When I breathe in, I can still smell the betadine that cleansed his skin for sterile procedures. That’s the smell of the hospital to me. I hear the constant pump alarms, the ventilator inflating and deflating his little, sick lungs, opening up every possible air sac to try to push the oxygen through his blood. My body feels the lack of sleep and a creaky neck from trying to find the most comfortable position in a rubbery recliner. I feel the awkward rush to beat the early morning rounds, when the medical team entered his room, and I scrambled to be out of bed and dressed just in time. My brain feels the heaviness of the everyday learning. More knowledge. More knowledge. More knowledge. Because maybe, if I knew just enough, I could hold on to him for a little while longer.
This reality isn’t just mine. It’s shared. It’s shared with hundreds of thousands of other men and women, all equally afraid, and all desperately in love with our children.
We were all catapulted into a world in which we never imagined living. A world of sickness and pain and joy and deep love in the least expected places.
We’re a special breed. The kind that is fairly desensitized to normal. The kind that watches other children with colds and no longer says that the worst thing in the world is a “sick baby.” That’s not true. There’s worse. And we try with every effort to keep the worst from unraveling in our life.
We’ve learned the power of kisses. Their magical powers may not work to heal our children, but they soothe our aching hearts. Every kiss we can. And one more. And one more. And one more as we hear the alarms and watch the staff run to save the child next door, and then quietly disperse again to give the parents the time to say goodbye when there are no more medical measures to be taken. Curtains pulled. Silent tears. The hush covers the unit. It’s not something we’re supposed to know is happening. It’s not something we want to know is happening, but when you’ve been around long enough, the ebb and flow, the life and death, can nearly be felt in the air. It reminds us of the reality of our situation, and it reminds us to hold on a little tighter to our own.
We’ve learned to never underestimate the strength of a child. We’ve seen miracles happen, and we’ve seen little lives come back from the brink. We cry big tears and catch our breath when they rally and rebound from all the close calls.
We know what the world doesn’t. When all the world can see are tubes and cords and machines and physical signs of sickness on their body, we know the truth. We know that these children are not defined by their illness. We know they have a sickness, but they are not defined by their it.
We know that we will never be more whole than when we pour out every last ounce of love that our soul possesses. These little ones teach us more more about life, love, and hope than the sum all teachers who have gone before. They forever change us. Forever wreck us to pieces, put us back together, and fill our hearts to overflowing with more love than we ever thought possible.
We know that no matter what amount of fear we possess, they are worth every ounce of it. Loving them is always worth it, whether we love them on earth or whether we love them across worlds, we will love them, and it will be our undoing in the most beautiful way possible.
We see them for who they truly are— little heroes. We know the secret— that sometimes the most heroic are those who, without needing words, teach the world what it means to love and to fight. Their fight is unfathomable. Their love is sweeter than life itself. Their impact can easily change the world. After all, it’s permanently changed ours.
We are the parents of these brave, chronically and critically ill children, whether we hold them in our arms for our entire lifetime or for a fleeting moment. We are theirs and they are ours, and we wouldn’t have it any other way.
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