when you wish it was different

Cannon turned four years old this week. We celebrated with a family dinner, and his therapist decorated his room with a banner and a few balloons. It was all low-key and simple. He would not have wanted, nor would he have really understood, any more fanfare than that. But from start to finish, the whole day had me guarding tears and hiding my red eyes under a hat.

He did not really like when we sang ‘Happy Birthday' to him. He refused the gluten and dairy free cookies I made just for the occasion. He still has no idea what to do with a present put in front of him and we worked all day on getting him to answer one question: “Cannon, how old are you?” He still responds with, “I’m Cannon,” a response I know I should not scoff at, because “What’s your name?” took the better part of a year to get to. But still, “I’m four” is an elusive concept and as much as I want to, I cannot will it to come from his mouth. 

I woke up that day wanting his birthday to resemble, even in the smallest ways, the birthday of a neuro-typical four-year-old: enjoying a few new toys and smiling as we brought out a special birthday treat, feeling loved and celebrated in the way birthdays should make you feel. For Cannon it was just another day: therapy in the morning, school after lunch, play in the backyard until we make him come inside. For me, the whole day was reminder after reminder of what isn’t. 

And I couldn’t help but feel one thing: I just wish it was different.  

I don’t always feel that way about this journey. In fact, most days I feel confidence. While he is not even on most neurological development bell curves, this little guy has come so far since his diagnosis. On his second birthday I remember trying to get him to look over at me when I called his name so I could just take a picture of him, and the closest we could get was when Alex finally got a smirk after practically standing on his own head to get Cannon’s attention. Today, he can say “cheese” when I tell him to smile. On his third birthday he had a few words, but today he has lots of words, hundreds of them. Mostly nouns, a few high frequency requests, and with a little bit of guiding he can sing “The Wheels on the Bus” and knows most of the songs from Daniel Tiger, often surprising us with sweet sentences like “You can choose to be kind!” Watching him learn and grow is one of the greatest delights of my life; it is hard to put words to the feeling of seeing your son do something you really wondered if he would ever be able to do.

But it’s also hard to put words to the feeling of longing for something he might never do. 

Those are the two lanes that special needs parents travel this journey in: sheer joy and complete uncertainty. One has the scenic view of patience and hope and gratitude for the littlest things – and all of those sentiments are so real and genuine, you never want to leave that lane. But it’s so easy to drift, too easy; and often without warning you can find yourself traveling down the road littered with potholes of bitterness and unending questions – there are just so many questions– and your journey goes from pointing out the beauty around you to gripping the wheel in silent anger. It’s usually when my hands are clenched tight that I start to wonder again why we are on this road at all, and that’s when I wish it was different. 

And then, in the very next moment, I feel guilty for wishing it was different, as if I do not love my son fully and completely as the exact little boy he is. But then I want him to have a friend to celebrate his birthday with him so badly the tears can barely be held in. Pretty quickly I am back to feeling grateful for how healthy he truly is – in the special needs world you do not take for granted when your children can walk and jump and speak at all, and one visit to the pick-up line at Cannon’s preschool will remind you of that. But then I land back over in sadness, because we’ve been to a half dozen different four-year-olds’ birthday parties in the last few months, with lots of friends and presents and cake, and I am not even sure my little guy understands what a birthday party is. Back and forth, drifting between the emotions that are opposite one another, but both completely true. 

If you’re wondering if you can feel gratitude and sadness at the same time, ask a mother - she’ll tell you that you can. 

I think there are going to be many more days in our lives that I will wish things were different, but I take heart knowing that, for one brief moment, as he waited for the whole purpose of his life’s story to unfold, Jesus did too. 

“Father, if you’re willing, take this cup from me.”*

God, if there is any other way, please do it. If your plan can be different than this one, I’m asking you one last time to consider it. You are the Creator and Sustainer of all, you could change this! You could make another way!

“Yet not my will, but yours be done.”

And it was. And the one thing Jesus begged God to do differently became the best thing that ever happened to any of us.

At this juncture, there are many days when it is hard to imagine how the struggles of a little boy could lead to something good. But then again, we are still waiting for the rest of the story, too. 

I don’t know what Cannon will be like on his fifth birthday. I dream of one day celebrating the incredible progress that every special needs mama holds a sliver of a vision of, but I live mostly in the day to day, because there’s enough to both celebrate and cry over on any given one. But I do know this, on the days I want something different, I remember that one day, everything will be different. We live with the promise of Heaven, sealed by the one thing God did not take from his son.

Until then, I’ll keep counting the ways that being Cannon’s mom became one of the best things that ever happened to me.

*Luke 22:42

mise en place - some thoughts for the writer

I don’t pretend to know what I am doing in the kitchen. My culinary accomplishments max out at chocolate chip cookies that are not flat or overcooked, an achievement that is still one I pat myself on the back for. And while I have yet to put much in to practice, I do love a good cooking show and have watched enough Top Chef to learn a few things about the basics of culinary excellence, my favorite among those tenants being the concept of mise en place.

‘Mise en place’ is a French phrase that means “everything in its place.” It refers to the setup required before cooking: chopping all the vegetables, measuring out all the spices, preparing the cuts of meat or any other ingredient needed for the dish. It means all of the necessary utensils are ready, the pots and pans are out, and the oven is preheated. For the chef, mise en place is all about being prepared. Having ‘everything in its place’ helps ensures that when the cooking begins there are fewer errors, interruptions, forgotten ingredients or time wasted. And as I watch the seasoned chefs on television take their craft so seriously, from the setup to the plating and presentation, I can’t help but think about how mise en place works in my writing, too.

The image that first comes to my mind is my big white desk. I love this desk. It is beat up and scratched, the middle drawer is broken and the whole thing needs to be sanded and re-painted, but this desk has been good to me. It’s seen me cry more than my husband, it knows how much time I’ve wasted on social media when I should have been working, and it’s given me a place big enough for my Bible and books and all the bills, too. This desk would be the first thing that goes on my mise en place list. Next would be my coffee. Cold brew coffee, that is, and maybe French press if we are out, because I’m rather picky and I cannot drink just any ole kind of coffee if I’m going to be productive. Then I would probably light a candle, because I write mostly early in the morning, and those pre-dawn hours are complimented so beautifully by the company of a pretty candle. I’d certainly have my journal and my sharpie pens out, and likely the book I am currently reading in case I remember a sentence that had given me an idea while I read. And finally my computer, placed gently in the middle of it all. Of course the house would have to be quiet, because I tend to need total silence to write anything decent. And as mentioned, it would be about 5:30am, before anyone is awake and any events of the day have stolen my mental margin for creating. Yes, this is a good mise en place.

