Two years ago my daughter got sick, really sick.

And nobody knew why. And when the doctors finally came to a diagnosis it was a chronic one. And my reactions were all over the map.

There was denial. “It couldn’t be! Were they sure? Maybe they weren’t her results.”

There was anger. “Why her? How did this happen? What about all the things she was supposed to do?”

There was bargaining. So much bargaining. “Please, let it be me. Let me do things over . . .”

There was depression. “How could I watch her suffer like this, forever? And how long was forever?”

Then, there was acceptance. “Forever would be what it would be, and we would make the most of it.”

In short, there was grief.

Don’t get me wrong, I was grateful for the information and thankful for each day I would still have my girl, but that didn’t stop me from mourning all the dreams I had for her, dreams that fell flat that day.

It wasn’t a streamlined process, but grief seldom is. It doesn’t follow a checklist, you know? It’s filled with ebbs and flows. I can’t even describe it as day-to-day, really. Maybe moment to moment.

I heard the diagnosis spoken. I held the test results in my hand. But I still wanted to think I could change it. I wanted to believe I would wake up and see her walking. I wanted to believe that maybe I’d get a second chance to read the words I once skipped in bedtime stories or tell her just how proud I was. Not of her accomplishments—but of her. Because of course I’d do it all different. And in those same moments that those feelings of helplessness and denial would drive me to bargaining I’d find the strength to carry on. And that strength was rooted in gratitude. Gratitude that for another day she was mine. And leaning into that involved acceptance. So somehow the whole process was intertwined.

It took some time, but I gained control of my emotions.

I let myself feel sorrow. And mourn the childhood I had wanted for my girl. It felt selfish, but I sat with that feeling, too. And day by day I was more present for her, as she was.

We had found our new normal.
It wasn’t what I’d planned, but there was joy in it all the same.

She wasn’t ok. And I wasn’t OK.
But life went on.

It went on, for her and me. But Gracie isn’t an only child. She has two younger brothers. Boys who lost their “big” sister though, confusingly, she was still present. And though I was grieving, I never thought to tell them it was OK for them to grieve, too.

Their hearts hurt, but I didn’t know.

I didn’t know until one day I told my youngest son he’d always be my baby. And my middle son solemnly asked if Gracie would always be my oldest. And without thinking, I said, “Of course.” And with tears in his eyes, he said, “Good because I never want to the oldest.” And at that moment, it hit me—the gravity of the situation had hit him. He was asking me if his sister would die. It was and remains a real possibility, but one I never told him he could say.

I wish I could say I recognized his grief at that moment and became the support he needed. But I didn’t.

I hugged him. And we went outside to play. The truth is I didn’t know what to do. And instead of doing something, I consciously did nothing.

A few months later my youngest was lying in bed beside me, and he said, “Last night I dreamed sissy could read to me again, do you think that could really happen, Mama?” And I heard his tiny plea. A plea to know what was happening and to hear that he didn’t have to be strong. And I told him, “We can hope so, buddy, but we never know.” I asked him if that made him sad, and he told me, “Sometimes, Mama.” And we sat with that.

We sat for a while in silence, his head on my chest. And finally, he said, “I miss Gracie, Mama.” And I said, “I miss her, too.” And there was more silence. Then he said, “I wish I had been nicer, Mama.” I promised he’d always been her favorite littlest brother. With a giggle, he replied, “I’m her only littlest brother” and turned on the TV.

I woke up that day.

I realized that as much as I struggled with Gracie’s illness, my boys did, too. I lost many of my dreams for her the day she received a diagnosis, but it had taken their big sister long before. There’s a pecking order to siblings, and theirs had been shaken up. Regression had taken their big sister. She was still in their lives, but the roles had changed. They were now her protectors.

And, by and large, they didn’t complain.

The compassion they gained and empathy they demonstrated came to amaze me.
When she lost her hair, her brother shaved his head, too. When she couldn’t walk, her other brother sat down on a skateboard and rolled across the driveway with her. When she was restricted to a bed, bound by tubes, they crawled up in bed beside her and read their favorite stories.

But resilient as they were, they were grieving.

They were going through the same process I was, with a lot fewer resources.
And in the throes of illness, living day-to-day, I never said, “We can be sad.”

Instead, I kept saying, “It’s going to be OK.”

In our family, our motto has become, “We can do hard things.” And I used to think that meant we could persevere through anything. And I think the kids did, too. And we can, kind of. But I’m learning that sometimes that means stopping, holding on to one another and recognizing that this is not fair, nor OK.

Life is hard. And so is grief. But together we can do hard things.

You may also like:

You Become the Advocate They Need When Raising a Child With Special Needs

Dear Sibling of a Child with Special Needs

Dear Sibling of a Special Needs Child, Your Heart is Full of Beauty