Thursday, July 30, 2015

forever summer

Nothing living lasts forever, including each season of every year. Change is quickly inching along as we are rolling into the last days of Summer. A Summer alive with wagon rides, swimming until the kids pass out cold in between the comforting cushions of the couch, and purpley grapes growing in our yard so ripe they taste like candy. 

There's nothing quite like Summertime adventures.

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Adventuring at the zoo

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Up until this year they barely noticed the animals. They didn't pay attention to any of them. It was something I mourned, something I thought was taken by autism, something that made me jealous when I saw parents experiencing what I wanted with their children- joint attention, sharing in delight. But things change constantly, and it's so easy to forget that sometimes, that's a good thing. 

Greyson and Parker remind me to accept what is- but never ever bury hope for forever. It has a way of blooming when you least expect it.

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Hope is the best wingman.


I turn my eyes away from the Back to School section inside Target. I'm just not ready for the long days full of golden sun to be over. I'm not ready for my amazing Teacher friends to go back to school. I want one more play date, where the kids swim and we compare pooches and c-section scars and eat chocolate and potato chips and laugh.

Life is just so darn good, and sometimes it takes me writing about it to really and truly get the pause I need to remember that.

I think about Summer me and Back to School me. We are really quite different. I may hire Back to School me if I owned a business, but I probably wouldn't really want to hang out with her. She tends to be all business. Summer me is a little more tan, a little more laid back, a little more carpe diem'y, and a lot more fun. I thought about letting Summer me give Back to School me some advice. You know- before the passing of the guards. Or at least fill in the blank. This year I promise to:

I'm still thinking of my answer. I was going to say, "be more laid back", but I'm not laid back person so it's not really obtainable or specific enough to be measurable anyway. I need to make sure that I schedule time for the things I value. How do you know what you value most? It's what we spend our day doing. And if what we SAY we value and what we are actually DOING don't line up- it's time to reevaluate.

You should play along. What would your fill in the blank say? "This year I promise to:(blank). One thing is for certain, I need a daily reminder to stop chasing perfect. Most of us claim to hate perfect. But then we find ourselves berating ourselves for our complete and utter humanness. What we are saying (I hate perfect) is a lie compared to what we are doing.

I also expect others to be perfect. Let me tell you, it's pretty exhausting. Of course if you asked me, "Do you expect perfection from others?" I would say, "What?! No of course not. I love people just the way they are." But then someone does or says something and I find myself judging them or getting angry. Expecting them to do or say what I would do or say. WHY didn't they do this? WHY did they say that? WHAT makes them think that is okay?! WHY aren't they more (blank)? I wonder how much bad energy I could free up if I could just remember that they are not perfect and you are not perfect and I am not perfect either--And not just remember it in words but also in action.

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Time to turn this Summer over and shake out every last drop.

Big fat hugs,

Chrissy

Thursday, July 23, 2015

get over it

It can all change in just a second.

Our entire life and every single thing we think about it. It's ice cold frightening. Everything we thought we ever knew was wrong, or a lie- or even worse never existed.

The more we are given, the more can be taken away. Loving is a simultaneous pledge to risk the worst pain imaginable. Awful, gut-wrenching, puking, swollen eyes sobbing pain. But we still love, because it's bigger than any risk.

And pain burrows into every curve and corner of our being. And it takes up residence and space. It eats with us and sleeps with us. It drives with us and talks to us constantly. "You will never know normal again," it lies. And we believe it.

But we have to move on. We have to get over it. 

You have to get over it.

Get over it. Your kid has autism. You had a shitty childhood. You're getting divorced. Your spouse cheated. Get over it. 

No, no, no- not in a day or a week or any unreasonable fake it til you make it amount of time. There is no set amount of time you must give yourself. It depends on our specific story and what we look like on the inside. Grief is a house guest that must be entertained until it is ready to leave. It may take a month. Or a year. And that's not to say you may never hurt or feel that pain again, but it means you have agreed with yourself to move on. 

To get over it.

And I've found you must walk over the hot coals, right down the middle of your pain. It demands to be acknowledged. You can't fake it. You must hurt and feel something die and beg for it not to be so. You must hit and feel the lows. It's awful, but there just isn't a way around it except for time. 

