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.

evie turned two.

A few pictures from Evie's little birthday party at the beginning of the year. She was such a happy little birthday ham this year and loved the attention. We sure do love you, Evie Jane! I hope you had a magical birthday.

 

you, at two.

Ev, I promise your hair looked perfect 5 seconds prior. You have a way of messing it up that is just unbelievable. It's a talent of yours, really.

To my Evie Janey, Evie baby, Evie girl, Boo-boo,

YOU ARE TWO! Here is a glimpse into little blonde, blue-eyed (with so much green/brown in one eye you almost have two different colored ones), tall, skinny, funny, happy little two year old YOU.

As a two year old you are BUSY. As a two year old you EXHAUST me! By the time your Dad gets home I can hardly see straight or think clearly, because all I can see or hear is YOU! You are LOUD! You are VIBRANT! You are EVERYWHERE! You are bursting with enthusiasm and joy and so much life. How I love, love, love that about you! Never lose your zest for life, sweet girl. Never lose your sparkle. You light up everything and everyone around you. You just SHINE.

As a two year old you are defiant. You don't like to hear "no". You give me a dirty look when I say it to you and you like to push the boundaries and attempt the behavior a few more times just to be sure I don't like it.  You find it interesting when you aren't supposed to do something, but that doesn't mean you aren't going to do it. I am ushering you out of my makeup drawer and away from the toilet (you like to dip your toys in it!) and out of my bedroom closet (etc, etc, etc) all day long. You love to surprise me. You love to be silly. You LOVE to sneak into the babies room when they are sleeping and run around in a circle in between their cribs loudly yelling "SHHHH, SHHHH, SHHHHH!!!!" until one of them inevitably wakes up. You can be a STINKER! You can be difficult. You are SO MUCH FUN.

As a two year old you are still a feather, but you are finally chunking up in a way that is noticeable. You always eat your breakfast, you usually eat your lunch and you rarely eat your dinner. You love blueberries and pita chips and ham and eggs. You eat your vegetables without complaint and have been known to want bites of my salad. You like yogurt with granola and pasta with red sauce and you LOVE Norwegian pancakes made by your Dad. Breakfast is the best time of day to load you up with the good stuff--you'll gladly have an omelet or a pancake, a waffle, some toast, fruit, bacon, orange juice-- you like it all and then it is pretty much down hill from there! You throw everything on the floor the second you're finished. And I mean the SECOND.

As a two year old you are adjusting to life as a big sister. And that's just the best way to describe it. It's an adjustment. I know it is hard for you to go from being an only child (and being doted on and obsessed over as only an only child is) to 1 of 3 children overnight. But you are handling it and I am so proud of you. Some moments you seem excited about your little siblings and you want to kiss them and pat them and point out their eyes and ears and noses and other moments are just jealousy. You have a hard time when I am feeding them. It lasts too long and you feel left out and will often sulk or act out during the process (your favorite is to throw something because it gets you immediate attention, albeit negative, you know I hate it.) I can't tell you how my heart breaks in these moments when I can tell you feel lost. I know you just want me--my adoration and love and full attention--and I feel so bad that I can't give it to you right then. I promise I am trying my best. I promise you we will figure this thing out. I am still yours heart and soul, girlfriend. Nobody loves you like I do.

As a two year old you are a TALKER! But not quite English yet. Lots and lots of gibberish with plenty of real words mixed in. You can repeat almost any word I say to you, but you aren't using these words to communicate in a way that makes sense just yet. Your vocabulary has taken a back seat to your walking these past few months (YOU FINALLY WALK- SING PRAISES!!) but you are still crazy excited to communicate and full of expression and tonality and hilarity. You never stop talking. Never, ever. Seriously, sweetheart, sometimes it would be nice if you would stop talking.

As a two year old you do things your own way. For the longest time everyone was worried about your walking. I took you to the physical therapist and I let them diagnose you and examine you and say this and that about you and meanwhile my heart always told me the same thing, "she will do it when she's ready". You just weren't ready. And then, one day, you just stood up and walked. It was as if you just decided it was time and now you were going to walk and what's the big deal (it happened the night before I had the twins, for the record). And now you walk. Now you RUN. You do things your own way. You march to the beat of your own drum. You have taught me so much about motherhood in the process. I learned to trust my gut and my intuition, because in my heart I knew it wasn't about your feet or your shoes or anything but YOU and your own belief in yourself. I knew you would get there in your own time, in your own way, and you did.

As a two year old you are fun! You are so happy and silly and man are you CUTE! You love Mickey and Minnie, baby dolls, books and any stuffed animal. You pat your babies backs and shush them to sleep. You read to yourself, pointing at the pictures and making up narratives and turning the pages like a little teacher. You love to watch movies, especially Tangled and Rio, and you dance like a maniac and sing "hey! hey! hey!" during the songs. You love to make movies with Mommy (I have a million videos of you just being a ham for the camera) and listen to music and wrestle and be tickled on the floor. You come and pat me playfully when you want me to tease you or chase you or play with you. You yell "MOOOOMMMMYYYYY!!" the second you wake up in the morning and cannot wait to start the day. You like play dough and Doc Mcstuffins and you'll still cuddle with me in the afternoons. You sleep with a ratty old piece of fabric known as your "sleep sack" and you still suck your thumb like a little lover and your eyelashes are longer than mine and you're just DARLING.

