Wednesday, April 29, 2015

dear Jesus

Dear Jesus,
Another profound and ordinary day comes to a close. It's funny- but as I sit here and chat with you all that stands out from the day was good. I don't know if that's because it actually was good or if that's because my current perspective, attitude (and hormones) are in the right place. Whatever it is, I will take it. I don't do this much- just talk to you like a pal, but I want us to be that, so here is my first attempt.

Today we had a meeting for Greyson at his school. It's called an IEP- a document created so schools know best how to educate each specific child with Special Needs.  It involves a lot of charts and assessments and evaluations. It's the third IEP we've ever had. I was so scared before the first two and this one I felt you there with me the entire time. (And yes, I know you were also at the first two- but you know I have a tendency to get inside my own head.) Of course you already know that- because you made me.


There was an entire room full of people at this meeting- all for Greyson. Do you know how happy that makes me feel? And this is the note we started on. The school Psych even drew a picture. 
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She really gets it. I'm so glad she was there. She even talked about how much she loves Greyson's hair. She spent a good minute telling me how amazing it is. As you know that's about 19 minutes too short to do Grey's hair justice, but it will do. 

The way the team describes Greyson makes me so proud that today I didn't even care about tests and assessment scores. Sometimes they form a tsunami of sad and fear and pain that threatens to drown me, but today- it was all good. He does what he does- he can't work any harder than he already does. There is no "more" we should be doing and I am at peace with that. His growth and development is happening in little baby hummingbird wing flaps every day. 

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He's exactly who he is supposed to be. When it is time to add, change or remove from his life, I know you will always show us the way. You are pretty insistent about that stuff. Grey amazes me daily and I see you in the actions and heart of the people that are lucky enough to interact with him. I often think my boys are actually closer to Heaven then us typical folks. 

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This statue is in a garden down the street from our house. Parker talks to you every time we see you there. He grabs your hands and looks into your eyes and just starts babbling non-stop. Last week he stayed there with you for at least ten minutes. Parker moves so constantly that I don't think he does anything for ten minutes long. He just talks to you as I stand there in awe. 

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He even listens too. In fact, he spends more time listening than talking. I think that he's on to something important with that. He is teaching me to listen more to you too. Thanks to my boys I see God on earth. How amazing is that? My eyes well up as I think about all the important assignments you've given me. Thank you for trusting me- I couldn't imagine my world without Greyson and Parker. They are exhausting and amazing.

Parker raises his arms up to me numerous times throughout the day.

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"I- up!" He tells me. And then as I bend down to get him he squeals in excitement and shudders he is so happy. Thank you so much for making me his mom. It is amazing. Thank you for making him be that happy, and thank you for letting me be the cause. It's so overwhelmingly good.

We've been potty training Parker for the last 6 or so weeks and it is finally starting to click to the point that our successes are outnumbering our accidents. 

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Incredible. It's the most grueling parenting thing I've done in a long time. Not because of the physical- but the emotional drain. Does that make sense? In the middle of something big like this I always lose hope and feel like it will never ever happen. I'm certain it won't. And then- long after I ever expected it- it happens. That seems to be a recurring lesson in my life.

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Good thing we had chocolate to help us.

I'm blown away by the enormity of being alive today. I went for a walk with a friend this evening as the sun was beginning to set. The light was golden and perfect. I took a million pictures with my mind. We talked about you and life and it felt like therapy. Life is astounding, and most days I don't even remember that. Today I am grateful I remembered. 

The other night I was getting ready to fall asleep. I set my alarm, took a drink of water, plugged my phone in and grabbed our dog, Jack like I always do. I buried my nose deep in his fur and breathed him in. I'm certain my blood pressure lowers every night at this time. He's been with us for 7 years, and I don't want to be on earth without him. The love I feel for him just washed over me and I started to cry. Big fat tears dropped onto his fur. All I could think was- I love him so much. Why can't dogs live as long as we do? I cried thinking about the day that I won't even remember his smell. How will I live then? Love and pain lie so close together sometimes, Jesus.

My friend Wendy sent me this quote today and it spoke to me in my core.

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I usually get so caught up in the human stuff that I forget what matters most. 

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Today I'm glad I remembered. Thank you.

All my love,

Chrissy

Monday, April 27, 2015

keep breathing

Pain holes up in the corners of our round mind. Take a deep breath now and let a little out. I'm serious- that wasn't deep enough. A real one this time. Ahhhhhhh. Stretch your jaw out. Relax that spot right between your eye brows that is tensed up now. Pain fills all the little nooks in our body because it needs somewhere to go. It fills our tiny and hugest muscles. Our joints and tendons. Deep in our bones. At the top of our shoulders it pools and bubbles up and out. And we do things to ignore it. To mask it. To numb or medicate it away. You don't need to go to a pharmacy to get medicine. Denial is one of the strongest numbing medicines I've abused in my life. But pain and joy can't be hidden for long. Because that's just a pretend act- and us human folks- we crave authenticity. And when we aren't or we can't be- we prepare to explode.


