As It Should Be

The dark of the room matched the black of the ultrasound screen as I watched white lines flutter and join, flutter and join, the movement changing every time the tech changed the position of the probe on my boy’s small chest. Slowly, I looked down at his hand, held tightly in mine, processing the questions from the team: “Has he fainted? Have his lips turned blue? Does he complain of pain in his chest?”

Before we started the day, Chase told me he wasn’t worried, but in the moment, he wouldn’t let go of my hand, he refused to eat dinner the night before, and as I woke him from a sound sleep, he wouldn’t stop repeating: “You need to reschedule this appointment”. Fear has so many facets to it, right, dear ones?

The tests were finally completed and the consultation too, and when it was all over, we learned that Chase’s heart was as strong as it could possibly be. In fact, his rhythms neared normal – one of the very few times in Chase’s life that normal has been applied to him. 

In the small generic exam room, I sat in the chair across from the cardiologist and accepted her words. I was relieved, but I felt static too… a sort of nothingness. And as I looked at Chase, seated on the edge of the exam table, he wore a deeply tired expression even though he’d just been informed that the doctors were pleased with his stability. 

Later, in the car with Chase asleep over his arm rest, I replayed that moment in the room – the total lack of joy at seemingly good news.

Are we burned out on grace? Are we so weary that good things have ceased to feel like a gift? Is this what happens after over a decade in the fight?

Perhaps, and yet, dear ones, I don’t think it’s that simple. You see, yes, Chase’s heart tests were stable. In fact, he will receive a much-needed cardiology break as he will go several months before he needs to be rechecked – which is everything we could hope for! But after that piece of news came the reminder words: The good news we received can’t be ensured for any length of time because they just don’t know what comes next for Chase.

So despite the flutter and join on the ultrasound; despite the blood going where blood goes in the timing needed to reach the whole body… well, Chase’s heart is at risk now and always because, as the team reminded us: Chase himself is high risk. 

Stable, but don’t forget: high risk; no future stability guaranteed. 

Sitting with those words and their reality and various possibilities feels like watching a beautiful sunny sky to the east even as you feel a dark storm rolling up behind you from the west. You know what I’m talking about, friends? It’s the kind of storm you feel on the skin of your back even as the sun is warm on your face. …and all you can do is wait for it to hit you.

So where do we go from here?

The reality is that we can’t sit with the high risk words at the front of our brains and hearts every day, or we’d never resurface. We would truly and completely burn out. But the heaviness is a very real component of every appointment and I believe it’s because we’re reminded of everything that we wish never happened…everything we wish never existed in our stories. What do I mean by that? Let me share this beautiful quote from author Emily A Jensen, because it’s perfect and she gets it just right:

“Even being at the doctor is a reminder that something isn’t ‘as it should be’ and that can feel like a heavy blanket on our hearts”. 

So for a moment, we just let the high risk reality sink in. As Jensen puts it so well, we sit with the ‘heavy blanket on our hearts‘. We let ourselves feel the grief of the ‘isn’t as it should be’, because, dear ones, I truly believe mourning is an integral part of the life process.

We were not created for this brokenness.

And some days, the overall brokenness feels bigger than the good test results. So we weep. And that’s okay – in fact, I believe it’s downright good for the soul. But after the tears, we looked up again, and we remind ourselves that every day is a purposeful gift, and also that nobody has guaranteed stability stamped over their future on this earth. Stability was never promised. And that’s okay because better things await us.

Remember that the end of the story will be good, so if there are tears in your eyes…tears in my eyes… if we feel the weight of the brokenness and wish it wasn’t so… well, then we must not be at the final chapter just yet, dear ones. 

Pressing on… 

Moment by moment.