seven years.

 

Greg and I celebrated our 7th Anniversary on the 28th of September.

Usually we plan our Anniversary together, just choosing somewhere great to go to dinner, but Greg surprised me this year with a weekend in Park City. He arranged the hotel and babysitter in advance and had the hardest time keeping it a secret. He ended up telling me a few days before and I loved that he couldn't wait.

Saturday morning we drove our kids up to the cabin and dropped them off with Geir & Margaret and then headed down to Park City. We went to the outlets to shop and have lunch and then headed to our hotel. We stayed at the Park City Hotel, which was so nice and had the most beautiful views of the mountains from our hotel room. That night Greg took me to dinner at Ruth's Chris (my first time), where I about died over the deliciousness of my roasted chicken and mashed potatoes (OH MY GOSH) and then we saw a late night movie together. The next morning we slept and slept and slept (heavenly), had a long brunch, and then went to get our kids, which I had just begun to miss.

It was the perfect way to celebrate our 7th anniversary and we had a wonderful time away from reality for a little while. I'm so glad to be married to my Gregory John. I love that he is excited to spend time alone with me and is thoughtful enough to plan a little getaway to make it happen. It truly meant so much to me.

This past year, our 7th year of marriage, has been our hardest year, by far. No one could argue that having newborn twins and a toddler diagnosed with Autism in a year would be difficult. At times, this year has been desperately stressful. But, it has also been such a beautiful year, for so many reasons. I cannot talk about the way that Greg has loved and supported me this year without tears coming to my eyes. Truly, every time I think of it, I cry. When I think back on this year, I know I will remember his strength first. All the nights (countless, endless nights) he spent holding me and comforting me, talking me through my fear and pulling me out of the darkness and back into the light. I survived Evie's diagnosis because of him. I got through it because I had him by my side. Greg has such a strength and a quiet confidence about him that fills me with peace and comfort, when nothing else can. He has always been the calm to my crazy. We have weathered some serious storms in our 7 years, and we've come out on top. How I love this man, our perfect little children, and the beautifully flawed and happy life we have made together.

tonight you are 11 months old.

written on 10.8.13
Dearest Will and Nora,

There are moments these days, in the middle of the night, when the world is blue and fuzzy, when one of you inevitably wakes up. There is the heart racing swiftly to the sound of your cries, the eyes shutting tighter, the body turning hesitantly toward the moon, when I do not want to lift my weary legs up, or out, to meet you.

But, I do.
Always.

There are moments when I come to you. To you, my Nora. Or to you, my Will. And lift your warm body from the bed, place your blankie under my neck, on my chest, and your head falls against me, softly.

We sway.

There are moments, in this silent hour, this 2am, when I can feel all the world shift slightly to make room for us there. Me, your mother, and you, my baby. We rock peacefully to the beat of our lullaby. And it is in these moments, I find myself resting, finally. Breathing, steadily, in and out. Feeling your heart pulse against mine, stroking your soft, blonde hair. It is in these moments that I find my serenity.

There are moments when it feels as if all the worry the world holds lives right inside me, on my chest, on top of my lungs. At times I feel as if I weigh 1,000 pounds. My body, like lead, moves slowly, heavily, through the motions of caring for all of you. You, up the stairs and back down again. And me, exhausted, depleted, reaching out for something to grab on to.

And then one of you looks at me, a beaming, bright smile. Drool, like honey, falling from your rosebud lips. You, crawling towards me, falling on me, pulling yourselves up and into my lap, to find your place here, on top of me.
And I am weightless once again.

Today you find yourselves, 11 months old.

And I should be writing about you, my darlings. About you standing up on strong little legs, and then plopping down softly, a hesitant landing. About the waving and clapping and the signing of "more". You, pointing to the picture of the tractor in the book, looking up at me with eyes of wonder. Watching my lips form words, "ba ba ba?" you say. "Ba ba BALL" is my response. You, eating everything, banging your hands up and down on the highchair for more. You, giggling from the crib in footie pajamas as your big sister circles the room like a hummingbird. You, watching her intently, and you laugh, as she dances for you. And you laugh, because you love her.

I should be writing about you, my babies. But I can't tonight, for tonight I only have the words to say what you have done for me. You, my miracles. You, who came so suddenly, so unexpectedly, into the world. I wasn't looking for you, or praying for you, or asking for you, and I didn't know how desperately I would need you. But, He did.

I hold you there, at 2am, in the silence of the love that settles around us.

