Wednesday, November 16, 2016

clarity.



I've been trying so hard for days to find the words to say this. How does a Mother ever find the strength to share such devastating news?

On Monday morning, Evie's neurologist called and told me that Evie has Rett Syndrome. For 5 weeks, we've been anxiously awaiting the results of this test, and honestly, Rett has always been our deepest fear. As the most severe form of genetic autism, Rett will likely rob Evie of many of her current abilities as the years pass by. We now understand what a miracle it has been that we've had nearly 6 years without many of these physical symptoms, where many sweet children with Rett lose them all before they're even 2, or never gain them at all.

To say we are devastated would be a gross understatement. There just aren't words to say what Evie means to Greg and I; she is the most special thing in our world. Both of us would do, and have done, absolutely anything to help her. From therapy, to expensive schools, to weighted blankets and vests, to modifications to our home and routines, to dietary interventions, we have tried so hard. This changes nothing in that regard. We will continue to fight with all our might.

The good news is that Rett has been proven to be reversible in laboratory mice, and much research is being done in this field every day. We will move forward with hope in our hearts that perhaps someday there might be a cure.

I know many of you have been grieving this right along with us, and I can't adequately say what it means. I've had so many friends knock on my door just to hug and cry with me, and I have needed each and every one of you. The weight of the sadness we feel is too crushing for us to carry alone. My heart is full of such gratitude for everyone who is helping shoulder it, and for all of you who have sent me your strength and courage. I could never share this news without it.

3 years ago, I wrote a post just like this when I had to tell the world that Evie had Autism, and now, here I am again. I am clinging to the memory of how all of that unfolded the first time around, and reminding myself that what was initially a crushing devastation, soon just became normal life, and with time, became a life we could love.

I know that we'll get there again, and that with time, this will feel normal and will be a reality we can accept, and maybe even cherish. Peace will come. But first, we have to grieve.

I said once to a friend that I would take all of this away from Evie if I could, but that also, Evie's life has resulted in everything that's most precious to me in mine. I mean that more now than ever. She has caused so much growth, love, understanding, compassion, self-discovery, and empathy. It is an honor to be her Mom and to be changed so profoundly by her spirit in all of these ways. She is everything good and beautiful in this world and deserves to be surrounded with all the love and hope every one of us can muster.

A Rett diagnosis is a devastating blow.  Our hearts are absolutely broken, and I won't try to sugar-coat that. But, even amidst a broken heart, I also know that Evie's life is still just as meaningful and special as we ever hoped it would be. More than anything, I pray she continues to dazzle us all with her beautiful smile, and that our family will continue to find reasons to rejoice every day.

We will learn to love this new reality. I know that's something we can always do.
And, for what it's worth, I believe there are still miracles ahead.



Saturday, September 12, 2015

month eight.

Dear Owen, 

Today you are 8 months old. 

Today you have short, chubby legs, pudgy fingers and toes, and a bright, beaming smile. 

Today your hair is still orange--the color of the sun setting low and fiery beneath the horizon. 

Today you reach for me when I go to pick you up and whimper and cling to me when I try to set you down. Today you nurse quietly in the bedroom while your hand caresses my cheek and your eyes study my features. 

Today you finally take long naps in your crib, but you no longer want to cuddle. This is the reason you spent the first 7 months of your life not napping at all, or only napping in 20 minute increments. I cuddled you to sleep for as long as my worn down body could possibly manage it, and I mourned a little bit when it came time to teach you to fall asleep without me. I knew it would happen like this. I hate that it has to happen like this. 

Today you roll and sit and scoot and wiggle, but you cannot crawl. 

Today you eat everything we eat, and cry furiously if we try to sit down for dinner without including you. 

Today your siblings absolutely adore you and smother you with affection and adoration as they lay on top of you and sweetly call you, "Bowie". 

Today you turn 8 months old and my heart is aching and tearing apart within the walls of my chest. Just yesterday, they lifted you out of me and called out "he has red hair!" Just yesterday, I laid on that operating table and wept soft, quiet tears as I knew my life was about to change forever. Just yesterday, I brought you home to our house on Kelso Dune, and carried you up to my bedroom to lay together under the warm January sunshine and watch your eyelids flutter softly as your chest rose peacefully up and then down. 

I have loved you so intensely these last 8 months, at times it has felt like more than any love I have ever known before. Each time I nurse you, I am reminded that one day I will wake up and lift your soft body to my chest and then I will lay you down and never pick you up that way again. 

