Tuesday, September 10, 2013

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.


31 comments:

  1. I love you. You're an amazingly strong person and a wonderfu mom. Without you knowing, I've looked up to you many times, a lot lately. When I was told I may be put on bed rest for the remainder of my pregnancy, I thought of you and how long you were in the hospital with sweet Evie. When I am on the brink of crying and falling apart bc I'm so tired from being up all night with my Liam and then unable to nap bc I have jack to take care of in the day, I think of you with your twins- " jes is doing it." And yet you seem to always have a positive attitude, a smile on your face, and looking beautiful. My point is you're amazing and Evie is as lucky to have you as a mom as you are to have her. I pray for you and your family that you at continue to have hope in your heart and when it seems too much to bare, you can turn to our loving Savior to find peace. Love you!

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    1. Oh my, I am so humbled by the thought that you are looking up to me in any way. If that's the case, I certainly need to be better. For one, I am definitely not always looking beautiful, I can promise you that. Thank you so much for the love and support and for always being so kind and complimentary. I am grateful to have such a wonderful friend.

      (And those sleepless nights with Liam will end soon, I promise. Xo)

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  2. My heart is so full of words right now that I don't know how to express to you....but I feel overwhelmed with the thought that Evie couldn't ask for better parents. I know you love her with all of your hearts, and you are amazing. I know that you will rock this. I love you!

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    1. "You will rock this"--I love that. Thank you. It does feel like we are waging war in some ways, and I am pretty grateful to have strongest, funniest, most amazing Kiersti by my side. I love you. And I loved those cookies & DC. Thank you.

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  3. she is tiny, and brave, and beautiful. These are the words that have always described Evie to me. I am glad that she finally has a diagnosis, but you're right, it will never describe who she is. She is Evie Jane and we love her more each day. Love you, Jess.

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    1. We love you so much. Ev has always had a special bond with her Aunt Jennie, and I know you will always be one of her biggest fans. She is lucky to have you, and so am I. Xoxo

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  4. I cried throughout this entire post. You are a great mom and she is the sweetest thing :)

    I am not sure you know this but we went through the same thing with Jackson. Although the outcome ended up being something much different I can relate with reading the articles at night, the churning stomach, watching for every sigh or symptom... I know the feeling all to well and it is so hard. I am sorry you have been through such a roller coaster.

    Please let me know if you ever need anything. She is an adorable sweet girl :)

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    1. I didn't know that. It's been really eye-opening to venture into this world and realize how many people can relate to what I'm going through. It's far too common, but I am glad to know I'm not alone. Thank you for the sweet comment--I am glad your Jackson's story has a happy ending. I know Ev's will, too. Xo.

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  5. Your outlook had always had amazed me Jessica, and this is a huge part of why Evie will always succeed to her full capacity! You are both such wonderful, strong parents, with a clear view of and the right perspective. I hope that having an official diagnosis is bringing you some peace, although I know it brings a lot of heartache too. Knowledge is power, and you are such a fighter for your kids. I just love you to death!

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    1. It is bringing me peace, even though it's hard to slap such a loaded label on her. I know she is still who she is, and who she is is really wonderful. I love you just as much, and I am so grateful to have a friendship that means so much to me on so many levels. We are such big Tuck fans, too. I hope you will find the answers and clarity you're looking for soon. We love all of you.

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  6. You are the most incredible writer ever!!! The way you articulated this and so many of your other stories is just so perfect. I think you will write a book one day!!!!
    Anyways.... Evie Jane is the most amazing little girl and so full of love, laughter, and a passion for life! You should have hope bigger than the sky because I think Evie is capable of all that you hope for her. She is so lucky to have you as her mama and this will only make the two of you stronger, even though I'm sure at times it feel like the opposite. I love you and your sweet family and am continually amazed by how you handle all things that come your way. So gracefully. I wanna be just like you when I grow up! Love you woman.
    --Saca

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    1. You have always been the best Evie fan--we love you for it! Thank you so much for the support, my Saca Pu. I have the best friends and our sushi dates are the best therapy I could ever ask for. You're my favorite. I love you.

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  7. You truly are the best writer in the world! What an amazing post and tribute to your sweet girl! Not sure if you knew but I did Early Intervention for two years when we lived in Idaho. I worked with some really special and amazing kids and I always thought that these amazing kids were always sent to the most amazing families. There is a reason she's yours and no one could be a better mom to her than you! And on the flip side you are so lucky to have her...she's perfect! Praying for you and your family! Hope to run into you sometime again!

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    1. I didn't know that. What an amazing job, we love our EI therapists so much & Evie has improved in leaps & bounds since we started. Thank you so much for nice words and the support. I know Evie is such a special girl and I feel humbled to be her Mom, for sure. We hope to run into you again, too, you guys are a darling trio. Xo

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  8. Wow, what a powerful, touching post. My heart aches for you..the worry, anxiety and stress you must have gone through for your sweet girl. She looks like an absolutely darling girl and I bet your pictures don't even capture all of her cuteness!
    I read a blog by another mom who has twins. They're about 2 1/2 yrs old and literally 2 days ago she found out the little boy has autism. I only bring it up because its sometimes empowering to know someone else is going through it, too. Here's the post: http://nikinikinine.blogspot.com/2013/09/my-son-has-autism.html
    You are a strong mom and little Evie is blessed to have you! Hopefully you can feel all the support coming your way. Stay strong!

