Thursday, April 17, 2014

i am different

Tonight's post is short. It's a sacred lesson to myself about showing up, even when it feels mucky. Especially when it feels mucky. Maybe it's just for you- the friend who doesn't think they can do it, but has to do it anyway. I laugh when people tell me they would write-- but they just can't find the time. I fit a little writing in between my daily massage and tennis lesson- while I'm eating bon bons. They thing about writing- if it's really important to you, you have to choose it, especially when it's inconvenient. You don't have to do it daily and you don't always have to share it, but you must commit to it. It's kind of that easy.


Although I still feel the pains of growing, I am starting to breathe again. I have an 18 inch scar on my back, and metal rods on either side of my spine. I had scoliosis growing up and I wore a back brace. 

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Yes, it was almost this bad. And yes, when everyone laughed at her in the movie Sixteen Candles I wanted to throw up.


Sometimes I still wake up from a dream and check to feel if my brace is still on in a panic. I was Judy Blume's Deenie and I constantly felt out of place... Different in a bad way. 


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I wish I would have just spoken up then. I feel like a loser. Just one me too could have changed my entire trajectory. I thought you were supposed to hide your different. Sometimes I still forget and think that's true. I went to a Catholic all girls school. I would arrive early, first thing in the morning so I could remove my brace and hide it in my locker all day. And then I would wait until the bulk of kids left before I would put it back on again. It was supposed to be worn 23 hours a day. I didn't give it enough time to work so I ended up needing surgery. I don't regret it.

The surgery blew my fricking mind. When I woke up I wanted a gun so I could shoot myself, I couldn't bear the pain. They used metal and rods and hooks and screws to best pull and push and straighten my back. They took extra bone from my hip to be placed on my vertebrae, so it could fuse and grow together as straight as possible. They couldn't place the bone graph on healthy bone, it would never take. So they had to scrape the bones of my vertebrae raw until it bled. Only then could it bond with the bone graph and then grow stronger than it ever was in the first place. Sometimes the bloody and painful parts are needed so we can become stronger and healthier than ever before.

You are worth the journey and the wait. And so am I. This life thing? I'm pretty sure we're going to be okay. And by the way, I'm different. I sure hope you are too.

Wednesday, April 16, 2014

I surrender

There was a point during the writing retreat, that I just had to surrender. I was uncomfortable. Cold. Out of my element. There was no cell service and a heck of a lot of kale to eat. I missed Starbucks, my warm bed, familiar faces. I wished I still smoked. This just isn't me- I'm not edgy or artsy. I'm a introverted-extrovert depending on the moment, the day. I have a hard time owning who I am, maybe because I don't know who the hell that is sometimes.

I knew I had reached a pivotal point, and things could abruptly go either way. I had to dive completely in, or not participate at all. My hands shook and I slapped my inner over-thinker hard across the face. SHUT UP. I'm already here, I am all in. It was painful. I cried so much, and so many times. I unraveled. And there was so much beauty born from all of our pain.


And I'm not yet on the other side of that. I need sugar, and processed foods and sleep. I'm uneasy and exhausted. I can't stop crying. And laughing. I'm too much, I'm not nearly enough. Lonely. Alone. I need to ease to the other side of this pain.

I've gone back to Moming, but I'm not completely present.

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Double duty Speech Therapy...


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My precious Parker- whom we call Doodle, turned three yesterday.

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We waited for the Trash Truck.


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I felt every single soul from Write: Doe bay there with us, enjoying the rumble of the truck too. I feel your stories in my heart.

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We've been outside and we've played...I look at the pictures and everything looks normal... but it isn't.

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The world just won't stop spinning.

WARNING. This is not the voice of the Chrissy you know. This is not the Chrissy that usually writes this blog. This is a Chrissy that actually exists in life- but hides from writing. She stands in the closet eating chocolate or drowns in Bravo TV or spends money in order to not feel. Do not be alarmed. I don't need to be talked off a ledge. I just want to be honest. Honest no matter how unpretty it feels. I want to learn to use the pain I waded through this past weekend in order to learn how to make it to the other side. I want to know if you too feel a prayer of connection to my heart.

I thought I would return home rejuvenated, ready to mom with gusto! Today I could have won numerous Mothering awards- Most time spent on Instagram. Present, but not really there. Fastest at turning on the TV. Giver of eleventy hundred juice boxes. Ding, ding, ding- I'm the big winner.