And you hold me.
Hold me up, hold me together, hold me on, until all I feel is the goodness of this life we share together. Until all I can see are your eyes falling quietly toward the earth, your body relaxing under the weight of my arms, your fingers grasping softly.

I know I am where I belong. And I know you are where you belong. And Evie is where she belongs, sleeping peacefully down the hallway. And the sun will rise tomorrow and we will struggle, and try, and make our way through another day.

We will hold each other as we go along.

Love,
Mama

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?

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.

you, at six months: will.

William,

You are almost 7 months old! Here's a glimpse into your personality right now.

You are the sweetest, calmest, most content little babe there ever was. If all babies were like you, the average size of families in America would be something like 25. You never cry, and only make the quietest little whimper when you are upset accompanied by big alligator tears that just melt my heart.

You are still a spitter, but you've improved a lot over the last 2 months. Your tummy is happy these days.

You are a Mama's boy. Or maybe I am just a William's girl? You have me wrapped around your tiny finger in a big, big way. I cannot resist your sweetness or the way you squirm and kick your legs and arms and squeal when you see me to try to get me to pick you up. It works every time.

You love to sleep on your tummy and will roll there to fall asleep no matter how many times I place you to sleep on your back. You always wake up first in the morning with the softest little noises and a beaming smile.

You are skinny and long with a perfectly round face and really thick blonde hair. You drool nonstop and have permanently rosy cheeks and huge blue eyes. You are gorgeous.

You love Nora, but you don't like her to get in your space too much, it stresses you out. You especially don't like it when she gets excited and reaches for you but just ends up scratching you instead. This is a constant issue between you two.

You can be shy and have a bit of stranger danger. You prefer to be held by Mom and Dad.

You are more reserved and observant in your personality and like to hang back and watch things unfold. You give strangers a bashful little smile until you've warmed up to them and then the giggles and personality come out.

You just cut your very first tooth on the bottom two days ago.

You love rice cereal, are a PRO at eating, swallowing and grabbing the spoon, and you want a bite of everything else, while we're at it.

You love to stand and have a strong little body. You aren't much of a cuddler because you stay stiff. If I lay you in a chair to play with a mobile you will flex your little tummy and do a crunch until you are almost siting upright. You can sit up in the boppy and are close to sitting up without it.

You are the calm and peaceful in our family. You make the world stop spinning when things are hectic and crazy. I am so grateful for you, William, and I love and adore every thing about you.

These past six months have been a total pleasure. Please never grow up. I can't even bear to think of it. Oh, the heartbreak.

All my love,

Mommy

you, at six months: nora

 

Miss Nora Hattie,

You are almost 7 months old! Here's a glimpse into your little personality at this age.

You are the perfect combination of fiesty and sweet. You are both things, simultaneously, all the time. When you are happy you are really happy and when you are mad you are furious. You switch between the two emotions effortlessly, but you can always be coaxed to smile even in the middle of a shrill scream (you have a really, really, really, loud cry that pierces the air and drives your Dad nuts). You are the happiest when you are watching Evie play or getting tickled or kissed and you are the maddest when you have to wait even 2 minutes for your bottle to be made. 

For the record, I love your fiestiness. I love that you know what you want. I love that you have opinions. I love that you are strong willed and passionate. These are all great qualities that you may or may not get from your equally feisty mother (bless you) and that served you well when you were fighting for you health in the hospital for so long. You are brave, Nora.

For as fiesty as you can be, you are equally sweet. You have the most darling smile on planet earth centered between two of the chubbiest cheeks. You giggle, all the time. You smile easily and automatically and you are social and friendly and happy. You love to be tickled, you laugh when Evie passes you, even if she hasn't done anything particularly funny. When you smile it's from ear to ear and your whole body tenses along with your face.

You aren't so sure about rice cereal. You're warming up to the idea.

You are soft and squishy and a total cuddler. We LOVE your hugs and your open-mouthed kisses and your silky soft skin.

You have a chubby little face and fluffly duck hair that sticks straight up. Your eyes and hair are the darkest of all 3 kids. You are completely edible.

You love Will and you want to be near him always. You like to roll to where he is and reach for him, touch him, and scratch him. You smile when you see him. You are a doting sister.

You are the happy and joyful in our family. When I wake you up in the morning (you always want to sleep longer than Will) you give me the biggest smile and you curl into my body as I lift you to me. I get so excited to play with you and cuddle you and make you smile. You bring me joy every single day and I can't imagine my life without you.

I think you are so special, Hattie girl. I think you have been special, right from the start.

I love you.

Mommy

a little photoshoot together.

o

 the day they turned six months.