One day you will walk, and talk, and run, and climb, scaling your way up the barstool to take your place there, the 4th little seat waiting to be filled. 

What a privilege it is to love someone in this way; to hold you with the knowledge that each moment we share is sacred, and divinely ours. What a privilege it is to experience every first time the last time, with you who has made the last 8 months as joyful as any I've ever known. 

Oh, Owen. You have taught me heartbreak. You have shown me what it is to love someone so fiercely in this one sacred moment that you can't imagine waking up the next morning and finding that moment gone, never to return. How are you already 8 months old? 

Some nights, before we fall asleep, your dad and I open the shade in our big bedroom window so we can stare out at the world outside. The lights from the city below dance and twirl and the stars pulse brightly as they burn holes in the sky. Some nights we lay there quietly watching those twinkling lights and feeling so small, and yet so big, with the whole world stretching out below us, and the knowledge that you can be anything you choose. 

Some nights the sight of it all makes my heart ache a little bit for yesterday, and mourn a little bit for tomorrow. Sometimes I have to leave my bed and come sneak into yours, picking you up quietly, and gently placing your head on my shoulder and your warm chest against mine, knowing in this one moment all that exists in the world is me and you, breathing softly, swaying gently, holding time tightly in your perfect pudgy fist before it has the chance to slip away. 

Tonight, you are still my baby, and I am still your world. It is only us as we dance quietly underneath that bright, bursting sky.

Love, 
Mommy 


Sunday, May 10, 2015

motherhood to me.



Motherhood is harder than I thought it would be. Like wayyyy harder. It's also more wonderful. When it's raining outside on a beautiful Saturday morning and I get to take my kids out on the porch to smell the air and watch the dark sky, motherhood is so wonderful.  

And it's hard when you're handed things you weren't expecting. Like sweet babies with special needs, and sweet babies with illnesses, and moments of crippling grief. Motherhood brings me to my knees and has broken my heart in half more than once. 



Motherhood has wrecked me. But, at the same time, NOTHING in my life has ever pushed me to be MORE, like motherhood has. I am grateful its not easy. I am grateful it's not what I expected. I am grateful for everything I am becoming in the process of raising my little crew. 



I am grateful for the way they smell when you nuzzle your face into that crevice underneath their chin. I am grateful for little feet in footy pajamas and little words said incorrectly. I am grateful for the way I am completely covered, head to toe, in children the moment I sit down. I am grateful for blonde pig tails, and hands holding tight to mine, and "mommy will you hold me?" as I wipe the counter after breakfast. I am grateful to be needed, cherished, and forgiven by my children time and time again. 

I am so grateful for the chance to try.



Happy Mother's Day, 2015

Thursday, April 9, 2015

of poop and princesses.

Today I found myself being buried alive under a pile of children.

If there are moments in my life when I wonder how the hell I got here, this was one of them. 

Nora was up near my chest, bouncing up and down on my collarbone, Will was knocking the wind out of me as he marched on my stomach, and Owen was resting somewhere in between. 

Later, I found myself sitting on the hardwood floor in our dining room next to Nora's potty as she tried to go number two. One hand was being used to support Owen as he nursed, and the other was holding Nora's for moral support, per her request. Things got complicated when Nora started negotiating the conditions upon which she'd willingly take a poo and I had to find a way to meet her ridiculous terms less she hold that poop in forever and ever, amen. 

She wanted me to sit on her RIGHT SIDE and not her left (the horror!), she wanted William to NOT sit on his potty at the same time as her (and especially to not sit on his potty NEAR her), she wanted to watch Tangled (expect NO SCENES involving Mother Gothel, you've got to be joking), and she insisted that she must have a bowl of taco soup to eat while we waited, chips and guac on the side (you know). 
 
If there are moments in my life when I wonder how the hell I got here, this was one of them. 

My kids are really afraid of Mother Gothel, you should know. There's this scene at the beginning of the movie when Gothel breaks into the castle, steals Rapunzel, and leaves to go lock the stolen princess away in a tower (I think I just quoted that part word for word THAT'S how many times I've watched this movie) and Will absolutely cannot watch it without me nearby. He runs to hide behind me every single time; his tiny body pressed up against my back, his little arms around my neck, and his face buried in my long hair. Eventually, he'll peek out over my shoulder and ask the same thing each time, "what's haaaapppeening, Mommy?" And then we have to talk about Mother Gothel, and how Rapunzel isn't with her Mommy and Daddy anymore, but she'll be back with them soon, and yes, she's going to be okay, and Flynn Ryder will come soon and then she'll find them again. 