I don't know yet how to be back in this world. I still have a toe in the Orcas Islands and I don't know how long I can stretch this far. I want to be closed up more than ever- but I want to be open even more than that. I don't want to think so much. I just want to surrender again

Today I decided I wasn't going to write for a week and just process. But I have this knack for running away from the fire. I went on my retreat to grow, and the best way to grow as a writer isn't about figuring out where to put commas. Instead for me, it's about a process of mucking up your soul. Blooming to new experiences.  So with mucky soul, instead I'm going to run on into the burning flames. I'm going to stop over-analyzing this discomfort and instead feel it, breathe it, own it until I can find my real voice again. I need to feel like myself again, my regular- abnormal self, while processing all along the way. It's painful. I sift through the emotions that float to the top.

I am vulnerable. Not that I said too much, but that I think so much. I care so much it feels crazy. I care that you like me, I care what you think. I care that you like my writing, and my story and I hope that we can connect. I hope you like me. That feels weak. I am ashamed. 

I am dealing with feelings of inadequacy. You are a mediocre writer and shouldn't have gone in the first place, asshole me says to doing her best me. I don't even remember what a participal is, how would I know if it's dangling? I have to talk myself through "a lot" or "alot" over and over again. I don't want to write a book anymore, I think. I learned during Claire Bidwell's presentation that you have to make yourself sound interesting and worthy to get an agent. Every time I write like that- it's a big fat lie. I want to hire a ghost writer to make me sound interesting. If I had to write it- it would read: Chrissy drones on and on and on and on about things that don't matter. She overthinks everything until the reader is exhausted. Chrissy is boring, generic, and cliched- her story unpalatable. Chrissy has no idea how many chapters are even supposed to be in a book, or how many words should even be in each chapter. Chrissy is mostly just a loser, trying too hard to be funny and loved. Let's all take a good moment to laugh at Chrissy now.


You don't need to talk me off the ledge. You don't need to compliment my mothering or my writing. This is all part of the process. I don't know why it's so confusing, but it is. This is all part of me. A real part of me that has always existed, it's just never had so many opportunities to feel vulnerable and uncomfortable and also so alive. I didn't travel for 12 hours straight to stay comfortable and to stay the same. Nothing significant in my life has ever been easy. If it was- it wouldn't also be significant.  And here I wade and breathe in the in between. I'm awesome at the beginning. And filled with clarity at the end. But the unfigured out middle is skin crawling excruciating. Like when you are wearing too small of tights that constantly lie three inches below your crotch and you just want to rip them off. Somewhere below the crotch must be where the lessons lie.

My heart aches I miss my friends. My connections. I love the recognition that even at 40, I can walk into a new situation petrified and make winderful new friends. Friends so good that it hurts to leave. I brought some of that vulnerability home with me. Before I left, I had so many bad what ifs. Do you remember? I made myself turn them into good what ifs for a change--

The time is now. For every one of us. The time to let go of the bad what ifs and turn them into good ones. What if I have the time of my life? What if I laugh so hard it hurts my stomach? What if I create incredible friendships that last the rest of my life? What if this adventure leads to many, many more?

My what ifs came true. Every single one of them came strikingly true. Sometimes the other side of it all is only one more big breath away. Keep breathing.

XOXO,

Chrissy

Join me on Facebook- but only if you get insecure too.

Monday, April 14, 2014

the pain of being born

He’s lying eerily still with eyes open wide. Only hours old, every once of his new life is foreign. In an instant I feel everything he feels and I ache for his new world of discomfort. Harsh buzzing florescent lights, first experience of stabbing hunger, sharp loud noises and cold sterile air causing angry purple splotches on his fresh new skin. His only calm found directly on my bare chest and inside my heart. Overwhelmed and grateful, I understand the pain of this foreign land because motherhood feels like that for me. My hands shake I am so scared. I kiss the top of his head and whisper, It’s going to be okay, we will figure this out together.

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I cradle him in my arms, my son Greyson now nine months old. We are getting the hang of this new world. My tears splash onto his face as I sit at my computer reading. The song, Face of a Faith plays in the background…


You are the light I follow

You are the face of a faith I love
Oh my darling believe in me

And my intense love for motherhood continued to create a trail of tears down my face. I was reading a birth story of a beautiful little girl unexpectedly born with Down syndrome written by her fiercely loving mother, Kelle Hampton. I almost envied the perspective Special Needs seemed to shine into Kelle’s world. I wrapped her words around both Greyson and me…


Life moves on. And there have been lots of tears since. There will be. But, there is us. Our Family. We will embrace this beauty and make something of it. We will hold our precious gift and know that we are lucky. I feel lucky. I feel privileged. I feel there is a story so beautiful in store...and we get to live it. Wow.