The United States Declaration of Independence states: We hold these truths to be sacred & undeniable; that all men are created equal & independent, that from that equal creation they derive rights inherent & inalienable, among which are the preservation of life, & liberty, & the pursuit of happiness...

Notice it does NOT say we all deserve happiness- like something that can just be delivered to us in a box. It says the pursuit of happiness. That means it's up to us- it's within our control. Happiness takes work- but it's the foundation to a meaningful life. 

The other day I reread an old post I wrote four years ago- the first time I knew...just knew it was autism. And I talked myself out of that realization many times in the seven more months it took for him to be officially diagnosed. But this is the day... the awful day I knew it in my bones. I still shake thinking about that loneliness and fear that curled up with my while I sobbed on my bed. I wrote:

"Now I get down on my knees and ask I don't know who...God? The Universe? What is real? Who am I? Who is Greyson? What will his future look like? What about his life that I've already daydreamed into existence? Where did it go? His life, complete with many friends, school, sports, love....college, marriage and babies. I want him to have that life. He deserves that life and it just isn't fair. What dream will I dream instead?"

And I feel scared remembering exactly how it felt to FEEL like that and to think those things- every moment of every day. It was awful.  And I am so grateful because it took me reading that to acknowledge- I DON'T FEEL THAT WAY ANYMORE. It's like I won the lottery and I got my soul back. Of course I have my days and my moments. Moments when the devil wakes me up at night and all I can think about is- "Who will take care of Greyson and Parker when I die?" But I have moved past that initial, awful grief. I've learned that it's best not to have specific expectations- for me or my boys. There is no parallel life where my children don't have autism. This sometimes painful life is EXACTLY the story we are all supposed to live. 

I don't even remember how long it took to move past the gut-wrenching part. Maybe a year?

Sometimes grief stays well past it's welcome. You find yourself much later still having the same pain and thoughts. Then you must kick out this unwelcome guest. That doesn't mean you like what happened to you. That's doesn't mean it isn't real or it didn't affect you. It means you've made a pledge to GET OVER IT. If it's been years and you are still focusing on what isn't- it's time. 

Get over it.


Life is not about what you get. It's not what you achieve. It's how you get over pain. How you find a way to live without what you wanted or with what was taken away.

When you cling to the past or to a life that doesn't even exist- it's impossible to live in the present.
It's time to forget. To move forward. Stop wishing for rewind or redo. We may not get the answer to "why me?" in this lifetime and we have to be ok with that.

Free yourself, truly free yourself so you can focus on the blessing still present in your life. They may not look like you imagined, but they are there. I promise.

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Wednesday, July 22, 2015

free therapy

I almost don't want to put words to it. To burst this rainbow prism'ed bubble and speak of it in the past tense. It was the best of times and only the best of times. A weekend get away with my dearest friends, planned months in advance and excitedly counted down to on a calendar.

Giddiness. Fear. Anxiety. Joy. Just some of my feelings leading up to the weekend. But mostly, anticipation. Having something to look forward to is therapeutic. It got me through the boring and hard days. And last week before I left, the kids must have written a memo. "Drive mom ape shit so she looks forward to her trip even more."

The evening before my friends and I exchanged at least eleven million and twenty three texts. What are you packing? What will the weather be like? 

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And in the morning, we were off. You could feel our excitement.

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Party of five, first stop: Bianchi Winery. Lush vineyards are abundant in the Central Valley of California and this was a first for me. This place was a little sip of heaven. It was cozy and comfortable and it felt like you were hanging out at your best friend's house. Your stupid rich, I have a lake in my back yard, friend. In some parallel universe I can totally picture living in a vineyard and making wine. You know- as long as there's a Target down the road.

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Just a little later we arrived to our road trip destination.

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Pismo Beach hugs the shoreline of the Pacific Ocean and lies half-way between San Francisco and Los Angeles. We checked into our hotel, left for lunch and didn't return to our hotel until late that night. We were high on laughter and life. 