The problem is, I hardly ever write like that.

And I think one of the biggest problems plaguing writers and creators of all kinds, is that we think we need that in order to write.

I have spent so much time pinning pictures of writing spaces or researching the best planners, hoping that if I can just organize what writing looks like it will somehow inspire the words in a new way. And I don’t think I am alone in this, as I have seen a whole lot of great flat lay pictures  of hands around a coffee cup with an open computer on someone’s lap. They are usually in bed, often with a decorative throw blanket nearby for some color and if they are really spiritual, an open Bible, too.

(I meant no offense if you have recently taken that very picture. I’m all about the pretty flat lays and I would totally open my Bible for a picture, too. I am that girl.)

I can get so caught up in thinking I need everything in its place to write that I don’t have any time left to do the actual work of writing. I want to create, but I’m stalling. I love the mental image of a writer and I sure love the finished product, but that space in between –  when it is just me and my words, battling for territory in the most true and honest places – that’s not always an easy place to be.

It is so much easier to just take the pretty picture, and in the meantime, see what everyone else is doing with what was supposed to be my writing time.

I would love to simplify writing down to a three-step formula, or the ever-popular five-point list of ‘things you need to write, and write well’. But like so much of life, writing has proven to me again and again how low-maintenance its friendship is, and that it simply does not need all that much in place. Sure, a big desk and a nice candle are luxuries, but I’ve written some of the most profound and honest words of my life in the most unlikely of places: on the small screen of my phone in the waiting room at the hospital; in the basement of my parents’ house while we lived with them in the middle of our move; short sentences that inspired entire essays while I waited for coffee or in the carpool line at preschool; at the kitchen table with Daniel Tiger in the background – because the idea came and I knew it was fleeting, and I needed thirty more minutes of help from the screen to occupy my kids before that idea left for good.

When I think about all of the writing I have done for the last eight years, I would have completed virtually none of it if I had waited until everything was in its perfect place. Because inspiration rarely waits for you to get ready; if you’re going to write, you need to be ready. Thinking that I need more than I already have in order to write is writing from a place of scarcity. But knowing, believing, and being confident that I already have far more than I need is looking at what is right in front of me and seeing the generosity of it all, and then writing from a place of abundance. And it’s a reminder I preach to myself every single day.

For me, the creative process has been so generous and so forgiving, and also so unpredictable. Our hearts don’t follow a schedule as much as they capitalize on a mind that has been searching for that inspiration all along. When I am constantly looking, always learning, and disciplined enough to be writing in as many margins as I can find, that is usually when the best words come to life.

Mise en place is an ethic, a mindset, that I love. But when it comes to creating, there are truly only a few things I need in place – and they aren’t really things at all: a love of writing and a desire to keep at it no matter what, and a belief that God, our creator, delights in creation. I do my best to live, learn, pray, write, and repeat. And I keep at it, wanting all the stories I tell to point back to One who gave them to me.

our story of rescue

Parenting is going to leave all of us speechless at some point: another school shooting that we have to explain, another poor example of once-trusted leadership, another death or sickness or fight that, one at a time, teach and show our children that the world is truly a fallen place.

In our home, some of the harder questions started coming about six months ago, when our 18-month old son surpassed our three-year-old son by a noticeable margin in speech and development. As that margin grew and grew, Harper noticed, too. “Mommy,” she asked matter-of-factly, “Jordi talks and Cannon doesn’t. Why?”

“Well Harper,” I started to explain, “Cannon learns differently than Jordi. Everyone in the whole world learns differently. Some people learn really fast and some people take a bit longer.” And in my typical ‘let’s be positive’ demeanor, I ended with the upside. “Cannon is learning some words though! He’s getting there.”

“Hmm,” she responded, as if that explanation would do for now. But I think we both felt the incompleteness.

It’s not that what I said was untrue – people do all learn at different paces and at different abilities, and it’s so important that Harper understands that at a young age. But why is everything so much harder for Cannon? The why question has had its way with me in the last two years. I’ve cried over it, gotten angry with it, and felt intensely defensive about it. But so much of that – the many things the world might tell me is the reason why Cannon struggles – is not really what I’m talking about.

I’m talking the big why - why does he have to struggle in ways that others his age do not? Why is there pain, disability, sickness, and death in the world at all? Harper may not have been asking at that philosophical level, but she will be soon, whether it be about her brother, her own sin, or something else that she sees, hears, or experiences.

After much searching and reading and praying and talking to people far wiser than me, hoping for an eloquent explanation, for words that would ease the tension I constantly felt, the answer is actually as simple as it has always been: it’s sin. It’s my sin and your sin and our sin, and the fact that at the Fall of Man in Genesis 3, evil came in to the world and everything has been hard since then (Romans 5:12). That is the why.

It turns out that it is as straightforward - and yet lived out as incredibly complicated - as that.

*****

One of the things I’ve learned in five years of parenthood is that children, with their near constant inquisitiveness and very pragmatic questions, actually become our best teachers. If we cannot explain something at the level a five-year-old can understand it, there’s a good chance we don’t have a good grasp on the topic at all. And this is most certainly what God has showed me in the last two years.

I knew about life in a fallen world. We've all seen and experienced the pain that comes from original sin. But I was having an exceptionally hard time finding the words to explain it. And that’s when we went back to the very basics of our faith, the big story of our rescue that God has been writing through all of history - the Biblical Narrative. These four commonly used points became so helpful – it gave me a language for what I have always known but could not find the words for. It reminded me that our small stories truly are written in the scope of God’s big story, and all of our lives can be understood within the arc of these truths.