I was on a walk this morning- my one good thing for myself has stuck. I saw this sidewalk- and from the top looked like a normal sidewalk.

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But as you can see from this view- this sidewalk is lifted up at least 3 feet higher than the rest of the walkway and so close to cracking and breaking into too many pieces to ever put back together again. Pain is like those tree roots- it has nowhere to go so it finds a spot.

 "That's the thing about pain. It demands to be felt." (Augustus - The Fault in Our Stars).

Today I was reading through the assessments given to Greyson for his school triennial IEP (kinda like a yearly business plan- but for kids with any special needs). And I started to feel that familiar vibration of uncertainty and pain. I felt a heaviness in my chest and it hurt to breathe. Inside I was brewing a big ball of fear, pain, sadness, uncertainty, anger and just plain tired of this feeling-sewn together for all the tests and assessments and both the boys and all the years. That's a lot. Then I got to the Expressive Language portion of his Speech Assessment and it hurt to read.

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Ugh... Severe. It's just the worst word EVER and is NEVER used for anything good. A severe car accident, hair cut, wound- and... speech disorder. I sat there with this discomfort, and suddenly I realized I was moving through the stages of "assessment grief" much faster than ever before. Sadness (this isn't right or fair- he works SO HARD), fear (what if, what if, what if), ANGER (grrrrr- this test is BULLSHIT. I won't let any test tell me blah blah blah.)

I sat down and wrote THIS.

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And all I felt was peace and joy. Suddenly all the bad feelings were GONE. I focused on how far he has come- over a million miles. I acknowledged the bad stuff's presence and I made peace with it. Making peace doesn't mean you give up- it means you let go of the labeling of your situation and the need to control everything. This is our story- ALL of it. How proud I am to live it. I poured all those insecure feelings into something beautiful. My Mommy Assessment. Assessments are good- because professionals need to know the best ways to help our children. We need them to make sure our educators are getting the appropriate view of our child's abilities. We need them to look back on to see how far we have come so we know how best to move forward. We need measurable goals. It's not personal- it's business, and we are in the business of making happy, successful children.

In a way- beyond all those crappy feelings was a fear of not being able to control any of this (Control Freak much?) Because I love to control things. I love to do A- no matter how much work it takes- because I know it will give me B. I want it to give me B every time. But autism (and heck- much of parenting) follows no linear alphabet. And that's ok. Seriously.

How many times have things gone NOT AT ALL as I meticulously planned and it ended up being exactly the right, best thing ever? Too many times to count- right? So we really need to pour less energy into this control business that we aren't that great at anyway- and MORE energy into the business of letting go. Remind yourself of the beauty of different. Park somewhere different instead of your usual spot. Eat something totally different than usual- like Thai food! (I've never had it- is it good?) Sleep on the opposite side of the bed for a night (that sounds awful right?!) You control freak you! You creature of same! You sound like me. I often say I sweat the little things- the big things I'm awesome at. But practicing little ways of different helps me let go.

Take a deep breath and let go. We can work on it together.


So Much Love,
Chrissy

Wednesday, April 22, 2015

the beauty of different

This post is dedicated to Greyson...

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And Parker... everything that matters is.


Below is the talk I would have with my boys when they were old enough to understand, if they didn't have autism... but if they didn't have autism- I never would have know how important it was to have this talk in the first place. Thank you my loves for teaching me what matters. 
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Greyson,

Have you ever noticed how God made each person so different and unique? He made Daddy really tall, and me really short. And he gave you hair the color of coffee with cream and gave Parker hair that looks like the glowing sun. Jack the dog has a really short nubbin tail and Belle has a long curly one. Each one of us is God's own personal work of art and we are made perfectly, exactly the way we are.

Sometimes people are also the same. Like you and Parker both love cars, swinging and riding in our big red wagon. You both have bright beautiful eyes in a color so pure blue it makes the ocean jealous. The older I get the more I realize that all people are some mixture of the same and different, and we are all God's art.

I want to talk to you about the little boy down the street, Matthew. Matthew is the same as you because he loves swimming, playing outside and watching the movie CARS. What ways have you noticed that Matthew is the same as you? 

Matthew is also different from you because he has something called autism. His parents found out when he was two years old because he wasn't yet talking and most kids have learned to talk by the time they turn two. God made Matthew's brain different from yours and mine. He learns differently, plays differently and he isn't able to really speak with his mouth. Matthew goes to a special Teacher called a "Speech Therapist" and he works so hard to hopefully learn to talk one day. Every time you talk to him it helps him understand language better. Even if he doesn't answer, show him things and talk to him. Ask him to play with you. Help protect him from those who are unkind to him. Just like I hope your friends do for you- we all need people to love and help us. 

Even though Matthew can't talk with his mouth, he can talk with his eyes and his whole body. When he is happy his eyes shine, he flaps his hands and he jumps up and down over and over again. When he is sad or frustrated he cries or screams or falls onto the ground. Could you imagine how hard it would be to not be able to tell me what you want or need? How would you communicate if you couldn't use any words?