We laughed over absolutely everything. Like fall on the floor, my stomach muscles hurt, I can barely breathe laughing. There were no schedules or plans or stressing. We were water and we just went with the flow.This group... It's just so hard to explain. I don't know how I got so lucky. I haven't had a group like this since I left my hometown of Missouri over 15 years ago. We are just easy. These are some of the most loving, kind, fun, sensitive, fun girls in the whole wide world. I wish you could come hang out with them and you would understand. I don't do autism support groups. Years ago I tried a couple and they just sucked. They were awful and negative and felt like a bunch of people sitting around arguing about whose child was more autistic and whose life was worse. I left feeling worse. I realized that all I really needed was a way to get out the grief. I have two friends that know developmental delays first hand- they get me when I am sad or scared or angry. Over the weekend I realized- THIS, yes THIS is my support group. 

Our Monday through Friday is corseted into tight time frames and sometimes I simply must stretch. This trip was just what we all needed.

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There were moments that were sacred. Moments punctuated by tears. Moments we hugged and cheers'ed and prayed. It was everything. There was so much gorgeous intimacy and honesty and all the things that nourish me. I fell in love with every last one of my friends over and over again.

And I can't explain just how different going away for a night is versus simply going out for the evening. It's like the Eiffel tower in Las Vegas versus the one in France. It just can't be compared.

When you are gone- you get to remember every part of you. Little girl you, complete with slumber parties, candy and snacks, staying up too late and giggling under the covers.

And teenager you, talking, figuring out what life really means and realizing what's most important. What makes up your DNA.

College you, singling to music, having one too many and adhering to only the beat of your very own drum, walking along with the people you love- together making your very own band.

Until it all just clashes into the present. Who you are NOW. And you remember ALL the things that make up you. And moming is my favorite and most important gig, but I'm not just Mom. I am also Chrissy. And it's so easy to forget that the fun, go with the flow girl of the past is still alive in the present, vibrant and strong. Always.

We were only gone for a total of 36 hours. That's 36 hours of FREE THERAPY. And at my mental health copay of $40- I actually SAVED $1,440 by going on this trip. If you are like me, you can come up with a million excuses not go outside of your comfort zone. ESPECIALLY to not go away overnight. We tend to put everyone else first. I tend to want to say, "No I can't"- as my first answer.

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#wemissedyouheather


When sometimes we truly must say YES. Yes, yes, yes, yes, yes. To friendship, to taking care of ourselves and to life.

And the greatest part of the weekend? The rejuvenated Mom and wifey that came home. In fact, I didn't even yell when this happened. 


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All I could do was laugh.


So Much Love,

Chrissy

Thursday, July 16, 2015

smitten by summer

We are deep in the throes of Summer. Incredibly smitten with our favorite season and grateful it comes around every year and stays awhile. Before we blink twice I know it will be over so we are doing our very best to soak it all up.

Both boys have three hours of Behavior Therapy each day and an hour of Speech Therapy each week. We've been spending lots of time in our pool.

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Or asking to go in the pool.

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We've burned through a few zillion pieces of side walk chalk.

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Grey is OBSESSED. He draws the same five or six things over and over again.

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And I am obsessed with his drawings. It takes me asking a million times for him to tell me what each drawing is. This here is a monkey. Cutest one I've ever seen.


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He hasn't answered me on this one yet.


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And this is an air plane.

His drawings scatter and fill the entire walkway in our back yard. And when he fills it all up, we rinse it down and he starts over again. And this has been our Summer. Not crazy and exciting. Not dreadful or horrible Wonderful and somewhere in the middle. Like most of life.

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Look what happened while I was talking to my friend Wendy for seven minutes today. The funny thing is- I was three feet from him and I didn't even notice. He loved the mud so much I let him just totally go for it.

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By the time he was done, I didn't even recognize him. Friends, meet facial hair, Man-Doodle.

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Thankfully the hose and the pool brought back my cute little boy.

Yesterday the boys and I were at Bath and Body Works with a friend. The nice woman that worked there kept asking us if we would like to try their new anti-bacterial gels.

"Would you like a sample of our Honey Dew Cooler anti-bacterial gel?"

