Resuscitation of Hope

Remember the kid from “Parenthood”? Not the show but the movie? The kid who walked around naked in chaps, put a bucket on his head, and got his head stuck in a patio chair? Yeah, that’s my son’s kindred spirit. Especially the scene where he storms the stage at a school performance to protect his sister, “That’s my sister!”

He loves with such intensity that he has to squeeze my lips like he’s preparing to bite into a taco and then he attempts resuscitation on my mouth instead. His love can be painful, messy, but it is unwavering.

For any of his perceived faults, lacking in passion is not one of them and his hugs are the highlight of my day. You don’t quite grasp the intensity of his love until he wraps his warm little body like an infinity scarf around you, giggles like a cherub, and strains his voice in dramatic flair to say, “I lub you, mama!”

This past year’s development in him has left me reeling. I find myself asking in awe, who is this kid?

This was the kid who couldn’t sit down at a restaurant for more than five minutes but now he can finish a meal.

He had difficulty sitting still at all only a year ago unless we gave him something to calm him down. None of us slept because he was still operating on a newborn’s sleep schedule and had an endless reserve of energy throughout the day. There wasn’t wearing him out to sleep, just wearing yourself out and not sleeping. Screaming, violent meltdowns were hourly and required us to move him to his room so he wouldn’t hurt himself. His room is a mattress and gym mats.

I had to be right behind him at the playground lest he jump from the play structure. Now he scrambles up unaided and keeps his stuntman attempts to a minimum.

This was the kid who was more likely to hit, scratch, bite, or pull your hair than to hug you. His sister wasn’t the only one who braced herself or flinched when he ran towards you smiling. Now his aggression is easier to spot and rare. Now he runs up to hug her and she welcomes it, as do we all, without it ending in injury. Now I don’t have to hide the marks. Now he let’s me hold him and seeks me out for hugs.

He’s mimicking animals now, singing, responding to his name (eventually), trying to make eye contact, drawing our attention to what he observes, following instructions with prompting, sitting down to eat, and the cuddles…did I mention the hugs? He asks us to sit down now and nestles in to cuddle with us and gets upset if we stand back up.

The doorbell rings and he runs to the door instead of melting down. He offers to help carry the groceries to the kitchen for me. He’s so strong and careful that I let him. He high-fives me and beams with delight from my praise and with pride in himself. Occasionally, we can take him to stores now.

There’s always going to be obstacles for him and I’m not blind to the comparisons people make. I know he has delays. Yet the most fundamental change for me this year is I have my hope back. After so many people preparing me for the worst about his future I listen now with a new perspective. I’ve seen him work wonders, our boy is his own captain of his ship. He’s not defined by their benchmarks and perceived outcomes. I thought I knew that before but I didn’t believe it as I do now. “Special needs” means just that, a need, not a limitation.

For the past year I’ve focused on acceptance yet it felt more like resignation at times. It was a bittersweet embrace that quickly darkened to a feeling of defeat at my lows. Parenting is never without struggle yet parenting an atypical child is a perpetual exile if you don’t fight against those opposing you. Yet to do so takes strength on every level and I come up short quite often. Sustained sleep deprivation and my own PTSD doesn’t help but I push myself because I refuse to let my kids down like our systems do so many times over. I won’t give up on them even if the bureaucracy does.

He’s been in a special education classroom this year. We had to fight to get him placed. He has not been sent home even once. He’s learned the alphabet in order now. He counts. He can hold a crayon. He’s trying to write and paint.

He’s not as interested in reading suddenly but that might be because he’s interested in other things now. He plays with toys other than cars but he always has one hidden in his pocket. It’s his safety talisman.

This is his first real birthday party this year. He has friends meeting us, he asked for cake, he’s excited and talks about looking forward to it, he asked for chicken,

and he wants, “To go fast in the car, YAY!”

He’s talking.

We weren’t sure if he was ever going to speak, much less, to us. When he began speaking, it was to make requests and we cried in excitement. That was just this past year that he spoke in full sentences. Other families are still waiting for that day or have accepted that it won’t come. I grieve with them and for them. That heartache is the kind you can’t grasp unless you’ve walked that path. I experienced it for three years. That’s nothing compared to what others face daily and I don’t forget or take that for granted. I never tire of hearing him say “mama” like others do because I remember all too well the pain of not hearing his voice at all. His only verbalizations were whining, grunting, and endless screaming. He ran and hid from us.

Someday I won’t trip on train tracks across the hall. Someday I won’t have cars lined up on my window sills. Someday I won’t need to check pockets for rocks and toys before starting the washing machine. Someday I won’t crave the silence of an empty house. I do right now, because there’s only so much anyone can take, and that will end someday just like everything else in life. It can be different and it will be different someday.

We love Owen and are so proud of him. Not because of how he’s changed, or will, but because of who he is and for letting us be a part of his messy, wild, pantless, boundless life. It’s forced us to change in so many ways but for the better. Happy birthday, baby boy. Thank you for holding my hand. It was worth the wait.

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