Jul 242014
 

Donald Miller is like the Pied Piper to me. He uses his words to create this curious, compelling music that forces me to abandon what I’m doing, lean forward, squint my eyes and turn my ear towards his voice. I am fascinated by his musicy, spacious faith that allows room for art, humor, doubt and differences. The first time I read Blue Like Jazz I thought: Wait a minute, here. You don’t have to be certain and loud to be a faith writer? You can work out a faith that sounds more like an incredible concert than a hostile courtroom? You can do that?  

A few months ago I was preparing to speak at a church conference and this dude who looked EXACTLY like Donald Miller walked backstage (back-altar?). Obviously, I couldn’t stop staring at him. Sister nudged me and said, “Why are you staring at that dude?” And I said, “So weird. He looks so much like Donald Miller.” Sister stepped on my foot but I still couldn’t stop staring and since it was a small room: awkward. She tried to rescue us all from the moment by engaging the guy directly. She said, “So sorry we’re staring. Apparently you look like this writer she loves named Donald Miller.” The dude smiled and waved and kept walking. AND THEN AFTER HE LEFT BACKALTAR I FOUND THIS NAME TAG ON THE TABLE.

don miller

*I don’t want to talk about my kitchen. Keep your eyes on the name tag, please.

And so IT TURNS OUT THAT the guy who looked exactly like Donald Miller backaltar WAS THE ACTUAL DONALD MILLER which really, when you think about it, is the most logical explanation for the entire situation. I stole the nametag and wear it around sometimes because I think it brings Donald and me closer.

Here’s the point. Donald Miller asked me to write for his blog, Storyline, and I’m just really truly over the moon scited (scared/excited) about it. And so now I’d like to invite you to hop on over there and read a response I wrote to an email that one of YOU sent me recently. It’s one of my favorite things I’ve written in a long while. Hope you enjoy.

You Don't Need More Talent or Time



Carry On, Warrior
Author of the New York Times Bestselling Memoir CARRY ON, WARRIOR
Join the Momastery on-line community on Facebook, Twitter & Pinterest


Jul 232014
 
Our Messy, Beautiful Summer Week 5

A guest post by Heather Bowie

Here’s my messy truth: soon after my son Aidan was born thirteen years ago I wished he would die. 

Aidan was born with Aidan in the hospitalcomplex medical needs and spent the first three months of his life in the neonatal ICU. When he came home on oxygen and with a g-tube, without a diagnosis, prognosis or any medical staff to reassure us, I just wanted him to die quickly.

It’s such a horrid, shameful thought that I carried my secret burden alone, not even sharing it with my husband. I was lonely, overwhelmed, exhausted, and scared.

Because of Aidan’s medical issues, I couldn’t feed my own child nor did he even have the ability to gaze at me or coo in response to my voice.  He was a stranger, really, hardly present. Those blissful feelings of maternal love were nowhere to be found, though I faked them well enough and smiled proudly at my son in front of others while grieving and hiding in a fetal position at night.

I wanted him to die, not because of who he was, but because of who I was – a mistake of a mother.

I felt responsible for him, obligated to try to love him, but all of that pressure just left me a sinking ship, weighed down by shame and failure.

When Aidan was almost a year old, another mom of a child with a disability saw my tired, distraught self and told me this, “You probably don’t think you can handle raising Aidan right now but I promise you will find your way. I use to pray for my son to die and now I can’t imagine life without him.

She didn’t know my secret because I told her; she knew it because she lived it.

That friend set me free that day and gave me just enough hope for the next.

I’m thirteen years into raising a child with a disability and I’m not that same traumatized mom I once was. Sure, it’s still draining and sometimes lonely and scary. I wonder if I’m making the right choices in fighting his seizures. I wonder if my inconsistency is holding him back from being more independent. I haven’t changed any laws, written policies, nor started a foundation.

But I’m sharing my messy truth today in hopes of setting someone else free. You are not alone. You are living a seemingly unbearable moment. You are allowed to be overwhelmed. Your pain and grief is real because it’s yours. You are not a mistake, and neither is your child.

And here’s my beautiful truth:

Aidan and Mom

Aidan

My willingness to step into fear and push boundaries and learn new things and support other parents and get involved and love this incredible child has changed me. The hard work of finding my way has been messy, rarely easy, but always worth it.

The truth is I can’t imagine my life without him because, really, isn’t he beautiful?

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YOU GUYS-  GLENNON  HERE. WHEN WE TOLD HEATHER WE WERE RUNNING HER STUNNING ESSAY TODAY, SHE WROTE THIS BACK:

Wednesday would be great. Aidan is having major spine surgery that day so it will be wonderful to experience a kind of togetherness on the internet.