"No thank you", I would reply- then dash to the front or the back of the store.

You see- Greyson wanted to leave the store because the smells overwhelm him- so he kept running to the front. Parker loves to go behind cash registers in the back. He also loves to pick up anything remotely breakable.

"How about the Pink Grapefruit pop?" She would ask- popping out from thin air.

"No thank you", I would respond before darting off.

"The Coconut Colada smells terrific! Would you want to try that one?"

No. No thank you. (AGAIN. ummm- I'm good with my bacteria ridden hands! Thanks!)

I spy Parker in the back of the store grabbing a large glass candle and I'm off to stop the tragedy before it happens. I grab the item from his hands and throw him over my shoulder before he can freak out. I see Greyson by the front door so I start to run towards him so he doesn't leave. In slow motion I see the woman animatedly talking to Greyson as she is referring to the (SURPRISE) antibacterial gel in her hand. I hear her finishing.

"...so, would you like to try some?" She asks with a huge smile, holding the gel out towards Grey.

Greyson responds with a No. Not a regular no- a Greyson no. VERY DIFFERENT.  It sounds like this.

NOOOOOOOOOOOOOOOOOOOO!!!!!!!!!!

It's the same way I would respond if I saw someone in significant danger- like-about to run in front of a moving bus. It's so loud it STILL scares me- and I hear it about one hundred times a day. It's so loud that traffic stops and the music stops playing and people everywhere within miles jerk their head so fast to look that they get whip lash.

The ladies eye's grow wide, her smile slowly falling off her face. "Oh my." She says in surprise. "Is somebody having a bad day?" She asks recovering her smile.

You guys- I couldn't stop laughing. And laughing. I am still laughing about it today. Greyson just gave his natural response. A response I kind of felt like giving after the third request to try the damn hand gel. Being an adult means feeling like you always have to do and say the right thing though. Sometimes it's exhausting.

Sometimes we are so focused on being polite or saying the right thing that we swallow how we really feel. We say the right thing- but it isn't honest or genuine. It isn't our truth. And we often do this a million tiny little ways each day. And here's the thing- the more we say the fake right thing, the more we don't even know what we feel in the first place. We start to lose the ability to know how we really, really feel about things. I've met people like this and they just feel like robots- conditioned after years of saying the fake right thing. We slowly injure our real truths and hearts and feelings and opinions. We mask our truth with politeness and social acceptance. And then we either turn into a blob of exactly the same as every other person doing the exact same thing we are doing- or we get pissed at others and ourselves because we don't feel like we can be who we really are inside.

I am drawn to people who tell the truth. People who express their honest opinions. People who can say, I agree. I don't agree. You hurt my feelings. I don't think that's the best idea. That shirt isn't flattering. You have spinach in your teeth. People who are polite AND honest. The two are not mutually exclusive. Why are we so scared of honest? Are we afraid that people won't like us? I have to work on telling my truth. When I don't it builds up until I explode. It's something I am working on in my marriage too. Our counselor said I need to express when I am mad - IN THE MOMENT. Not a week later when seven other things pissed me off until I finally just blow up.

We are all chalk works of art in progress.

_____________________
I prayed to God for it soon after we moved to the Central Valley of California five years ago.  Please God- bring me friends. Even just one friend who is fun and kind and honest and has a similar mothering style. Someone who shows up when I need them. Someone who lets me show up for them too. Someone who is available and who doesn't flake and texts back. Someone who makes friendship a priority. Someone I can be strong with and weak with. Someone I can laugh and cry with. Is that too much to ask, God? And it took a long, long time. And a few friends I thought were friends but just weren't. 

And I am SO excited because this weekend I'm going away for an overnight trip with friends of my very own. It took moving to a new town and starting all over for me to realize just how important friendship is to me. I can't imagine this Moming gig without it. I'm really nervous to leave the boys- but like I mentioned in my last post- sometimes living deliberately means being inconvenienced or scared. 

I can't wait to spend time with you, Annie, Andrea, Lisa and Wynema! 

