Just as the story goes for most of you, my initiation into the world of medical complexity happened slowly and all at once. In a moment everything changed, and how to diaper would never again be my biggest concern.
With that shift, the first thing this journey snatches from you is peace. The content snoring of your baby will never again elicit complete contentment; instead, the parade of concerns of why they could be sleeping so soundly tap dance across your mind. Peace is what’s missing.
I’m now three years and four months in, and while I don’t know any secrets to achieve complete and total peace on this restless journey, I have found “peace” in moments. There is peace to be found in many places.
First, find peace in yourself. You are the keeper of complexities. You juggle therapies, appointments, meds, treatments, cares, doctors, nurses, and the other items of life like a champ. You are their advocate. You were given this task and you are doing a great job. Find the peace in yourself and your abilities. I’m sure you’re juggling something right now that you never dreamed you’d be capable of. Hold onto the peace of that.
Second, find peace in those who support you on this journey. Your friend who doesn’t “get it” but is always there with wine, or your network of support, be it online or in person, from those who share your struggles. Find peace in the home nurse that you trust with your whole heart. Or the doctor who gave you her personal cell to text at any time, day or night. There is great peace to be found in these people. Their support may not lighten your load, but it will give you moments to breathe or cry or forget.
Third, find peace in where you are. Even if you are struggling, even if this moment is impossible, I’m certain there is peace to be found right where you are. Even if it’s a difficult point, I’m sure you are further than where you were yesterday or five weeks ago, or 12 months ago. Sometimes this life is about putting one foot in front of the other, and making that step can be one filled with peace. Peace in the moment in the form of progress, an inchstone, a milestone, even just the fact that it’s today. There is peace in that.
Fourth, and most importantly, find peace in your fighter, your medical mystery, the house of cards that you build and rebuild on a daily basis. Find peace in their smiles. Find peace in their incredible will. Find peace in their ability to rise above and overcome the grim odds, the horrible hurts, the difficult, the ugly, and the awful. Find peace in their tiny hands, their G-tubes, their stinky little feet. They look at you with contentment; they know that peace is found within your embrace. And therefore their gift is to return in kind.
It’s restless, it’s impossible, and ultimately the hardest fought battle on an emotional level that I’ve found on the rollercoaster to date. But there is peace. There can be peace. And through peace we can face what is yet to come.