Tonight when I went to kiss my Asher at bedtime, he stopped me and said, No. Your nose. I want to kiss your nose. So I moved my nose closer and his little five year old lips found their way and planted one right on its bulbous tip. He’s up on the top bunk now, so I was standing on the bottom step of the ladder and we giggled in the dark.
There isn’t a night that goes by that I don’t recognize how precious my children are. That’s not because I’m an extra loving parent. Most of us do have moments throughout the day that whisper holiness over us, maybe they nudge a little memory tucked away in our hearts that makes us smile or we stop long enough to just look at them, our kids, the way they’re so unbelievably awesome, exactly as they are.
So it’s not that I’m more aware and present than the next parent, but I will say that having a child with a medical condition does something that leaves me standing around thinking about how every moment is a miracle more than I most likely would have without hydrocephalus. I mean, if our Asher didn’t have it, I would appreciate our time together here, but maybe not so intensely.
There’s this place between being terrified and peaceful that only parents who have special needs or sick children know. We all know fear and we all know hope, but both have their extremes. We know the extremes like a lot of people don’t and others do, so the middle is different for us.
The middle is daily life, a grind peppered with being okay while not being okay, and that’s okay. We are always hovering between that intense fear and that miraculous peace. It’s a place of beauty pain and parenting in its boundaries is exhausting while it’s also exquisite in its beauty. We know that these children of ours have a glow about them, a wildly deep and wise old soul kinship with the world and God and humanity. Asher’s big blue eyes have always told me that, even before we knew the fluid in his brain was building, growing his head and getting stuck in ventricles, making them huge, instead of trickling down his spine like most of the rest of us. He has what they used to call “water on the brain” and we found out when he was about 1 and a half. And so, when he was just one, we watched him being wheeled away to the operating room so a neurosurgeon could place a shunt and tubing in the middle of his brain. The tube goes around, under the skin, to the front of him and down to his belly. Sometimes, four years later, I catch a glimpse of the tubing or I ruffle his hair and feel his shunt and I freeze.
Oh yeah, this laughing, chit-chatting smart and busy little boy that I’m crazy about has a potentially life-threatening medical condition and he’s mine and what if? What if I don’t do my job well enough? What if we’re not vigilant enough? What if we miss something?
I’m not okay. And then later, I’m okay again, as he kisses the end of my nose and he seems so healthy and for one more night I can be sure that we have him here and every single night and day is more precious because of hydrocephalus. That’s how I sleep, because it could have gone another way in that day and so far it hasn’t. So far we’ve made it, together.
There are people out there grieving the loss of their children and so sometimes I just shame myself for feeling bad at all. It could be worse, I say to me. And that’s true and I really want to honor that pain in other parent’s hearts. I get it. I see that I have no idea what pain is, really. And I see that I’m so scared that I’m going to be them and it isn’t fair at all that they are the perspective givers. They shouldn’t have to be Perspective or Strong or Inspiration. I’m so sorry. I have sat in the children’s hospital with these parents and we lock eyes as we pass in the hallway or rub bleary eyes while filling another cup of coffee. We eat mostly awful food in the cafeteria and we sleep on cot-like things and we jump at every movement from the bed across the room. Some of us get to keep our children and some of us don’t and I hate it. It makes no sense so let’s not go around trying to make sense of a horrible mystery. The only thing we have left, as a collective whole is Grace. That’s all I know. Grace in the desperation, in locking eyes and exchanging soul high fives. Grace in what is left all around us in the grind. Maybe only in the smell of coffee or the lilt in a loved ones voice. The voice that is only theirs, how we each sound so different. No one sounds the same or lives the same or feels the same. So we sit back sometimes and just watch the vivid colors and the glint in his eye and the understanding in her touch.
We cry and we wrestle and carry on.
I will be Grace, that’s all I can do and he will rise above, please give me peace because if I hover here over him on the bottom step and I watch, I can’t live without the middle. I will tip toward always being terrified and that will keep me from my job and so hold me here, in the middle.
Editors note: Heather King blogs at The Extraordinary Ordinary. Please check her out, her words are therapeutic and she tells stories you’ll want to read.