Wednesday, July 8, 2015

living deliberately

We are a society of quick, convenient and one in every color please. And even though the world is built around the theory of more convenient, we are still always in a hurry. You would think that all of that convenience would have freed up a bunch of extra time.

I'm beginning to think the key to living a rich and fulfilling life is actually a little bit of inconvenience. At least inconvenient by our standards.

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I love this quote. It is one of my favorites because it reminds me of what is so important to me-recognizing the many gifts laid out before me and living simply in the moment. But it also scares me, because that thing that I crave- the thing I deteriorate without- is also the very thing that I often forget to do. Sometimes days and weeks in a row. I am scared that when I die I will regret all of those accumulated moments that I had not lived. But then it will be too late.

I crave a slower life, full of meaning. And I'm realizing it isn't the hustle of life that is stopping me from doing and having that. It is me.


I mean it couldn't have been easy for Thoreau to just drop everything and live in the woods. In fact, if you ask me that sounds pretty damn INCONVENIENT. But it's when we are forced to slow down and live more aware that we really start to experience the beauty and goodness in life. It's when things are terribly inconvenient and we overcome that we realize how little we need to be happy in the first place. I think of my greatest memories in life. The moments that stand out. They weren't convenient at all. They were often unexpected, hot, anxiety-producing and a million other inconvenient things. 

This morning Parker really really wanted bubbles. But I needed wanted to vacuum before the boys' behavior therapists arrived (seriously, hard wood floors and two dogs and two boys leave a daily toll). I took the bubble machine away from Parker and as he started to cry I walked towards the closet that holds our vacuum. The strangest thought flashed through my mind- On your obituary do you want it to say your floors were always clean, or that you knew how to have fun?

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Fun for the win

Mahhhhh. Pewllllll, Greyson says to me hopefully. If he says it again I HAVE to get in the pool, I think. But I am so comfortable. I just laid down! The beating sun is bringing feeling back into my air conditioned chilled fingers. My eyes are closed and all I can see is yellow and gold. I have a book laid across my chest, begging to be read. Actually getting IN the pool was the last thing I was expecting to do while out at the pool.

But he changed the game when he said it again. Mahhhh. Pewl. His eyes turn up to me expectantly. And so many of the answers today were- Not now. Later. Put that back. We can't do that. When I'm finished. Not for breakfast. Maybe tomorrow. I'm in the middle of something now. It's too early/late/long/short- NO. Just no.

Sometimes living deliberately means saying yes.

I sigh, get up and tuck my book safely under a dry towel. I slowly step into the chilling water. AHHHHH!!!! I yell, slowly inching in further step by step. AUGHHHH!!!!! I hate cold water! Why am I doing this?! I WANT TO LAY DOWN AND READ.

Greyson's face explodes into a smile so big it turns into laughter. He starts to squeal and pull me towards him in the water. He is covered in goose bumps but not a bit cold- he simply feels alive. He is so so happy, simply by my presence in the pool. That thought gives me comfort and reminds me of the power the momma- the power that I sometimes abuse because it simply isn't convenient. After a few more seconds of inch by inch cold torture, I finally duck completely under. The echoing silence of sound under the water stops the constant movement of my mind. I hear the faint imprint of the outside world. I hear each swish and bubble vibrate to the top and I feel deliberate. That familiar hunger from life is, at least for this moment, satiated.


Sometimes the bounty gathered from our entire day is based simply on the things we pay attention to. I will try my best to add just a few deliberate moments to every single day.

We had a fun-filled July fourth holiday.

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Friday night we went to a small fair at a local high school. As soon as we got there Greyson remembered being there last year.

He was remembering the fireworks that hissed and sparked and boomed so loud he could feel it in his chest. It was traumatic. His whole body shook as he sobbed and begged to go home. We were parked too far to instantly get up and leave so we sat it through. It was awful.


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"We will just go on rides and walk around. No loud this year. We will ride rides and go home." He understood.

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Parker was down for a few swirls of a sparkler.

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Once the loud fireworks started Parker was over it, so my two boys and I went inside our friend's house and watched The Disney Channel. We are starting new traditions of our own.

