Monday, September 30, 2013

sweet signs of hope, indeed.


The essay I wrote after Evie's diagnosis was shared over at Where Did The Bird Go on Friday. Chelsea calls these stories "Sweet Signs of Hope." And although I'm proud of the words I wrote, and I DEEPLY meant them, I'm not sure that what I wrote really illustrates any of those sweet signs of hope I see in her. The words were written more from a place of denying and then accepting this new reality. Hurting, but also beginning to heal. It was an essay written about me, really. About being her Mother. But, this really isn't about me, it's about her. And there is so much more to say about her. There is so much more to explain. There is so much life in my little girl. Daily, hourly, she fills my heart with hope, and with pride. She is learning so quickly now, each day finding her way closer to where she needs to be. Its only been a few weeks since I wrote that essay and already I'm in a new place with my feelings about Evie's diagnosis. Already, there are SO many new signs of hope. I wanted to share some of them here.

(Disclaimer: I am slightly hesitant to share these. If you don't understand Autism it might be hard to understand the significance of these things, especially if you're comparing her to your typical child. I hope you'll understand that some of these things are miraculous feats for a 2.5 year old with Autism.)

-Evie sitting in her high chair eating a snack at Nana's house. My brother Scott, who no longer lives there, walks in. "Hi Evie!" he calls out to her. "Scott?" she says, smiling at him. She turns to me, "it's Scott?" she asks. "Yes! Yes, Evie! Scott! It's Scott! Good saying Scott!" I can't remember EVER trying to teach her his name.

-After being away from my kids for a 24 hour anniversary getaway with Greg we return to pick them up from their grandparents. I come inside the cabin and call out for Evie. She turns at the sound of my voice, a huge smile on her face and runs to give me a hug and a kiss. "Mommy!!!" she calls.

-At bedtime I ask her to please go get her blankie and bring it to mommy so we can go "nigh nigh." She runs to the next room, climbs on the couch to reach it, and comes toddling back dragging it behind her. "Nigh Nigh" she says, handing it to me. "Let's go nigh nigh."

-Looking at her picture book and labeling the items as we always do, but this time Evie points to every picture as she says it. "Snake, car, cat, frog, fish, dog, moo, baah, bear, ball, milk, baby, cake, outside, shoes..." Point, point, point. Are you seeing this, mommy? I see a ball, do you see it, too?

-Evie sitting on the couch when Nana gets home from church. "Hi Evie!" She calls out. "Nana!" Evie responds, as usual, but then a tiny little hand pops up and waves.

-Evie playing a little game of chase with Will. He crawls toward her and she runs away squealing with delight. After a little while, he turns around and begins to crawl away. "BAAAAABBY!!!" She yells at him sternly, clearly demanding he stay there with her.

-Evie asking me to "eat" for a "snack" or a drink of "milk." Requesting, with words, to "go outside, go downstairs, watch Mickey, go nigh night, get down, get out, put on her sleep sack, take off her shoes." Communicating all of these desires effectively when 3 months ago she would have not known how and simply cried instead.

-Evie, at family dinner, as we cut a birthday cake and sing "Happy Birthday to you"...I'm watching her as the rest of the family watches the birthday boy. A huge smile on her face, she wiggles and bounces to the song as we sing. Not knowing how to sing along, but wanting to be involved, she simply sings out "HAPPPY!!!! HAPPY!!" from her little position in the back, beaming with joy.

-During lunch I'm practicing the signs "more" and "all done" with the twins as we eat. Evie knew them too when she was their age, but lost them. "More, more!" I say as Nora taps her hands together for me. In the corner of my eye I see little Evie watching her, making the same sign, once again.

-Leaving the cabin, saying goodbye to grandma and grandpa. "Goodbye Evie!" Grandma says. But I know she probably won't respond (Even though she has close to 70 or 80 words now, and is verbal, hellos and goodbyes are among her biggest struggles). "Goodbye!" calls grandma. And miraculously comes a confident little "bye bye" from Evie Jane.

-Nora playing with a toy when Evie yanks it away. Nora starts to cry. "Evie," I say, "you have a turn with the toy and then you give it back to Nora. Okay, Evie's turn with the toy...now Nora's turn with the toy," I tell her. Immediately, she bends down and gives the toy back to her little sister.

-Evie sitting with me in the living room playing with the shape sorter. Each one she gets in elicits an enormous applause from me. "Good job, Evie Jane!" I cry! "Good putting the shapes in!" All day long, now, I am saying these things to her. She obeys me when I ask her to put something back: "good listening, Evie! Thank you for listening to Mommy!" She starts to run down the street but turns around when I call out to her: "Good listening!" I cry. She comes to me in my bedroom, communicates to me that she wants the ball on the shelf she cannot reach: "Good asking!" I say. All day long I am saying these things to her, and in her eyes, I see it. A spark, a shimmer, that recognition of pride for a job well done. She is speaking to me, I am hearing her, and we are finding our rhythm. At night I lay her down in her bed, "Goodnight, sweet girl," I say. "You were such a good girl today. Mommy loves you. Mommy is proud of you." She gives me a kiss and a little squeeze, and I can see in her eyes, she gets it.