OF COURSE!!! OF COURSE TODAY WAS THE DAY. FRIENDS, SHE’S IN THE HOSPITAL WITH AIDAN RIGHT NOW! LEAVE HEATHER SOMETHING TO READ THAT WILL FILL HER UP WITH COMFORT AND STRENGTH AND INTERNET TOGETHERNESS.

I love this woman. TRUTH TELLING WARRIOR!!!!

Love,
G

Heather Bowie is the mother of two wonderful boys and has been married almost 20 years to an amazing Irishman she met in a castle. Her oldest son Liam loves to run and her  younger son Aidan loves to drive his power chair. Aidan has an undiagnosed developmental disability and Epilepsy. Her blog Team Aidan was birthed out of the desire to tell her story, and in doing so, appreciate the journey. You can also find her on Facebook and Twitter.

This post is part of Momastery’s Our Messy, Beautiful Summer series.

Our Messy, Beautiful Summer



Carry On, Warrior
Author of the New York Times Bestselling Memoir CARRY ON, WARRIOR
Join the Momastery on-line community on Facebook, Twitter & Pinterest


Jul 212014
 
Our Messy, Beautiful Summer

A guest post by Carrie Cariello

JackDear Jack,

Lately people are talking all about autism’s rising statistics. They bring up numbers like one in eighty-eight and say things like now it’s one in fifty-five and they wonder where is it coming from why so many more?

Some days I don’t give a damn about the numbers. In fact, when people mention the numbers, I want to put my hands over my ears and shout stop talking about the numbers I know all about the numbers and the statistics and the gluten-free and the hyperbaric chambers and the genetics and the therapy dogs and the vaccinations and the allergies and the blah blah blah.

Because you see, Jack, my son, has autism.

My son has autism.

My son has autism.

You have autism.

When you were first diagnosed eight years ago, I didn’t know a single person who was on the spectrum. In fact, my only experience with autism was from this movie called Rainman with Tom Cruise in it.

I was terrified when you didn’t talk. You didn’t point or make eye contact or recognize us. So we began the roller coaster of evaluations and paperwork, and learned new terms like joint attention and pervasive developmental disorder and global delay.

But, still, we thought you would outgrow it. Your father and I were convinced this was just a hiccup; we’d get you some speech and you would start talking and this would all be behind us. But you’re nearly ten now, and you haven’t outgrown it.

There were so many things Daddy and I didn’t know back then.

We didn’t know how long and loudly a three-year old could throw a tantrum in a crowded grocery store.

We hadn’t understood the amount of self stimulation–or stimming–one small boy could do throughout the day; whirling and jumping and grunting and hopping.

We couldn’t figure out how to tame the slithering snake of anxiety that threatened to steal your six-year old smile.

We never anticipated the power of family, how each in their own way your three brothers and one pink sister would push you along, yet pull you closer; keeping you in our world even when you’re drawn to autism’s more compelling inner universe.

When people mention statistics, I want to tell them how every afternoon your 6-year old sister, Rose, waits for you to get on the bus after school. How she quietly asks your aide, “Did he have a good day today? If he gets upset, you can come get me. Because I know how to help him.”

Or how we watched the Wizard of Oz for the thirty zillionth time last month, and when the movie was over you said, “The Lion. He has autism.” Stunned, I asked you why, why you thought that.

You hesitated for a moment, searching for the words you needed, and then you answered in your halting, robotic tone, “Because. He is afraid. All the time.”

And that might have been the single most heartbreaking thing I have ever heard.

But you are so brave Jack. Every day you wake up and pull on your khaki pants and your favorite striped shirt and face a world that is not made for you – a world full of loud fire drills and people who talk too fast and long, busy math worksheets. A world of Jack not this way, do it that way, that’s not right.

I remember one Halloween when you were about three years old. I’d found three matching frog costumes at Old Navy for you and your brothers. You went crazy when I brought it out of the bag – you wouldn’t even look at it. As I dressed four-year old Joey and two-year old Charlie, I wondered to myself, “Why can’t he be normal?”

Now there are days when I think to myself, “What if he were normal? I would have missed out on so much.”

But you wish you were normal, I know. You are in a tender place because you’ve just begun to discover you have a diagnosis. And although we count our blessings to be able to consider you high functioning, there is a price to having one foot firmly planted in the typical world and the other planted on the spectrum. That price is the knowledge you are different, diagnosed, not normal; the knowledge that you have an aide but your brother Charlie does not.

You have told us, “I do not want it. I do not want this autism in me.”

