What I Do
“And what do you do?”
What do I do? Well, this morning I made eggs for my 7-year old and added money to my 8th grader’s lunch account. I have no idea what he’s eating at school but it’s starting to add up so I should really check and see how many bagels he’s buying off the breakfast cart.
Then I took our dog Wolfie for a little walk down the street. He was a devil to house-train, but I find if I walk him once a day then he doesn’t go in the house.
I went to yoga.
I folded towels. I like to do one load of laundry every other day—that helps me stay ahead of things.
Then I ran to Kohls to buy socks for my boys.
And now I’m here, at the standing next to you at the salad bar in Whole Foods.
Your suit is nice. The pinstripes are very professional-looking. I used to work with men like you—men who wear suits to work and have meetings and write reports and drink coffee alone in their office.
I used to wear a suit and write reports and have meetings and drink coffee alone in my office.
Now, I do the laundry. I make beds. I shop for low-sugar granola bars and I plan pork chops for dinner and I buy books I think my children will like.
The other day I found one that has a quote for every day of the year. Last night at dinner, we took turns reading the ones for each of our birthdays.
“Jack, here’s the page for May 9th. Here’s yours, read it to us.”
“Emerson. It says Emerson. Emerson. Emers—“
“Jack, read the whole thing! I want to hear it,” I interrupted him.
“Emerson, Emerson, Emerson.”
Some days feel empty and long. Other days I feel very, very busy. It’s the dichotomy of a stay-at-home mom’s world, this alternating universe of tasks and time, longing and satisfaction.
I love being home for the first day of school, because I bake cookies and get them all of the bus and listen to their chatter about teachers and friends.
But I hate being home all day in March. Even though spring is around the corner, here in New Hampshire the cold and the grey and the slush linger.
Sometimes there’s a lot of noise in my head. I think about how I should maybe get a job now that all five of my kids are in school but how could I ever get a job when the elementary school bus pulls up at 2:40 not to mention when they’re sick or have a snow day.
Sure, my other four kids could easily go to after-school care or come home to a babysitter, but I don’t think it would be good for Jack.
Who’s Jack? Oh, he’s my son. He’s twelve. He has autism.
He also has anxiety—lots and lots of anxiety. It’s kind of hard to admit this, but there are days when I feel like no one else knows him, or understands him, the way I do.
I know if he needs a haircut by the way he starts to twist the hair near his temples between his fingers.
I know when he’s getting the stomach bug, because he always, always takes a hot shower if he feels nauseous—even if it’s 3:00 in the afternoon and he already took a shower that morning.
I know when he says, “What,” after I ask him something that it’s not because he didn’t hear me, but because he’s trying to collect his thoughts. He’s looking for his words the way you or I might look for a needle in a haystack.
He doesn’t say it with a lilt at the end, like a question. He says it like a sentence. What.
I know when his sneakers are starting to pinch his toes, because he’ll insist on wearing his big black snow boots to school, even if it’s only September. I learned this the hard way, after he spent three months clomping around in Bogs.
And I know that if he walks out of the room suddenly, goes upstairs, and climbs into his bed in the middle of the day, he has a headache. Sometimes I can tell because he starts to rub the side of his head absent-mindedly, the way you or I might worry at a button or a loose thread on our jacket.
He’s been getting headaches a lot lately.
They started early this summer. At first we told him to drink more water, that maybe he was dehydrated. It seemed to help for a little while, but then they came back.
They’re getting worse now. At least once a week he lies in his room with the blinds drawn. We have appointments with the pediatrician and the neurologist and his ophthalmologist at Children’s Hospital in Boston.
We have to drive to Children’s Hospital in Boston because, like everything else with this boy, even Jack’s eyes are unusual. He has one good, strong eye, and another sit-on-the-couch-and-eat-potato-chips lazy eye. This is called amblyopia.
Yesterday was his eye exam. Jack was very happy about it because it meant he could stay home from school for the day and pick where we eat lunch.
He is, however, a pain to take to the actual exam. He touches everything. He needs about a million prompts to sit still and read the letters and listen to directions.
“You see,” the doctor said kindly while she tried to get him to look forward, “His left eye. It’s wandering.”
“Wandering? What do you mean, wandering?”