One of the most important things I want you to learn is that different isn't bad or weird. We all have things that we are good at and things that we need help with. We all have things that we are supposed to teach others, and things that we are supposed to learn from them too. Some people are good at math and some people struggle with it. Some people are good at sports while others may be good at art. No one is good or bad at all the things. 

Some people get around with a wheel chair and some people use their legs to walk. Some people look big and some people look small. Anytime you have any questions about people that look different from you, you can ask me. Ask me anything. All our life we will be meeting new people- some that are the same as us, and some that are different. Once we really get to know another person we often realize that we are all more the same than different. One thing you always need to understand, is that even though Matthew is a little different than you and can't talk, he still has feelings and has a heart and wants to be loved and cared about just like you do. In that ways we are ALL the same.

Monday, April 20, 2015

God, yoga, gratitude and life

Recently I was speaking with a friend about how lucky we are that everything worked out just right with our recent move this past January. In December we decided we wanted to move school districts for the boys. So we listed our house, made a contingent offer on another home we fell in love with, and hoped and prayed the timing would be right. I held my breath for weeks, knowing this was the right answer for our future and nervous it wouldn't go as planned.

And for the first couple of weeks I was high on hope. This is going to work! This is awesome! I just know this is the right path God, I feel you leading me. And then slowly, my balloon began to deflate after just a couple of unsuccessful open houses. And by "unsuccessful" I mean people didn't show up and start a bidding war right on our very front door stoop. Listen, this needs to work out THIS EXACT WAY, I said to God. I figured out the plan and I know the school districts better than you. You are up there figuring out war and famine and Cancer and stuff. I got this covered- but I need you to have my back.

And then before even a month was up- it all worked exactly according to plan. We even made just enough money from the sale of our home to buy a pool here at our new house. How perfect is that?! If you've read THIS POST you know that Greyson doesn't just like the pool- he needs it. It's sensory therapy that he needs to feel comfortable in his skin. It calms him like a drug.

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So today my friend said, I still can't believe how lucky you guys got. You found this house and your house sold right away. And now you have this huge, perfect house with a huge back yard and a pool! And I remembered how grateful I was when it all worked out. And then I remembered that it really had nothing to do with me or my grand plan. I just followed the signs that were leading me. You know, it wasn't luck I said. It was God. For real- it was ALL God. Not me, not my plan, not luck. Not even our awesome realtors. It was God. It was all so complicated and perfect and easy and so clearly EXACTLY what was supposed to happen. I'm not that talented- or lucky to be honest. And I remembered how scary that in-between part of not knowing felt, and how a tsunami of grateful flooded in and erased any trace of fear the day we accepted the offer on the sale of our home. 

I imagine God and I having a great conversation about it one day. God- way to go on that big life change we went through- I think it was in 2015? I don't know how you pulled that complicated maneuver off, choreographed quickly and so completely just so. My gratitude is beyond words, but I know you felt it when we were at the Title company making it all official. Or when I was walking out my front door for the last time. Or how about when I got to watch the boys roam free in their very own back yard. 

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Like tonight when Parker swang into the sunset. 

Or the first time the boys got into the pool this past weekend. That was incredible.Thank you.

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And I would glow with a happy you could almost hear, and listen to him explain how happy he is when we are happy. He would tell me that sometimes he ached because of all the times I felt so overwhelmed because I felt like I had to do things all on my own. Chrissy, I was there the whole time, he would tell me and I would feel at peace because I knew he was right.  

And today I remembered how grateful I was when all this went down in December.Yes, I said- was. Because you see I kind of forgot all about how amazing that was a few weeks after it happened. And then I started the blur of life again and found the -next big thing that I can't wait to happen- for things to be right. I kind of feel like God's fair weather friend sometimes. I pray for things. I am grateful for things. Grateful for how much love I feel when I look at Parker's perfect chubby rectangle feet or the sunkissed highlights in Greyson's soft hair. Or grateful for the fact that I can buy bananas whenever we run out. I rejoice when provided to and I feel down and scared and disappointed when things don't work out right according to my version of right. Have you ever had a friend who only called you when they needed help with something like moving or needing a drive to the airport? We've all had a friend like that- but hopefully not for that long because they aren't that much fun to be around.

Today I remembered not to be her. I'm working on being more of a consistent friend, instead of a fair weather one. Remembering to let go more. Remembering to be grateful even when things are smack dab in the middle of uncertainty and even when things don't feel like they are going the way they are supposed to be at all. I'm not so good at it- but I want to try.

I went to hot yoga again this evening. Grown up me made adolescent me do it. 

But I don't want to go I whined. I'm still sore from last week.

That's ok, it will help those sore muscles stretch out, grown up me said in a tone that meant no nonsense.

But I'm too tired, I pleaded.

That's ok- it will energize you. 

