I hear the scuffle from the basement as I am putting laundry away. “No, Cannon! It’s my turn to pick the show!” our four-year-old, Jordi, yells in frustration as his older brother fights him for the remote. I know before I go back upstairs who will win this battle.

“Nooooo!” Jordi continues, frustration now turning into sobs and anger as his big brother refuses to give back the tv remote. I walk in the family room and he begins pleading his case with me in one breath between the sobs. “Mom, Cannon took the remote and it’s not his turn it’s my turn and he just took it and I was watching sumfing!” 

“I know Jo, let’s ask him nicely and with self-control if he will give it back.”

“Nooooo!” Self-control be damned, Jordi takes a swing at Cannon’s back, who yells a little bit but continues trying to navigate the buttons on the remote without acknowledgement of his brother’s feelings. 

Jordi’s cheeks grow redder and redder and his voice more and more upset. He and I both know what will happen if we force the remote back out of Cannon’s hand: aggressive swings and high pitched yells and a little boy who will be unable to calm back down for who knows how long. 

Finally, Jordi finds the sentence, the thing that makes him more upset than just having the channel changed in the middle of his show: “Autism boys don’t get to pick! Only boss boys get to pick. I am the boss boy! Cannon is an autism boy!”

I stand there looking at my boys, one wildly upset and the other seemingly indifferent just two feet away. It is the first time I realize Jordi knows his big brother has autism; the first time I understand that he is well-aware of the differences in his brother, and that those differences feel frustrating and at times, very unfair to a four-year-old mind. 

And it is the first time I realize I need to help Jordi figure out something I am still very unsure how to do every single day. 

“Oh JoJo, come here,” I say as I pull him into our bedroom and onto my lap. We sit there in silence for a few minutes, as I pretend my big four-year-old is more like a baby so he can snuggle up really close. His body isn’t the only thing I am holding; the heavy feeling of his sadness about his brother and mine at not knowing what to tell him next felt like more weight than his body. 

“Hey bud,” I finally break the silence. “Let’s talk about Cannon, and about why you are sad, and how we can help him learn to do better.”

Jordi sniffs a little, then nods his head. 

//

For the last four and a half years, our family has been learning how to live with autism, and for almost all of that time, I have seen the struggle through two sets of eyes: the parents, and my son’s on the spectrum. I’ve sat and held him tightly to keep him from hitting his own head on the wall. I’ve reacted in anger when he slapped me in the face for asking him to put his clothes on. I’ve researched and googled and read books and spent a lot of money on oils and supplements and vitamins and anything that promised the slightest glimmer of hope that tomorrow would be better than today. And of course, I’ve wondered how impossible it must feel for a little boy to be living with a mind that will not form the words he needs to tell me what hurts, why he is sad, what he wants to do, or what happened at school today. It’s been me and my husband, and it’s been Cannon - the three of us living in this little complex word; and because our other children were so young, I have enjoyed a few years of compartmentalizing my parenting into two categories: autism - with it’s stringent therapy schedule and special diet and separate classrooms - and “typical” children - with social rules and manners and reasonable expectations for what the day will bring.

But now, I see there are not two categories. There is just us.

Special needs is a road the whole family has to walk, but the truth is—separating the paths is easier, for my heart and for my hands, than bringing everyone on the same one. But here we are, my husband and I leading the way with a trail of Cannon’s siblings behind us, who are too young to fully understand developmental disabilities, but plenty old enough to know it makes them frustrated. And right now, I have to find the words to tell another little boy what it means for his brother to be an “autism boy”, and after more than four years of searching, I still don’t know the answer.

//

I sat there with Jordi on my lap, still reeling at the injustice of having his tv show taken from him so abruptly, and knowing full well I would never let him do that to someone else. I truly thought when the time came, I would be ready for this moment, this delicate conversation that introduces two opposing truths to the world for my kids: Cannon is a good boy, but autism is a very hard thing. 

Paradox is hard for everyone, but it can be especially disorienting for a child. 

Alas, I’m not ready for the conversation, because on any given day, I deal with that paradox differently as well: sometimes with solid faith in a good God and other times with desperate cries and genuine anger that sovereignty could allow a child to struggle so much. 

“Jo,” I whisper to him as I scratch his back and watch his sad breaths slow to a calmer cadence, “I know this is so hard sometimes, to have a brother who has different rules than you.” 

He nods again, lulled into listening with the magic of a mom’s light touch.

“And bud, I get upset too, but I also know this: Cannon loves you, and he loves jumping on the trampoline with you, and chasing you, and squirting you with the hose!”

