to the mother with the screaming son at target.

I noticed you almost immediately. We were browsing the dollar section, looking for something to put in the Easter baskets when I first heard his cries. What you don’t know was that I had fled there that morning. Constant requests and screams for a “CAR RIDE!” from my own little one had driven me to finally toss her in the backseat, buckle her up begrudgingly and hit the pavement in a cloud of stress and frustration. I was feeling sorry for myself that morning. I was wishing I didn’t have to drive all the way across Snow Canyon Parkway and down River Road just to calm her crippling anxiety. I was wishing she wouldn’t scream, and ask me for things ten thousand times in a row, and I was wishing we could just be "normal" instead.

I noticed you almost immediately.

Your son was screaming and arching his back and flailing in your arms. I noticed his dark brown hair and beautiful olive skin. I noticed the chewy tube dangling from his neck, the same one we use, and I immediately recognized his terrified eyes and the way his body was crippling and twisting with crushing panic. I could see my daughter in him. I could see myself in you. 

For a moment I thought about walking away. There were already so many sets of eyes on you, and I was sure you were embarrassed to be wrestling your distraught son into a cart while all of us watched in pity. I am sure you were embarrassed that others pitied you. I know, because I hate to be pitied, too.

As quickly as the thought to 'look away' came, it went, and then I found myself walking over to you, placing my hand on your shoulder and asking you how I could help. I told you that my daughter has Autism too, and although I didn’t know if I could help you, I felt the overwhelming desire to stand there next to you, as all those eyes watched, so they would know we were in this together.

You took his arms and I took his legs and we tried with all our might to get your son to relax his body into that seat. While we worked you spoke calmly to him. You were tender and understanding. You called him “buddy” as he bucked up against your chest and screamed, his fists clenched tightly in frustration. I know I didn’t really get to meet your son that day. I know he was lost somewhere inside himself to a place where we couldn’t reach him. I know you probably wished I could have seen the way he laughs at that one scene in Toy Story each time he watches it, or his quiet precision as he builds a tower of blocks, and then screams in delight as the two of you knock it down together. I know you probably wish I could have seen his sparkle. I want you to know that I imagined it instead.

You don’t know this, but the moment you left the store, I burst into tears for you. I can imagine you walking out of those sliding doors, carrying your son across the parking lot with all the dignity and courage your heart could muster, and then, once you were safe inside the drivers seat, I can see you bursting into tears, too. It's just so damn hard sometimes, isn't it? 

I wanted to thank you for your courage that day. I wanted you to know that I saw it underneath your quivering chin and fumbled words. I wanted you to know that I didn't see you as that frazzled mother you hate to be, but as a mother who would do anything for her child. I saw you as a mother who is doing her very best to build a beautiful life amidst tough circumstances. I saw you as a mother, just like me. 

Thank you for buckling your son into the car, and wrestling him into the shopping cart, and giving this thing all you've got. Someday I might find myself where you were, and in that moment, I will think of stepping forward to stand beside you, and I will know that I am not alone. 

With love,

Evie’s Mom

love, like an ocean.

My life has been consumed by Autism lately.

I go through these phases, is what I'm learning.
Phases where Evie is just Evie, and life is just life, and everything seems okay. And then, out of nowhere, a phase where Evie is "Autistic" and my heart feels too heavy for too long.

I'm still getting used to it, is what I'm realizing. It's still so new. I still kiss her lips 20 times in a row as she smiles that perfect, gap-toothed smile, and wonder when this became part of her? And when parts of her that I've always loved became parts of her that technically make her "disabled".

I still have to remind myself that this is my new life. Every priority has shifted, every perspective has changed. Gone is the mother who was laid-back and carefree, and in her place is me: a mother who spends nearly 100% of her day down on the ground pushing cars, and making "vrrroooooommm" noises, and crawling after them on all fours like a monster, as 3 tiny children giggle and squeal. Because fear, like an ocean, will swallow me whole if I don't.