But it will be too late, hot, far, sweaty... I trailed off. I ran out of buts and I knew I was defeated. Grown up me was so excited because I knew I won. And I needed it. And adolescent me was dreading it. The heat. The awful poses. The length (90 minutes!!!) I walked in to the warm room and the warmth welcomed me. Most "hot yoga" classes keep the temperature between 90 and 100 degrees. The room was dark except for the glow of candles. I rolled out my mat and placed a towel and drink within reach while I began to stretch.

And as soon as class started I thought- WHAT WAS I THINKING?! I can't believe I came here on purpose. And I went through the grief stages of yoga; this isn't too bad, this is getting hard, this is awful, this sucks, this hurts, it will be so embarrassing if I pass out, maybe I can sneak out, this isn't so bad, this is amazing, I am strong, I am brave, I am present. I realized I read and watch movies to escape my life. But I go to Church and yoga to be more present in my life. And in a world full of mostly busy blur days (dry cleaning, work, groceries, pay bills, wash the car, call the doctor, pick up a prescription, fill out paperwork, mail a package, check your phone a million times, get your hair cut, pick up milk) whirling by - present and escape are both needed.


And I remembered why I love yoga so very much (in addition to hating it)- because it is so much like life. And I sat in my car afterwards while the golden setting sun filled up my car and with gratitude, I wrote out how I felt. I wrote it out just for me- because sometimes- when you write it to share it -it becomes diluted. Here are the ways I found yoga to be like life:

1. You can't pay attention to what anyone else is doing. Some people are way more limber- they are not there to intimidate you. Just focus on you. Some people have hairy legs. Some people breath really loud. Some people sweat buckets. Some people barely sweat at all. It doesn't matter- none of it. Just focus on what you CAN do and work on the things you want to do better. Everyone is good at some of the parts and not so good at some of the other parts. Even the instructors.


2. The hard and awful poses feel like forever. I swear during one tonight I thought I was going to pass out. (WHY DID I PICK THE SPOT RIGHT IN FRONT OF THE HEATER??) And then I thought- If I pass out I hope they don't call an ambulance. That will be so embarrassing. And my tight and aching muscles would start to scream and wobble and I would think- I CAN'T DO THIS ONE MORE SECOND. But I could. And I did. Every single time. 

3. Each hard and awful pose always ends. Always. Each moment felt like a lifetime and then suddenly we were moving on to something else. Easy, hard, easy, hard, hard, easy. Yoga. Life.

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4. The harder the pose the more you grow and stretch and strengthen. You can feel the stretch of your muscles and you actually create more room inside your body. You lengthen and open up places that have been closed for much too long. We aren't meant to carry the stress of the world in our muscles but we do. We must find ways to get that out.


5. You don't have to do it perfectly- you just have to show up, be present and try the best you can today. It's funny- during one pose I thought- before my knee went bad I could totally do this. And 30 year old me would have rocked it. But then I realized one day 60 year old me could also say, Wow- when I was 40 I was so strong and I didn't even realize it. I'm trying to stay present and just realize it NOW. I'm trying to practice gratitude now.

I'm so glad grown up me made me go. I needed it. I told you so.

Thursday, April 16, 2015

one good choice

We make our children do many things they don't want to do because we usually know what is best for them. We (try to) make our teenagers do things they need to do too. And at the very least- if they don't, we can deprive them of things they want until they do. And then you grow up and there's so much that we already have to do. But then there's a whole other world. A place where we should do something- but we don't have to. And nobody is able to make us- which is awesome. And very bad because we don't always know what's best for us. Or we do know what's best but it involves being uncomfortable- so we just don't do it. And the older we get the more we do whatever we can to avoid discomfort. And all that running and planning and avoiding discomfort... Is so...uncomfortable.

So many of us go through periods of time where we are desperately searching for ourselves. We don't know why we are here and what we are supposed to be doing with our lives. I forget what's important to me. I forget what makes me happy. Sometimes I'm afraid that I will never remember what makes me happy again. The thing is-- we are constantly changing. And on top of that our lives are constantly changing. There are so many peaks and lows. This is just how life is supposed to go. And sometimes the path is so rocky and we aren't wearing shoes but we just have to walk through it anyway. We aren't lost. We don't have to assign labels to these stories we are walking through. We just have to keep walking.

I have been on a spiral lately. And the worse I have felt-- the more bad choices I made. A little over a month ago I got my hair highlighted and I hated it. HATED. I didn't recognize myself in the mirror. I couldn't stand getting ready in the morning so often- I didn't bother. Why bother putting on makeup- since my hair looks so bad? Why not put on crappy clothes? Might as well eat the kids fries because what's the point of eating healthy? All of this self-loathing was contagious throughout all areas of my life. Why make dinner? I'm already feeling like a failure. Why call a friend? I'm just a big fat downer.