“Yeah, Cannon loves that,” Jordi says with the slightest hint of a smile as he pictures the hose and the backyard and the laughter from the day before in his mind. “He likes to put it on my head!”

“I know, he thinks you are the most fun brother ever!”

“Mmm hmm,” Jordi responds, a satisfied smirk settling in on his face.

“So I think, Jordi, in the really hard moments when we don’t understand what Cannon is doing, or why he is doing it, we just have to work really, really hard to remember how much we love each other. Autism makes so many things hard for him that are not hard for me and you. But,” I lean my face in as close to his as I could get and heighten my pitch with a little bit of excitement, “God knew he needed a little brother exactly like you to make him laugh and to play with him, didn’t he? No one will love him better than you will, JoJo.”

Another nod and smile - not one of resolution, there will always be much to be resolved, but one of acceptance.

“We will keep learning together, Jo. And so will Cannon!”

Maybe the only answer to two opposing truths is a third one: we love each other.

And wouldn’t you know, Cannon walks in the bedroom just a moment later, holds out his hand and says, “Heee go, Jordi,” and hands him the tv remote.

“Fanks, Cannon,” Jordi responds, then walks back out to the living room to finish his show.

//

*This essay first appeared on the Coffee + Crumbs Patreon site.
If you have been encouraged by my writing here or on the C+C blog, consider becoming a patron and joining the community for as little as $1 a month.

It’s been three years since our little man was diagnosed with autism, though closer to four since we knew it was coming. When I look back, it feels like time has roared by, almost like it has gone on without me. Three years? It can’t possibly have been that long. Was I really there for all of it? 

I can also recall a good number of evenings when I looked at the clock at 4:00pm, again at 4:18pm, 4:29pm, and wondered if it would ever just be bedtime, so yes, I know I was there. That long days fast years thing is the truth. 

When it comes to autism, time and I are in an awkward relationship. It wants to show up and live at the same cadence every single day; I want it to notice when something is good and slow down, then catch on when something is hard and, obviously, speed the heck up! It prefers sameness though, a lot like autism does, and refuses to bend to my desire for it to play by my circumstantial rules. This is mostly fine; time is given to all of us fairly every single day and there are not many things that are, so I won’t begrudge it.

Four years ago, even with the evidence of autism hovering around us, a staunch and hopeful defiance characterized most of my days. It’s hard for me to say if it was hopeful defiance or fear, actually - even though one should be able to tell those apart. I guess it doesn’t matter much; whatever the feeling was, it was near impossible to live with. I refused to google anything other than speech delay, superstitiously thinking if I typed a-u-t-... or any rendition of it into a search bar, it would make it true. I clung to every possible sign of engagement from my two year old, unsuccessfully believing one imitation of a syllable counter-acted two dozen failed attempts to get him to respond to his name. I constantly measured him against his peers, looking for evidence that his development was ‘normal’, begging my friends to tell me it was ‘normal’, cheering wildly when he demonstrated anything ‘normal’. Still the chasm grew with each month, and hopeful defiance simply could not stand up to fact. 

We were going to live with this thing, this word that carried more weight than I was prepared to lift. But the first step was learning not to be afraid.

A-u-t-i-s-m. 

I typed it. I bought the books about it. I cried about it, but I said it.

The funny thing is, hopeful defiance might have crumbled when it met reality, but God rebuilt it in our lives as real hope, no longer in the outcome, but in the Author of the story. No defiance necessary.

There is an old video on my phone, a dark and early January morning that I was awake with Cannon, reading his books on the ground with him. I am pointing to a mountain on the cardboard page, willing Cannon to take my enthusiasm in and speak, anything, just speak. 

“Mow-nnn-ten.” I say loud and slow, holding each syllable for his ears to process. “Mow-nnn-ten.” 

Silence hangs for a moment, then his tiny fingers point to the mountain and he manages a “Mmm-mmm-a. Mmm-mmm-a.”

“Good job!” I squeal in the background, so delighted with his effort, with the “m” sound coming from my silent boy. 

That same video I am giddily happy in brings tears to my eyes today. Tears that I wouldn’t see what was so clear in moments like that, how profound his struggle with communication truly was; tears that I couldn’t will the words to come from his mouth, that no amount of enthusiasm on my part would bring them out; and tears that he has come so far since then, gratitude that while autism still makes sentences a challenge, he doesn’t have to fight with each syllable in that same way anymore - a luxury not everyone has. It’s moments like this when I am so thankful for both time, and hope.  