The story has begun...

I wondered if called to greatness, if I could love in this raw and beautiful capacity. Kelle’s words and her blog, Enjoying the Small Things became part of my parenting routine. She gave me permission to feel and give letters to all the feelings I could never find the words to describe. She was there, lifting me up and holding my hand along the way, helping me appreciate the simplest of moments.  I had no idea at the time that her collection of words was also paving a road for future me.


When Greyson was 22 months old he received the gift of a brand new baby brother named Parker. And although each stage was still new, the role of Mother came much more naturally the second go round. Greyson didn’t seem to care for this new gift and would have preferred we sent it back to the store. Instantly, Grey turned away from me. Days went by and he didn’t want me to hold him. He wouldn’t even look at me. One night my husband Michael brought him to me for a goodnight kiss and I instead received a slap across the face. Sobbing and hormonal, I chalked it up to the abrupt change brought on by the arrival of a new sibling. The distance between us grew as the days went by. I would enter the room and no light turned on in Greyson’s eyes. There were times I called his name over and over again and he wouldn’t even look at me. I didn’t know it was possible to feel such huge rejection from someone so tiny. The pattern continued, something is terribly wrong screamed my gut. Many little differences noticed, collected and compiled in my mind. He barely spoke. He didn’t call me Mom. He didn’t seem to notice other people when they were around. He wouldn’t walk on grass barefoot. I had no idea that all these things placed together had a name and soon after, Greyson was diagnosed with autism. And so now our story had also begun. I too was a mother with a child of special needs. 


Now Greyson is four years old and Parker is three. They are my wildest dream come true and fill my days with busy, purpose and content. Both boys have been diagnosed with autism. And I realized long ago that of course I love them fully in the raw capacity I envied in Kelle. We are Moms, that’s what we do.


In December of last year while scrolling down Instagram, I saw an announcement on Kelle Hampton’s feed. Write: Doe Bay, a writer's retreat on the Orcas Islands April 10-13 of 2014. My heart pounded in my chest as I tried to imagine myself as the type of girl who would go- because I wanted to be her. I haven’t left Grey overnight in four years and had never left Parker -even for one night. Put the oxygen mask on before assisting small children wasn’t meant for a Mother of two with autism, I told myself. My children would suffocate. Practical me and fun me got into a huge debate. I had just turned 40 and my bones ached for adventure. The trip was still four months away- What If you just signed up and cancelled if you change your mind? I negotiated with myself.  I told husband Michael the news excitedly and his face went flat. That’s too long to be gone, he said, I have to work. Who will watch the boys?


I NEVER GET TO DO ANYTHING, I screamed intensely, pissed off tears flying hastily, years of sad bubbling over the top. I never go anywhere. I love to write. I need this with every part of my soul. I’m so scared of what will happen to me if I don’t go. I knew it would save me- from what I didn’t know. Michael was shocked at the intensity of my response. Then you have to go. We will sign you up. I was exhausted from the polar conflict in my mind. No, you’re right. It’s a terrible idea, I pleaded. He grabbed the computer, found the information and clicked to sign me up. Panic slapped me across the face. No- I don’t want to go. That’s weird anyway- I don’t know anyone going. I don't leave the boys. It was too late, he wouldn’t take no for an answer.


My suitcase lies still unpacked in front of me, memories spilling out onto the floor. Not quite ready to let go. I did it- I leaped into the ice-cold water of Write: Doe Bay and it was an excruciating new existence. The first night was unbearable, I hate it here, I want to come home, I whispered to Michael on the phone. There was barely cell service I had to stand still pressed up against a small spot in our cabin to get reception. I’m certain it was just the pain of being born.  And slowly and completely I came unraveled and broken completely apart. I think I had to be shattered in order to be put back together again, newer and better. 


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And beautiful Kelle was everything I expected and then some. She's an amazing person and writer, but at the end of the day- she is also one of us. Just a girl and a Momma with a knack for true stories and perspective, a computer, and a heart that leaks constant love.


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I laughed a thousand times, and cried almost as much. I needed both desperately. And this girl Annie, she has a permanant room in my heart.



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(Photo credit Jesse Michener) I admired the amazing Nicci from Dig this Chick, A story weaver and lover of every day moments. My kind of girl. In my next life I hope to marry her. 

And also the inspiring, fierce Claire Bidwell Smith. In my next life I hope to BE her. Her Memoir, The Rules of Inheritance is about grief but even more about grace and running directly into your fears. She's one of the bravest souls I've met.


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And here are my lovely roomates, who already feel like family. Tammi, Elke, Angie, and Michelle, I can't wait until next time. 


