Dirty (and Not-So-Dirty) Secrets of Parents of Kids With Life-Limiting Illness

It has been 11 years now on this journey with my son, Brendan Bjorn, my angel boy who has a life-limiting illness. But to be clear, those aren’t your typical 11 years. You see, when you are a parent to a child with a life-limiting illness, each year is multiplied in some mystical, cosmic way due to the many challenging experiences usually happening on a weekly, if not daily, basis. Those often unimaginable trials by fire that harden our resolve in ways not faced by parents of healthy children.

I want to reveal some secrets about us parents who have a child with a life-limiting illness. This won’t be news to us, but it will hopefully reveal some of our “secrets” to you, our family and friends, so you can understand where we’re coming from a little bit better. Maybe. Just maybe.

Personally speaking, I’m an observer. I love to watch people, study their reactions, read their body language and use empathy to understand their place in the world. My professional background is that of a Master’s-level mental health counselor specializing in child and family work. Enter then being thrust into this journey with Brendan and 11 years of those trials by fire. Result? Countless lessons learned, and the hope that sharing those lessons will help others along the way.

This is where some of our secrets come into play.

Secret #1: Many of us wrestle with depression and anxiety. And I’m not talking about being disappointed that the Irish rugby team lost last Sunday. I’m talking about hard, cold, all too real depression where you don’t want to get out of bed in the morning and face another day. I’m talking about anxiety where you can’t catch your breath or when you lose your temper at anyone for saying the most innocent of comments you just happen to have taken up wrong. We need you to know this is real. We probably won’t tell you about it, and we may not even admit it to other parents in our shoes, let alone to our partners. But it’s real… and we need your help at times.

Secret #2: Many of us might be on antidepressant medication. It’s OK. We aren’t “crazy” or “mad” or “going to go off the deep end.” We are merely trying to hold it together in the face of knowing we will one day be burying our own child. Yeah, that is hard to read. Trust me, it’s damn hard to type as well. But at the end of the day, it is the truth. We need you to remember that is our journey and our daily world.

Secret #3: There have been studies done that suggest parents of children with special needs might experience what’s described in psychological diagnostic terms as PTSD. Can you imagine? The same symptoms as many soldiers who come home from a war zone. This is actually a “secret” fact that many parents on this journey haven’t even heard, but hopefully once they have, there will be a sense of relief, as in, “Wow, OK, so that’s why I feel and/or act the way I do at times.” We can have nightmares, panic attacks, bouts of sudden anger, you name it. It is very real. (And here is where I strongly encourage any of you experiencing any of these concerns to please seek out professional help in your area. Reach out for help, please. There is no shame, and it is no sign of weakness, to admit you need a hand. This is a hard, heartbreaking journey we are on at times.)

Secret #4: Sometimes the way we deal with all of the above mentioned secrets is to comfort eat. Yeah, that’s right, bring on the most delectable comfort food you can dream of; that is all too often our way to unwind. Well, that and wine. We seem to keep the wine industry afloat. Did I mention coffee yet? Just keep a steady supply of both going. Please and thank you.

I will end with this last one because after all, I can’t be divulging all of our secrets at once, now can I?

Secret #5: Sometimes we talk too much once we get the ear of an adult who is a non-medical professional. What a treat that can be! Other times we crack jokes at inappropriate times. And sometimes those jokes are a bit off-color. Let us! Why? Because we can go days, literally, of not speaking to another adult other than the aforementioned medical professionals. And that, my friends, is not pleasant.

So, bring on the wine, coffee, fantastic scrumptious food — and without mention of calories, please. A side of antidepressants if required. And loads and loads of understanding, hugs, and off-color jokes.

Follow this journey on Transitioning Angels.

The Mighty is asking the following: What’s one secret or truth you wish you could tell others about your experience with disability, disease or illness? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.