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    1. Thank you so much for the kind words. I have discovered a whole new world this summer as we've been going through this--Autism is much too common. I hope the best for your friend on her journey. I appreciate the love and support so much!

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  9. Jess I'm so sorry to hear about Evie and her diagnosis. You are such an amazing example of strength and perseverance. Evie is lucky to have you as her mother. Know that we are praying for your family. Miss you!

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    1. Love you, Brookie. Thank you for the prayers. Keep them coming. You're the sweetest.

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  10. You are a strong and amazing mom, Jess! Despite her challenges, your Evie will reach her full potential. How could she not with a mama and advocate like you? Keep your chin up, like you always do, and remember just how lucky you guys are to have each other.

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    1. That means so much, Caitlin, thank you! I feel lucky to have a friend who understands so much about this on my side. I hope you'll let me pick your brain someday. Chin up, for sure. Xoxo

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  11. So...I don't really know how to respond to this. I think you put your feelings into words honestly & beautifully. I know you will do a fantastic job of researching & feeling out the best way to raise, understand & communicate with her Jess. I know that because I know you. That is an amazing virtue of yours Jess. Not one that everyone has. I love that you wrote she is the same Evie she has always been and I loved your delight at discovering ways to communicate to her. And I think flapping hands are cute!! I just love you. Thank you for sharing this with us. It encouraged me to read up a bit on autism and opened my eyes to things I wasn't aware of & maybe that I can be more mindful about in the future. Best of the best to you all!

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    1. Such a compliment, thank you. I'm glad it inspired you to learn more about Autism. It's such a complex and baffling thing, because no 2 kids are the same. A lot of people have been shocked to hear of Evie's diagnosis, and I think that's good, because it helps broaden the perspective of this disorder. She is every bit as happy, affectionate, loving, caring, silly, talkative, and wonderful as she has ever been. Love you, girl. Thanks for being on our team.

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  12. (I wrote this yesterday and it never posted...)
    Oh Jess! We've been smitten with sweet Evie Jane since the moment we met! She is just the sweetest girl, and just what you said, tiny, brave and beautiful. We can never truly know what is in store for these babes, only that they are so precious and are resilient beyond our belief. I often feel so inadequate to be a mom, to have the responsibility to guide this little one thru this world, and wonder if I am doing a good enough job. You do it with such humility and grace and I have always looked up to you for that. Only thing I know is we were given this job as a blessing and the Lord has a plan. Sweet Evie has a plan too you are the one she wanted to travel to Holland with.:) No label will take away her sweetness, or who she is, and I love what your friend said, that it will never really describe her. We just love her and always for exactly who she is! Thank you for sharing, you are amazing, and capable and have inspired us all with your writing and positive example. You two will move mountains! xoxo

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    1. We love you two so much! I hope knowing what we've been going through this summer helps you have some understanding about my flakiness with the play date requests. I've kind of just had to isolate and figure this thing out for a few months. We adore you girls, thanks for the support.

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  13. Jess...you truly have the gift of writing. This is beautifully expressed and so heart-felt.
    You have been in my thoughts so much since I read your post on Instagram yesterday. I know a lot of people have already said this...but she really IS so very blessed to have such a wonderful, intuitive mother. I admire your ability to keep on going (I love your humor :)) with 3 little ones. It's always so fun to see a post from you and see what you're up to.
    Thank you for sharing this sacred story. I look forward to following along with sweet little Evie and watching her progress and grow.

    xoxo
    Keely

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    1. Thank you so much, Keely. Such thoughtful and kind words, I appreciate them! I am looking forward to watching her progress as well, she has already made so much progress this summer, and we couldn't adore her more. Xoxo

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  14. I havent visited your blog in awhile so I had to come see what's going on. I have always felt a connection to you and your sweet family since I feel our lives had similar paths; Evie has always reminded me of my little girl. As I read this, tears were brought to my eyes. I feel like I know Evie. When I became a parent and had Madelyn in the NICU for 35 days, it gave me a stronger appreciation for the love our Savior and Heavenly Father have for us. And the pain. How much it must hurt them to see us in pain and sometimes walking in the wrong direction. My heart hurts for you. I feel like as a mother, I know that pain you feel yet that overwhelming love too. Know that you're not alone. You're an amazing mother; I really look up to you. Evieis still going to be Evie. Just because she isn't the Evie you thought she was going to be doesn't mean she isnt gonna be an awesome Evie. Im sorry if it sounds like I'm preaching, I just wish your family the best!!

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    1. Btw. I don't blog anymore, just instagram in case you were wondering who this is. Colie_pie

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    2. Thank you so much for this thoughtful and empathetic post. I love that you feel like you know Evie, keep rooting for her! She is such a sweetheart and we can't wait to watch her grow. I know she is still the same Evie, even with such a big label. Nothing has changed, really. She's always been happy and loving and spirited--that's the girl I still know today. Thanks for the support and love.

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  15. The way you are able to express yourself so beautifully always amazes me. You are so strong. Evie and your sweet babies are very blessed to have you as their mama.

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    1. Thank you so much, carlye. I hope you are right about that--it's been a hard gig thus far, but so worth it. Love to you and your cute family. Xo

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thank you for your shout outs!