And now I sit, sort and gather my thoughts. I ache from lonely without the constant companionship of some of the most amazing and unique souls I’ve ever met. 


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Sometimes you have to travel far to find a lost you.


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photo credit Jesse Michener 


I fell in love a million times in a million ways over the weekend. All of our stories, and the beauty and pain born released within the sacred retreat walls are forever locked inside my heart. 



The journey was intense, light and hilarious- it was a great many things. I miss every person there with a dull and unbearable exhaustion inside.  But the beauty, kindness and love I found I will forever share going forward, especially with my boys. The time away makes for much better Moming. For the first time in so very long, I can finally breathe. I don't even need the oxygen mask.



Chrissy

Join me on Facebook and Instagram @lifewithgrey

Wednesday, April 9, 2014

this is autism

This is a blog about life. Always with a capital L, always real. Sometimes scary, hard, often- boy I hope I'm doing this right- Life. Since it's about Life, it applies to every single one of us- because we all have one. Congratulations on being born. Isn't it wonderful we get to be alive?

Ours is a story of hope. Of trying again and again and again. Cherishing our gifts no matter what form they come in. This is not a blog about autism, although sometimes we talk about autism because it affects our capital L Life. However, today's post IS about autism. April is autism awareness month, and there are many thoughts that have accumulated over the years I want to share. These are the words I needed to find a couple of years ago while googleing into the wee hours of the night. I also want you to know what autism can look like because it's important to know. It may affect you or people you love.

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Greyson was 18 months old and something subtle was going on. I couldn't put words to it and I certainly didn't think it was called something. He didn't call me Momma or even speak really. He is my first, so I didn't really know what to expect. There were times I wondered if he loved me. He didn't notice when I left or entered the room. He didn't cry when I left the house. He didn't run to the door and greet me when I came home. I thought something was wrong with his hearing. I would call his name over and over again- sometimes inches from his face and he didn't even flinch. He no longer drove his trucks around the room- he now just stared at them from the side in fascination. He used to look at me like that, I thought longingly. I had no idea at the time, but these were all possible signs of autism. I never thought autism because he laughed and cuddled and didn't spin or rock. I thought those things saved us. I was wrong.


What is autism? It is referred to as a neurological disorder or a developmental disability. It is also called an Autism Spectrum Disorder- ASD. Since autism is a spectrum disorder, this means a child can have a variety of different behaviors to varying degrees. No two children with autism are the same. Autism currently affects 1/68 children in the US. Boys are 5 times more likely to be autistic, causes for difference in gender are still speculative.

There is no medical detection for autism. I think that's one of the most mind blowing aspects for parents. The period of waiting from the first whisper that something is different until you are told- your child has autism. There's no blood test. No brain scan. Just questions asked and small little boxes penciled in. The earliest signs of autism involve the absence of normal behaviors—not the presence of abnormal ones—so they can be tough to spot. I'm going to attempt to make something very confusing and slightly subjective into something a little more concrete. The awesome Doctor that diagnosed my oldest son Greyson did this for me. He broke it down into bite-sized pieces which helped my mind understand and heart process.


To be given a diagnosis of autism a child must have problems with communication (1) and social skills (2). They also must have rigid or repetitive behaviors that fall into line with an autism spectrum disorder (3). Let's break those further down.

COMMUNICATION: A child should begin using first words between 12- 15 months of age. They are usually words meaningful to the child. Drink. Mom. Up (with arms raised to be held). By 18 months of age Greyson had a vocabulary of about 20 words- most of them were not spontaneous, but if we said it first- he could repeat it. He did not say Momma or Dada with intent- only in random babble. He did not say more or up or drink- he could only label nouns we had repeatedly reviewed with him from flash cards, toys or books. Truck. Bird. Boat. Duck. He never labeled the items when he saw them in natural settings. Look! There's a truck! If I pointed to an object, he did not follow my point. 

Communication is also non-verbal. Waving, pointing, arms raised to be held, are potential forms of communication that may be missing in children with autism. These are all red flags that should be discussed at your pediatrician's office. I brought these language concerns up at his 18-month well baby visit and I was told not to worry- the words would come. Boys often talk later, myself and so many others have been told. Since autism now affects 1 in 42 boys, boys are often late talkers is a sentence I'd like to banish from the world. A delay in communication alone does not warrant an autism diagnosis, so further digging is important. Early intervention is important because studies show that early treatment improves outcomes dramatically. It's important to voice your concerns to get any necessary Early Intervention from the state. I think it's funny that the very organization that stresses the importance of early intervention often has months long waiting lists and weeks long paper trails required to begin services. Voice your concerns, make an appointment with your State Center for people with disabilities. Yes, it's scary and it sucks- but you have to do it anyway. Your child needs you to.  If by the time your appointment comes and you no longer have concerns, simply cancel your appointment.

