Parenting Medically Complex Kids Takes a Village

This life is NOT for the faint of heart. It is more and more heartbreaking with each new specialist, each new symptom, each new diagnosis. They say it takes a village. What if there is no village that can really lighten this load? What if no village capable of this exists on Earth? Parenting a couple of medically complex kids feel like that.

Having twins in the NICU didn’t prepare me for this life. An ailing parent with multiple medical complications for whom I was the primary caregiver for several years couldn’t have prepared me for this life. The fact is that nothing can prepare anyone for this life of parenting medically complex kids.

We are eternally grateful for our village

I keep hearing about this village. This swarm of prayer warriors, well wishers, meal preppers, babysitters, coffee deliverers, and card senders. It’s not that those things aren’t appreciated; they are. More than I can say. The few people who have really been in this for the long haul with us, they are our people. They are our family. The people we wouldn’t know how to do this life without. The reality is that we were never meant to do this alone.

And the folks we’ve picked up along the way who met us on this path and chose to walk it with us anyway….those people mean the world to us. They are a vital part of our village. More than that. They are our angels on Earth. Some of them are with us because they, too, walk this path. They know how important the village is. They know we need each other. We need the support in a way we can’t quite describe to those who aren’t on this journey, too.

a graphic with multi colored flowers in the corners with test that reads "sometimes I want to pretend none of this is real."

It really take more than a village, doesn’t it?

This idea that if you have these folks around you, you should be able to manage. It’s partly true. We do manage. But barely. We are surviving more than thriving most days around here. If not for our own little cheering section, we probably wouldn’t be doing either but it is what it is. Today, all we can manage is survival.

There is a deep ache that exists when you know your children are coping with what seems like insurmountable struggles day after day. As a parent, you feel like it is your job, your right, your privilege to help navigate those challenges. And you can’t. you can support and advocate. But you can’t help. You can’t fix. No village in this world can help when it comes to the heavy load that is parenting medically complex kids. This heavy load, this deep ache and longing for peace….it’s eternal. I don’t see it ever ending, and that’s a scary thought. Living with this overwhelming, profound sadness is just scary. Day in and day out. I keep waiting to wake up and feel a little bit of that elusive peace I keep searching for. Once in a while I’m lucky and I stumble upon a moment or two. It can’t last. Not when I’m snapped back to med changes, brain surgeries, and parenting medically complex kids.

Parenting medically complex kids requires breaks

This life makes you feel like you want to break into a million pieces at least a million times a day. And you don’t. You really can’t. You see, village or not, your children are depending on you. And as my sister in law so graciously pointed out to me just this morning, you’re no good to anyone, especially your children if you’re babbling in a corner. Take care of yourself when you can, how you need to.

Take a day. Call in to work. Yes, I’m telling you to play hooky. Cancel your plans. Or make plans. Sometimes you just need to hang out with your bestie. Watch bad tv and listen to sad songs. Cry if you need to. Take the time in short spurts. Take it from someone who worked from her laptop in the neuro-surgical waiting room through not one but TWO brain surgeries for her kiddos, you’re going to take a break one way or the other. You can choose the time when you start to feel the need of you can wait until your body and your mind choose it for you. Either way, it’s happening.

So, how will you take time for yourself today? Today, I did what was needed for work and walked away from the rest. I will make progress on my growing to do list tomorrow. Today I just need to sit in it a little while longer. I need to sit in this life, this motherhood. And I am giving myself permission to be OK with that. Just for a little while. Because this life is HARD, friends!

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