It's the first year that I didn't push either boy to participate in any fire works. It's the first year I just didn't care that they hate them. It's funny how hard we hold onto traditions and expectations. I mourned their loss for a year or two, and now I am at peace with it. Truly at peace. You can't fake or fast forward the stuff that hurts. You just gotta go right through the middle of it.

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I'm lucky I have a six and four year old to teach me the greatest lessons in life.

Wednesday, July 1, 2015

GOD IS GOOD

It was the perfect summer day.

Hot.

Crazy over the top, hot. 106 degrees hot.

Like the kind of hot that makes you fell like you are accomplishing something just by being outside. Droplets of sweat like condensation on your forehead. Hair sticking to your neck. Sweat racing down the back of your knees. Sweaty underwear hot. Sorry just telling the truth.

Like anything out of your comfort- you get used to it. You carve out your new normal and adapt. You definitely don't let it stop you from Summer.

Yesterday evening we went to a local Farmer's Market to sweat and listen to a group called the Fresno County Youth Choir (FCYC). The FCYC is an auditioned honor group of singers aged 16-26 recruited from the from the 34 public high schools, three community colleges and two universities in Fresno County. Each summer season the practice and tour all over Fresno- anywhere from Soup Kitchens to Cathedrals and thankfully for us, even Farmer's Markets.

We stumbled onto them at this exact same place last year and we were so excited to do it all over again. 


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They were every bit as magical as I remembered. This time Grey stood back to absorb it all. He was overwhelmed by the crowd and the smaller space, but he loved the music.  Every so often when the guitars would sound a little flap would escape his hands. 

The choir's collective voices brought me to tears and gave me the chills. Not just the sound, but their heart. Their passion. The fact that they were here in the heat- singing their lungs out, sharing their gifts with us. I think some of our greatest callings in life are to be happy, and to share our gifts.

You could feel the vibration of the sound pounding in your chest. If anything the heat just helped it absorb and heal. I fully believe music is therapeutic. Don't believe me? Roll down your windows in your car, blast your favorite song and sing your lungs out. Then we can talk. 

We are still discovering the benefit of music on Greyson and Parker. Individuals with autism show equal or superior abilities in pitch processing, labeling of emotions in music, and musical preference when compared to typically developing peers. The most compelling evidence supporting the clinical benefits of music therapy lies in the areas of social-emotional responsiveness and communication, including increased compliance, reduced anxiety, increased speech output, decreased vocal stereotypes, receptive labeling, and increased interaction with peers. 

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As I sat and watched the group I saw instruments some that I don't remembering noticing before. There was a cool little flat boxed drum called a Cajon, a violin, guitars, even a ukulele. Each sound layered gracefully on top the next. I took moments to pay attention to each one separately. Then just listened to them all swirled together.

Each one sounded perfect. I noticed the piano didn't compare itself to the guitar- wishing it was stringier or smaller. The ukulele didn't try to sound like a guitar- it seemed to enjoy sounding smooth and beachy like. Each instrument just played its little heart out and sounded exactly how it was made to sound. Each layer important. Unique. Beautiful.

We compare so often. And berate ourselves in the areas we think we fall short. When really- made we weren't just made to be that - to do that- to play like that.  The more we tap into what we were actually created to play- the more we do the work of our soul. The more we feel passion for life. It's taken me so long to play the sounds I was hard wired to do. I'm still learning. We must play the music we were made to play. WE don't need to sound or look like anyone else. We must simply play.

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Luckily we were able to cool off with some ice cream.

This moment shocked me and had me on the floor laughing. I expected Parker to be completely freaked out by this guy but he wasn't at all.

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In fact, it was like they were old buds. Maybe Parker has a whole other life I don't know about. 

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My best friend, Annie and our kids- running some serious sugar off. Although we are only a couple of weeks into Summer, I'm certain last night will go down as one of my favorites.

And a little later we had the opportunity to listen to more live music in a wide open space that gave Grey room to get flappy.

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THANK YOU FCYC. You make a difference.

Ever notice how good God is when things work out? Your mom's surgery went well? Praise God! You sold your house? Praise God!! Everything at the Gap is 40% off? GOD IS GOOD!

