It’s a complicated thing, this journey with a child who has severe disabilities and a life-limiting illness. After 12 years, I’ve come to the solid conclusion that no matter how “outsiders” try to understand, they simply cannot. If you haven’t lived 24/7/365 in the house of someone on this journey, than you won’t understand. At least not fully. Friends, family, even new life partners that come in on the journey midstream, look in from the outside. They won’t fully understand because it doesn’t impact every minute of their lives like it does the one who is the full time, constant, carer. In fact, I think for the most part, it is still the mothers of these precious earth angels that truly, intimately, understand what this life entails. And, what it does to us as individuals, as a woman, as the person we used to be but now, often desperately, try to find glimpses of as we row our boat against the current. It is in this complicated, unspoken, and often tenuous understanding that we form a bond of solidarity which gives us strength and support that we quite frankly cannot find elsewhere…because again, no one else truly understands.
With solidarity we can lift each other up, ready to carry on another day when we ourselves don’t think we can.
As I lay in bed last night, it dawned on me that I didn’t go anywhere last week on my own, bar the 5 minute walk from my house to my youngest son’s school. Short of that, I always had one of my two sons with me. Now having said that, a level of guilt creeps in as I know far too many fellow mums who have lost their angel, as I will someday mine, and I know they would give anything to spend even another minute with their child. I even think that when it is my turn on this journey to be in their shoes, I will look back and feel badly toward myself for wishing I had those moments where I could just have a bit of peaceful solitude. I am sorry – now and in advance – for wishing this wish of even just an afternoon of nothingness, peace, quiet, beautiful solitude. Dare I even use the word freedom?
In those much needed but all too rare moments of solitude, we can release, recenter, recharge, and simply BE.
Yesterday, while out at the grocery store with my earth angel Brendan Bjorn, I made a quick stop at the bicycle shop. For 5 euros, I bought myself a bit of joy. I bought myself a fun reminder of when life was simpler. I bought myself that feeling of childhood freedom that comes with having nothing heavy on your heart and mind, only the feel of the wind on your face as you coast downhill on your bike. For 5 euros, I bought the most special-to-me purple and silver handlebar tassels…and with a giggle I put them on my bike and smiled, content in a way you wouldn’t understand unless you know what it is like to ache for that feeling of gently comforting solitude you get when, finally, you have a few minutes alone not having to hold your child’s fragile life constantly in your hands.
We don’t get enough of it.
We need more of it.
We need to feel the wind on our face as we coast downhill, smiling in abandon in that fleeting moment of freedom…