The Biblical Narrative is the big story of the Bible – a (very short) summary of Genesis to Revelation – and it is a tool that can help you use gospel language with your kids every day. In our home, the conversations often begin with a question or hard topic that we have to explain to our children: Why did Granpda die? Why does my brother have a disability? Why did that friend leave me out? Why do we yell at one another? We frame all of these conversations by starting with creation: God’s perfect plan for the world and how in the beginning everything was good and at peace. Then we talk about the fall, and how sin entering the world changed everything. Sin is why life is hard, sin is why we can be terrible to one another, and sin is why we need a Savior. Then we bring in the good news that Jesus redeemed us, and that is why we can have hope in this world in spite of the sin in our hearts and the hard things that might happen to us. We end with restoration, because God’s Word tells us that the Holy Spirit is still very much at work in the hearts of men and women, boys and girls, all over the world, making us more like him all the time – using our gifts, our success, our weakness and our failures for his glory and pointing us to the day we are ultimately and forever restored in Him.

In his book Parenting, Paul David tripp said this: “Tell the story of the person and work of Jesus to your children again and again and again. Tell them how God could have condemned us all to our foolishness and its results, but instead how he sent his Son so that instead of being condemned, we’d be forgiven and rescued from ourselves. You simply cannot tell this story to your children enough. Talk about how God exercised his power to control history so that at just the right time Jesus would come and extend his sacrificial love to fools who didn’t even recognize his existence. Talk to them about how Wisdom came to rescue fools so that fools would become wise. Start telling this story when they are toddlers and don’t stop telling this story until your young adult children have left your home.” The Biblical Narrative cards are designed to help you do just that. I hope we can tuck them in our Bibles or tape them on our refrigerators, and find every opportunity possible to tell our kids, and tell ourselves in the process, our story of rescue, again and again and again.

loving what must be done

The envelope sat on my desk for three weeks before I opened it. I had seen the return address right when I pulled it out of the mailbox, The Department of Health and Social Services logo with the name of our assigned social worker from the Developmental Disabilities Administration.

Why I still flinch just a little bit when I see that logo in the mail, I do not know.

She had called me the week before to remind me of our son’s upcoming fourth birthday, and that his status with Early Intervention Services through DDA would officially be terminated unless I reapplied for eligibility.

“Was he ever officially diagnosed or were his delays compensated through services?” she asked.

“No ma’am, he was diagnosed with Autism-II in October of 2016.”

“Ok, he will remain eligible for DDA services then, as long as his diagnosis came from an appropriate specialist.”

“Yes, it did.” I responded. (He was also not very kind, that specialist, but I leave that part out).

“I will need a copy of all of his paperwork, and I am sending you the application packet for ages 4-21 today. I’ll need it back no later than 90 days before your son’s fourth birthday.”

“Thank you.” I said. I think I meant it as a question though. 

“You’re welcome, Mrs. Blackburn. Happy Holidays!”

Three weeks later, with a post-it note on the refrigerator daily reminding me to “Renew DDA for Cannon!” I was still ignoring it. The truth is, I don’t like going back. The diagnosis paperwork is 11 pages of hard for me, line after line of quantification and qualification of a sweet little boy that I think falls far short of capturing him, but to any objective observer is frustratingly accurate.

But I don’t love looking forward too much, either, and getting mail from the Developmental Disabilities Administration with flyers reminding me of our legal rights, tips for starting school, and programs around our city for those with developmental disabilities is exactly that – a monthly notice that will not let us forget Cannon’s future will be unchartered territory for all of us.

None of this is what I pictured four years ago, when we opened a gift on Christmas day and saw a little blue blanket inside. “It’s a boy!” we all yelled, followed by tears of joy and an immediate image of a big sister squeezing her little brother on the next Christmas card. And when life gives us a story that we’re not prepared to live out, our immediate reaction is to resist it. I think maybe that is why I cried for most of that first year, because when reality keeps running head first into a hard heart, it hurts. Reality needs a soft place to land and I would not, could not, give it one.

So God had to completely change what I couldn’t.

There is a popular tale among special needs parents called ‘Welcome to Holland’ – a metaphoric story about planning a trip to Italy, learning the Italian language and studying the maps of the cities you’ll visit, even getting on the flight to meet all of your friends there and then hearing upon arrival, “Welcome to Holland.”

Holland? But you’ve been planning to go to Italy. You got familiar with Italy. All of your friends are sharing beautiful pictures from Italy and you really want to be in Italy.

You want to hear your little boy sing in the preschool Christmas program with other three year olds, not fill out DDA paperwork.

You want to sign him up for Tiny Tots soccer, not a one-to-one aide for group settings.

There is a list 100 items long that you would rather be doing than the work in front of you, and I think it is ok to acknowledge that. It’s not, however, ok to stay there. 

God’s story of his chosen people is one story after another of someone not getting what they want, but getting something only God could do. Sarah wanted children in her youth, God gave her Isaac when she was 100 years old. Jeremiah wanted anything but the work of a prophet, God gave him words that would be cherished and studied by believers for the rest of earthly history. Paul wanted to go with Silas to Asia to share the gospel, God re-directed him to Greece and brought the gospel to Europe for the first time.

If I am learning anything from God’s narrative and history of redeeming a broken people in a broken world, it is that what we want is not always a great indicator of God’s perfect plan, for our lives and for His glory. And at some point we have to decide what gets our time, our energy, and our prayers: what we want, or what God is actually doing. How we answer that with our lives will change everything – perhaps most importantly it will change how you see what must be done. To borrow from Goethe, you’ll learn to love it. It may be impossible to see right now, but one day at a time, regardless of what you are carrying and even when it is so hard the tears far outweigh hope, you’ll still be so thankful God chose you for something you could never do on your own. 

consistent

I’ll admit it, I am a sucker for resolutions. It could be a lifetime of sports and goal-setting drilled in to me, it could be the “help me help you” tendencies of my INFJ-ness, or it could very well be that I came out of the womb leaning a bit too far to the people-pleasing side and being an achiever helped me accomplish just that (and yes, I’m working hard on the shadow-side of all that neediness). But taken all together, I love having a list of things to set my eyes on, and I super love checking things off of those lists.

I am in full agreement with Socrates when he said that “the unexamined life is not worth living.” The discipline of introspection, and then the conviction and repentance that follows for me, has been such a big piece of my life in the last decade – as a writer in the last seven years, but much more so as a wife, a mom, and a follower of Christ. My days begin with the space to think. They just have to for me – in the quiet, before anyone else is up, working around thoughts in my head about scripture, about Jesus, about words and meanings, about my children and my husband and whether or not I am stewarding these things in a manner that is honoring to God and reflective of who this is all for anyway. Examining who I actually am and how I actually live, holding that up to who I want to be, and then submitting that to the guidance and direction of God’s Word is a pattern of sanctification that I want on repeat in the cadence of my days.