And then at the crap hard in between times we don't mention him as much. Unless it's to ask him to change something about our life. Lately I've been trying to practice gratitude on the awful parts. Seriously. It's EASY to practice gratitude when things go our way- so really- that isn't practicing. It's during the hard times that we really learn gratitude at its deepest level. A few weeks back I had this awful adult confrontation situation. Ughhh, I had to be a grown up and do the right thing. I hate that stuff. At first I was a little annoyed with God- WHY DO I HAVE TO DO THIS? Feeling like I mistakenly got stuck in a cross fire. And then after crying and stomping my feet I realized I was picked for this exact moment. If I didn't have this awful grown up, kind of confrontational conversation- no one would. And it was something that needed to be done. Plus I suck at confrontation, so I could probably use a little practice anyway. And I did it- and it was hard but I didn't die. I changed my tune. "Thank you God for picking me to go through this. It was important. Thank you for trusting me. Thank you for helping me strengthen the places I am weak." 

I've been trying it more often. Traffic. Bad stuff. Anything that doesn't go my way. I'm remembering to say GOD IS GOOD. Because it's true. And it always seems to work out in the end anyway. 

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Wednesday, June 24, 2015

brave new world

The lights are brilliant and so bright they actually hurt my eyes. Everything is foreign to me...the street signs, the cars, the buildings, the smells hung heavy in the air; a mixture of fish and scooter exhaust and other things I can't pinpoint. My head is pounding and it is hard to focus.

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I am walking down a street alone in Shinjuku- one of the busiest places in Tokyo.

Amplified and so intensely loud, sounds reverberate in my ears causing an echo that almost makes me dizzy-making it difficult to think clearly. All I can focus on is how thirsty I was...how long it had been since I had eaten. I don't speak a bit of Japanese and unfortunately- everyone around me didn't speak a lick of English. They all understand each other though. I am an outsider.

So I search. I search for anyone that can help me. Anyone that looks like they might understand me. Anyone that can help me get my needs met. We are not talking about a need to be found smart or funny. Not a need for self-actualization, but primal, basic needs, Friend... Survival mode is kicking in.

Excuse me. Do you speak English? I would ask to foreign faces shaking their head in confusion, their hands high in the air. Then they get too close to my face, staring deep in my eyes in a way that makes me instantly uncomfortable. I could feel their breath on me. I pull back, desperate to regain my personal space as they inch closer and closer. Why are they so close? Why are they doing that? I know I am in danger- I can feel it. My adrenaline is spiking. 

People speak slowly and loudly- as if enunciating will suddenly help me understand them. The more I don't understand them- the more frustrated they seem to get with me. LIKE IT'S MY FAULT THEY DON'T MAKE SENSE. They are yelling louder and gesturing wildly. Why are they so angry? Don't they understand I have no idea what's going on? Don't they know this place is foreign to me? 

I realize I am actually able to figure out every tenth or so word around me. I can hear a million conversations going on around me but I am unable to listen to just one. I try to respond but suddenly my mouth just won't work. The wrong sounds keep coming out! Wuba, woo doo doo doo- I don't even know what I'm saying. I'm trying to ask for help and I can't even do that. I'm shaking and don't know how much longer I can take the assault of my senses. Please God, I beg, just let me find one person who understands me.

The smells. The lights. Every touch against my skin feels like a burn. I can't survive like this. I wish there was a door to my sanity somewhere. A portal that can take me to a reality not so completely out of my element. My heart is pounding... Please...someone help me- I finally am able to say out loud while I fall to my knees. No one even stops.  I just start to cry while people walk by me as if I do not exist. So I start to yell and scream at the top of my lungs, over and over again until my throat swells shut. I slam my fists against my head to stop the fear from swallowing me whole.


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This is my son Greyson. He has autism and he can't speak. Sometimes I think he is trying to talk to me- but I have absolutely no clue what he is saying and that kinda breaks my heart. I often imagine what life must feel like for him. I don't want him to be scared and frustrated. Whatever it takes I will do everything I can to make life easier for him.