I still haven't learned how to stop worrying about her. I thought I would get better at that, with time. I thought that accepting it would mean I'd no longer feel the need to over-analyze it. But I still find myself, on the gloomiest of days, absolutely exhausted with worry. I've never known such worry and pressure in all my life. I never knew the world could feel so heavy on my shoulders, so heavy with the promise of another day, so heavy with the list of things that absolutely have to get done. No, I'm not talking about the dishes, or the laundry--those tasks can wait years for all I care. I'm talking about that sweet little girl sleeping down the hall with her blankie and pillow pet tucked safely under her arm, and all those dreams yet to realize.

Tomorrow we will wake up and eat breakfast, we will get dressed and brush her hair. I will remind her to say goodbye to Nana and goodbye to Papa and she will practice stacking blocks, and doing puzzles, and remembering to tell me she "wants a snack" if her tummy growls. She will kiss Will, and pester Nora, and sing along to "Five Little Monkeys" as they bounce and bounce and bonk their little heads on the floor.

And tomorrow I will try, once again, to give her my life, my sanity, all that I am.


I never knew how much I could love her.

bigger than the sky.

I've drafted this essay a hundred times in my head.

I lay down at night and think of what I might say, how I might say it. How I can convey the love, the worry, the heartache, the confusion, or the joy I feel when I think of my sweet Evie Jane. There is so much to say and they're aren't enough words.

I wake up in the morning to the sound of her talking. "Mommy!" she yells, "Kitty! Meow, meow, soft, nice, soooooffft." I roll over and shut my eyes a little tighter. "Beeau??!" she yells, "Where's beeau?! Mommy! Where's beeau?!" I laugh quietly to myself, roll over once more, and then I'm up.

She smiles when I get her out of the crib, like she always does, words spilling out of her. "Where's the quack quack? Where's beau?" Beau is short for "beautiful" and means she wants a pretty clip in her hair or a tutu around her tiny waist. "Quack quack" refers to anything with wings. "Good girl" actually means cookie, or cracker, or any treat that would require her to be a "good girl" in order to get it. "It's a baaaah" means "It's a sheep" and sometimes she gets her lions and kitties mixed up.

Just this past weekend she started saying "car" instead of just "bye bye" and that, in itself, felt like an accomplishment worthy of an Oscar. For months her speech therapist and I have been responding to her excited phrase "it's a bye bye!" with "it's a car! Bye bye car" and finally, FINALLY, she got it. I can tell the word is hard for her to form, for her to manage, her little mouth opens wide as can be with the vowel sound, "CAAAAAAAR?" she asks?

Car.

It's so much, and yet, it's so little. My stomach hurts when I think of other children her age and what they are doing. Asking for the blue crayon instead of the red one and pretending to scoop icecream at a make-believe grocery store. Don't compare, her therapist reminds me, she's on her own timeline.

In many ways, Evie has always been on her own timeline. When your baby was crawling, Evie was creeping, pushing herself slowly from room to room on her tummy. When yours was walking, mine pushed herself up on all fours and finally crawled. She didn't pull herself up to stand until she was 16 months old. She didn't walk until she was almost 2. She should be saying sentences, and for now, we're working on words.

It was May when Greg and I started to really wonder why our daughter always seemed a few steps behind. For so long we'd focused on her gross motor abilities, for so long we'd obsessed over whether she would ever take her first steps. And then that day came and went, and she walked, eventually she ran, but it still wasn't enough.

"Developmentally delayed toddler"--I must have googled that phrase 100 times. At night I'd lie awake and read article after article with a huge knot in my stomach. More often than not I'd stumble on a site that contained the word "Autism" and more often than not, I'd leave convinced Evie didn't fit the bill.

Doesn't make eye contact: Yes, she does, all the time.
Doesn't respond to name: She responds every time.
Doesn't initiate meaningful play with others: Evie LOVES to play with others, I'd think to myself. And then I'd shut my phone off and try to fall asleep.

Still, something nagged at me at night when I closed my eyes. Something felt off, felt different, felt wrong. Something urged me to keep looking.

