Sometimes you forget anything big is looming in your future.
Sometimes you lie awake just trying to breathe because it’s all you can think about.
Sometimes you see your child and know she will overcome everything—beginning with the medical difficulties of her infancy.
Sometimes you see your child and just beg and plead she’ll see next year and that you’ll see her grow up alongside her siblings.
Sometimes you read stories of victory over similar medical situations and you feel so invigorated for the life of conquering ahead.
Sometimes you see the face of a little one who didn’t make it and you crumble inside trying to feel those feelings in case they should ever become your reality.
It’s this ongoing mental and emotional roller coaster. It’s the torment of the mind. It’s trying to decide whether to cling close to every single moment or to try to shut off the deep-rooted emotional ties in fear that it would cause any hurt to hurt more deeply.
You know when you got into a new relationship and it was a ton of fun and you soaked it all up . . . but then you realized you were getting very close and intimate and the fear of loss took over? Do you remember the tension of wanting to go all in and yet wanting to step back in case it didn’t work out? That’s the best metaphor I’ve come with to describe the period of waiting for big medical intervention for your ill child.
From the outside, you wouldn’t have any idea that her body isn’t functioning as it should. From the outside, she looks like the majority of babies you would see.
Inside it’s a balancing act of time, giving her enough time to grow to optimize a surgery but not giving it too much time—because if we did her body would suffer.
Looking at our family from the outside, you probably wouldn’t see that we are daily picturing our child on a medical table through a massive operation. From the outside, you wouldn’t see the fear of a faulty move of the doctor’s hand or a sterilization procedure not being followed and welcoming infection.
Yet these are the things I see every day.
Sure, I see her smile and I hear her coo. I see the way she tracks us across a room. I see the signs of her hunger as she anticipates her next bottle. I see the way she warms her brother’s heart and calls out a new beauty in all of us.
But in the stillness, usually, I also see the worst possibilities.
I’m not sure if this is “normal” anxiety or heightened anxiety. I really don’t care to label it and most of the time I have found it really powerful to experience it and talk about it with my husband and closest friends. But some days I wish it would go away.
I know there is not one child or human who is exempt from something terrible happening . . . but when you have something so big in the future, something that seems so complex, something that will probably go just fine but if it doesn’t would be detrimental to your family, you think about it more often. You see it. It creeps up on you in the night when you’re snuggling. It causes you to lose sleep, to cry yourself into headaches and you have to fight for the ability to bring the energy you want to your day.