Cannon is in Kindergarten today. The many, many weeks of standing at the door of the therapy room so he would not escape feel so distant as we wait at the bus stop together, no need for a tight grip on his hand or prodding to get on the bus. He waits patiently on his own. He sees the door open and runs on like he’s been doing it forever. I could not even imagine this would be possible back there in those therapy rooms; something as normal as sending your child to school on a bus were not possibilities I allowed myself to think about. But time and hope, and no small amount of hard work from all of us, and look where we are, where he is. 

I am amazed by this boy. I wish I could have just a moment in his world, to see and hear and think about things how he does. I wish he could tell me everything, that we could take a walk after school and laugh and ask questions and listen to each other. It’s not possible right now. But he also points to that same book in the video and says as clear as a sunny day, “Let’s go to the tallest mountain!” and you know, a few years ago that wasn’t possible either. 

Jesus answer to his disciples in John 9 about a man’s blindness has for years been our comfort and our rallying cry: “That the works of God might be displayed in him.” But more importantly, it’s been true. There is so much about our good God on display in this boy. I was so afraid of it all just four short years ago, so scared about navigating a life that promised nothing but unpredictability. I was dreading the time and out of hope. Today, holding both the moments we struggle and the moments we celebrate, and constantly seeing this boy surprise us, time and hope are two of my favorite things to depend on.   

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

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. 

(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.

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.

“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. 

For Cannon, on his third birthday

He came into the world so easily—one push, two pushes, then a baby boy on my chest, with a precious little face that mirrored his daddy’s from the very beginning. We wrapped him in a yellow, gray and blue blanket, the one he still spends every night with, and brought him home the day before Mother’s Day. I wish I had written more during those first few months of his life, or maybe taken more pictures. I don’t remember them like I want to, or like I remember them with his big sister. The details escape me every single time I try to recall them and for this, I feel so guilty. But I do remember that everything about him was gentle: the way he slept, his smile, his cuddle, his coos, even his yellow, gray and blue blanket.

But three years and three kids are not kind to a tired mama’s memory. And when we add the hazy details about when it all started to change, when the gentleness faded into disconnection and the coos stopped attempting to become words, it gets even hazier. It was an eighteen-month well-check, then a speech therapist, then a special school, then a specialist, and a hundred thousand moments of is this what I think it is?

It was. It is.

The tears still come, all the time I’m afraid. I would love to report that we’ve moved in to the rhythm of autism and we’ve got it, but that’s a lie. All we’ve got is Jesus, but that’s enough.

Because even through the fog that has been the last three years, and the way it got so thick and scary since the diagnosis, I do know this: when something is wrong, you have to make sense pretty quickly of a God who only does what is right. And this does not happen in a few peaceful quiet times and some tranquilly answered prayers in a journal. For me, it has been more like a street fight, questions thrown like punches and protests of my heart held out in self-defense. A broken record of Why? How? When? My fault? on repeat in my head the whole time.

It took me many months to understand I was asking the wrong questions. The only one I really needed answered was who?

The simplicity of it all still catches me off guard, because the everyday reality of life is anything but simple. I was drowning, spending all of my strength to keep my head above the water and when you’re working that hard to just fight the current you cannot hold anything else. But a new question and a new answer came in like a life preserver—it didn’t take me out of the ocean but it allowed to catch my breath, rest, and not have to fight so hard. It told me we would make it.

The answer to who was this: a perfect God, and a precious little boy.

If God had not given me Cannon, I wonder if I would have ever cared to look and learn how big He truly is? I could not even see the shoreline from where I was, yet God holds the entire ocean in the palm of his hand. This, still, is the most miraculous thing in the world to me.

The road ahead is long, and it is for a lifetime. I won’t pretend that the lessons are done being taught and that we can wrap this all up in a pretty bow and call it complete. In fact, I think it’s the opposite. After the hardest, most tear-filled year, I think we are only just starting. But if at one time I was drowning and unable to see the shore, today I have a life preserver and I do, very clearly in fact, see the shore: it’s God’s glory, his eternal purpose and redemptive plan for all of life. It’s not going to be easy to get there, but we will.

I went in to watch Cannon sleep last night; he is still so gentle in everything he does, even in his sleep. As I watched his chest rise and fall all I could think about were the words “It’s your breath in our lungs, so we pour out our praise…” God’s breath, Cannon’s lungs, my praise. And then I thought about this: we are never really drowning when God is doing the breathing.

*****

I had no idea three years ago what life would look like today. And I have no idea what it will look like in another three. I know so much more and so much less at the very same time, and I am ok with that. But it’s His breath, our lungs, and for His glory. And I do know that’s enough to get us to the shore.

Cannon Lee, who would I be if it weren’t for you? Love you forever, sweet boy. We will get there together, I know it. 