Because usually, when that’s happening, I see how badly I am missing the mark.

The gospel becomes even more beautiful when you really see that.

*****

I have been going through this goal-planner again this year, and one of the things you are asked to do is choose a word for the year. I wrote down about a dozen to start with, things like diligence, joy, learn, family, and trustworthy. And then the word consistent came to mind, and I could not let it go.

Consistent means to be marked by harmony, regularity or steady continuity. It is a characteristic given to someone or something that is free from variation or contradiction, showing steady conformity to character, profession, belief, or custom. And consistent is everything I want to be.

When I get real introspective, and real honest, and I take apart the big pieces of my life, I can see just how in-consistent I really am. My mood - and my actions to follow - can shift and change a few dozen times a day based on things like social media (do people like me?), how Cannon did at therapy (do people see how hard we are working?), whether or not a friend got back to me (am I important to her?), and other big, life-altering (ha!) things like that. I love my husband inconsistently, usually showing him respect and displaying affection well for him when I am having a particularly good day myself. I parent my children inconsistently, again, usually doing the hard work of teaching and disciplining well and getting on the floor to play with them when I am having a particularly good day myself. And I celebrate others inconsistently –  would it shock you to know that I usually do that much better when I am having a particularly good day myself?

I’m seeing the pattern, and here is what it is teaching me: when my consistency is built around me and my day, it will be anything but marked by steady continuity.

But if the consistency of my life is built around the only One that never changes, I think I’ll have a fighting chance. Jesus has to be my steady. And the gospel has to be the thermostat of my marriage, my parenting, and the way I love others.

Consistent means to me that I am not a walking contradiction, saying one thing but living out another. It means that I am the same person to everyone; whether she is like me or not, whether he is easy to love or not, whether she can give me anything in return or not. The partiality of the world we live in is feeling further and further from a kingdom-mindset to me all the time – perhaps that is because it is? It means that what someone sees on social media is what they will see in real life. It means that my husband will not have to guess how loved he is going to be on a particular day. It means that my children will remember their mom as someone who was the same to them in the public eyes of the church lobby and the private hallways of our home at night. And it means the work I do in this world will reflect the only investments that will always, always bring a good return: God’s Word, and God’s people.

So this year, my prayer and goal is that the mark of my life is consistency. That my joy is contingent on the unchanging good news of the gospel and not the trending good or bad news of any particular day. That others know what they can expect from me. That my heart never loses the awe that I am saved by grace and not by merit. And that I am unwavering in my pursuit of seeing and savoring the goodness and glory of God in my every day, walking around, mothering and errand-running, cleaning and writing, bill-paying and diaper-changing life. 

I don't know, maybe, no: how I think about autism

(and maybe a helpful way for you to, too).

“Everywhere we go, it’s work.” Alex confessed his thoughts to me as we wrangled wet swimsuits off our kids and searched the oversized bag for the dry undies.

I stared back at him, unsure of what he really meant and how to take it. My silence was enough. Sometimes parenting leaves all kinds of room for misunderstandings and taking offense.

“Babe, don’t be mad at that statement. I’m just processing. I’m telling you what I see and how I feel, and I have to be able to tell you that.”

“I know,” I said in return. “But I thought we had a great time swimming. I thought the kids did awesome, and I thought Cannon had a blast.”

“He did! We did! It was a great time. I’m just admitting to you what I feel, that it never gets easier to do things that are ‘normal’. That we have to always be prepared to work.”

Of course, Alex was right. He had just spent the better part of an hour micro-managing almost every aspect of our trip to the pool. “Cannon, walk buddy!” he would yell from the water, no less than two dozen times. And each time, Cannon would only pick up speed and continue sprinting from the concrete to the shallow entrance, with a smile across his face a mile wide.

Does he not hear us? I don’t know.

Do his receptive language deficiencies inhibit the understanding of the words “do not” and “run”? Maybe.

Is he just bad? No.

Nonetheless, it was work. When Cannon would not walk on the slippery pool edge, Alex would get out with him, grab the buckle strap of his water wings, and force him to slow down all the while repeating the command: “walk, walk, walk.” Over and over and over. Cannon never seemed distressed, he never threw a fit about being held back. That sweet boy was having the time of his life at the pool, and we loved seeing the joy on his face. But when all around you other parents are warning their young children to slow down and walk, and those kids forcefully slow their steps even when everything in them wants to run, you see it – you see the autism. And you feel it. You feel the autism. And you wonder, will we ever get there? To that place when you tell your child to do something, and they just… do it?

*****

I saw an article a few weeks ago that a friend had shared, something about a new thing called ‘virtual autism’ and how too much screen time could be the cause of the rise in autism. Of course they still had to actually study it, but whoever the authors were felt confident enough in their guesses that it was worth sufficiently scaring parents everywhere about the iPad. I also recently heard that there is a new wave of thinking about autism – that it is perhaps the newest form of “evolution” in human history: since a very small percentage of autistic men and women also can be savants in certain categories, and since we need those highly articulate thinkers in an increasingly complex and technological world, natural selection is just one step ahead of medicine and is ‘creating’ them for us. And there is one of the latest P.E.T.A. campaigns, landing blame for autism squarely on the dairy industry and all the mothers who did exactly what they were told when transitioning their twelve-month old from the breast to whole milk.

And of course there are the less stretching potential causes: vaccines, a toxic environment, maternal age, too many medical interventions, genetics.

I don’t know.

Or an unnamed second trimester abnormality that causes essential cells in brain development to “lose their way” to their proper place.

Maybe.

I am not sure who or what to blame for autism. But I also don’t stay in the blame place, because it is crippling. The far more important question for us to ask is this: did God forget about Cannon and the millions of children and adults, some stumbling and some making their way alright in this world, with a brain that sees and takes it all in so very differently?

No.