“His brain has no use for it anymore because the vision is so poor. So it stops controlling the muscles. And the eye wanders. It’s called strabismus.”
It’s called strabismus.
My son has autism and anxiety and amblyopia and strabismus. And now, headaches.
Except for the autism part, none of these are really a big deal. But when you add up A + A + A + S + H for headaches, it equals a boy who has a very hard time seeing and hearing and knowing the world around us.
I am so sad about this, Mr. Pinstripe Man.
“Here, watch. I can show you.”
From somewhere under a long countertop, the doctor pushed a button that made a small stuffed dog bolted to a shelf across the room move and bounce. I could hear it dancing frantically as I watched my son’s left eye move to the outside corner.
“Jack, do you see the dog? Jack, look at the dog.”
The dog was white.
Jack’s eyes are blue.
“He’s probably trying to self-correct it, which is why he’s getting headaches.”
“We’ll need to consider surgery in the next year or so to tighten the muscles,” she said, reaching back underneath the counter to quiet the stuffed dog.
This was yesterday. And today, you and I are standing at the salad bar, trading tongs for tomatoes and cubes of tofu, and you just asked me what I do.
I fail every single day. That’s what I do.
I don’t have performance reviews at my job. But if I did, I would probably go ahead and just give myself a D+.
I think that’s pretty fair, because everyone is fed and reasonably clean—except for 7-year old Henry, who takes a bath for about five seconds and lies when I ask him if he’s brushed his teeth. They all have good backpacks and pencils for school. I kiss them goodnight before bed, and in the morning I wave when they get on the bus.
I love them. I love them so much my heart squeezes like a fist that is trying desperately to hold onto five shiny copper pennies.
And yet, I didn’t notice the way my son’s eyeball floats to the side of his head because his brain has no use for it anymore and the muscles are weakening and now his head hurts all the time.
After dinner last night, I was wiping down the table and shaking the crumbs off the place mats, and I noticed the new book I bought facedown on one of the chairs. I opened it to May 9th, and in the quiet of my kitchen, I read the quote by Ralph Waldo Emerson.
“Though we travel the world over to find the beautiful, we must carry it with us or we find it not.”
This, Man Wearing a Pinstripe Suit, is also what I do. I am here for the beauty. I look for it every day to carry around and keep, like the tender green shoots of grass buried underneath March’s slushy snow.
“Mom. I am happy. For lunch with you today.”
“Me too, buddy. Me too.”
November 7, 2016 @ 12:47 pm
Carrie, bless your heart, you don’t fail every day, and you deserve an A+ instead of a D+. From one autism mom to another, give yourself more credit and cut yourself more slack. Man Wearing a Pinstripe Suit could be replaced, but no one can do your job. Hang in there!
Fondly,
Pam, Alex’s mom
November 7, 2016 @ 12:48 pm
I would give you an A+.
November 7, 2016 @ 2:07 pm
Yes to this!!!! And while you are writing about your son Jack, this could have been a post about my 10 year old son Elliott. Who has all of the same diagnosis as Jack…autism, severe anxiety, amblyopia, and strabismus. We’ve yet to deal with headaches yet…but my 9 years old daughter is taking care of that one for us, lol!
I think a hundred times a day, “I suck at this”, ” I am failing miserably”, or some other variation of self loathing…as I work harder poor out more of myself out than I EVER have at any other point in my life. How can one give so much and yet feel so worthless?!
Thank you for these words and reminding me I am not alone in this. Hugs and prayers to you!
November 7, 2016 @ 3:49 pm
Carrie, you are an inspiration to all mothers. Your willingness to share your experiences is greatly appreciated. No mother is perfect, and I definitely believe that as long as we are doing our best, striving every day to be the best moms we can be, we deserve an A+++.
November 7, 2016 @ 4:04 pm
I feel it too, but I’m the dad. The mother deserted us when she was 7, but my parents helped so I could work and keep the insurance, etc., while they were still alive. I was able to retire early, so when it became impossible to work and keep good caregivers after she finished school at age 22, I quit the outside job. She’s now almost 32, has no way to communicate except by pointing and smiling, and can’t indicate when or where she hurts, except to cry. There are no relatives. I pray that there will be a group situation that works for her when I can’t do it anymore, and tell her weekly I wish she had a better dad. But I believe God gave her to me, instead of billions of other dads, for a reason. So I keep on loving her and giving her all I’ve got. We all do what we can, which is so much more than we ever would have imagined. God bless us, every one!