Finally last week I had a heart to heart with myself. I was so tired of being sad. I was exhausted of running from discomfort. I was tired of making bad choices and then feeling guilty for my choices. I realized I was in a hamster ball and I wanted it to stop. One good choice, I said to myself. One good choice today, Chrissy. So for the first time in ions I went walking. For 15 years I ran. It was my best friend and how I got out the crazy. And then two years ago my right knee went to crap and I couldn't do anything for a little while. And then I could go walking but I didn't because who wants to walk when I used to run? It felt like a demotion. So then I just started to do nothing. And at first it was so hard, because that crazy would build up until my skin wanted to explode. But I got used to it. And then the very idea of exercise intimidated me. But finally last week I went for a walk. And I sweat while the muscles in my hips creaked to life. And my back lengthened by a few inches. And I felt a glimpse of me. Of me-me. The real me. The me I would totally be friends with if I met her- not the me that's been hanging around a little too long lately. And something clicked inside my head. I remembered how much power my mind had. I remembered that nothing is permanent. I remembered how to find happy and I could breathe again. I didn't really care about my hair anymore.

I've kept up with my one good choice, walking almost every day. And for the first time in YEARS I did yoga.

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Not just yoga but HOT YOGA. 90 minutes of Level 2-3 ADVANCED YOGA, despite the fact that I haven't moved some of these muscles in years. My muscles were in shock. Remembering poses but lacking the strength to hold it for any sustained length of time. I tried my best and I was so proud. I looked at my hands during push up number 4,670 and they were shaking. My arms felt like jello. I realized that it is at our weakest that we display the most strength when trying something new.  If I was all limber and strong it wouldn't be that hard to do uncomfortable poses. But now it was so hard. Impossible at times. I thought about leaving from about minutes 23-80. But I stayed with it. I left there feeling like a sweaty goddess yoga warrior princess.

The instructor read a passage from The Four Agreements and I just knew I was meant to be there in that moment, hearing, stretching, sweating and feeling.

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And the funny thing is- my one good choice was also contagious.


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Why not eat a salad- I went for a walk today. Why not re-buy all my vitamins I ran out of a few months ago. Why not call your friend and ask her to go for a walk with you too. Why not buy 5-time pass for yoga? Why not shower and get ready and put on makeup? I feel a peace that can't be faked.

Yesterday we celebrated precious Parker's birthday.

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It was the first time the boys have had a birthday that I didn't feel sad...I didn't feel the ache of what he should be doing compared to other 4-year olds are doing. I didn't feel sad that he's getting further behind. I had this peace in my heart that he is doing exactly what he is supposed to be doing right now. Parker is happy. He's so so happy and he doesn't give a rat's ass about developmental charts. 

And with the author's permission, I want to share this incredible letter with you. Raw, honest and beautifully written. I held my breath the entire time I read it- it touched my very core. I'm so proud of this young man- he did all the hard work and soul searching- all I did was write. I'm touched beyond any words that Greyson and Parker helped him find his happy and will help him do his part to change the world. He made one good choice- which will help to change the trajectory of his entire life. This letter gives me so much hope- and I want to share that with you.

Dear Chrissy, Greyson, and Parker,
I am currently in college and I am 19 years old. I am at that point in my life where I am floating between the past and the future. I am having the hardest time figuring out who I am and who I want to be.
I have changed my college major over 97 times. I have been suffering from depression and anxiety and it's all just piling up on me.
So here is the part where you guys come in. I found your blog by mistake, but something tells me it was by fate. Reading your blog encouraged me to spend some time with a child who had Autism, because I wanted to see what this was all about. I worked with a 6 year old boy in a summer, knowing nothing about autism or kids in general. In my first three hours with this boy, I was confused. Here I was, hoping to inspire him and help him because I thought he needed it. Somewhere along the way I realized that it was him who was inspiring me. He taught me to appreciate the simple things in life that I take for granted every single day. He taught me all the different ways you can pick out grass between the cracks of the sidewalk, how to ride my bike without keeping my feet on the pedals, and most importantly how to be happy. Though these things seem so small compared to what we as adults deal with on a day-to-day basis, they’re important. He taught me to never take the small things in life for granted; to make a big deal out of our tiny accomplishments, to keep going when we fall off our bikes and pedal further up the hill even though it’s only going to get harder to pedal the higher we go. He taught me that eventually we will get to the top of that hill and find the sun up there, brighter than ever, shining in our eyes with our hearts beating faster than ever. He taught me that it’s all worth it in the end. It goes without saying that sometimes you just need to spend a day with a kid to understand life again.
Your blog, your stories, your words, your memories; they enlighten me. They change my life so much. They make me happy. They give my life purpose. They are the reason I am now going to spend the rest of my life serving others, especially those with special needs, as an occupational therapist.
You have changed my life, and I thought you should know that. What you are doing and what you have already done is making a huge impact in so many people's lives, especially mine. You are changing the world and I wanted you to know.

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Thanks for helping me find the right direction.

From,

Jake

You can read more of Jake's awesome musings here

Monday, April 13, 2015

Parker turns four

I woke up suddenly, noticing the alarm clock glowing 1:03am in blue. The pressure in my back had launched to a entirely new level of awful and it was impossible to take a full breath in. I sat partially sitting up because of heart burn. I was 36 weeks pregnant and I was willing to stay in this uncomfortable state for 4 more weeks because the truth is- I wasn't ready to be a mom to two. One felt so incredibly hard that I couldn't imagine doing100% more work at the same time.

