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Why I Talk About the 'Taboos' of My Son's Life-Limiting Illness

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A couple of weeks ago, I had one of those all too seldom opportunities to sit down with a fellow special needs mom and enjoy a cup of tea and a chat. Our conversation, as it often does, found its way to what we as special needs parents talk about together that we can’t (or simply don’t) talk about with others. It is cathartic to be free to “talk taboo” — and to talk about talking about “taboo” subjects. Yeah, we really do that when we get together! Order a hot chai latte, a blueberry muffin, grab a seat and away we go. You would probably be astounded at the subjects we can cover in under 15 minutes. We can go from birth to death to funeral arrangements in under 60 seconds. It’s one of our superpowers.

As we sat there, the warm scent of the spices wafting up from my chai latte, I told her I finally wrote down my wishes for my son Brendan on the DNR form. That’s “Do Not Resuscitate,” for those unfamiliar with the lingo of our journey. That form is now in the hands of my son’s life-limiting illness nurse and his pediatrician, being worked into a legal document that will enable my wishes to be heard at “that” moment, in case I am on the figurative and/or literal floor unable to speak. I gave the form to his nurse last week, at which time she said to me, “Tracy, you realize that if you aren’t present when Brendan goes into a medical crisis, they may not be able to put him on life support until you get there to say goodbye, right?” Yes. Of course I said yes, I realize that — but if, just if — then please have them do that so I can be there to let him go.

“But there are no guarantees…” Yes. Again, yes, I know, all too well.

So I took another sip of my chai latte, and then I said how I plan to have my son cremated, and then one day, when it is my turn, buried with me. And there it is. “Talking taboo.” My living, loving, amazing, precious angel of a son, and I just said what I have planned when he transitions from this life.

Why am I writing this, you may ask? Because, as with any of my writings, it is to enlighten those not on this journey and to give a voice for those on this journey who may be unable to find the words. And selfishly, there is that cathartic nature to writing, just as mentioned above when talking to a friend. I find putting such “taboo” thoughts — realities — into words, be they vocalized or written, helps to release those very thoughts from our ever-heavy hearts: I’ve said it. I’ve written it. Now, I can release it.

Well, maybe not release it fully. But it does help.

We need to talk about what is “taboo.” Otherwise, it can slap us in the face, us unprepared, caught off guard, having never allowed ourselves the liberty to mention the unmentionable. I feel you should allow it, because there are times during this journey that can bring us parents to our knees. I shared one of those unmentionable times with my son’s nurse last week. I talked “taboo” as I told her there have been a few times when I’ve held my son in my arms — him laying in a hospital bed with tubes and mask and lines of all sorts coming from his body — and I’ve whispered in his ear, “Angel, if you want to go, you can go. I’ll be OK,” as the tears streamed down my face (as they are now as I type this, in fact). “Thank you for teaching me what love is. Let go if you want, if it is your time.” But it wasn’t his time. So know this, that those of us in these shoes may have said these words to our very own children who have a life-limiting illness.

We may have said it’s OK to fly; if it’s time, fly. And the fact we may have said it is OK — it truly is OK.

It’s not “taboo.” I believe it is loving unconditionally.

boy in hospital bed
Tracy’s son, Brendan.

Follow this journey on Transitioning Angels.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: March 12, 2016
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