Autism can sometimes feel like a great disconnect between you and your child. You are crying out, struggling to reach a child who does not want to be found. Losing Evie; that is what I feared most. I thought, if they told me that Evie had Autism, that's what would happen. I thought I would lose her.

But each day it is becoming more and more clear. I am not losing her, I am finding her. We are not struggling apart from one another,  we are constantly reaching out for one another, embracing in our struggle and in our understanding. So much of the frustration of this past year is beginning to fade away and I feel that I am seeing her clearly, once again.

"Mommy!!" She calls out to me upon my arrival, her eyes sparkling as she runs in for a kiss.

 Remember me? I'm the one who loves you.



Saturday, September 14, 2013

the gift of empathy.


I've been thinking a lot lately about Nora. About Nora and NEC, to be more specific. It seems strange to me that it was only 9 months ago that my tiny Nora was laying in that incubator up at Primary Children's NICU with a pic-line in her chest and a warm pack on her tummy to ease the pain of slowly starving. It was the hardest thing I'd ever done at that point in my life, sitting in that chair in the corner, watching that baby starve. And yet, I hardly think of it now.

When the twins were first born and in the NICU at LDS Hospital, I spent a week in a tiny, cold little room on the Maternity floor by myself so I could nurse them. Greg stayed home with Evie, and the hospital let me stay there on "hotel stay"--I used the room and they left me alone. There was a tiny little window in the corner and it snowed almost the entire week I was there. I lived my days in 3 hour increments; an hour with Nora, an hour with Will, an hour in my little room, and then, repeat. It was only a week before Nora came home, but my loneliness magnified the time and made me feel certain I would be there forever. I remember at one point, my friend Lindsay made the drive up to the hospital to visit me and I just sobbed the entire time she was there. I felt so stupid to be sitting in the corner of the lobby, opening her gift to me, with huge, hot tears streaming down my face. I couldn't get it together, I couldn't even talk to her, I just cried. It was one of those hard moments that you're certain will last forever, but of course, it didn't.

Sometimes I think back on this year and wonder what I've learned. It's been such a big year for my family, a really hard year, if I'm being honest. And I think about it and I wonder. Why do these things happen to us and what have I learned from all of it? How have I changed? When I think of Nora's time in the hosptial, I don't remember being heroic or strong or wonderful, I remember being sad. I remember being angry, even. And then I wonder, did I waste it? Did I waste the opportunity to become better?


And then I hear of our family friends who are in the same NICU with their own twins, one of which is fighting for his life, and I feel gutted. The memories of my own tiny babies, so fragile and helpless come flooding back to me and I am filled, to the brim, with empathy and love for them. So much so, that it brings me to tears every time I think of them. While we're driving to grab lunch, or while I'm brushing my teeth, or slicing an apple in the kitchen. Hot, salty tears running down my face, and buckets and buckets of empathy.

Sometimes I think back and remember what it felt like to be carefree. Sometimes I go back before Autism, before therapy and early interventions, before NEC, before the twins, before gross motor delays, and low amniotic fluid, and 7 weeks of hospital bed-rest.

There I am.
I was carefree.

Sometimes I miss those days, those days of thinking that bad things would never happen to me, or to anyone I loved. I was completely naive to the trials others were going through. Completely oblivious. It was easy to be. It was an easy road to travel, thinking that my life would always be good, be perfect, even. And then, I realize, that's how I've changed.

Empathy.

I don't know what I learned from 7 weeks of hospital bed-rest with Evie, except for what it feels like to go through 7 weeks of hospital bed-rest because of a high-risk pregnancy. I don't know what I learned from the twins, the NICU, Nora & NEC except what it feels like to experience something like that. And I don't know what I'll learn from Autism, except, maybe, what it feels like to have a child with Autism?

To wonder if your baby will live or die. I get that, I remember that, I know that pain. And it has changed me. It's in the quiet sadness I feel for our friends, or the gratitude I feel when I hold sweet Nora, tickling her thighs and watching her shriek with laughter, and remembering that once, not too long ago, I thought that I might lose her.

I suppose it would be easier to erase all of it and go back to that time when life was easy. When I didn't know what any of this felt like. When I couldn't relate or understand or carry anyone's sadness on my shoulders. That would be easier. But, I wouldn't choose it.

I wouldn't choose to let go of the relationships I've built with so many life-long friends who've walked beside me during these things. Friends who understand suffering, and loss, and worry so big it feels like it will crush you. To have that relationship that's built on something so shared and sacred. That's a blessing. I wouldn't choose to give it up. I wouldn't choose to let go of the memories of service. The miracle of watching others surround us with love and kindness and hot meals on our doorstep.

I wouldn't choose to let go of the hard things, even though that would be easier, because I wouldn't choose to let go of the empathy. I wouldn't choose to undo the experiences that have filled me with humility, taught me that life goes on, things get better, tomorrow always comes, and time softens the blow.

I'm hoping that eventually I'll get there with Autism, too. That eventually I'll look back and realize that I wouldn't change it. I'm not there yet, not even close, but I hope that someday I'll understand this well enough to be grateful for it. To be filled, to the brim, with the empathy for another person that somehow makes all of it worth it.

I think, so far, that's what I've learned.


I'd love to hear your perspective on this. What do you feel like your trials have taught you? 
Were the lessons learned worth the heartache or would you just undo it all, if you could?

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.