SOCIAL: Children with autism often have poor eye contact. I remember feeding a baby Greyson- our eyes locked on one another. For both Greyson and Parker, somewhere between 15 months and 18 months of age the eye contact became less frequent. I would be inches away from their face attempting to get attention and they would look right through me.


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It's haunting and very different than when a typical child ignores their parent. Children with autism may not notice when you enter the room or come home from being out.

Children with autism tend to stay by themselves in social settings. If everyone is playing on the playground- they are the ones running the opposite way. Typical children are curious about other children. They watch and imitate, they attempt to join in and play- or they are shy yet still curious. Greyson and Parker are usually fine being around other kids, but they don't initiate any interactions. They aren't curious about the other kids. It's almost as like they don't exist. Some children with autism cry out and can't bear to be around other children. This is an example of spectrum thinking. From a young age children like to show things to their parents. Maybe they want to share the excitement of a toy- so they hand it to you so you can exclaim- this is wonderful! Some bring an object to the parent for help opening. These social interactions are often lacking in children with autism.

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Many children with autism are very affectionate and love to give hugs and cuddle.

BEHAVIOR: Many children with autism have an insistence on same that goes beyond typical toddler opinion. Greyson can not have his hot dog cut up, he will ONLY eat it whole. You can not break a cookie in two and give him half. If he sees this happen, he screams and cries so horribly he sounds like he is hurt. He won't eat it. Greyson used to like to go to the park by the same route, he would scream if we attempted to walk a different way. This small behavior is one of the many thing that Behavior Therapy (ABA) has helped us fix.

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There are numerous meltdowns over the seemingly to us- slightest things- all day long. The insistence for same and inability to communicate can make these children extremely frustrated and sad. We are teaching Greyson to say I AM MAD, when it's obvious he's mad and I AM SAD, when it's obvious he is sad. It helps him express himself in a way that isn't so draining for all of us.

Children with autism have trouble transitioning into a new situations when leaving preferred activities. This can cause epic sweating, screaming, falling to the ground tantrums. Not every so often- most of the time.

Many children with autism don't play with toys in the same way as typical children. When referring to children who are not autistic we don't call them "normal" or "regular" in comparison. Eeegads- those makes me cringe. We call them "typical" which stands for "typically developing". Now I know even typical children develop differently - but they usually fall into a standard of brackets.

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Children with autism frequently lack pretend play skills. Greyson would prefer to examine the details on a car and line the cars up than to drive them around and make them go vroom.

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This ASD behavior is called visual stimming- Turning head sideways to look at objects, frequently squinting, looking at things extremely close up, from numerous different angles or out of the corner of their eye.

Parker does not line things up, but he likes to look at things sideways or very very close to his face. He also lacks pretend play skills. They are both frequently drawn to objects that are not toys- a salad spinner, a measuring tape, my camera tripod- and they become extremely attached to these items for a period of time.

Many kids have fixed interests that are abnormal in intensity. Greyson was obsessed with trucks and things with wheels. He was fascinated with the water dripping down the glass shower door.

Many people with autism are highly sensitive to sensory stimulation. Noises, smells, food textures and lights can be overwhelming. They may close their eyes, cover their ears or freak out- and to us it looks like it's for no apparent reason.

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Greyson hates walking on grass without any shoes on.


Greyson and Parker are good examples illustrating how different even two children with autism can be. Greyson has a better handle on language, problem solving and self-help, even when he was Parker's age. Parker is more flexible, tantrums less and and has less all around overall autistic like behaviors.

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At the end of it all, we are happy. We find beauty in life's daily adventures. If you have a child recently diagnosed with autism you will find your happy again too. I promise. 


Please help me share this post with your friends. You never know who may need to find these words right now. If you have any concerns about your child, call your pediatrician and make an appointment to discuss your child's development. Before going in fill out the Modified Checklist for Autism in Toddlers (MCHAT) and bring it with you.

If you have any questions you can email me at lifewithgreyson@gmail.com

Love,

Chrissy

Find me on FACEBOOK
and Instagram at @lifewithgrey


Tuesday, April 8, 2014

what ifs

I'm a list maker. Whenever I start to feel unbearably out of sorts in my head, I make a list and it makes me feel so much better up in there. Things get sorted and categorized and urgent voices get hushed. The items on the list are never as big and scary as they feel in my head when I get to hold them and rub my finger over their smooth surface. I've been listing like crazy lately. I need listers anonymous. Lists in my special lists notebook. Lists in my bedside notebook. Lists on spare receipts and napkins. On whatever I have around with whatever I have around.