I got up and walked around, waiting for my back to stop screaming. I went to the bathroom. I got back in bed and the pressure was getting worse. I never had Braxton Hicks contractions with either pregnancy and with Greyson my water broke and then my labor was sped up with pitocin. Contractions didn't feel like the books described- a band tightening around my stomach. They just felt like pain and I can't breathe and my back hurts and I think I might die.

My back began to ache in a regular pattern and I noticed it was at its worst every five minutes. But I wasn't ready- so I was determined to keep this baby inside me. I was so incredibly tired so I attempted to go back to sleep. That proved to be impossible; I tossed and turned, read to distract my mind, got down on the floor to stretch out. The pain was coming every 3-5 minutes and I finally started to consider going to the hospital. Maybe when the baby was coming out actually wasn't up to me. Hmmmpffff. It was 4am and I wanted to wait until 22 month old Greyson woke up for the morning so we didn't have to get him out of bed to take me to the hospital. I showered and got ready.

The date was April 13, 2011 and it felt so off -but I wasn't sure why. He isn't supposed to be born today, I kept thinking. It wasn't just because I wasn't ready (which I wasn't). It wasn't because his due date wasn't until April 29th. I just felt extremely unsettled but couldn't figure out why. Finally at around 6:30am I snatched Greyson out of his crib because I couldn't wait until longer. Then I attempted to wake up Michael- which is no easy feat.

Michael- babe. Michael. Michael. Michael. Wake up. Wake up. (tap tap tap). Wake up. 
WHAT?!!! He yells, scaring the bejezuz out of me.
I think I'm in labor. Can you take me to the hospital? Michael zombies into our closet to get dressed. He comes out wearing his "Harvard Medical School" T-shirt.

YOU ARE NOT WEARING THAT SHIRT. I tell him with fiery insistence. Michael LOVED the attention he got when he wore this shirt. "Oh- did you go to Harvard Medical School?" People would inevitably ask. And instead of saying, "No" (the truth) he would go into this long explanation how he went to a 5 day training class for pharmaceutical reps at Harvard. "It's basically the same exact class that doctors take but slightly abbreviated" he tells them. I heard this story OVER and OVER again. I wanted to donate this shirt to Good Will so I could stop hearing the story about how Michael (sorta, not really) went to Harvard.

"Why can't I wear it?" He asked, seriously confused. "Because we are going to a HOSPITAL. And all day long the medical staff will be asking you if you went to Harvard -which you didn't. And people who went to Harvard don't have to wear the shirt. And I will be there needing help and attention and medical care but you will be so busy telling them that you went to Harvard and giving them all the details. AND PS---I took the exact same Harvard class on the Cardio-vascular system but you don't see me performing bypass surgery or wearing any stupid shirt! You need to change right now.



We drove to the hospital in a daze. I was so scared. Not of labor- but of the fact that I knew my world was about to completely change and I had no idea what this new world would look like. Things outside of my control is my kryptonite. I ached for Greyson, sick over what I felt like I was doing to him. Ruining his life. Yep, that's what I thought. Yes, I know a sibling is the greatest gift and he will adjust and blah blah blah but that didn't change the fact that the tight little universe he and I had created together was forever gone.

We had only lived in Fresno for 10 months long. My family lived thousands of miles away and we didn't know what to do with Greyson, so he joined us in triage at the Labor and Delivery ward in our local hospital. I prayed the DVD player and big bag of snacks would entertain him for at least little while.  The greatest nurse strapped my up to a machine so she could monitor my contractions. She stepped away and Michael took a look at the paper print out the machine was creating.

You aren't having contractions, Michael reported.

Ouch, ouch, ouch, owwww..- WHAT? What makes you say that? I asked him while wincing in pain. See the line going up and down? If you were having contractions the spike would be going higher and lower off the line. Yep- that line looks to straight to be contractions.

Ok- so now you are Harvard trained OBGYN too?! I ask, beginning to wince with the next onset of pain. The nurse came back around. "Am I having contractions?" I asked. She checked the machine. You sure are, she replied. It looks like they are every 3 minutes now. Next I'll check to see if you are dilated after I call your doctor to let her know we have you here. I gave Michael my best I told you so glance.

I was almost two centimeters. And after an hour of regular contractions I was still only a two. They had me walk around the campus for an hour hoping to speed things along....in my Uggs and pajamas.

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They checked again and I was still dilated to two so they sent me home with "failure to progress" marked on my chart. For the next two days I had contractions constantly- almost every five minutes. I would yell out when experiencing a doozie. I didn't want to go back to the hospital if it wasn't the real deal. Finally on the morning of April 15th I knew I was going to meet Parker for the first time that very day. I went back to the hospital- afraid they would send me home again.

I'm going to see how far along you're dilated, Laticia the nurse informed me with the snap of her rubber gloves.  WE NEED A DELIVERY ROOM STAT- she called out to the supervising nurse. How far along am I? I asked her in fear. 6cm sweetie. We'll get you in the Delivery Room right away. 