Oh dear reader, thank you. Thank you for being here, for meeting up in this little space and then being willing to come back for a visit. I do not tell you this enough, but it humbles me to no end that these simple words actually have an audience, and that by the grace of our good, good Father, they connect with some of you. Do you know I keep every email, every message, and every word of encouragement you all have sent? Yep, every single one. From South Africa and New Jersey and Texas, from the teacher at my daughter’s preschool, from the fellow special needs mamas, and the friends I do life with on a regular basis— when you tell me that something I offered on paper was even the slightest bit encouraging to you, I praise Jesus and then ask him to help me to show up again and write some more.

Because can I tell you the truth? This has been hard, at times harder than I have wanted to work through, and I cannot do it without him.

When I started just enough brave I was certain God was calling me to pioneer something big and bold in my city. I had grand visions of people all over my tiny pocket of the country being inspired to live bravely and fight for justice in their places. I was slowly but surely stepping in to an idea I knew—and still believe—was from God as an advocate for women in the sex industry. I wanted to tell a different story about them, and I wanted to help them see a way out. Well, God raised up a few like-minded women and we stumbled our way through something we had no idea how to actually do. But let me tell you something: all God needs is obedience, He’ll do the rest. And he has. He has sustained and grown something that is allowing women in a very dark place to see Jesus.

And he has done it not because of me, but in spite of me.

But two and half years ago, that was my brave. And I believed if I could find just enough of it, God would honor that. That ministry has grown in ways I would never have pictured. No website, no social media, only—much like this—vague descriptions of our end goal coupled with massive amounts of prayer and faith. We have a prayer team, consistent donors, and a support group far bigger than I had even thought to ask God to grow it. And yet with every month of growth or moment of ‘only-God’ praises, I have had less and less of a role. It has grown bigger, and I have gotten much, much smaller. I have had to.

It was just over a year ago that we started seeing signs of ‘something wrong’ in our little guy. So many of you have followed that journey since I started sharing it, but all roads seemed to point to autism from the beginning, and that is where we find ourselves today.

I wish you knew how many times I have asked God, “Why?”

“Lord, we were willing, we were ready to go anywhere! But what Cannon needs is here. Why are you keeping us here, why did you give us this? We were willing to go!”

Yet God is so patient with our myopathy, isn’t he? We can only see right here, right now. All of human history has been directed by his hands and we are so quick to grumble over the things we do not like in this moment. But over my months of protesting, he gently kept whispering this to me: ‘If I have asked you to do it, no matter what it is, you’re going to need to be brave.’

If he has asked me to be a special needs mama, I need to be brave.

If Cannon is angry and upset for reasons I cannot understand, I need to hold him tight so he doesn’t hurt himself, and I need to be brave.

If treatments and therapies and endless doctor appointments sweep away savings accounts and extra income, I need to trust that it is truly God’s money anyway, and I need to be brave.

If we cannot participate, or have to cancel plans, or if my little one is misunderstood by onlookers and people who do not know him, if we have to sit outside a birthday party while others walk in and silently wonder why we can't just yet, I need to offer a quick plea for patience and grace, and I need to be brave.

If we do not understand why, if there is no clear cause and no clear cure, if for all of our effort we cannot find a formula that guarantees a way through this, I need to trust the Author of every great story, and I need to be brave.

‘This is your brave, Katie. You only have to find just enough of it.’

If I could summarize our short time on this journey so far I would say this: God has grown bigger, and I have gotten much, much smaller. He’s always been big, I just haven’t always seen it.

And all along the way, I’ve done the only thing I know how to do: be honest about it. I have been honest with my grieving and honest with my hope. I have written from exactly where I am because there would be no possible way for me to pretend to write from some other place. I have thought a hundred times in this past year that I should quit, that these hours spent at the computer could be better spent researching methods and therapies and all manner of options for treating something that is so hard to wrap our hands around.

And almost every time, in the moments I am most ready to stop, there’s an email, or a text, or someone somewhere—maybe I know her but most often I don’t—telling me not to. Bob Goff said once that, “God doesn’t pass us messages as often as he passes us each other.” That, sweet readers, could not be more true for me.

A few months ago, as I was processing all of this with my friend Jen, she said something to me that I have been holding on to all this time. “Katie, I don’t think it is an accident that while your little guy has so much trouble finding his words, God has given you so many of them.”

God certainly does not struggle to see the whole picture, does He?

Today, I am just feeling… I don’t know, some combination of grateful and pensive, as I sit here thinking about how far God has taken me, and what he has done as I have so imperfectly shared the story. This space has kept growing. But I keep getting smaller. While I used to want to be a Writer, capital 'W', and a Leader, capital 'L', now I just want to be someone with unshakable faith, even if it is merely the size of a mustard seed.