As a two year old I cannot imagine you being any cuter. I cannot imagine you being more fun or vibrant or funny or full of life. Mostly I just cannot imagine life without you.

You light up everything you touch, little one. You radiate sunshine and joy and you have made these past two years the best. Thank you for all of it, Evie Jane. We couldn't love you more. I'm telling you, sister, YOU ARE IT.

Love, 

Mama

month nineteen.

Dear Evie Girl, You are 19 months old!

Here's a glimpse into your little life and personality at 19 months.

At this age, you are such a little ham. You love attention, you love to be funny, you love looking at yourself in the mirror and making eyebrows at people. You love taking pictures and watching videos of yourself. You are happy, happy, happy and so much fun to be around. I hope you never lose that aspect of  your personality, because you bring sunshine to everyone around you.

You love to talk and you NEVER stop doing it. You are getting really good at mimicking phrases we say and you love to carry on pretend phone conversations, conversations with your babies or read books to yourself out loud. Yesterday was a hard day for me and I was upset when your Dad came home and you heard him kindly say to me "are you okay?" and ever since then you've been tilting your little head, looking up at me with those big blue eyes and saying "yew otay?". You are constantly copying us like that, it's hysterical. Besides the usual words you've been saying for months, some of your other new favorites are ball, happy, please, nose, toes, and every variation of Mama you can think of (you now say Mama! when you are demanding something of me, Mom!? when you don't know where I am and Mommy when you are just being sweet. Mommy is my favorite).

You still love animals. Reading about them, talking about them, seeing them and going over their sounds are your favorites. You've got the greatest little "meow!" for a kitty and the funniest "quack quack!" for a duck. You know all sorts of animal sounds, but those two are your favorites.

You are starting to get really interested in body parts and are learning where your nose, eyes, mouth, ears, belly button and toes are. You love to point these parts out on other people, too and will point and say "nose" when someone picks you up and you can see them face to face. You love to look at your belly button and then Mom's belly button and then laugh (for obvious reasons, Mom's belly button is an outie these days).

You still love babies and are so sweet with yours. You will find your little doll, say "baby!" and then make this little "ohhh ohhh ohhhhhh" sound (that I guess is supposed to be your interpretation of the way a mom talks to a baby?) and rock and pat baby on the back. You love to pretend to feed them, brush their hair, give them baba's and wrap them in dish towels before you tuck them away in my kitchen drawers (that one's my favorite).

You still aren't walking, but you've made a lot of progress this past month. Before we went on our trip to California, you were still so stubborn about even walking with me holding both your hands, and by the time we got home your attitude had changed a lot and you seemed to want to try again. This week you've been walking next to me just holding one of my hands or even one finger and you are doing so well with it. It's crazy to me that you can do that, but you still aren't brave enough to even try to stand up by yourself? You are much more capable than you realize and still need to get over your fears. We love you just the way you are, but don't crawl forever, okay?

You are a social little thing and that is what makes me most excited about these twins on the way. You love to have friends, play with others and wave and smile at every little person you see. You are going to be such a good big sister and I know you will be so happy to have two little playmates all the time (you get really bored with just me). I know there will be a lot of drama with 3 little ones so close in age, but I can't even imagine how much fun the 3 of you will have either. I'm so happy for you to have your little brother and sister coming soon.

You went to Nursery at church for the first time a month ago and you loved it. I thought you would do fine going and you did. You are so confident and friendly you thrive in situations like those and hardly notice when we walk out the door. It made my heart ache a little to peek in on you and see you sitting in the corner playing with the dolls by yourself or at the snack table eating goldfish crackers and nilla wafers. I am not ready for you to grow up just yet.

You are a busy body and you are constantly into everything all the time. You follow me all around the house and make messes in whatever room I'm in. You are obsessed with the kitchen drawers and spent months opening the lowest one, taking out all the dish towels and spreading them all over the house. Since I'm kind of a neat-freak this wasn't my favorite. Finally I realized that I could probably teach you to put them back when you were done with them and you would stuff them all back in and shut the drawer before crawling away. Now it is basically "Evie's drawer" because you are constantly storing your little treasures in it. When you opened the drawer tonight as I cooked, I saw a few books, a doll, a leaf, a tube of my lipstick, a sharpie, a piece of Tupperware and a rubix cube in there.

You are such a sweet, funny, loving, beautiful, smart and special little girl. You make my life better and happier in every way and I couldn't ask for anything more than you. We love you so much, Evie Janey.

Love, Mommy