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And thankfully they did.

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My very own little slice of perfection. Thank you God. Thank you is not enough, but thank you.

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I can see just a tiny bit of his Doodleness here.

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And Michael wore the damn shirt to pick me up. I didn't care anymore. I had a brand new baby as my parting gift.

This Wednesday Parker, aka Doodle, the Parker Doodle, Monkey Doodle, Doodley Doo turns four. What a short, long, exciting, hard and beautiful trip it's been. God really gives us the best stories to live out.

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Four and one to grow on. He's my heart. 







Monday, April 6, 2015

he is risen

I hesitate labeling it. I do that- call it something like healed or moved on, and then I am shocked when a day or week or months later- if feel like I catapulted right back to the beginning. So I will not label, I will just tell the details. And if I find myself moving through a different and unwanted chain of thinking- I will not dwell on it. I will not label that either- as a setback or emotional regression- instead I will call it being human. How much happier would we be if we didn't expect so damn much from ourselves? As far as I'm aware this is all of our VERY FIRST TIME here on earth. And we don't know exactly how to feel, how to share, how to grow, how to connect. We learn as we go along. We expect our emotions to be science, but they are art. They are not easily defined or confined. We just need to move through them.

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Easter was so so good. And not because the boys looked for their Easter baskets or hunted for eggs. The past few years the void of those occasions hurt me so much it even surprised me. It was a parenting expectation of mine woven throughout everything I thought parenting was. And I felt like I was being robbed of that- and it pissed me off. And then I felt awfully guilty for being pissed off in the first place. And this year- I just didn't care. Easter baskets were prepared and shared as an afterthought as we were rushing out the door for church. Parker clutched one plastic egg in his little dimpled hand on our drive. That made me glow.

I was raised Catholic but open to all religions that are open-minded and respect the rights of other religions. I don't agree with institutions that believe there is only ONE way to believe and everyone else is wrong or going to Hell. I don't understand how some people use the bible to judge and put down others. I believe that is the opposite of everything Jesus and religion is about.

This Easter we accompanied our dear friends to their Christian Church and I loved it. This joint has a sweet Pastor AND you are allowed to drink coffee DURING Church. They don't have a dress code. You are just supposed to come dressed as yourself. We didn't have to sit down and stand up and kneel and sit down and stand up eleventy hundred times like you do in Catholic Church. We are trying another new Church next week too. We are open to suggestions!

Afterwards we spent the day with friends that feel like family.

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It's so hard to feel like part of something bigger when your family lives so far away. Wynema and Ryan took away that ache. (THANK YOU!!) Plus it doesn't hurt that their house is one of the most fun places on earth.

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Have you ever played the game Corn Hole? At the risk of sounding like a commercial- GO BUY IT RIGHT NOW. It's fun for all ages!!! Don't ask me the rules. I just threw the dried corn filled bag and hoped to get it into the hole. And yes, there are a million jokes you can make around the name of the game which makes things even more fun.


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And it was FREEZING (for California) but the kids still got in the pool. CRAZY. At what age does personal comfort overtake fun? I want to go back to that age for a day. I love this picture of Cardey jumping because Greyson gets SOOOOO excited every single time someone jumps in the pool. See his little body jumping behind her!?

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Parker trying to be like Cardey. Jumping at LEAST three inches onto the first step.


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Both boys each gathered up a whopping one egg each on their hunt. And you know what? They were happy- and then so was I. (And then I quickly gathered their remaining eggs so I could eat the candy inside. Thank you so much Cindy!)

This Easter helped me put so much in perspective. It reminded me that Mother Mary went through losing her own son - she knew a pain much greater than autism. The holiday also reminded me that it's never about the stockings or reindeer or Easter Bunny. It's about love and connection. It's about finding ways that we too can come back to life and find our way to what really matters. 

So Much Love,

Chrissy

Wednesday, April 1, 2015

the evolution of awareness

April is Autism Awareness month.

And I'm going to be honest, I just don't know how to feel about that. For me and others touched by it, autism awareness is often a lifelong experience, not an event. And sometimes it feels like I've suddenly been thrust into this club where everyone else is excited about something that I can't even define. I don't really know what to do differently for this month, so Instead I'll do what I do best, share my heart and share what autism awareness means to me.

I don't think of myself as an autism mom. I am a mom. Pure and simple. And God gave me the best gifts imaginable- two little boys...

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Greyson

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And Parker

And both of these good and perfect gifts have autism. 

Autism has been a part of our life for almost three years now. It feels like a lifetime, yet I know one day I will look back at these moments as just the beginning. When it comes to autism, my definition of awareness is as fluid as the wind. Each marked change in time brings with it a new definition of awareness. At the beginning awareness meant feeling comfortable enough to say the word. The word I feared. The word I prayed I would never ever say or hear. 

Autism.

