Welcome to our Monday guest post series on Parenting and Imperfection.
I can’t remember precisely when I started reading Heather Bowie’s blog, Team Aidan, but I know her list of what we, the parents of kids with special needs, wish you, the others, knew about our lives made me cheer and cemented my love of her writing. As a mama of a kid with special needs myself, I particularly resonated with “I’m mostly over it, and sometimes I’m not,” and “I constantly teeter on the edge of gratitude and insanity.” <— OH MY WORD, YES; ME, TOO!
Thank you, Heather, for being our guest blogger today.
P.S. Heather can’t identify with this post about my linen closet because – get this – her closets are clean. I know, right? I’ve tried to be the bigger person, though, and not let this stand in the way of our friendship.
by Heather Bowie
I had my perfect baby first. Liam popped out of me in under 2 1/2 hours, nursed like a champ, and slept through the night at six weeks. As a toddler, Liam rarely pitched a fit, he listened to my directions, and even gave himself time outs when needed. He’s grown into a teenager who helps around the house without complaining, stills enjoys my company, and uses kind words with others.
Don’t throw rotten tomatoes at me yet. I got lucky. I’m not saying my parenting had nothing to do with how great a kid Liam is, but it took every ounce of me to just be good enough.
Because I had a second child… Aidan.
I got lucky with him too, but he was born broken.
Did that make you flinch? That’s ok. I flinched a little writing it because I know my job as their mom is to be their biggest cheerleader. That’s not hard for me, but the truth of who Aidan is is pretty complex. We are constantly defining and valuing the best in life and there seems to be no room for broken there.
Unless we make room.
Celebrating imperfection requires stretching our comfort zones and acknowledging failure.
Aidan’s brain has failed him. He’s twelve years old now and was born with an undiagnosed developmental disability. His brain and his body don’t work together. He requires total care; there is nothing he can do by himself. Nothing. Well, he can breathe independently but even that took six months to figure out. Two years ago he was diagnosed with Epilepsy; his brain is the bully that causes his body to seize.
Sometimes I get tired of explaining all of this because I’m afraid you’ll see all of the things Aidan can’t do, and you’ll start calling me a hero for all of the things I do for him that are beyond the realm of regular child rearing and that’ll be awkward because now you’re all staring at me and all I ever wanted to do was fit it.
My son drools and uses a wheelchair and can’t speak. He doesn’t fit in.
This strive for perfection, this desire to be better than, always leaves a less than. That’s my son. I say he’s both broken and the most perfect Aidan Bowie there is. He’s exactly who he’s supposed to be. There’s room for all of us if we redefine who belongs. Broken and beautiful belong together. It’s why I continue to reach out to parents of neuro-typical kids, and encourage other Medical Moms, and make noise however I can.
While Aidan’s broken body has made it more difficult to care for him, it’s also made it easier to celebrate him.
Do you know what it takes to walk? You just put one foot in front of the other, right?
First you need to be able to bear your own weight on your legs. Then you need to find your center so you can balance and stay upright. After finding center, you risk loosing it all by shifting your weight onto one foot without toppling over. Next you bend the other leg and foot in just the right way so it swings forward and strikes down in an orderly heel-toe fashion.
You’re at center again.
These bodies of ours, even when they’re broken, they’re amazing.
My heart was broken when Aidan was born. Broken, scared, and overwhelmed. The way Aidan gave me a voice and a passion; the way he draws people in with his forehead kisses; the way we’ve humbled ourselves to receive the generosity of others for Aidan’s care; the way I’ve found family among other Medical Moms – these gifts are beautiful.
My life broke into pieces when Aidan was born, but I’ve found center again.
You can find me there, making room.
Heather met her husband in a castle in Ireland and they have 2 handsome princes. When Heather is not involved in the myriad of tasks required in raising a child with a disability, she can be found with her hands on her piano, her nose in a book, or her fingers at her keyboard blogging at Team Aidan.
You can see all of the Parenting and Imperfection posts here.