your heart, is or will become disabled at some point in your life. I think at the core of people’s avoidance of this subject is fear. Fear that *it* could happen to them, to their child, or to a loved one. Trust me, I never could have dreamt I’d be on this path today…but here I am.
So to those of you who may have issue supporting the disability rights cause, I ask you to consider what I’ve just said and then do all you can to assure reforms are made sooner rather than later. This isn’t just my future. It’s yours, too.
In 2007, I established the CMV Foundation (dissolved as of 2015) because I couldn’t give up my desire to have the world know about CMV and to protect their unborn babies. I was filled with rage at the specialists not warning me about CMV. I was consumed with grief and heartbreak over the news that my perfectly healthy son was, in fact, not. Honestly, if I didn’t start the charity and become such a passionate advocate, I think I would have imploded with all of the rage, grief and heartbreak.
And as I sit here today, not much has changed in that regard.
I can’t give up my fight for housing, because this is the last dream I can make come true for my precious son: To provide him with a safe, warm, dry, suitable home in which he will spend his remaining years with me and his little brother, creating memories that will last us through our lifetimes. So, I can’t give up. I won’t give up, because he deserves this, at the very least.
It was this week 5 years ago that I took Brendan and Declan on a trip to Universal Studios in Florida. I looked at the photos on Facebook this morning as they popped up to remind me of the trip, and I cried. Oh, how I cried bittersweet tears as I realise Brendan will never travel outside of Ireland again, his body having grown far too fragile for such adventures.
But, it does my heart good to know I took him on as many adventures as I could!
Disney World and Universal Studios. Up into the mountains and to oceans and lakes. He’s seen Old Faithful blow, fireworks light up the sky and felt snow fall on his face. He’s been fishing and has flown a kite. He’s travelled in airplanes across America and Ireland and the UK. He has met a President and celebrities and has been on TV across America – and his share of media here in Ireland, too!
I am truly happy he got to experience those things while he could.
I just hope I’ve given him enough adventures to fill his lifetime.
So, I can’t give up. The fight continues, not just for our own personal journey and for what Brendan Bjorn so desperately requires, but it also continues for me and for you…all of you I don’t even know…because I will be disabled one day. And you just might be, too. I want it to be better now, for Brendan, and for us whenever we may need it to be.
Life isn’t always what we dream it to be, but so long as we do our best to make it all it can be for those we love, then we can dream new dreams.