You see, the thing is- I get scared. A lot. Autism has taught me that despite the scared you need to do it anyway. That makes me angry sometimes- because I like to feel safe and swaddled by life. I want to stay in this warm womb I've created. And there's a part of me that is just like that naturally- and there's a part of me that turned into that because of life. There's this post traumatic stress part of me that feels like I must keep everything exactly safe and just so- because I can't bear to have my mind blown one more time in any big or small way for the rest of this lifetime. I guess the whole of life is about scared but doing it anyway. So this past year- with shaking legs I've been going out onto the limbs to get some of the sweetest fruit.

It's time to do it again. . This weekend I'm going on a writing retreat on the Orcas Islands in the Pacific Northwest. When I first saw the announcement it felt like the best idea anyone has ever had in the world. I was certain God created it just for me. I knew I would have just received Parker's autism diagnosis, and I knew I would need the trip to save me. To remind me that life is big and I am small. To remind me to dream big and believe anything is possible. Taking time to think about whether or not to book it wasn't an option- there were only 25 spots. Kelle Hampton from Enjoying the Small things blog and the book- Bloom will be presenting, as well as Claire Bidwell, author of the Memoir  The Rules of Inheritance. I knew the spots would go in an instant. Practical me wins over fun me in 9/10 arguments. But this time- fun me won. Fun me did penalty-worthy excessive celebration in practical me's face. BAM. Immediately after signing up it was the worst most horrible idea anyone has ever had in their life. And now that time has passed I go back and forth, depending on the day. Throughout the past 4 months there have been days the thought of this trip has gotten me through. Days when 5:30pm feels like midnight and I don't know how many more decades I can wait until bedtime. It's saved me from many, many moments of despair. 

And now that it's oh so close I'm back to the worst idea ever. Sharing a house that sleeps twenty - and even sharing a room with another person. What if I need alone time? What if I have to poop? What if I miss the boys so much I disintegrate all over?


And now that I'm leaving soon everything they do is perfect and hilarious and adorable.

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I could watch him eat frozen yogurt all day long.

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The what ifs are killing me. 40-year old what ifs that never would have occurred at 22. Yes, I've needed to grow up- make good choices, spend money wisely and put others first. But where do you draw the line and just let go of control?

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The time is now. For every one of us. The time to let go of the bad what ifs and turn them into good ones. What if I have the time of my life? What if I laugh so hard it hurts my stomach? What if I create incredible friendships that last the rest of my life? What if this adventure leads to many, many more?

Sometimes to change your world all it takes is a shift in perception.

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I know, I know friend- It will be an amazing, once in a lifetime experience. I will come back bursting with life and so very grateful for the experience. Sometimes it just takes me a little to get there. I'll be sure and put Have fun on my list for while I'm there.

Big Fat Hugs,

Chrissy

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Sunday, April 6, 2014

kindness matters

I love the underdog. The person who has to work twice as hard to get half as much. The one who appreciates the small things. The one who isn't the most popular, the fastest, or the smartest. I don't care about any of those things. I am drawn to the dreamer, the believer, the hoper, the lover. The try and try againer. The people who share little spots of beauty with the rest of us.

Kindness. It's free. It never runs out. And the more you give, the more it creates.


Over the weekend we went to Big Hat Days in the neighboring town of Clovis. Eleven blocks of Kettle Korn, rides, and crafts I never even knew I never wanted. Oh yes- and people watching and bump-its.

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Grey was crazy about the rides. The bigger faster spin-ier they were- the better.


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Doodle and Grey both enjoyed the rides. JUST KIDDING! That's not Doodle! I tricked you. That's our Friend Liam- yes, Sawyer's big brother. Unfortunately Parker got sick Saturday and couldn't be there.


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We went back again today... Grey covers his ears when things are too loud.

I wanted Parker to experience Big Hat too. Thank goodness he was feeling better. I hate when my little buddy is sick.

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We went on rides.


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Grey and I went on this awesome Super Hero flying ride. I swear someone with autism created it, it made Greyson so happy. Swinging, spinning and flying all in one. The first time we went on, as he clicked us in- the guy running the ride said to Greyson- I need you to move up and put your head here, pointing to the head rest. I was already strapped in and I couldn't do it for Grey. Grey doesn't understand those kinds of directions because he hasn't been taught them specifically. Many children with autism have difficulty following directions. And two directions in one sentence?! Forget it. 