I've never actually been to Japan... but I imagine being Autistic would feel something like I described above. He lives a lot of his life inside his own head. I do everything I can to help Greyson bridge the gap and feel like part of this world since I can't go there. 

I have to work hard to get Greyson to even look me in the eyes...

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I think about how important words are to me, not only to get my daily needs met but to express how I feel. How I feel is everything...and being able to express myself to others is a necessary release.

I imagine how bare life would feel without any words.


It's hard to imagine a day without Grey. He reminds me that every little thing is possible and that true joy is experienced most often in regular old every day moments. He reminds me how important it is to adapt--he actually shows me how to do that one.

I still have lots to learn.


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(a version of this post originally appeared in December of 2012. I still think about it all the time.)

Monday, June 22, 2015

the importance of a year

This year marked the boys first birthday where I wasn't sad, scared and feeling that terror in my stomach. That feeling like they are drowning, reaching out for me and I stand there watching them claw for the surface, yet I am unable to help.

The first year I wasn't weighed down by developmental checklists and charts.

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This thing used to haunt me. One day I finally threw the sucker away and never looked back. It's called HELP- Hawaii Early Learning Profile and it's a checklist containing 685 specific skills and behaviors in relation to all areas of development. I've spent countless hours of my life reviewing this with teachers, psychologists and State case workers. Plus numerous other reports based on developmental assessments.

I've spent so much time feeling scared because the communication gap was growing bigger and wider and into unknown dimensions we can't even measure yet. And there were so many skills they needed to be doing that they just weren't.

The state always scheduled reviews and evaluations right before each boy's birthday. We painfully would discuss each report and assess where the boys were in developmental age. It sucks the wind out of you to hear your almost three year old is communicating at a 10 month old level. It starts a cascade of awful feelings which made birthdays feel like funerals I simply had to get through. I felt that typical- Why do they have to grow so fast? Mom emotions. But on top of that panic and fear- Please God- Don't let them grow so fast without learning what they are supposed to be learning. I am so scared at how far behind they are. I am so scared about everything. And then the guilt- the guilt for feeling the pain. The inner voice that said You are AWFUL. If you were a good mom you would only feel joy on this day that we celebrate their birth.

I ached. For them and for me. To hear about all the things they weren't able to do was awful- but also it brought the fear of the unknown and the not knowing if we would ever be able to teach them what they needed to know. I would leave those meetings exhausted, wanting to sleep a thousand years and wake up in a place where life felt alright.


And this year for their birthdays- without warning or preparation, I suddenly just realized I wasn't sad. There were no checklists or assessments in sight. I was joyous and grateful and filled with the perspective I have tried unsuccessfully to talk myself into over the years.

A year forward is a gift. A one of a kind, incredible, irreplaceable gift. I looked through my last twelve months of pictures and I can see that now, at least for today. A year is so many good things that have absolutely nothing to do with charts and spreadsheets.

A year is approximately 1,342 leg hugs.

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A year is holidays and celebrations together.

It's 365 sunsets.

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And trying exciting, crazy new things.

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A year contains so much laughter that hopefully you can't even count that high. But I'm guessing somewhere around the lines of 40 billion infinity times infinity squared.

A year can contain the first time they ever held hands.

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And four million, twenty thousand happy, flappy jumps.

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A year contains about 48 Speech Therapy sessions where I sit on the floor so I can get the best view possible. Where I cheer and yell out loud answers by mistake because I get so excited. BLUE!!! SAY BLUE!!!

A year is 100 wishes, made by me and them.

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A year is a thousand trips to Target.

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A year is Greyson learning to write his name.
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And Parker kinda, sorta, mostly being potty trained.

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A year is a trillion kisses

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And 84 ice cream cones

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A year is a blessing. A year of outgrowing old habits and shoes and hair cuts. A year watching them sleep and breathe, chest rising up and down. A year is a gift of magic, unique to each and every one of us. A custom portrait made with all the colors of the world.

It's not about the checklists, charts and evaluations. It's about the moments. The incredible moments we have together on this earth. The hard moments, the beautiful ones, the moments we ache and the moments we can't believe how lucky we are.

That's what a year means to me.