November 7, 2016 @ 5:52 pm
Love, love, love the truth in this. Thank you for sharing your story. I am at a University hospital watching my sweet girl getting electrodes glued to her head for a long term eeg study. Maybe someday we will find a way to control the seizures she suffers. She tells me her Autism is her strength but epilepsy is her curse. We are all on a very special team few people understand.
November 7, 2016 @ 5:58 pm
Don’t beat yourself up, Carrie! You are the best mother Jack could have, that’s why he was given to you. You are strong and loving, and you know him better than anyone else. Yes, your life is not smooth and easy, and continues to be quite a challenge, but you never give up. You are not a quitter!! You continue to do the best you can raising five beautiful children. I give you an A+!
November 7, 2016 @ 6:20 pm
Carrie, I love reading each week. I so get this. I so get you.
And to Melody, “How can one give so much and yet feel so worthless?!”…I so relate.
Hang in there, everybody.
November 7, 2016 @ 10:46 pm
You deserve a A+ in my book. You did not fail because you made the appointments and took him in to see what was causing the headaches. Your love for each of your children is so apparent each week while reading your blog. You are strong, loving, and just the “perfect” mom for each one of your kiddos.
Janet
November 8, 2016 @ 3:53 am
“I fail every single day. That’s what I do.” That cut me like a knife because that is exactly how I feel. Like I’m never doing enough for my son. “And what do you do?” I would have answered, “oh, just the toughest, most stressful and beautiful job in the world – I’m a Special Needs Stay At Home Mom”. A+ in my books!
December 1, 2016 @ 7:01 pm
Hi Carrie. Thank you for writing your thoughts down. I found you because of your BMI Dr Appt post. It hit home for me. I have a 13 year old son with Epilepsy. A chubby kiddo with anxiety, low muscle tone and no feeling of fullness. Ever. Its painful to visit the Neurologist every six months and talk about why my kid, who only eats three meals and a snack a day continues to gain weight. He also had a lazy eye. It was really, really prominent, but they did a minor surgery and it’s better. Maybe his eyes are seeing better. Anyway. Bless you. Keep writing. Try not to beat yourself up too bad. We all do. I understand your isolation as I stayed home for 8 years. You are making a difference. Much love to you and your family.
January 17, 2017 @ 10:06 pm
You are doing a wonderful job, Carrie! However, I really relate to your feelings of inadequacy at times. I have five kids with one first grader on the spectrum and my oldest just diagnosed with ADD and anxiety. It’s a tough job. Thank you for sharing your world with us. It means a lot!
November 13, 2018 @ 3:18 am
Hi Carrie,
I happened upon your article while searching for something else, but I’m glad I did.
Many years ago I was dealing with a daughter with behavior problems plus a husband with dreadful migraine headaches. To my surprise, we learned that the reason for both was what I was cooking and serving.
We discovered that some of the synthetic additives in our food (such as dyes, artificial flavors, fake sweeteners, some preservatives) were triggering both issues and when we removed them and began using similar, but better products the changes in both symptoms were fast and dramatic. That was many years ago and we continue to enjoy the benefits, plus many more.
This led to my volunteering in a nonprofit support group (The Feingold Association of the US). I have also written a book on this and you can read all of part one (free) at http://www.feingold.org. The book is titled “Why Can’t My Child Behave?”
Some of the many families my colleagues and I have helped have autistic children. And, by the way, some have children who have had various vision disorders.
Our program is quite simple. It involves buying groceries that are free of certain additives and also temporarily removing some foods that are very healthy and are well tolerated by most — but not all — people.
Generally this change in food brings about major improvements for autistic kids, but sometimes we hear back from a family whose child no longer has any autistic characteristics!!!
You are welcome to contact me if you would care to have more information.
Jane
PS The American Academy of Pediatrics recently announced that they recognize food additives can trigger ADHD symptoms. Slowly, the medical community is beginning to understand that consuming additives made from petroleum is a really bad idea!