*****

Our first red flag with Cannon was his speech. He was always quiet, and he has remained quiet. Our little guy never really developed words: once or twice he said “buh-buh” (bye-bye) and a rare “mom” or “dad” or “doo-doo” (thank you), but Cannon’s story is not one of normal verbal development and then regression. He did go through a few months where he stopped saying even the four or five sounds he did have, but the regression was minor compared to the level he had ever initially attained. He started speech therapy at nineteen months old (he hated it), we moved to the Early Intervention Services and added occupational therapy to his repertoire (he tolerated it) and by two years old we knew what we were looking at. He was rarely responding to his name. He wasn’t too interested in other people. He could not follow simple commands.

There are so many moments in those months that stick out in my mind. Like just before his second birthday when I had him on my hip at the refrigerator. I knew what he wanted, he had pulled me over to the door which was his clear indication for milk. So I picked him up and said, “Cannon, say please.” I knew he wouldn’t, or couldn’t, but I persisted. “Cannon, say p-p-p-please.” Silence. “CANNON, say p-p-p-lease!” He reached harder for the door, I forcefully grabbed his tiny hand and rubbed it on his chest to mimic the sign language. “SAY PLEASE!” He whined, I commanded louder. After a dozen requests, I started to cry. Why won’t he just say “PLEASE?” I put him down without the milk, thinking my hardline parenting would help force him to talk, but it only caused him to fall apart.

Is he even able to say ‘please’? I don’t know.

Will he ever talk? Maybe.

Can I just quit, because this is too hard? No.

It was all so painful, to say that A-word out loud and know it belongs to your child. It’s not anymore - but oh, it was back then. I was living on the brink of tears every single day.

*****

Autism falls under the broad category of Pervasive Development Disorders. This is how I very un-scientifically define it:

Pervasive – all over the place

Development – how things should grow

Disorder – something went wrong

Pretty simple: something went wrong with how Cannon should have been growing in several ways. If we think of the brain like a map, directing information, feelings, language and emotions to their correct places, I think of the autistic brain like a map with holes in it. The information may start where it is supposed to, but pretty quickly runs into a big hole and has no idea where to go next, so it either falls into the hole and disappears, or it takes a wrong turn and ends up in the wrong place. This is not science*, but it’s how my mind makes sense of it.

But here’s the thing: every single brain with autism has holes in different places. And every single brain with autism has holes of different sizes. And all this means that sometimes the holes are not at all in the way of where you're going, and other times they mean you cannot get there at all.

The map might have a hole where the information is actually supposed to start, so it never gets going. Like language: some kids have zero indication of autism in the language category – there are no holes there. Some kids have no words and not even any sounds, so there is very likely a large hole right where language was supposed to begin. They just can’t get going, no matter how hard they work. Or emotional attachment: some children cannot be touched without anxiety and others snuggle in and want their back rubbed with no issues at all.

Maybe the holes are in emotional regulation. Maybe they are in sensory processing. And maybe the holes are two steps in to the journey or maybe they are further down the road, allowing the child to start without any issues, but then running into a hard stop at an unpredictable moment. He used to talk quite a bit, why did he stop? We arrived at our friend’s house just fine, why did he fall apart once we walked through the door? And how big these holes are may indicate how long it takes to recover from getting lost or falling in. For some, it’s a fairly quick rebound. For others, the whole afternoon might be lost to a meltdown, or months of progress derailed.

So what do we do? Well, we do every single thing we can to fill the holes in the map, even though we don’t know how big or exactly where they all are. We watch. We listen. We make a hundred mistakes and try again. We commit to therapies and healthy diets and giving the brain and the body the best fuel we possibly can. And when our son simply cannot hear/understand/process what we mean when we yell “walk, please!” … we get out of the pool two dozen times and show him.

And do you want to know something? That night at the pool, just before we left, Cannon started to get out of the water one last time so he could run his short lap around again. But Alex kept at his persistent teaching, and yelled one more time, “Cannon, walk buddy.”

And finally, Cannon turned around to Alex, stopped in his tracks and said back to his daddy as if he was so proud of himself for finally getting it, “Good job!”

Yes, good job indeed, Cannon.

The holes can be made smaller, friends. And I also believe many – in some cases a lot of them – can be filled completely. And yes, it is a lot of work. Like Alex was honest enough to say out loud, everywhere we go, it’s work. Still, long gone are the days I stood at the refrigerator with a silent little boy on my hip. Cannon’s language is still very far behind and we still have to work hard to pull it out of him, but he can repeat and say virtually everything we ask him to. And more and more, he is putting meaning to those words his mouth can finally say. The road ahead is long, but when you look behind to see all the patches covering the holes and all the places he used to get lost that he’s not anymore, you look ahead and say “ok, let’s find the next one.”

*****

I don’t know. Maybe. No. Three phrases that have defined our journey with special needs more than any other. But while they may be the most used, they don’t carry the most weight. With every step of the journey, we remind ourselves of this:

God is sovereign. This, I know.

Is God working in all things – even disability – for one incredible purpose: to make His name and glory known? Absolutely.

Is He good? Yes.

*****

*I want to be sure I note that research and brain MRI’s do not show any visible “holes” in the brain of a person with autism. For the sake of both storytelling and understanding, that is an image made up entirely on my own. Like most metaphors, it both over-simplifies and falls short of capturing autism perfectly, but it has been a very helpful framework for us as parents to understand the work before us in loving and teaching our incredibly sweet boy.

self care

Harper had quietly snuck down the stairs earlier than usual, and surprised me with her little voice at the office door. “Hi mommy.”

Startled, I turned around from my chair. “Hi love. Good morning! You’re up early, did you sleep well?”

“I think so,” she said as she rubbed her eyes. With her blanket and stuffy still in her hands, she came and sat on my lap, looking at all that was on the desk in front of us: my Bible, an open computer screen, an assortment of colored pens and stray pieces of paper with all manner of verses and quotes and ideas I’m still trying to organize. Taking it all in, she asked the simplest question. “Mommy, what are you doing?”

*****

“You have to take care of yourself first,” the speech therapist kindly, but firmly, told me. “There are support groups, and they can help you find qualified babysitters if you don’t have someone who can watch your kids while you get out.” She handed me the pamphlet for one of the local gatherings of special needs parents. "You'll be a better mom to all of your kids when you practice some good self care."

