The Grief Pendulum

written 5/14/2026

I recently saw a post on social media by a woman with Moebius Syndrome—the same syndrome my son Declan had—about her success in her chosen field and a recent promotion. My emotions did summersaults.

Upon reading her post, I felt pure, undulated joy. Look at what she could do! She worked hard and showed the world the possibilities. Moebius Schmobius. Absolutely nothing could hold her back. We were right to have fought for Declan. To have intervened when he was a baby, with extreme interventions and treatments that would keep him alive and give him a chance.

And my joy turned to grief. Tears, followed by the indescribable tightening in my chest that only those who have known true loss could ever understand. Look at what Declan would never have.

I often watch Nash walk or play with a classmate, and am haunted by the vision—that should have been him with his twin Declan. We were supposed to have twin boys. The same age, healthy, rambunctious. A few days ago I teared up as I watched Nash and his friend walking in front of me on our way to a soccer game. They goofed off. I leaked salty tears.

I sent a message to the woman who was promoted at work. I’m so proud of her, and am so thrilled for her to have found this path. While inside, I crumbled. Why couldn’t this have been Declan’s path as well? That was everything we had hoped for, in those early days.

To love a disabled child—even one who is still with us—is to forever grieve. The loss of normalcy, the loss of hope, the loss of paths once assumed to be open. Even before Declan passed, I grieved him in these ways. I still do, though with the added layer now of having lost him.

It’s truly the random triggers that take me out at the knees. Today is my toddler’s second birthday. It’s another first in the After. After we lost Declan. Beckham toddled into my office this morning and to his brother’s photo. He pointed and said, “wooka?” (a nickname we’d given Declan.) My heart broke. Declan, who was so excited to be a big brother that he chased me out of the house singing Daniel Tiger’s “I Can’t Wait to Meet The Baby.” And I saw Declan in that moment, reaching gently for Beckham and putting his arms around his baby brother.

This weekend we’re having a little birthday party for Beck. I see him there too; fighting with Beck over his new toys. I see him when we go to Nash’s soccer games, laying on a blanket and clapping for the wrong team. I see him in the mornings, sitting at his table in the kitchen, reading a book while his nurse feeds him.

I know that having a disabled child, or losing a child, are not unique experiences, but they are rare. I am glad for that, as I wouldn’t wish my experiences on anyone. But it’s also a lonely place to be. To find myself grateful that I am able to start getting back into running, because I am no longer so buried by the weight of caregiving – but then cracking when I see a disabled person in a wheelchair being pushed by a caregiver. And that’s when my rage break through. My vision tunnels, and my pace increases.

Rage. There’s nothing like the death of a child to light that spark of rage. Rage, the other emotion I pendulate through.

Just the other day, as I pulled food from the fridge to start making dinner, my phone rang. Ring ring - I looked at the screen. Oh, great. It’s one of Declan’s doctor’s offices. What could they possibly want?

“Hello, may I speak with the parent or guardian of Declan Youngdale?”

“Uh.... this is.” I replied. My dread grew. Did they not know?

“I’m calling about the appointment that he had scheduled for this month that was canceled. He is still due for a visit, would you like to schedule that with me now?”

“He passed away,” I managed to say.

“Oh, I’m sorry. And can you tell me what day that was?”

“What? No. Take me off your list.” Click. I hung up.

I couldn’t believe the audacity of the woman. How dare she call me unexpectedly, and try to turn my son’s death into a routine administrative task? Oh, he’s dead. Ok, let’s check the box and fill in the date.

And as my anger drained, I couldn’t even say why I was so angry. Was she lacking tact? Yes. But then I don’t know when or how she could have asked me for that information without it landing so poorly. And any script or approach that may have worked for me would likely not work for the next person. There was just no good way for her to ask for that information.

What I’m realizing is that anger is often nothing more than an alarm system. Someone is approaching an area that is off limits. Like the alarm on my house, it sounds if a boundary is crossed without that person having been invited in.

Ok, so I get it. But for me, I need to understand what to do with that. Because next time it could be a situation that gets me into trouble if I get mad.

I know that grief comes in waves, and I know that it can look different every day. But I’ll keep trying to show up. To cheer for others, to identify when my grief is in the driver’s seat, and to work towards getting myself in line when it is.