One day he will be taught opposites. Up, down, left, right, empty, full, little big. It will begin as a cognitive/language goal. After he masters that- he will learn to generalize it in different social settings. Move left. Look up- etc. Language is a foreign language to Grey. Verbal, non-verbal. All of it.

I looked at man and said I'm sorry- he doesn't understand, and then hesitated not knowing what else to say. It's alright if you touch him and put him where he needs to be though, I told him. And the man was so kind. He gingerly took Greyson's arms and pulled him up- explaining everything while he was doing it. I'm pulling you up, little buddy. Great job! Now I'm going to put your arms up here- and he smiled over at me. And I was so grateful for that moment. It was one of those random moments where your emotion takes you by surprise. It was such a simple act, and I was grateful for that extra ounce of kindness the kind gentleman exerted. He gave me hope, that even though there's much my boys don't understand about the world- there will be people around to help when I can't.

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The world will always keep spinning.


Colin Powell shares a line he heard that has impacted him for decades, that was extremely fitting for us today. Always show more kindness than seems necessary, ­because the person receiving it needs it more than you will ever know.

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For dinner we went to the greatest place on earth. I'm much more a greasy french fry fingers girl than a fancy napkin on your lap gal- although I enjoy both every so often.


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Ketchup is Parker's religion.

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I love his little ketchup face.

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And, ONE BITE AT A TIME, was clearly said just a little too late.

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Afterwards we explored the campus at Fresno State University. It's so beautiful there.

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Sometimes I think God comes up with themes for our life. Writing helps me figure mine out. Today's theme was all about kindness. It doesn't have to take a lot of time, and it doesn't have to change the world in huge and monumental ways.  We saw this plaque on campus, created by The Rotary Club. Words they follow when thinking, saying and doing. Is it truth? Is it fair to all concerned? Will it build goodwill and better friendships? Will it be beneficial to all concerned?

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That's my goal this week. Just a little kinder than necessary. I know how good it feels to be on the receiving end.

Love,

Chrissy 

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Thursday, April 3, 2014

all about Sawyer

Annie was at her routine 12-week ultra sound appointment. Her belly just beginning to protrude with a brand new little sister or brother for the newly turned one year old, Liam waiting at home. Each measurement made by the sonographer was met with a smile and nod, until they measured the nuchal translucency. This test measures the clear space in the tissue at the back of the baby's neck. Babies with chromosomal abnormalities tend to accumulate more fluid at the back of their neck during the first trimester, causing this clear space to be larger.

The doctor was called into the room and she shared that this finding could indicate a red flag for Down syndrome. She referred her to a geneticist for further blood work. Together, these tests are known as the first-trimester combined screening and the Down syndrome detection rate is shown to be about 96%.


The next day Annie went for blood work, where the geneticist let her know that they would be screening for a few different chromosomal abnormalities. Every cell has 46 chromosomes. A set of 23 courtesy of Dad and a set of 23 from Mom. Down syndrome, also known as trisomy 21, occurs when a baby has an extra copy of chromosome 21 in some or all of his cells. They would also be looking for other chromosomal problems that babies can be born with which include trisomy 18 and trisomy 13. She was told at this time that trisomy 18 and 13 usually aren't compatible with life.


 One day you are day dreaming about smelling their sweet baby scent after their bath, and the next you are told to start discussing as a couple whether or not you are willing to terminate your pregnancy- just like that. Sometimes life just isn't fair. Annie was told that the results can take from 7-10 days. In those situations, time is never kind. Each moment that passes carries a loud and excruciatingly slow tick of the clock. The cell phone was her constant companion. Is the ringer on? Is it charged? Is there cell coverage? It felt like she checked her phone every minute. Within days she was calling them to see if she could get any information yet. On day seven she was in a surgery center waiting for her Mom to come out with a new knee. Annie's phone rings and she knows by the number displayed that this is the call for which she has been waiting.


Time stood still as she was given the information that her gut already knew. Annie tested positive for trisomy 21 and the child she was carrying had Down syndrome. Her first feeling was overwhelming relief. Compared to the other abnormalities, Down syndrome was a blessing. While on the phone she attempted to remain strong. She was grateful that her child would live. And when she hung up the phone she started to sob. The other people in the waiting room faded away and what was left was only Annie and her pain. She needed her rock, her husband Daniel. Daniel is soft-spoken and kind hearted. She didn't want to tell him on the phone but she needed him to know immediately. She squeaked out the news. His words hugged her tight, It's going to be okay, he said. Together they focused on the positive. We can do this. Our baby will live- that's all that matters. The entire process, the fear, the waiting made them grateful they would have a child that would live.


