My name is Carrie.
I am forty-three years old. I am in decent shape. I exercise almost every day, and I don’t take medication, and I don’t have any medical issues. For the most part—aside from the occasional cold in the winter and monthly bouts of PMS—I am healthy.
And yet, I often think about what will happen when I die. I think about the day when my heart stops beating and my lungs stop breathing and my brain quiets for the last time.
I am not sick. No, it’s not that.
I am not morbid, or depressed, or a hypochondriac.
His name is Jack. He is fourteen.
When Jack types a text or an e-mail or something for school, he uses all capital letters, like this: Mom. Do Not Forget. Frosting At The Grocery Store. It cracks me up whenever I see it.
What will happen to him when I die?
Many of us contemplate our own mortality. It’s only natural. We worry we won’t make it long enough to see grandchildren graduate, or daughters wed, or sons cradle newborns of their own.
Me, well, I worry my special-needs son will have nowhere to live.
I mean, obviously, he’ll always have somewhere to live. My husband and I have already been working on a plan for that sort of thing. There are different communities for people like him, with varying levels of support and staff and independent activities.
Jack Has Autism. He May Not Ever Live On His Own No Matter How Hard We Try.
We Are Trying.
I screamed at him the other day. It was the kind of scream you hope and pray the neighbors don’t hear, even though it’s a fine spring afternoon and all the windows are open.
I screamed at him because he’d been asking me over and over again what our schedule was for Tuesday. It was only Sunday, see, and so I couldn’t really think clearly about Tuesday.
But it was more than that. It was more than the schedule. It was that he’d asked me to take him to Target on Tuesday to buy the new Black Panther movie since that’s when it was coming out on DVD.
I had plans for Tuesday afternoon—a baseball game for one kiddo and an errand to the tailor for a dress I bought that was too long and dinner to make and whatever else. I was busy. I didn’t care about Black Panther.
He did, though. He cared very much. He cared even though he will never actually watch the movie and he can’t quite understand the plot or the different characters or the fight scenes.
So I screamed at him. I screamed at him he needed to knock it off, he was driving me crazy and when was he ever going to stop obsessing about all these ridiculous things.
His face crumpled. He cried and then I cried and we decided to order the movie from Amazon as a compromise. And then he went out to the front porch to watch for the UPS man, even though we had just ordered it five seconds ago.
At what point will it be okay for me to die?
At what point can I look at my son and think he will be just fine without me—sad, sure, maybe a little reminiscent and even grief-stricken—but safe, and independent, and financially secure?
The thing is, I have never been a person who is afraid to of death. I have always aimed to die as I lived. I long for nothing more than to leave behind a legacy of great big belly laughs and funny stories and a ring for my daughter. My husband Joe gave it to me when she was born. It’s a ruby, for her birthstone.
But my legacy has changed. I will leave more behind than laughter and jewelry and memories. I will leave behind a boy, or perhaps a man, who cannot take care of himself.
If I live until I am 85, he will be fifty-four.
When I’m ninety, he will be sixty-one.
The day I turn fifty, he will be twenty-one.
These are the calculations I do in my head from time to time, and I am not even that good at math.
What is the right age? What is the right time for me to close my eyes and take my last breath?
What will happen when I am gone?
Who will decipher his unusual messages, and listen for his unique words?
Who will remember that if he takes a shower in the middle of the afternoon, it means he has a headache?
Who will talk to the doctors about all the side effects from the medicine he swallows at night?
The worries assault me like the voices of an orchestra—some high, some low, some soft, gentle whispers.
What will happen to him when I die?
And if worry is the orchestra, then my heartbeat is the solo dancer in the dark of the night. It jumps, and leaps, and twirls.
I am his mother. No one knows him the way I do. No one knows that he needs lunch money for the hot truck at school every Friday and how he starts to get headaches when the prescription for his glasses is outdated and the way he likes to sleep with six pillows at night.
I know, I know. A lot could happen in the coming years. He will grow. He will change. He will make progress.
But see, he is stuck right now. He is so stuck, you wouldn’t even believe it. He is taller than me and he can’t follow the plot for movies and my heart aches and I have a lump in my throat that sometimes won’t go away. I am in charge of his future, and I won’t live forever, and the weight of this is so heavy at times that it’s hard to breathe.
Never. I think never. I think it will probably never be okay to die. I have a deep, dark feeling we may never get to that point.
But I will die. Everyone must. It is fact.
So I am counting on you. Yes, you. You right there, reading this post.
You, sitting in your car, sipping coffee and scrolling through new your newsfeed on the phone.
You, in the plaid shirt, eating lunch at your desk.
You, in the dress with all the little flowers.
You, and you, and you.
You are my legacy.
I need you.
I need you to remember how once upon a time, you read a story about a boy named Jack.
And if you ever run into him, and I am no longer here, I need you to do me a small favor.
Remind him how much I loved him.
Explain how I never once—not even for five seconds—gave up on him.
Tell him how sorry I was for yelling one afternoon in May.
Jack-a-boo. I Am Sorry.