If I did not see it two and half years ago, or even a year ago, when two very different journeys began for me, I see it so clearly now: He increases, we decrease. And as that happens, as the distance between God and us gets bigger and bigger, his glory fills in the space. It is so, so beautiful; I just had to get much lower to see it this well.

*****

So dear reader, that is the just enough brave story. My life looks so little like I thought it would when we began. But it looks exactly how God wants it to, and knowing that is all that I need to feel so incredibly grateful to be chosen for this work. I still think and pray all the time about how and when and why to share in words—when you are convicted to your core that God sees every single motive that governs your heart it quickly changes how you do everything. But for today, I think I will keep at it. These hours could be spent in a dozen different ways, but so far they have all added up to teach me about God, and they leave me more in awe of him with each passing one. Time well spent, I think.

I know now that brave is not always leading and not always grand and not even always something anyone but God will see. Being brave is doing exactly what God has asked you to do, and humbly pointing every bit of that work back to the One who sustains it. If you ask me, I think humility is the new brave.

So, what do you say we all keep getting smaller?

And a hundred times, thank you for letting me tell you everything. You are good friends to listen so well.  

It had been an off morning for Cannon since I got him out of bed. He wanted to be put down but he didn’t want to walk. He kept reaching back for something in his room but got fussy when I turned around to walk back in there. He knew what he needed but I didn’t. He had thoughts and feelings but no words for either of them, and both of us felt the frustration of it.

Cannon, just tell me what you need.

Mama, I want you to name what I need for me.

These are the moments that hurt the most.

We had just thirty minutes before we needed to be out the door and on the road to therapy, but my little man just was not having it. Didn’t want his milk, didn’t want his Thomas trains, certainly didn’t want his siblings all up in his space. It took both me and Alex to get his diaper changed and clothes on, sixty seconds of fending off flailing arms and legs that were not without a side glance and biting comment among the two of us. You hold his arms. I got him! Babe, don’t let his leg go. He’s strong! After the wrestling match Cannon went right back to his corner on the couch and buried his head in his blankets. Then he took his socks off, of course. More wrestling ensued.

These are the moments that hurt the most.

I looked at Alex and said, “He gets more upset when we hold him down, when we force it, so let’s just give him a minute.”

“Well we don’t really have another minute; he needs to get dressed.”

“I know, but...” And I have no further rebuttal. I don’t know what to do, neither does Alex. Autism stumps us a dozen times a day.

These are the moments that hurt the most. When for all of our effort we simply cannot figure out our precious boy, which frustrates and shames us enough to get irritated with one another, and we go back and forth between being ten minutes late but having a calm little boy; and teaching him that being on time is expected of us so he needs to get going, upset or not. The first half an hour of our day and we are nose to nose with the incessant reminders that his life, our life, is not ‘normal.’

Then Harper came over with an apple for Cannon. “Cannon loves apples. This will make him happy.” He threw it back at her, but she was undeterred. “Oh mom, I’ll give him his puzzle, Cannon loves puzzles!” She set it in front of him, and he did not throw it- a step in the right direction.

I patted her little head and said, “Sweet girl, I love your kindness toward Cannon! Is that Jesus in your heart? I think it is.” She proudly beams a smile.

And then right there on the corner of the couch, we prayed for Cannon. Well, Harper prayed for Cannon, with all the childlike faith and precious gratitude one should pray. “Dear God. I thank you for Cannon and I thank you for puzzles. Please help Cannon be happy today. Cannon will have a good day at school. Thank you for school. I pray for Cannon to eat his apple. Amen.”

Let it be.

And as her simple yet beautiful words landed on all of us, I realized something she is still much too young to: God has called us all to this. He has given all of us this. And we will all be different, better, much more dependent on Jesus because of this ‘not normal’ journey. I think those can be the best kind of journey—it all depends on how we look at it. And wether we are truly, unashamedly, from our heads to our toes, thankful for puzzles and apples and school.

Cannon did move toward that puzzle. I’m not sure if he wanted it the whole time, or if it got his mind off of what he could not tell us, but he was happy, and we got his socks back on.

“Look Harper, your prayer helped him!” Another proud smile. I’m learning to believe in prayer right alongside my four-year-old.

These are the moments I love the most, when something like this reminds you that your life is perfectly, most intentionally, being lived out exactly how God wants it to.  

Hard and beautiful. Hurting and healing. The worst and the best. A moment my heart wants to feel pity and then explodes with gratitude immediately after. Impossibly, but absolutely, both.

Sometimes, life is just both.

Soli Deo Gloria.