Annie will never forget driving home in the pouring down rain that night, crying. She couldn't call people or talk to anyone, she couldn't explain the news she hadn't yet processed. It's so painful to have to tell your story over and over again. She called one sister at random and asked her to share the information with their seven other siblings (YES!! SHE IS ONE OF 9!!!) . She couldn't catch her breath she was crying so hard. She felt so much pain, and then guilt for feeling so much pain.


As the days and months went by she processed all the information. She worried about all the unknowns. What will his life look like? How will parenting be different? What about the added health risks that are associated with trisomy 21? The increased risk in her pregnancy warranted an ultra sound every two weeks. During those moments of seeing her baby on the screen the fear of the unknowns vanished. Moments of peace would settle deep into her bones. She saw and bonded with a beautiful little baby while the diagnosis faded into the background. 
One appointment would carry her into the next. 

 With the diagnosis carries an increased risk of premature delivery and at 31 weeks pregnant, Annie went into labor. On June 11, Sawyer Daniel came into the world. 2lbs, 15 oz of pure love.


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Annie is positive -God brought him early which shifted our focus to his health, Down syndrome wasn't even a thought in our mind then. 
Groggy and fuzzy after her C-section, Annie was wheeled into the NICU on her way to recovery to meet her precious son for the very first time. Was Daniel able to hold him? She remembers asking. And when she was told yes, she knew if the baby was healthy enough to be held that it was a very good sign.

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Despite a million tubes and wires, sweet Sawyer was placed on top of Annie's chest and directly into her heart. Just like her sweet husband Daniel had faithfully promised, once Sawyer was here it wasn't as scary. It was just love. They had a long road ahead in the NICU, but their miracle baby was here on earth and beginning to thrive. They had God by their side the whole time.


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And Liam... Sweet Liam loved his brother Sawyer from the instant they met. Isn't he the sweetest? I call him Noodle, because Doodle was already taken.

Here are Annie and Sawyer now.


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Ten months later...They both make the world glow brighter.


Annie and I met while she was still pregnant with Sawyer. God put us both at Nordstrom Rack at the same time. Anytime He calls on me to go shopping, I am there-- and Annie is by far absolutely the best thing I've ever gotten at the Rack. I love Annie because her Starbucks order is even more complicated than mine, plus a million other reasons. I like the way she looks at life. We can talk about anything- surface or deep. She loves big. We'd be friends even if we didn't have Super Powers in common- but it makes it even better because when I am sad or elated- she truly understands what it feels like. Sharing Daniel, Annie, Liam and Sawyer's story is a genuine honor. One day many months ago I was scared, but I asked her anyway. Annie- if you ever want to tell Sawyer's story, I know just the place. I knew her story would find a perfect home here. I know something about Sawyer is very special, and I know this boy has big plans in this world. I told her the offer would never expire, and if she never wanted to- that was okay too. And then I launched the Beautiful Super Powers photo shoot idea and she came to me and told me her and Daniel were ready.


When describing Sawyer, Down syndrom is the last thing I would use to descibe him. He's adorable and squishy. Squishing Sawyer should be an accepted form of therapy because it causes high levels of happy. He's a sweet little baby boy. He's curious and happy.


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And dapper. Did I mention totally dapper?


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The way his head instantly whips around when he hears his Momma's voice stops my heart.




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Mostly he's just Sawyer, which is already pretty amazing.



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The whole family is pretty amazing.


The love we all have for our babies is so much bigger than these fears and diagnosis, Annie told me today. Once Sawyer came- the instant love healed everything. The diagnosis didn't matter. I wish I could tell the old pregnant Annie laying in bed with so many fears and thoughts and worries-- None of that matters.



I asked her what she wanted out of life for Sawyer. She said she wants the same opportunities. She doesn't want him put into a category. Assume he has the potential to be on the swim team or to be a Kerman Kicker like his Dad. (I forgot to ask her what that means but I'm guessing football). She hopes the world won't limit his future potential. She hopes that the helpers will always show up. She used to Teach, and she agrees with me that there is at least one helper in every classroom in the world. 


As long as he is happy, that's all that matters. No matter what the future holds.



Daniel and Annie- thank you so much for sharing this very important story and very important boy with the world.  If you have any love or encouragment to send to this sweet family- send it to me. I'll make sure to send it their way. lifewithgreyson@gmail.com

Much Love,

Chrissy 

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