My best friend is obsessed with tragic mom blogs. She spends way too much time in her work-from-home day reading sad stories about moms whose kids have terminal diseases, rare genetic conditions, and a host of other maladies that are really quite heartbreaking. I’m not quite sure what pulls her to these narratives— it could be a can’t-look-away-from-flaming-wreckage voyeurism, or it could be from a sense of there-but-for-the-grace-of-god-go-I reflection on her own happy, healthy kids, or it could be something else. Even she’s not sure, but she keeps reading.
When my son—who’s only 4 days younger than her oldest son— was diagnosed with severe autism last year, she expanded her tragic-mom-blog reading to encompass autism and other delays.
Recently, she sent me a link to a heavy-heavy conversation between parents of kids with special needs. She warned me that it was “VERY heart wrenching (think Tragic Mom Blog level CUBED) and while it opens a window of perspective for me - it might flood you with emotion (good & bad)....”
On this page parents of kids with disabilities confess the deep, dark thoughts that literally that keep them up at night. These parents are raw, candid, and utterly grief-stricken. Since I’ve been there before and since I still get daily grief bursts for the life-my-son-could-have-had, I read on, and on, and on.
As I read two themes emerged:
1. My disabled child has ruined my life
2. I wish he/she was dead
Want to know why these comments are, as my best friend warned me, “tragic mom blog CUBED”?
Simple: moms of kids with terminal diseases are desperate to have their kids pull through, to live, and to grow old. They want life for their children.
The opposite is true of the parents with disabled kids who have written on this website. According to these parents: the best we can hope for our disabled kids is an early death.
As blisteringly honest as these feelings might be, as much I have had these shadows cross my heart, my gut reaction here is one of anger.
Has my autistic son ruined my life?
Could he if I let him?
I know it’s hard to raise an autistic child. I know it’s exhausting, physically painful (my son bites, pulls hair, and attacks us) and emotionally crushing to see him fall farther and farther behind his peers. I know that I am aging badly due to years of sleep deprivation because of my son’s insomnia. I know that I’ve gotten fatter because it’s damn difficult to make time to exercise in between being present to him, my other son, my husband, my hobbies, and my full-time jobs. I know that my husband and I have to work a bit harder to do normal couple stuff like hang out, have sex, or even have a conversation.
I know that grief over a child with disabilities comes in waves and never really goes away, and I don’t mean to trivialize the parents on this page’s emotions, but I want to say to them: it is possible to make it work. Really.
My husband and I have a life and we have a child with autism. We don’t do this because we’re loaded and can afford fleets of nannies (my husband’s in grad school and I bring home most of our money, which is quickly eaten up each month by Liam’s special diet, his therapies, and our family’s other living expenses).
Why has our child with autism not ruined our lives? Because we say no. Because we look this different path in the eye and say, “Ok, this is our life. The future is uncertain—for all of us— but we’ll deal with it.”
In this life, the only certainty is death, right? For us, for our kids, for everyone and everything we love.
That sucks, I know.
But, I still think it’s worse to be buried alive by despair.
Is an uncertain future a reason to kill the present? Are possible negative outcomes like homelessness or lack of social services for my future adult child reasons to wish him out of existence and then give up my 30’s to despair?
No. No. No.
I say no.
No, I will not let autism run or ruin my life.
And I say yes.
Yes, I will make accommodations for my son and make peace with the fact that my grown-up life is different then I expected.
Yes, I will throw every ounce of energy I can into giving him excellent therapy, care, and a loving home.
Yes, I will wear myself out every single day to pay the bills, enjoy my hobbies, play with my children, and laugh more than I cry.
Yes, I will get up the next day and do it again.
Yes, I will plan trips to Paris and Thailand and hope that he can come with me.
(Yes, I will go anyway, even if it means he has to stay in respite care for week)
Yes, I will love him for himself.
Yes, I will let him know that his continued existence is not a continued disappointment, even if he can’t express to me that he understands this.
This is my life, and he’s in it, and he has autism. That’s the facts, but they’re not reason enough to roll over and stop trying.
So, parents of kids with disabilities, I know it’s hard, but try harder. Get a hobby, get a babysitter, get some action. Do something that you want to do.
And do it fast. Life is short and all of this—including your child with disabilities— will be gone before you know it.
Jamie Pacton http://www.jamiepacton.com/ Jamie Pacton is a mom, writer, and professor who lives in Milwaukee with her husband and two small sons. Her work has appeared in The Autism and Asperger's Digest,Hyperlexia, Hopeful Parents.org, Now and Then, Parents (forthcoming), and other publications. She grew up in East Tennessee, but moved north to study literature at Marquette. Currently, she teaches writing for several online universities, so she can be both a stay-at-home and work-from-home mom. Visit her website at JamiePacton.com