When I Die
Hi.
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.
I am a mother of a son who has autism—a son who depends on me to regulate his own nervous system and talk to the doctor about his anti-anxiety medication and advocate for his academic needs.
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.
May 28, 2018 @ 11:51 am
You are a beautiful soul and a most amazing Mom. Im grateful you stopped into my life perhaps as a speaker but more as a muse. You put words to feelings i now am having over my grandson. Thank you
May 28, 2018 @ 1:02 pm
My heart hurts, when I read this. I am the grandmother of a 14 year old grandson with Autism. He has an awesome mother and stepfather (my son, his Dad, passed away when he was four). I think alot about his Mother and I am sure she worries about her son, when she will pass away. I know, I do. Thank you for your beautiful, wise words.
May 28, 2018 @ 1:54 pm
I also have a grandson with Autism. We worry about the same things after we are gone and his parents are gone. Carrie…. I think you need to write another book on this subject. You need to write it for Jack so that it’s all written in one place. And you need to write it for other parents and grandparents struggling with this issue. What resources have you found for group homes ( if needed ), how to set up disability trusts ( for those that don’t know such a thing exists ), how to deal with adolescents and young adults with autism. I am sure you have discovered resources that some of us don’t even know about. After reading your first two books and following your blog I know you are the right person to write this book.
Please consider it.
May 28, 2018 @ 2:21 pm
As a mom of three amazing little people with Autism, I can’t begin to tell you how much I identify with and appreciate your willingness to share this. No parent wants to outlive their children. And yet, how many nights have I worried myself into praying that I might hold on for just a single breath beyond their last. Even if it meant I had to make lunches with no crust, and field disinterested doctors calls and soothe the same anxieties about whether ‘the activity will be late if it rains’ until I’m 120.
Having worked my way through college and grad school at one of the nation’s first senior retirement communities expressly designed for the holistic care of adults with special needs, I hope I can extend you a tiny little flicker of hope. Despite budgets being cut nationwide, there are still so many agencies and individuals out there fighting the good fight to make sure those like your Jack, and my own little Lion, Lamb and Honey Badger are looked after compassionately should they ever come to need it. Good people. Stalwart people. Patient people. I wish the both of you a forever’s worth of health, love and light.
May 28, 2018 @ 4:08 pm
HI Carrie, My son Patrick just turned 25 and has Asperger’s. I just wanted to tell you how much progress we’ve made since he’s hit his twenties. Middle school, adolescence, and high school are years we endured. I helped run a non-profit for Asperger teens and their parents during these difficult years. This is where we both found friendships-people who spoke Autism with us. After high school we found a program here in Plano, TX that trained adults on the spectrum to create video games. This has been our niche for 6 years, and I am happy to say that Patrick is moving on to a wonderful program located in Cross Roads, Texas. We found 29 Acres through one of my older son’s friend’s wives who’s a transition specialist. 29 Acres is a community for.adults on the spectrum, but they also have a transition academy which Patrick will start on July 9. This is a 2 year program geared towards getting motivated Aspies to become independent. They work/volunteer, attend life skill classes on nearby UNT campus, and are responsible for the house they live in. I still panic about Patrick when my husband and I are gone, but please know that there are very caring people out there in this world helping to lead the way into adulthood for our children on the spectrum. Check out 29acres.org for just one example of a stellar program that’s going to help this parent sleep a lot easier at night! Hang in there-there are lots of formative years left!!
Sincerely,
Bernie
May 28, 2018 @ 5:54 pm
Yes. This is also my constant worry. Travis is just finishing his Junior year at a small private (expensive) school for kids with special needs. This time next year he will graduate. Then…….what? I’ve no idea what his future holds, or if he’ll ever live on his own, or hold down a job. At least you are a bit younger than my 53 years. And at least it seems reassuring to know Jack has four siblings who will love and look out for him. Although I know you probably don’t want to saddle them with being his caretakers. Travis has an older sister and I hate to think she’d have to shape her future to fit around him. I’d prefer them to have a typical sibling relationship but that really hasn’t been the case up to now anyway.
May 28, 2018 @ 6:57 pm
This is a predictament for all autism parents & grandparents. My friend has a 47 year old son, she’s 65 with heart problems & each time she is in the hospital he panics & writes on his FB page for someone to adopt him so he doesn’t have to live in a group home. It tears my heart apart each time he posts it but they have no other family left!! It is a worry for all of us!! Since Autistic never lived so long before these times, there is not much out there for them in many other ways too!! My grandson is graduating with full honors, 4 years of straight A’s, member of NHS but no offers of scholarships or of anything that might help!! We found a place for him at a kind of tech school but no scholarships are accepted since they are nonprofit & I can’t find any scholarship that would pay to the student or the parents. The school is very expensive ($1275) per month & no transportation is available. I can’t move up there yet as I take care of my 92 year old mother!, otherwise, I could move where he lives & transport him to & from the school. Hands together for all of us in finding our answers!!
May 28, 2018 @ 10:33 pm
Carrie, to put into words as you do so totally honestly and heartfelt regarding your Jack a boo and how his brain takes him on a different journey following a path unknown and of little interest to many, is a huge great comfort to other parents and grandparents ( My category) whose thoughts and worries are just as you put into words that we follow week upon week,, year upon year. Thankyou for helping to release the pressure on our minds of the stored up incidents that bring on questions of “why”, prompting short temper, anger and then guilt followed by the sorrow of not having been able to cope with or “fix it” for our special, complicated but never never unloved or deserted child as they grow into adulthood. Thankyou Carrie for your blog and to all the people out there who read it, and to those who reply….to read and share brings great peace even if only for a little while….until the next “incident” ???
June 1, 2018 @ 9:53 am
Thank you Carrie. For putting words to the feelings and fears so many of us share. You name the things that years of therapy don’t uncover. Maybe this is why I catapult myself into an intense fear of dying when I feel a cold coming on or have an unexplained twinge in my chest? I’m not crazy, I’m just afraid. Not of dying itself, but as you so accurately explain, of the legacy I’ll leave behind. Who will care for him when I’m gone, who will understand and empathize and explain and listen and love him…like you, I’m going to have to count on this village and then I’m going to pray that it’s enough.
June 18, 2018 @ 11:16 am
My son is 17. I am 62. He cannot tell time or make change. I never played catch in the backyard with him. I listen to him talk endlessly about computer matters. I listen to his Windows diatribes and am required to look at a computer screen as he loads something that takes forever to do in order to see some sort of mod that is in a game or something he created online. I get impatient. I tell myself that this is how he and I ‘play catch’