I wonder about so many things when it comes to my son, Brendan Bjorn.
I wish countless wishes for him, some of which I’ll never know if they come true.
And I hope constantly, relentlessly, often to the point of mental and spiritual exhaustion.
This is a glimpse into the journey with a child who has severe disability and life-limiting illness…
I wonder if you’re content, and maybe even happy, to be restricted to just watching your younger brother and his friends play with the reckless abandon that comes with being little boys. I see you smiling. I hear you laughing. I hope you’re not aching to join in with them in the play you’ve never known. I wish more than anything that you could. I wish I could heal you with some miraculous touch.
I wonder if when you’re in a seizure, you are frightened, feeling alone and as out of control as your own body so cruelly is as it convulses non-stop. I hope you’re not afraid. I hope you know I am right next to you, holding you, loving you, protecting you with all that I am. I wish you never had a seizure. I wish I could take the epilepsy away. And I wish it didn’t steal what few abilities you used to have…but it did.
I wonder if you miss the experience of eating food, chewing and tasting your favourite flavours long since taken away and replaced by a tube inserted in your stomach. I see you open your mouth once in awhile when I am eating and I wonder. I hope it doesn’t upset you. I hope you aren’t hungry and I can’t tell. I wish I could give you a plate full of food and see you gulp it down in the rush to get outside and play. I wish I could yell at you to slow down. I wish you could chew…and I wish you could swallow it without the dangers of aspiration.
I wonder if you have questions, thoughts, feelings that you cannot express because you cannot speak or write or communicate in any form beyond what I can read on your handsome face. I hope I am giving you what you want, what you need, what you desire. I wish I could read your mind. I wish I could know just how you feel.
I wonder if you realise the depth of what you have brought to my life…the love, the lessons, the inspiration, the joy, and even the heartache. I wonder if you know. I hope that you do. And I hope that you know how you have touched so many lives, not just my own, and for that we will never be the same. We have been blessed by you. I wish I could give to you even half of what you have given to me.
And I wonder if you will wait for me to be at your side when it comes time for you to fly, my precious angel boy. Will you, in your understanding of life that the rest of us can’t even see or grasp, know that my heart would be forever shattered into a million pieces unable to be put back together if I can’t hold you in my arms as you release your soul to fly. I hope you will wait for me to say goodbye…to set you free.
I wish my wishes could come true…