Yet still, the doctor said those dreaded words that sliced through the air and changed our family forever. Your son fits the diagnostic criteria for autism, he said. And although he kept speaking, I don't remember much after that, except feeling shattered. My son has autism. The boy playing with the truck at my feet has autism. Greyson has autism. The words tasted like metal and it was impossible to think them without crying.  I didn't think we would ever be able to claw our way to a new normal. YesI'm calling to get an appointment for my son. He needs to be seen because... he... he has autism. And then the painful phone calls letting family members know. Greyson has autism. That simple and truthful sentence stole all my strength each time I had to repeat it. 

But each time I said it- it also got easier and the tears came slower. I was able to push them back inside before they snuck out some of the times. And then one day- I couldn't believe it-I could say autism and the tears just stopped showing up.


And then awareness morphed into learning as much as I could about autism; for my son and for my family. I read and read and read- in line at the grocery store, under the covers at night and while I gave Greyson endless pushes on the swing. I read everything I could: personal testimonies, scientific research, books and articles. I didn't really understand what autism was and I knew I needed to get my PhD equivalent overnight. Through research I realized that autism is the fastest growing brain developmental disorder. Its prevalence is not affected by race, region, or socio-economic status. One in 68 children in the US are identified as having an autism spectrum disorder. I learned a new language that revolved around Behavior Therapy and special diets, bio-medical treatment and Speech Therapy. I was overwhelmed.


The typical challenges of being a parent are hard enough-  making sure the kids eat enough vegetables and get enough sleep and make it to school on time. Being a mom to a child with autism infuses those challenges with the heartaches of communication disorders, social difficulties, struggles with behavior and a fierce resistance to change. It means trading T-ball practice for Speech Therapy. For us, awareness meant knowledge so I could do every possible to make sure Greyson grew up as happy and successful as he can be.


While mining the chaos and frustration of every daily life, I also found things I wasn't looking for, AMAZING things like beauty and humor and hope. (So much hope.) I found an outlet in writing and I shared our story, chronicling a very public and emotional diary of our journey -from early autism signs through diagnosis and the daily battle of acceptance. My second born son, Parker was also diagnosed with autism. I found purpose in my life that I didn't know was missing, connecting to an ever-increasing number living a similar journey. With one in 68 children being diagnosed on the spectrum, there's an entire world of frustrated moms and dads who just want to feel a little less alone. I realized then that Greyson and Parker are perfect exactly the way they are, and life with them is a gift so incredible and profound that it's impossible to explain. I knew we needed to give them therapy and all the tools available to help them so they could feel less frustrated and more understood. 

They have taught me more about unconditional love, acceptance and hard work than I could ever teach them, even if I lived to be 1,000 years old. 

They show me how incredibly beautiful it is to be exactly who you are instead of trying to conform to some made up society norm. As I stand in awe and let them be them- they have taught me how to be me. Awareness had morphed from research and learning into understanding, acceptance and connection. 

There was still one group of individuals I was desperate to connect with. People who weren't affected firsthand by autism. I needed them to see what I saw in my boys. When I became aware that I couldn't change the fact that my son had autism, I realized that instead I would work relentlessly to change the world. I would change the way people thought about and talked about not only those with autism- but any group that is different and struggles for acceptance. When you shine a light on the places that are dark you take the fear away. 

Because Greyson and Parker see and experience the world differently, the world sees and experiences them differently too. I needed people to see that although my children learn, communicate, play and behave differently- they are still amazing and have the same good soul as everyone else. They need extra patience and understanding. They have to work so hard to adapt to the world, but sometimes we need the world to adapt to them. I need you to teach your child about kids like Greyson and Parker everywhere.


I spoke our truth, sharing our journey out of an unfathomably deep chasm of despair to a plateau of acceptance towards fleeting peaks of happiness, mourning the death of old dreams and celebrating the birth of new ones. I shared what autism looks like and feels like for us. By sharing these hard-fought heartbreaks and victories I realized that you actually don't need to have a child on the spectrum to relate to all the gorgeous complexities of life. Along the way I learned there is as much good in the world as I see in my boys and that the good always outweighs the bad. The strength and tenacity I see in my boys infuses me on a relentless pursuit of change and connection. We laugh, cry, teach, learn (and unlearn) while giving it our all, every single day. Awareness was the catalyst for recognition that life is a gift for each one of us. And just because it isn't easy, doesn't mean it isn't good. It's so darn good, in a million unexpected ways. We struggle and succeed. We fail and try again. We all are human and have so much more in common than at first I could have ever imagined. 


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Awareness begins the moment you open your mind and your eyes and your heart to a new way of thinking and oftentimes, a better way of being. Awareness is love, it is change, it is concern, acceptance, education, connection, understanding, and the reminder that we are all more the same than different. Awareness is research and funding and assistance for those that need it. Awareness is respect for the fact that we are all created differently, and we all have different challenges as well as different strengths. Awareness is a poignant reminder that we all have something to teach each other, and we all have something to learn from one another. Awareness is profound and simple and changes the world, two eyes at a time. Awareness showed me that autism was not the end of our world at all- it was just the beginning of something new.

What does awareness mean to you?