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When Parenting a Medically Complex Child Affects Your Own Health

I saw a new doctor today — not for my medically complex 6-year old, but for me. I’ve been having some unexplainable symptoms (rashes, fatigue and headache) that I’m not so sure are physical in nature. What I mean by this is that I’ve been living in a variable “fight mode” for the past six years now. At least that’s what my doctor just told me.

Let me give you a little background. Six years ago I gave birth to my miracle child — my daughter, Olivia — and have since been through experiences chock-full of worry, devastation, grief… and also experiences full of immeasurable relief and joy. More specifically, I’ve been through three open-heart surgeries, countless cardiac catheterizations, procedures, diagnoses, specialists, therapies, medications and miracles galore. I can’t recall the amount of times my husband and I have sat in agonizing silence waiting for a procedure or surgery to end, the amount of times we’ve walked our daughter to the dreaded “red line” or the amount of times we’ve co-existed in a hospital. The latter alone is enough to cause PTSD for one’s entire life. Through all of this, I’ve evolved into the strong, in-control, I-can-handle-it-all-because-I-have-to mom, and let me tell you, it’s exhausting.

I, too, suffer from the dissolution of friendships (and relationships in general) because I have trouble living in that world. A world full of seemingly happy experiences that don’t involve catastrophic events, the ones that bring your world crashing down in a matter of seconds. Of course I don’t blame others for what has happened to me. But as many of us mothers of medically complex children know, the difficulty is there. I have trouble relating to others as I did before, plain and simple. I long to talk about “normal” things, and I try to. But I’m not sure I’m doing it the right way. I’m virtually faking the person I want to be, because I know people would have a hard time staying friends with the person my life has made me. 

So my doctor takes note of all of this in his initial assessment, and he tells me something I’ll never forget:  “You can’t live in this fight mode forever… it will break you down completely, and then what will your daughter have?” I guess I knew deep down that living like this couldn’t last forever, but I didn’t know I needed to change it to go forward now. It’s been all-consuming waiting for the ball to drop, for my daughter to become significantly ill, for middle-of-the-night ER trips, for one of her specialists to give me an ill-fated diagnosis. It’s unbelievably hard to have your emotional “ baseline” elevated so high that you can’t see down anymore. It becomes your new normal. But I’m slowly learning it isn’t healthy.

I think my physical symptoms really began during a period of a couple months when life finally settled down, and we were able to enjoy the everyday things. I like this place. Now that we’re heading back into cold and flu season, I know what can happen and how quickly my world can change. But I’m also learning what can’t happen: I can’t live in this fight mode any longer. It’s draining me, the person I am, my ability to relate to others and most importantly, my ability to care for my daughter, my family and myself.

I don’t know exactly how to get out of this, but I suppose it’s time to put the “fight” behind me, and welcome the joy that occasionally seeps in. It’s time.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] 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.