“Thank you,” I smiled back. As I glanced down at the information, all still too new and too raw for me to read without tears in my eyes, the theme was clear: We will not have it in us to raise a child with special needs alone. And the resolution to that was being offered right back to me: you have to take care of yourself first.

And you know what, more than a year later, I agree.

*****

When I look back at the first five years of my own motherhood, it’s marked with both incredible memories, and a sufficient amount of fear. I remember holding my 8-day old baby girl when the Sandy Hook Elementary School shooting happened, and with so much of the nation, sat on the rocking chair sobbing uncontrollably at even the thought that something like that could happen to a classroom of kindergartners. Cannon was just over a year old when the Syrian refugee crisis finally grabbed our attention, with the image of a little boy’s body washed up on the shores of a Turkish beach. I was weeks away from giving birth to Jordi when the terrorists chose Paris as their target, and there have been countless others since then. I spent many nights awake and anxious and wondering what kind of a world I was raising children in. And all of this was before autism, which brought an entirely new set of anxieties and inconveniences.  

Being a mom has surprised me in so many ways - the highs of irreplaceable joy and lows of sleep-deprived fighting with whoever catches me off guard first. But it is not a stretch for me to say that the most surprising thing it it has shown me is how ugly my heart can be. When fear and frustration and exhaustion and the completely unexplainable descend on my home, the person that has showed up is not the one I am most proud to be. I’m irritable, impatient, arguing with my husband, and oh yes I did yell at my daughter for spilling three cups of water that she was bringing to me on a tray. To serve me. It still hurts to remember that convicting moment.  

So when it came to self-care, it was becoming painfully obvious that a little time away and a pedicure, while wonderful, were going to fall short.

The sirens were going off around me: the fear, the what-ifs, the “how do I talk to my children about this” and the diagnoses –  and it was only then that I started looking for safety.

What motherhood has taught me more than anything else can be summed up in one simple lesson, the same thing that pamphlet the therapist gave me said: I cannot do this alone. The problem with the solutions, with the ‘take care of yourself first’ mentality, is that it encourages escapes, not healing. As wonderful as escapes are (I don’t even need to tell you how much I love a good spa day), they make the surface look pretty, they don’t sustain you from day to day. There isn’t a wrinkle cream, injection, nail polish, aromatherapy, essential oil, or massage strong enough to do what my heart constantly needs: to be examined, and then healed.

God’s Word, however, has an exceptional way of doing both.

Time and life and motherhood and the reality that life is an unpredictable dance of truly beautiful and remarkably hard has taught me that self-care is less about what I do and more about who and what I am consistently with. When God’s Word is churning in my heart before the tasks of the day and three little people ask me to consistently adjust what I had in mind, everything changes. I’m humbled by this work, not inconvenienced by it. I’m heartbroken by the reality of sin and evil in a broken world, not paralyzed by it. I’m patient with autism, not bitter about it. I’m rejoicing about the work God saw fit to give us, not comparing it to the work he gave others.  And I remember that no matter what changes around us, we have “the promise of the unchangeable character of His purpose,” which is to make His name and glory known in all things and to all people. The way I live in this world, with every victory and every challenge, is either going to do that, or it's not. 

And more than anything, I want it to. 

So yes, I had better take care of myself first.

*****

When Harper asked me that simple question, “Mommy, what are you doing?” I thought about the many ways I could answer her: I’m studying the Bible, I’m writing, I’m praying, I'm asking God to show me who He is through this book He left us, or simply that I am just spending time with Jesus. All of those are good answers, and all things I think she would understand. But in that moment, I told her exactly what I was thinking.

“Mommy is just taking care of herself this morning, sweetie.”   

I'm so glad I wrote it down

a third birthday reflection for just enough brave

On the bottom of our six-level bookshelf, a dozen journals are stacked and cozied up against the left hand corner. That’s my childhood, I think whenever I see them there. And not just my childhood, but my angsty teen years and thought-I-knew-it-all college years, and even the combination of lonely + intense + amazing graduate school years.  Every now and then, I pull out these journals that I have kept for a few decades now, and I read through some of the entries. Allow me to entertain you for a moment with a few highlights:

November 5, 2001

Dear Journal - Well, I don’t know where to start; my life’s been crazy lately with school, soccer and a boyfriend. It’s almost too much stress for me to handle. I seriously can’t get anything done.

December 5, 2001

Dear Journal - Guess what, I made All-American! Pretty cool huh? Oh, and Chris left yesterday for the Marines! He left so quickly! I’m really gonna miss him! My mom is really sad about it! 

December 26, 2001

Dear Journal - It’s the day after X-mas and winter break is going on right now! It’s so awesome. I’m still doing ok on my diet, but I’ve cheated a few times! Brian and I are still 2together. He got me some really pretty earrings and a Bop It for X-mas. Our 2-month anniversary was last Thursday! Wow, huh?

December 18, 2002

Dear Journal - Well here it’s been a whole year and I haven’t written! I’m so sorry! But I’m not gonna forget for a while now, I promise! Here’s what’s happened: Broke up with Brian (he was so dumb and I had absolutely no regrets), went to Homecoming with Kevin Madsen and it was fun. I didn’t go to my Junior Prom because I was coming home from Florida with the National Team that day, but it was totally ok ‘cuz I didn’t really want to go. Hard to explain but I really didn’t. I played really bad in Florida, and I know it was because I screwed myself over by not eating enough. But I won’t let that happen again! Rage finally beat the Blues in the semis at Regionals. It was so awesome! Then we won the whole thing. But the week before Nationals I tore my ACL at Regional Camp. But I’ll be back on that National Team, I will! And one of the coolest things happened: I’m going to Arizona State! I absolutely love it there and couldn’t be happier about my decision. Gosh a lot has happened that I can’t believe I never told you about. But I promise more details later. This was just a quick recap! I’ll write tomorrow, but it is 12:17 and I have to wake up in 6 hours! Bye!

A few reflections:

*Almost too much stress for me to handle. Oh my. Tell me about it, fifteen-year-old Katie.

*Brian, if you ever read this, you were not dumb. You were a very sweet first boyfriend to me.

*I remember the day my older brother left for the Marines, just three months after 9/11 and with everyone thinking war would be imminent at some point soon. My mom wasn’t just sad about it, she was devastated. I can still picture that day so well, and I remember that I had never seen her like that, with swollen eyes from crying and so few words to even talk about it. I could not have understood that feeling as a teenager, but with three of my own now, I think get it.