And there's this moment, each and every time it happens, that sort of takes my breath away and puts a lump in my throat. It's something about his little arms around my neck, and his little voice in my ear, and the knowledge that I'm the person who's going to protect him from her. I'm the one he trusts to keep him safe. It's that he finds comfort in the smell of my shampoo, and peace in the sound of my voice, and familiarity in my soft midsection when he lands there...

If there are moments in my life when I wonder how the hell I got so lucky, that is one of them. 

And Nora never pooped. You should know. 



Tuesday, April 7, 2015

to the mother with the screaming son at target.




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

I noticed you almost immediately.

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

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

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

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

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

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

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

With love,
Evie’s Mom





Wednesday, March 26, 2014

dear nora | you, at sixteen months.



Oh, Nora Hattie.

How do I even describe you? You are sixteen months old, Nori, and at sixteen months old, you are a RIOT.

You are growing up so quickly; lighting fast compared to what I experienced the first time around with your sister. I wish I could slow things down. I wish I could keep your babyhood for a little longer. But, I know that I cannot. Toddlerhood shows itself in everything you do.

At sixteen months old, you are busy. You love to climb and try to balance and stand on tiny things that shouldn't be balanced on. Like your toy drum, no wider than a dinner plate. I often find you perched on top, carefully, and then you steady yourself and stand cautiously up. You fall all the time, off of everything. And when you fall, you don't let anyone forget that you've fallen for 10 minutes at least. You love drama.

Nora, you are so sweet. Right now, you are my cuddliest baby. You love to be held, and you give the best hugs, with your head tucked perfectly on my shoulder and your little hand patting my back rhythmically. You often run over to me or Nana or Daddy, carrying you blankie behind you, and want to just be held and cuddled for a good long while.  You smile constantly, at everyone you see, and are always happy. I love to watch you eat your breakfast in the highchair and wait for you to notice that I am watching. The moment our eyes meet you give me the biggest, cheesiest, sweetest, grin.

When you wake up in the morning and see Evie run into your room you call out, "Ebie Ebie Ebie!" and then you'll always say "hi!". You greet everyone that way, a soft, sweet, adorable little "hi!". You have a soft spot for your Daddy and always give him the most enthusiastic welcome home when he walks through the door at 5:45. You run over to him and he lifts you up and you rest your head on his shoulder softly saying, "Daddy". He is totally enamored with you, of course.

At sixteen months old, you understand so much of the world around you. You make me laugh when you bring me your shoes, along with Evie and Will's, and ask to go "owside". You know which pair belongs to which child and you try your very hardest to put them on all by yourself, or put Will's on his feet for him. You also love to hang up your coat, put your hat away, and try you darnedest to buckle your own car seat and highchair. Miss independent. You are always noticing everything I do.

You love to be outside and you love to run. You are a stinker when it comes to going for walks and you don't listen to me one bit. Instead, you run in the opposite direction, and then laugh when I get to you and scoop you up, saying "no". You love to go to the park, climb up the steps, and slide down the slide all by yourself, laying on your belly. You are fearless, and want to be just like the big kids you watch.

At sixteen months, you are the sweetest sister. You are so kind and caring towards Evie and Will. You seem to try extra hard at times with Evie, and will squat down to make eye contact with her while she is sitting on the floor, looking into her eyes and calling her name over and over again until she notices you. She is warming up to you all the time, and now loves to give you hugs and kisses, and is starting to play with you a little bit, too. You have been so patient with her.

You and Will are best friends about 99% of the time. I absolutely love to watch your little relationship grow and develop. You make up little games to play together, that both of you find absolutely hilarious. The other day you both started walking in circles around the kitchen island dragging your blankets on the floor behind you and laughing hysterically. It was the most simple little game, but the two of you find so much joy in doing little activities like that together. My favorite is when you spontaneously give each other hugs and kisses, or when you notice each others facial features or belly buttons, making the other laugh as you point to each part. Yours is a special little bond.

At sixteen months old, you LOVE your binky. I don't know how I will ever get it away from you, because you can hardly get through the day without it. You call it a "me" and will come to me crying for "me, me, me!" if you can't find it. You don't talk nearly as much as Will (probably because of said binky in your mouth 100% of the time), but you are smart as a whip and constantly making me laugh with your little antics, and your desire to be "soooo big!"

