I recently sent out a tweet about a conversation I had on the phone with a prominent news reporter here in Ireland. I did not, and I shall not, name this person. Why? Because of fear. Full stop. Fear of this person’s employer, the clout and backing this company has, and those involved with this company. So, let me just say this:

When speaking to a parent of a child with disabilities, one must ask themselves if the words they are going to use are appropriate, considerate and above all, compassionate.

I spent the last 2 days in hospital with my son Brendan Bjorn while he underwent a number of tests to determine if he is a safe candidate for a much needed spinal fusion. During those 2 days, I received a return call from the reporter in mentioned in the above tweet. I couldn’t take the call as I was talking to a nurse at the time. The next morning, I texted this reporter to explain why I couldn’t take the call and asked if I could be of assistance.

I received a reply text. No.

Four lengthy texts later, and this reporter had said what she wanted to say to me. Nowhere in these 4 lengthy texts was an apology. On the contrary, she was “astounded” at my voicemail to her in which I told her I was highly offended that, in discussing a possible film shoot of Brendan, she used the term “lump laying there” (as in, she didn’t want him to look like just a lump laying there in his bed).

Anyway…the texts went on to say how she has been nothing less than 100% compassionate in dealing “with people who are disadvantaged” in any manner; how I misrepresented everything she stands for; how I ascribed thoughts to her that she doesn’t hold; and how in her view, my misconstruing what she said was in turn offensive. So, let me put that out there for the record. Maybe I did? Maybe I was?

I then asked her if she was denying using the term “lump.” She said she didn’t remember every single word she used. Fair enough. I can accept that. And I nearly did, until this…

“…I think it’s important to portray them as real and sentient and cognitive in every report I’ve ever done…”

I sat there in the chair next to Brendan Bjorn’s hospital bed as the anger – and the hurt – welled up inside of me. Real??? I can assure you, my son is oh so very real. Sentient??? One look at any photo of my son (of which there are many public photos) with that amazing smile on his face and you can clearly see, he has feelings. HE’S A HUMAN BEING, FOR GOD’S SAKE! And cognitive??? Lord above, do I need to speak to this, too? Of course he is “cognitive” although his cognition level is not that of a typical 13 year old boy.

Now, I write this particular blog not to be hurtful to her, as she has clearly told me that I have been. If indeed I have been, my apologies, truly. I stopped and asked myself the title of this blog…To speak or not to speak? I choose to speak. Why? Because I want people to understand, to learn, and to gain even an ounce more compassion when it comes to those of us on this journey with a child who is disabled and/or has a life limiting condition. That is all. That is why. And so, I hope those of you reading this will come away with a bit more of those qualities, because we parents need all the support we can get. The last thing we need is to have our child described in such ways, especially when the person using those words knows you are sitting in a hospital room with your child.

Words do indeed matter. Please, choose them carefully.