*The diet stuff. Ugh. What I see as I read it now is the start of almost a decade of stronghold for me; almost ten years of starving, bingeing, purging, writing down every single calorie that I put in my mouth and now a lifetime of stomach issues that are very likely a result of the way I treated my poor body for too long. All because a fifteen-year-old really wanted a six pack.

*The people in my life as a teenager helped define it. I think I’ll be holding on to that thought quite a bit.

Of course my journal entries got deeper as my faith and maturity did. I wrote through the next decade in much the same way: highlight by highlight - more soccer and more injuries, more food issues, more boy issues. In fact, that last topic took over around 2008, because I had been in about six weddings at that point and had never had a date to bring to one, and a clear sense of longing seemed to accost my words for the next few years. Then children came in to the picture, and it wasn’t so much a place of longing I was writing from, but a place of desperation, with Lord, please help me! sentiments of all kinds.

And that emotion is usually where I still write from.

Three years ago, just enough brave was born. After four years of blogging with my best friend, I had planned on putting the words—at least the ones for the internet—to rest for a while. But when a friend asked me over breakfast one morning why I wasn’t writing, I realized I didn’t have a good answer, and I definitely did not have a God answer. (Side note: these kind of friends are good ones. Keep them around). So I started again from the most honest place I could think of, and that was the desire to be brave. Just enough brave.

Life and motherhood have taken a hard turn off the map I had spent a few decades of life plotting and following, walking me and Alex straight into unknown and fairly scary territory. But I kept writing, and this tiny space on the internet has safely held some of the most vulnerable words that have ever come out of my heart. I have always, always loved this about writing: it helps me see what is true about me in ways I could not have seen before I wrote it all down. And still, the best part comes a few years (sometimes decades) later, when you can look back and laugh at the things you thought were stressful, cry at the hard lessons you thought you understood but had to really learn the hard way, and mostly see how far God has brought you - how his provision has never wavered, and how he has been good enough to not give us what we want, but what we need. My words have truly become an anthology of getting what I needed.

For that reason alone, I’m so glad I wrote it all down.

Here’s the truth: writing for my own heart and writing for an audience are two very different things, and I have found that I am not very good at doing both. But I have also found that when I do the former, the later seems to happen organically. Unforced rhythms are the most sustainable rhythms, and I think that is true in every area of life, but certainly in writing.

Writing has taught me so much; more than I know how to sum up and wrap a bow around, because the lessons never stop. It has taught me to be honest and to be brave. It has shown me my pride and my tendency to compare myself to others. It has been the friend that has never kept score but welcomed me with open arms when I returned after a long break. And it has been what God has used to lift my eyes back up to him. I have loved words my whole life, but now I need them.

An anthology of getting what I needed. Thank you, Jesus.

on hope

The sun was falling slowly to the west, lighting up the tops of the wheat and the scattered wildflowers just gently enough to paint a layer of gold around them. I will never get over the way the world looks right before the sun sets; like it is at peace, content with itself for having given its best, ready for the rest it well deserves.

We had driven to the north side of town to meet our family at the orchard, dressed in corresponding colors for the yearly pictures. “I forgot the lollipops,” I said out loud.

“We will be fine,” Alex responded. “It will be quick.” Always hopeful, that one.

Cannon fell asleep on the drive, so when we pulled up we decided to just let him rest until we were ready to go take our pictures. It is easy now to see where we started to go sideways on this endeavor, and the decision to not wake him right then was the beginning.

After a few minutes the photographer arrived, and we made our way toward the blooming sunflowers for the big group shot first. Alex unbuckled Cannon and gently picked him up, whispering in his ear that it was time for pictures. He was out of sorts right away, I could tell. He woke up in an unfamiliar place with a lot of expectations, and then we started asking him to look at a camera and say cheese, which makes the list of the ‘hardest things’ for his mind to execute.

Even if I had remembered the lollipops, I’m sure this would have gone the way it did.

We tried. I tickled him and kissed his cheeks and let him hang the full weight of his body on mine, but this boy wanted no part of family pictures in that moment. So, after a few minutes, I told the group to keep on without us, and Cannon and I headed back toward the car.

That’s when I really noticed the sunset, and the visceral peace hovering all around. Everything I saw looked, well, perfect. The blemishes that cannot hide under the midday sun disappear under the filter of dusk, reminding me that Instagram has nothing on nature. The cooler air and the softer surroundings, all of it announcing the end of its work for the day. Then I noticed my heart, and even against the weight of a struggling boy, who was exceptionally difficult to carry while walking through the dirt in wedges, it was totally at peace.

No tears. No frustration. No embarrassment. No compelling draw to explain anything to the rest of the family or the photographer. In that moment I was just a mom doing what her son needed.

I’ve come a long way from the mom who needed her son to do what I wanted.

*****

It has been just over a year since we knew Cannon was autistic. I remember this time a year ago, at the end of a long summer, texting a friend who is a bit further ahead of us on a similar journey. She responded with such sweet empathy, and told me the first year was the hardest, but that her little one was improving all the time, that he has so many incredible strengths, and that it’s not easy but it’s going to be ok.

She was exactly right.

The first year was really, really hard. I did not know what to do with my son, I did not know what to do with all the opinions on why he is autistic, and I did not have the first idea how to internalize the comments and stories of others. I had no bandwidth for any one of the books a well-intentioned friend had heard was a good read, but I’d send a “thank you so much, I’ll look in to it” response anyway. I could not have named it at the time, but I spent much of the first year unraveling. I had put together a whole narrative on both God and myself as a mom, and thread by thread it was all being pulled apart.

What I can tell you now is this: I was looking at the world and trying to make sense of God. And I was looking at my children and trying to make sense of myself as a mom. When you get those things backwards, nothing really seems to fit. But when God graciously takes apart the story you believe you are narrating and puts it back together as the only fitting Author, it makes a lot more sense.

When I started with God, with his character, his story, his purposes, and all of the realities of life in a broken world, then everything else had so much meaning. But this did not happen for me overnight. In fact, I didn’t really notice how far we have come until the sunset over the orchard reminded me that just as the world makes its way around the sun every day and not the other way around, so does God need his rightful place at the center of each of our days, and not the other way around. As John Piper so beautifully says, "The healing of the soul begins by restoring the glory of God to its flaming, all-attracting place at the center."

