When I was a little girl, I used to dream about how my life would look when I grew up. I would have a house, 2 kids, live in the mountains in a big log house on acres of land that had a stream running through it. I would have horses and dogs and want for nothing. I would go on hikes in the hills with my children. I would be a writer living a peaceful life in the quiet serenity tucked away amongst the tall pines. I would be content…even blissful…in this simplistic life.
I’ve learned on this journey with a child who has a life-limiting condition and many medical complexities, that we must learn to dream new dreams. At the very least, to modify those dreams. And so, here I sit, daydreaming about what I would do with even a fraction of that lottery win (that is, if I were to ever win it) or with say a tiny sliver of the 13 Billion euro the EU just today declared Apple must pay in taxes that Ireland neglected to charge them. Ahhh…what I would do. The mansion…the Jaguar…the holidays abroad…
What would I do with even €500,00 if, by some miracle from above, it was handed to me today? Here’s what…
I would buy a house suitable for my son Brendan Bjorn – maybe even that one currently for sale around the corner in the tiny village I live in. You see, it has hallways wider than I’ve ever seen in a house before. Yeah, I’m excited by hallways! Do you know how easy it would be to push Brendan in his wheelchair down that hallway? To turn his chair into his bedroom or the bathroom without banging into the walls and doorways? To be able to use a lift system finally because he would fit in that width without hitting his head on the walls to either side? The log house in the mountains from my childhood dreams wouldn’t suit him. This is where dreaming new dreams comes into play. It’s not about me anymore.
It is about making his short life the very best it can be.
And if I bought a house, rather than rent as we currently do, I could have the bathroom modified into a wet room so that a proper bath table could be used. I’d buy that too. And, owning a house, I could also get a ceiling hoist system put in so I could easily transfer Brendan from bed to bath to chair. At the moment, I carry him from place to place, all 33 kilos of his entirely flaccid body that cannot even lift his beautiful head to help me. At the moment, he lays in an old bath chair that sits precariously within the bathtub, still too low to save my back with degenerating discs from hurting as I wash his fragile body. I would put in a permanent ramp system, stable and secure, to finally wheel him in from the outside into the home with a smooth, easy transition. I would stock up on supplies that he needs such as baby wipes and disposable incontinence sheets. And if there was enough money left over, I would add a sunroom, with windows on all sides so he could look out at the trees blowing in the wind. That is one of his favourite things in the world to do. I could give that to him.
I would buy a new-to-me, reliable and definitely automatic transmission wheelchair accessible van. The old one I have now has more dash lights going off in it than a Christmas tree. It’s also a manual transmission and my left foot is in need of surgery so the pain every time I drive is, let’s just say, not very fun. (Side note: the surgery is on hold because who can take 2 to 3 months to recover when being a full time carer to a severely disabled child? Right. It’s just not going to happen.)
I would get a puppy for my other son, who deserves the world for all he sacrifices. And I’d get the laptop he’s been asking for these past couple of years. Ok, also throw in an X-box game or two, for good measure.
And finally, I would start a retirement fund. A safety net. A savings account that would give me the peace of mind knowing that I won’t end up on the street in my old age (yes this is a real fear, so don’t discount it. Families in my shoes often struggle financially, having had to cash in any retirement funds and savings for their child’s special care) and so that Declan will be able to go to University and make a good life for himself when he grows up.
We do learn to dream new dreams. When you know you are going to lose your child some day, you learn that dreams can be illusive, liquid, changing, and fleeting. Your dreams become more realistic, shall we say. More down to earth. I used to dream many things, including that my son would be miraculously healed. Again, that simply is not the reality of this journey. I have reluctantly, but fully, accepted that reality. So what I dream now is for the best life for my sons, and for those few material objects that will allow me to care for Brendan, actually for both of them, for as long as I can.
So, I don’t need a mansion. I don’t want a Jaguar. The other 99% can keep those things.
I’ll take the bungalow and the van.