What It’s Like To Have a Critically-ill Child

Believe it or not — it can be difficult to explain. There are so many parts to it and they take turns being the most devastating part of your life. I’m going to attempt to break it down as honestly as possible. My hope is that if you have an ill child yourself, you will relate and maybe find comfort — and if you don’t have a sick child, perhaps it will give you insight and empathy.

1. The loss of the child

If I were to paint a picture of the spirit of my daughter it would be this: pigtails flying behind her as she peddles full-speed on her bicycle at five years old — singing and periodically removing her hands from the handle bars. She was electric. Anywhere I moved, people knew Megan before they knew me. She talked to everyone. The elderly lady across the street was her new best friend. The boy her age down the street a constant and easy playmate. We moved to an island in the South Pacific when she was starting third grade — just her and me. The first day there we were at a water park and she took off like a shot. All the lifeguards and most of the staff knew her by name within a couple of hours.

She was free and beautiful and full of light and love.

As she matured, she became a musician. She was a moving performer and an amazing writer. And everything interested her. When she went off to college, my heart soared. We had been through so much together. And she was making it. She was independent, had a good job, good friends, and was studying to be a nurse. She had some weird health things, but they seemed manageable. Until they weren’t.

Here is the thing: having a child that becomes severely ill is like watching a car wreck in slow motion — and being absolutely powerless to stop any of it. The moment of impact, that moment where you know you have lost control, is just the beginning. Every other part is like a stilled picture in a frame moving around in some kind of free fall. One moment I am filled with the pride of her childhood and the wild hope I held there. Then I see her singing and feel the weight of that loss as it moves by. All the ways I hoped, all the ways I celebrated her life are all fragments of glass that have broken all around her and I.

I mourn her life. What it was supposed to be. What she wanted and what I wanted for her. It is unbearably sad, and I feel as if I am still walking the highway, knock-kneed and dazed, wondering what the hell just happened. Where is my daughter? Is she ok? Am I ok? Only, she’s not ok — and I am okay apart from the utter shell-shocked life ahead of me, and I don’t know how to survive that.

2. The loss of my autonomy

This is a difficult one, but it is a reality. At first, I was really consumed with the loss of Megan’s future. That sorrow consumed everything I did. Suddenly, the job I loved and the relationship I was in were saturated with this grief that I didn’t know how to regulate. Sometimes I would be “fine.” Because life just keeps going, doesn’t it? I have to do things like cook dinners and go on dates. I have to raise my other small children. I have to be present in a million ways that I am not prepared to be and it is incredibly emotionally taxing.

Apart from that, there is an increasing awareness of being tethered. It is a very complex awareness. Suddenly, I can’t just leave to go out to dinner without thinking about what Megan might need. I can’t do overnights at my boyfriend’s house or plan a camping trip with my boys. Everything begins to feel untenable, and her illness begins to feel like a black hole that is sucking us all inside of its gravity. There is some grasping that happens — some desperate grabs at what used to be normal. It is difficult to explain to friends that I can’t meet them for drinks because Megan might need help opening a pill bottle. I realize that I am tethered emotionally and physically — in a way that makes me increasingly lonely and isolated.

Enter boundaries: it takes a while to get here. At first, the complete unfairness of the illness takes the front seat. Then, slowly, there is a realization that life has to continue in some way that is manageable. For me, life came to a screeching halt at the end of March. I had overworked myself. I was in a job where I deescalated highly elevated kids every day. I came home and made several dinners, did the basic care rituals for my daughter, took care of my boys, tried to be a girlfriend, and give myself some space to feel all the things I was feeling. Then at the end of March, my boyfriend of 5 years broke up with me, Megan had a crisis, and I had a nervous breakdown.

I had to get family medical leave from my job, take some time off, and figure out how to make my life work. The fact is, I have a life I have to live. I am responsible for it. And I was drowning in it. I decided to look for an assisted living home for my daughter. We have had many, many conversations about it. Tearful ones. The bottom line is this whole situation is not about what anyone wants. In a perfect world, I could provide for all the needs of my daughter and be a healthy and whole person on my own without any help. In a perfect world, she would not be sick at all. But it’s not a perfect world and it’s not about what I want.

She has to be in a home because I have a responsibility to keep providing for her and her brothers. And I have a responsibility to manage my emotional well-being. I have to be healthy because I have a life to live and other children to care for. It isn’t fair, and nobody wanted it to happen this way, but this is the truth of where we are at. Megan told me yesterday that she knows a home would be better for her and better for me — but it is just so sad. I agree. I agree with my whole heart.

But still. I have to find a way out of the gravity of that black hole. And that is a grief in and of itself that I honestly don’t know if I’ll ever get over.

3. The inability to protect

This whole thing has been a huge wake-up call in terms of my limits as a parent. I can’t protect Megan from this. And I can’t protect her brothers. They are 9 and 11. They adore their sister and this has been so hard for them. One day, Megan was having a crisis and I was at the end of myself. I called my ex and asked if he could take the boys because I didn’t want them to see me in meltdown mode.

I told the boys their dad was going to come get them because I was having a really hard time. I told them that life is just really sad sometimes and today was a really sad day. I didn’t want them to feel responsible to make me feel better — I had supports. I just needed time to be sad. They asked if they could stay and be sad too. Megan is their family — they have feelings about her too. They wanted to snuggle on the couch and just be sad together. It was so bitter/sweet. It’s important to let your kids know that sad is ok — that it is absolutely appropriate. But it is devastating to not be able to protect them from all this grief.

I can’t protect anyone — the car has crashed. All I can do is find a way to survive it, though everything will always look and feel different. Though I will sometimes feel the impact like it is fresh and has just happened. Though sometimes it will cause panic to rise unbidden at the strangest of times.

What now?

We all do all any of us can do: live within this moment with as much grace as we can muster. If you have an ill child, be good to yourself and know that it is not only ok, it’s necessary. And know that it is ok to feel devastated about that.

If you are a support or a friend, it’s ok to not know what to say, to feel afraid to go to those dark places. But remember that your friend/loved one is fighting a battle even when they look like they aren’t. Even when they are planning dinner dates, play dates, or laughing at a joke. And maybe hug them a little tighter.

—

This post was previously published on MEDIUM.COM.

***

You may also like these posts on The Good Men Project:

White Fragility: Talking to White People About Racism

Escape the “Act Like a Man” Box

Why I Don’t Want to Talk About Race

What We Talk About When We Talk About Men

—

Photo credit: Shutterstock