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When you wish it were different: A special needs mama reflects on the joy and the uncertainty

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 it 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.  

A reminder of what isn’t

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 were different.  

I don’t always feel that way about this journey. In fact, most days I feel confident. 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 guidance he can sing “The Wheels on the Bus” and knows most of the songs from Daniel Tiger’s Neighborhood, often surprising us with sweet sentences like “You can choose to be kind!” 

Joy and uncertainty

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 were different. And then, in the very next moment, I feel guilty for wishing it were different, as if I do not love my son fully and completely as the exact little boy he is. 

Gratitude and sadness

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 mothershe’ll tell you that you can. 

The best thing to happen to any of us

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” (Luke 22:42 ESV).

God, if there is any other way, please do it. If your plan can be different from 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.  

One day everything will be different

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.

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