I have a lot of hopes for you, Jack, and one of my biggest hopes is that there comes a day when you appreciate your autism as much as I do.

Now, I appreciate your autism but I do not always love it. Or understand it. Or have patience for it. Take this morning, for example. I just wanted to make my cup of coffee and have a few quiet sips before I brought you guys to the bus stop. I did NOT want to listen to a lecture about why the K-cups should stay organized in neat little rows according to flavor and color.

I wish I could show people all the license plates you and Daddy hung on the wall in the playroom. For over a year you were obsessed with them, and when people heard about that, they started to mail them to us. One by one they pried them off their old cars and trucks and motorcycles, and sent us Nevada and Tennessee and Georgia and Missouri, until we had collected all fifty states.

I want to tell everyone that yes, the statistics for autism are mysteriously on the rise, but I think the world is ready. And we have a wall full of license plates to prove it.

A lot of times people ask for my advice about autism. They want to know if I have any idea about how to increase language or make the tantrums stop or reduce anxiety. And I always wave my hand and chuckle say something like no, no, everyone is different I can barely figure out Jack.

But when I tell someone this—that I don’t really have any advice to give—a memory pulls at my subconscious.

It’s a memory I have from last summer, when our family took our first camping trip with together. You were so, so excited, Jack. Remember? We bought a 10-person tent so the entire family could sleep together. We bought an air mattress so Daddy could rest comfortably on the tricky bulging disc he’d had for months.

And after we set up the tent and all five of you kids took turns rolling around on the air mattress and digging your dirty feet into our pillows, we decided it was for only the grown-ups and shooed you off of it.

When nighttime came, the temperature dropped right along with the sun, and by late evening it was in the low fifties. We bundled into sweatshirts and pajama pants and all climbed into the tent to sleep. Somewhere around 2:00 am you called for me. “Mom. I want to sleep on the mattress.” I told you no, you needed to go back to sleep before you woke everyone else up. “Mom. On the mattress,” and I answered no, go back to sleep. I drifted back to sleep myself, wondering why you were being such a pest.

The next morning everyone was up early. I was sitting outside of the tent, and you climbed into the small chair with me. Looking out of the corner of your eyes, you whispered, “In the night. I was colded. In the night.”

As the morning sun streamed through the trees I looked down and realized that sometime in the night you had wriggled out of your pajama pants. You weren’t wearing the white t-shirt you had put on before bed.

All night long, you were cold. Freezing, probably. Once again I was foiled by the limits of your expressive language. I can’t tell you how many times I’ve thought about that night, how I told you to go back to sleep. And every time I think about it, I hate myself.

I make mistakes. Every day I make mistakes.

Last Tuesday you were in the school play, Thwacked. You had a pretty big part as one of the frogs.

For about forty-two minutes I watched the performance with a knot in my stomach. I watched anxiously as you stimmed and jumped and hogged the microphone. When other kids hesitated to say their lines you shouted them out impatiently. I was so nervous you would tip over the microphone or scream out something rude or stim yourself right off the stage.

But for the last ten minutes I made myself relax. I made myself sit back in my metal folding chair and uncross my arms and just take it all in.

My son is in the school play.

My son is in the school play.

And watching you sing it occurred to me: nearly eight years later, you were wearing a frog costume.

When people ask about your autism, maybe I should just tell them the truth. I should tell them all of the things the statistics don’t say.

Autism is confusing and scary and messy and beautiful and green and warty and electrifying. It can eat a marriage up alive and baffle the grandparents and make me laugh out loud. It is heartbreaking and yet it is ordinary.

Because of autism, I’ve learned that all I really need to do is listen even when there are no words, and try to feel the Lion’s fear in your heart. Most of all, I need to warm you when you are colded.

Jack, the truth is this: my son has autism. And I love you more every single day.

frog-costume

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Carrie Cariello is the author of What Color Is Monday, How Autism Changed One Family for the Better. She lives in Southern New Hampshire with her husband, Joe, and their five children.  She is a regular contributor to Autism Spectrum News and has been featured on the Huffington Post and Parents.com. She has a Masters in Public Administration from Rockefeller College and an MBA from Canisius College in New York. At best estimate, she and Joe have changed roughly 16,425 diapers. You can learn more about Carrie and her journey with marriage, autism, and motherhood at CarrieCariello.com and on Facebook and Twitter.

This post is part of Momastery’s Our Messy, Beautiful Summer series.

Our Messy, Beautiful Summer



Carry On, Warrior
Author of the New York Times Bestselling Memoir CARRY ON, WARRIOR
Join the Momastery on-line community on Facebook, Twitter & Pinterest