For months Greg and I played the "what's going on with our daughter" game. A ritual so heartbreaking and all-consuming I wouldn't wish it upon my worst enemy. Making sense out of Evie's every move became a way of life. If she pointed to her nose, we erupted with applause. If she ignored our attempts to join her game, our hearts sunk. We watched and studied her like scientists and we worried. I'll never forget the day I realized that her way of expressing excitement, by wiggling her hands up and down, was actually called "hand flapping", a sign of Autism. And yet, I still spent most of June and July convincing myself she didn't have it.

And then, one day, I stumbled upon an article that explained the disorder in a more broad manner and my heart turned to lead and sunk down into my toes. I could have been reading the words written about my daughter, specifically. Yes, some kids with autism still make eye contact. Yes, some kids with autism still respond to their names. "Autism is a SPECTRUM disorder" the article explained. And yes, some kids with Autism behave exactly like my Evie. And then, it was real.

It's hard for me to put into words the heartache this summer has brought with it. At times the sadness I've felt has been completely unbearable, as sweltering and overwhelming as the heat radiating from the pavement. At times I haven't been able to function, to breathe. At first, it felt like I was grieving the loss of someone I loved. I'd go to bed at night and wonder what happened to my Evie. Where did she go? I'd watch videos of her as a 1 year old, pointing and waving and clapping and giving high fives. I'd cry over the loss of these skills, I'd cry because I don't understand, and I'd cry because I don't know where she's going from here.

I love the article my dear friend, Chelsea shared on her blog about coming to terms with your child's special needs. It describes the process as taking a trip and then realizing you've arrived at a different destination than you were originally anticipating. In that example, arriving in Holland when you were expecting Italy. That's exactly how it feels. I thought we were headed to Italy. All my life, I've wanted to go to Italy, and all of Evie's life I've assumed that's where we were, and only wondered why the Italy we were seeing always seemed to be so different than the Italy everyone described. And then, 2 years into our trip, someone came up to me, shook me hard by the shoulders and shouted, "You're in Holland!"

Holland. That's where we are.

Summer is over, the leaves have started to change, and with the crisp autumn air comes the hope of a new beginning. The dry August heat has passed and we finally have an official diagnoses, written on paper. The words Autism Spectrum Disorder written next to Evie's name still sting a little bit, like lemon juice on a fresh paper cut, but the pain is starting to dull. With all the obstacles ahead I still see a world of promise for my daughter. With all the challenges we face, I still see a world of hope. The worrying and wondering is over and now we get to work. She'll have ABA therapy, and speech therapy and we'll work on teaching her what she is lacking and celebrating all she already knows. At the end of the day, I know that Evie is still Evie. She is who she has always been.  She used to get laugh attacks when I'd try to nurse her to sleep at night and she still loves it when I climb into her crib and giggle with her before bed, our warm foreheads touching and our hands making swirls in the air as we lie together side by side.

She is who she has always been. Autism is part of her, not all of her. It explains only some of who she is and the rest can be explained by her boisterous personality, her infectious enthusiasm and her loving heart.

This past week, we traveled south, to St. George, for one last summer vacation, and now we're headed home. The five of us piled into our car sandwiched between sippy cups and blankies and smashed pretzels on the floor. The sun beats through our windows and the road stretches out before us, endless and wide. In the backseat little Evie whines and rubs her eyes, fighting sleep. As we move on, her exhaustion turns into frustration and she starts to cry. We wait it out, wait for her to eventually pass out, as we know she will, but the time passes slowly. Finally, I turn around to face her, "Evie" I say, "you're tired. It's time to go to sleep. Close your eyes and take a nap in the car. Go to sleep."

Immediately, as if the thought had never occurred to her, she curls her body into the pillow against the window, facing the endless blue sky, and drifts away. And as I watch her, that familiar thrill overcomes me again. The thrill of communicating with her. Telling her things she understands, seeing how far she's come and knowing that words that used to confuse her, now string together to create thoughts and ideas that bridge a gap from her world to mine and find us somewhere, together.

She sleeps peacefully in the backseat with her hand clutching her sleep sack and her platinum blonde hair covering her eyes. She is tiny and brave and beautiful, and as we drive through the quiet desert, making our way home, the hope I feel for her is bigger than the sky.