So much of life comes down to hope, doesn’t it? And when it comes to autism—perhaps even parenting in general—the first thing you lose when your child is not doing something they are supposed to be doing is hope. I can look back at last summer and realize that what I had always believed about life, the story I had weaved together, was written around a lifetime of accomplishments, good reputation, “blessings” and other renditions of the beautiful American Dream. The foundation of my whole narrative was hope, but hope that was in those good things. I have had to learn that hope is only as unshakable as its object. 

So a year ago, God took it all apart and re-wrote the beginning. It is still hope, but it is in Him.

And when my hope is really in Jesus, all of a sudden my heart is bursting at the seems to have real hope for Cannon, too. Not just in progress, but in the story God will tell with his precious life, and the glory a little boy who sees the world so differently could bring to Him.  

*****

Once Cannon and I made it back to the cars, I found his juice cup and sat down with him at a picnic table. Together we waited for a moment, looking out at the horizon and breathing in the peace all around us. In just a few minutes, he smiled up at me and then got down off my lap—his physical indication that he was fine now. We went and found the rest of the family, and while I don’t think we got one picture with all the cousins that night, or even one where all of us were looking, we drove away with smiles on our faces. Alex reached over and grabbed my hand, and we laughed a little bit wondering why on earth we didn’t wake him up and give him a few minutes to run around in the place before throwing a chorus of resounding “say cheese!” at him.

This is our beautiful life. Not one day of it has taken God by surprise, and not one of them will be wasted.

The other night, Cannon joined his siblings and me in a game of tag— he has never done that before. He turns when we call his name now, he asks for what he wants with words and not pictures. He sleeps all night. He hugs his siblings. In life we tend to measure progress by big things or in big moments—like family pictures. He didn’t do so well in that moment, but he has had a thousand amazing little moments before and after that one.  

So, I hope. And I’ll keep hoping. Because this progress, these everyday miracles, is in its rightful place on the periphery, like the stars and the moon lighting up our lives. They are no longer at the center. Our life, and our hope, moves around the Son.

what I wish I would have said

“Cannon, stop please!”

He keeps running, hard and fast down the dirt row lined with blueberry bushes.

“Cannon,” I raise my voice, “stop now!”

His little legs pick up their pace, as if my words are sideline encouragement from a proud mama rather than the desperate plea of a weary one that I mean them to be. But I follow up with one last effort: “Cannon Lee, STOP!”

At this point, I realize the futility and start running after him, leaving my other two children behind with my mom and friend, and hoping I can catch him before I can’t see what row his little head turned down. As soon as I turn the corner there he is, totally still and turned to face me with a big smile on his face. He had stopped, just like I told him to. 

“Cannon, mommy needs you to stay near me while we pick blueberries, ok?”

He tilts his head with his precious grin still beaming, his acknowledgement of my words even though we both know they were not understood. He was playing a game: a clear dirt path signaled to him the freedom to make his way down it the only way he knows how—running. He grabbed my hand and walked back to the group with me.

We got in line to grab our fruit picking baskets, and as we waited our turn I held tightly to his little hand as he pulled and pulled, willing us both back to the dirt path. This is fairly standard in unfamiliar places; Cannon’s little body is overcome with the urge to explore and understand and run around in every inch of new territory, and his little ears seem deaf to anything his own little mind is not telling him to do.

When it was our turn for the farm’s director to tell us how to properly secure our blueberries from the bush, she looked down at Cannon, who was reaching down for handfuls of bark with his free hand.

“Is this the one who was running?”

“Yes, this is him,” I replied with a smile. “He gets excited.”

“Hmm. Well, he’s not a very good listener is he? Young man, don’t pick that up.”

Cannon grabbed another handful.

“Young man, don’t touch that. We don’t do that.”

He continues to look at the ground, spotting his next grab.

“Excuse me,” she responded with irritation in her voice, “do you need to go inside the farm and learn to be obedient, young man?”

In moments like these, I usually just focus on Cannon, try to distract him from the behavior that he shouldn’t be doing and give him a positive one instead. I was short on options for those in the moment, so I did something I rarely do.

“Ma’am, he is autistic. I am not sure how much sense this all makes to him. Don’t worry, I will watch him very closely out here.”

“Oh.” A pause. “There was an 18-year-old like that out here yesterday. Her mother couldn’t do anything with her.”

'Like that?' Deep breath, mama, deep breath. Adding this to the list of unhelpful things people tend to say without really thinking about them.

A year ago, that comment would have made me break out in a sob right then and there. Six months ago, I would have been frustrated, stomped my way through the rest of our time and then vented about it to a few trusted friends, toying with the idea of writing a pithy “open letter to the rude farm owner,” but my husband would have talked me down from that place. But last week, I just smiled back, emotionally numb to her insensitivity because that’s really all it was, an insensitive comment from someone who doesn’t understand.

But today, a week later, what I wish I would have said is this:

A mom came out here with her 18 year old autistic daughter? Wow, how cool! You know, she’s a brave mama. Autism is so unpredictable and all we want for our kids is to be able to participate in great things like this, like picking blueberries on a beautiful summer day, so the fact that she came out here and tried, that’s amazing, and I’m sure it wasn’t easy for her. Yes, brave mama indeed. If you see her or anyone like her again, you should tell her that. Sounds like she’s doing a great job.

I missed the chance to say that last week, but I won’t next time.

Cannon has a defender much great than me, and that’s God. But God made me his mama and therefore his advocate, and I think I am finally strong enough to be just that. I don’t plan on arguing and I certainly don’t plan on crying; most comments come from ignorance, not maliciousness, and they are simply part of the journey of special needs—I think in particular a special need that on the outside doesn’t look like a special need. But I am so very ready to tell the next person who just doesn’t understand what she is seeing one very true thing:  we, special needs mamas, are a brave, brave crew.

*****

We brought home almost 4 pounds of blueberries that day, and even though the owner told me not to I kept sneaking Cannon a few as we picked. I believe in that boy, and I believe in the story God is writing in all of us, because His stories are always heading toward what is good, toward our forever home. They are not always easy, but always good. Moments like that just remind to not be afraid to tell it.