I love you to the moon, Norsie Hattie. Yours is a heart of gold. You came into this world with a desire to be good, and do the right things. It already manifests itself in everything you do. You are obedient and kind and caring towards those around you. I have no doubt you will always protect your siblings and shine brightly in our family, like you do today.

Love,
Mommy 



dear evie.

 written on 12.2.13


Dear Evie,

We have our days.

Days when everything feels heavy and suffocating and you can't quite find your balance, and I can't quite find mine.

We have our moments.

At times, I want to erase this. Start over, start fresh. Flip the timer over and watch the sand pour itself from one end to the other, slowly, silently, until we've built ourselves back up again. Until everything is how I thought it would be.

I feel like that.
Some days.

...

But then,
we have our days.

Days like today; when I put you to sleep, close the door, and find myself standing there, smiling, because that gap in between your two front teeth is just so. Tears fall because of that moment, in the kitchen, when you smiled at me while concentrating and then, so carefully, so deliberately, put two words together.

"Want"
"Sack"

I screamed when you said it. And you smiled, that enormous, beaming, Evie Jane smile. Because you knew. Because you know. Oh little one, you are special.

Most days, when I put you to sleep, I am utterly exhausted by the thought of you. You; with your energy bounding and pulsing. You; so vibrant, and particular, and exact. You wear me out, and wear me down, and leave me vulnerable, and open. Raw.

You, who challenge me, and push me, and mold this life into something I never saw coming. You turn it all upside down, and flip it backwards--push me into the corner and then pull me, forcefully, back out again.

Nothing is how I thought it would be. Nothing is how I imagined. Nothing, that is, except you.

You with the pigtails and the 4 consecutive kisses, and the eyes clenched tightly shut as you send your biggest smile up towards the moon.

Oh, I love you, sweet girl.

For everything you are, every second of the day. There is nothing, in this entire world, that is quite like you.

Love,
Mommy

Wednesday, March 12, 2014

nearly one year ago.



Last June, I found myself awake early one morning, crying to a stranger on the phone. She was an Autism mom, and was trying to help me cope during the realization I was going through--the realization that I was probably an Autism mom, too.

She said something that morning that made me mad at the time. She told me that if it weren't for Autism she would never have never met some of her closest friends in the world, and that her life wouldn't be as meaningful as it is now.

I remember thinking, "who cares?! I would give up every and any potential friendship I might make in order to take this burden away. How could she possibly think that could make me feel any better?"

It's been nearly a year since I made that phone-call, and my life has changed in remarkable ways. What used to sound depressing and impossible has become my new normal. And, just like I imagined, I do find myself curled up in bed nursing a broken heart from time to time. Occasionally, I find myself pounding the walls with frustration. I expected all of that, and it's real. But those days don't come often, and they don't stay long. What I didn't imagine, and couldn't comprehend at the time, was the unimaginable joy I would feel as I continued to love and care for my special little Evie.

I wouldn't have thought I could find myself, on a Saturday afternoon, sitting next to her as she ate her lunch and smiling through my tears as she offered me bites of her rice cake and then burst into giggles each time I took one. It was an ordinary moment that any Mother might have with their child. And yet, I was sobbing--my heart being ripped to shreds by her sparkle, and her smile, and the overwhelming feeling I had that this moment was not ordinary. That afternoon, I could feel that she was someone special, as plainly as I could feel the salty tears running down my face. I felt it all the way to my toes.

I wouldn't have thought I could find myself, writing emails to other Moms and saying things like "it gets better, hang in there, the clouds will part, you'll feel happy again." I didn't believe any of that could be possible for me, for you, for any of us on this incredibly difficult and breathtaking journey.

It's been nearly a year, and I don't wake up crying anymore. I don't wake up with a throbbing ache in my chest and a stomach full of lead. I wake up to the sound of her saying "Mom!?" and her giggle as she hugs me, touches me, smells my hair, and falls on top of me; her body relaxing against the weight of mine. I wake up and fall to the floor to pray that I can be good enough for her, brave enough for her, happy enough for her. And then something miraculous happens, and I realize that, because she is mine, I am.

It's been nearly a year, and I'm beginning to understand what that other Mom meant that morning as she listened to my sobs through the phone. Maybe another mom who is where I was will read this, and not believe me, too. To her I would simply say that Evie makes my ordinary life something extraordinary. Some days it is extraordinarily hard, and some days it's extraordinarily wonderful, but always, it is worth it. She turns an afternoon of sharing bites at the kitchen table into a miracle unfolding before my very eyes. She makes everything more than what it was before.

And I am something more now, too.

Wednesday, January 15, 2014

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.