honoring the hard parts

ready for school? inside one family's journey. #specialneeds

Over the past several weeks, I have written this post a million times in my head. But I’ve avoided writing it…not sure how to say it, embarrassed by my hesitancy, wrestling with how it might come across.

My baby turned five last week. FIVE. Yesterday, I asked Truman how he got so tall and he just lifted up his hand and showed me all five fingers, flashing his giant grin. He knows he’s five and he’s pretty darn proud.

He does not know, however, that he’s a little different from a lot of other five year olds. He doesn’t realize yet that other five year olds will go to kindergarten in the fall; he doesn’t even know what that is yet.

Two and half years ago, we had Tru assessed for speech issues; he was a giggly snuggle-bug but was hardly saying any words. We had speech therapists come to our home…and they sent more therapists…and after a few months, we had a meeting to get the results of their evaluations. I can still feel myself standing in the parking lot with Brad after that meeting, feeling stunned by the news about our boy. It wasn’t just his speech. It was cognitive. It was social-emotional. It was sensory. It was motor skills. It was probably autism. And there was no instruction booklet for any of it.

It felt like jumping hurdles at first – leaping over barriers like superheroes, trying to beat the clock with early intervention and nourish his little brain as much as possible. Deep down, I hoped it would be enough to just make all the D words go away: delays, deficiency, disorder. Maybe we could cure him. Maybe we could make him the poster boy for early intervention. Irrational, maybe. But that’s how I get through the muck: I focus on the positive, I remind myself that anything is possible. And you know what? That boy has made such great progress, he really has. Every little milestone feels like a victory, so I share them with loved ones, and sometimes on Facebook, or maybe on the blog. Celebrating my sweet boy feels good.

But lately, I’m allowing myself to feel something else, too.¬†

Last week, we went to a birthday party for a friend. Tru delighted in helping blow out the candles, but refused to eat the cake (or the dinner beforehand, for that matter). We had to explain, as we often do, that he only eats a handful of foods – and that we packed some just in case. “That’s got to be hard,” one guest said. And instead of brushing it under the rug and slapping a smiley face on the situation, I nodded and inhaled the words.

Yes, I thought. This is hard.

Not knowing what sensory trigger might rock his world – from food to sound to a scratchy shirt – is hard. Changing a five year old’s diaper is hard. Reading all the things he has yet to accomplish is hard. Not knowing what the future holds for our precious boy is really hard. Parenting a child with special needs is no walk in the park – so maybe I should stop pretending it is.

When I admit this to myself and allow you to see it, too – that it’s not all happy times here – my eyes start to burn with hot tears. I have spent so long hiding the hard parts that they’re all backed up, waiting just beneath the surface, demanding equal time. I want you to think I’m a good mom. I want him to think I’m a good mom. I don’t want to be a downer…or a whiner…or a victim.

And maybe leaning into the grief will be okay…even do me some good. Maybe nurturing myself through the struggles will make me stronger, not weaker. Maybe I can celebrate the good parts and acknowledge the rough spots – and¬†still be the mama Tru needs. Fingers crossed, heart thumping. This is hard.

*********

This post is part of a Brave Blogging Link-Up I’m hosting for participants in the current run of my How To Build a Blog You Truly Love ecourse. They’re stepping outside their comfort zones today, sharing courageous posts. Please click on any below to visit them and celebrate their bravery…