Confessions of a Parent Anticipating Grief

“If people bring so much courage to this world the world has to kill them to break them, so of course it kills them. The world breaks every one and afterward many are strong at the broken places. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially. If you are none of these you can be sure it will kill you too but there will be no special hurry.”
— Ernest Hemingway, “A Farewell to Arms”

Hey guys. I am broken, but not destroyed.

Whenever God is stirring, changing, growing me, it hurts. Growing pains, I suppose. I am happy and sad. Hopeful and discouraged. Joy-filled and empty. I want to change and I don’t. I want to speak out, and I want to hide.

All these opposing thoughts, swirling, fighting, all in conflict and all in the same moment. Should I smile or should I cry? I feel both.

I want to tell you everything, but everything is too much. I want to tell you I am clinging to my son Jayden’s breaths like any one could be his last. His Sanfillipo syndrome diagnosis means his life expectancy is 10 to 20 years. He is 10.

I want to tell you I feel God preparing my heart to let him go. I want to tell you this year may be his last. But I don’t want to tell you, too. I don’t want casseroles or cards or extra pity. I don’t want to put nails in his coffin prematurely, so I try not to stay there. This is truth.

But I also want to tell you he’s laughing more. Some days, he’s even walking by himself. Yesterday, he was riding a roller coaster no handed and eating pizza by mouth. Yesterday, he was smiling in the car as we played “Single Ladies.” This is also truth.

This is life. This is regression. Good moments, bad moments. Holding on, letting go. Celebrating, grieving. Death and life co-exist.

I am no expert at grief, but I am a master at anticipating it. And living while you wait for your children to die and dying while your children live — isn’t life to the full.

I wake up at 5:20 a.m. scared he’s not breathing, but tell myself not to check. If I don’t check, it won’t be true. So I lay there and pray. Pray it’s not today. Pray my husband sees the rise and the fall of his chest. And pray God will sustain me on the day it no longer rises.

Death is supposed to have a birth order rhythm, but it doesn’t. It’s a shifty and unexpected as the wind.

See, I want to let you in. But then I tell myself I don’t want you in. I convince myself to hit “save” instead of “publish.” You don’t want to read this, I reason. You want to read happy stuff. This — this pain? It’s too much. My “me too mamas” get it. These are just words to wrap around our bleeding hearts. Or maybe you are trying to understand without actually living it. I love that. Thank you for looking. And then there are some who believe if they don’t read it, it won’t happen. To your child. To your comfortable.

Maybe we all are a lot alike. We all want someone else to check for the rise and the fall. But no one is safe from pain.

You need to see me strong and smiling. I need to see me strong and smiling.

I’m starting to realize maybe you need me to show you both, the darkness and the light. Because you can’t have one without the other. We all have both. We all can be happy and sad. We all can be grateful and envious. Fear and confidence co-exist. We all live in millions of little tensions, don’t we? Which is why life is so damn complicated, yet wonderfully simple.

Jayden recently had some teeth removed that were causing him pain. And since then, he has been smiling and laughing and eating more. So have I. As he is dying, he showing me how to live.

He’s barely walking now. He is a 10-year old in an 85-year old body. His legs are bent and trembling, fighting just to stand in front of a walker. I am proud. I am sad.

He’s getting all his nutrients through the g-tube. A few bites here and there, but mainly g-tube. Today I got mad because even his ability to drink from a straw is failing. I am just not sure who or what to be mad at.

His information sheet still says he is a runner. He’s not a runner anymore. Time continues to push us closer to grief as we dig our heels.

And there I sat, on the Little Dipper at Great America, holding my son, tears rolling down my face for all to see. I couldn’t get off the ride. It had been a tough morning, an even harder afternoon, and the weight of it all was too much to bear. Just me and Jayden strapped on the roller coaster. As they loaded the cars around us, I wept. I just sat there in the open and wept as people stared. Time stopped. I felt alone, vulnerable, and helpless in the sea of people. Defeated and angry. The teenage girls operating the ride, looking for words to say, found these: “His hair is so blonde.” And I couldn’t even lift my head to thank them.

Vulnerability is funny like that. There’s this release. This freedom that comes when you just let the tears come and you give them space. When you stop hiding. Stop pretending. Stop rushing the moment away and actually sit in it and let it run its coarse.

Two by two, the seats filled up around us and everyone was strapped in.

“All clear? Take five.”

And as the coster clicked up the track, I lifted Jayden’s arms with mine and we laughed.