Like so many are, this is a story about love. It’s also about worry, doubt, confusion, acceptance, tiny and gigantic miracles, friendship and family, joy, celebrations and life. Oh, and sea monkeys.
Mostly though, it’s about love.
Five years ago, while the country headed home from “oooh”-ing and “ahhh”-ing over Fourth of July fireworks shows, my son, Tucker, was born. I spent hours marveling at how there was no way that his very small ittybitty, teenyweenie perfect little face could not be a single bit more perfect. I knew that nobody had ever loved anybody else in all of the history of time as much as I loved him. Except, you know, the people who have and do.
I had a baby. One that I never ever thought was possible. One that I was scared to hope for but dared to hope for, anyway.
I said, “Thank you.” I said, “Please.” I said everything and felt everything but mostly was like, “WOW, LOOK WHAT I DID!” and was unbelievably thankful because 40 years is a lot of years to wait to be a mom.
Time passed, a kazillion baby books were consulted and early milestones were met.
We celebrated. We worried. We doted, and we played. We lived.
We lived while the whispers of worry and doubt over unmet milestones got louder, and the unmet milestones got bigger. Or at least more obvious.
We lived while it was finally time to seek doctors and evaluations and teachers and early intervention, and we lived and died — but mostly lived — when we heard The Words.
The Words that Tucker was and is and maybe-probably-always-will-be developmentally delayed. We lived through The Words.
Autism Spectrum Disorder. Severe speech and language delays. Atypical development. Typical in some areas. Atypical in so many others. Which, in itself, is atypical.
Even though it doesn’t actually happen that people become special needs families overnight, it feels that way, because until the doctor or the teacher or the evaluator, or all of them — all at once — say it out loud, you think your kid and your family is just like all kids and all families.
Then, you feel scared.
Maybe a little bit like you totally screwed parenting up and maybe this whole thing is your fault because if you’d just talked to him more, or made him go to daycare to socialize, or maybe if you’d let him watch less “Caillou” when you selfishly took a shower — maybe — he really would be the imagined just-like-all-the-rest-of-the-kids kids.
But, probably not.
And everything is scary and terrifying all over again, just like that first night in the hospital when you realized that maybe being a parent is just as terrifying as it is amazing.
Everything is scary and hard and worry-filled and a little bit dark.
Until it’s not.
One day, you wake up and realize that life looks exactly as beautiful and messy and disorganized as it did before you heard the words. The sun still shines, the clouds still cloud and the laundry still sits there, undone. Your kid is still the best boy ever.
You meet people. Therapists and other parents and other kids and, while they have lots of similarities to each other, they have lots of similarities to everybody else in the whole wide world, too.
The Big It gets less scary. And mostly, hardly-at-all even sad any longer, when you know that your kid won’t learn to ride a bike or a scooter until later, or possibly never, and that’s not what matters anyway, because he’s still totally perfect. As perfect as all of us are.
Which is not that perfect. But it’s magic and happy and a trusting little boy’s hand gripping your own, full of confidence that you’ll lead him through the parking lot safely. And maybe even through life safely.
Being a special needs mom means giving up dreams. But it also means that the new ones are just as awesome.
It’s awesome, as in, please don’t feel sorry for us.
In fact, I’d even say that being a special needs mom is better than Sea Monkeys.
Because Sea Monkeys sound like the coolest thing, ever. I mean adorable little monkeys swimming around a fish bowl?! Playing with each other and playing with you, and smiling at you and having their cute little monkey faces have adorable, unique little features so you can tell them apart and know that the one named Benito will never be mistaken for Carter, because Benito has that little tuft of Sea Monkey hair!
The stupid Sea Monkeys are not cool at all.
Nor are they monkey-like in a single, solitary way. They are so un-monkey like, in fact, that not only do they not have monkey hair, or arms or little monkey hands with which to wave to you from their sea in your room, they have no faces.
And you can’t tell them apart at all and obviously they are the worst pets ever invented.
Being a special needs mom is the opposite of Sea Monkeys because when you think about being a special needs mom before being one, it sounds like it will be hard and sucky and hard and judgy and hard and maybe you might even think that if your kid can’t do the stuff you had always dreamed about doing with him, that it wouldn’t be fun. You think it might be as faceless (because, until now, it has been, as the Sea Monkeys really are).
Except that it’s not sucky — it’s full of faces and expressions and love, and it is fun.
It’s magical and wonderful and amazing and beautiful and even better than Sea Monkeys would be if they were actually little Benito and Carter with their funny little monkey faces, being the friends you’d hoped for.
It’s better than you’d even think about dreaming for.
One day, you start planning a beach vacation. Because the little baby with the ittybitty, teenyweenie perfect little face that could not be a single bit more perfect is turning 5.
Whoever said that the moments are boring and that the years are too short was right.
I love the moments, though. Because these moments, right here, are lifetimes. Full of wonder, light, and are, my friends, the faces of 5.
We have had pool time and beach time,and water park time and flying. We had boardwalk roller coaster rides and fearlessness (Tucker’s, not mine).
We had swinging, high up into the air.
We’ve had heart-stopping ocean moments, when Tucker was twisted and turned in the post-hurricane waters that left me shaking and crying and him asking to do it again.
We have a funny, crazy, amazing, shy, crawling-on-his-knees-to-avoid-his-best-friend’s-grandparent’s-faces, daredevil boy.
We are celebrating special needs, because we are celebrating this kid.
We are celebrating Five. Saturday night, one night too late due to the hurricane, we celebrated with a fireworks show on the beach. I sat there, my legs resting in the cool night’s sand, with my not-so-little-but-still-little little boy in my lap, snuggled against the ocean breeze, “oooh”-ing and “aaah”-ing to the fireworks that we missed five years ago for his birth, and life was perfect.
We were young and old and everything in between.
Connected to all of the betweens and all of the people, everywhere.
We were just the regular family, and we were the best family. We were the best and the youngest and the oldest and the most complete.
And when Tucker asked me what the fireworks said, because maybe the patterns looked like words, or maybe, because he, too, felt the importance of the moment and wanted to be sure he wasn’t missing the message. I answered, “They say, ‘Happy Birthday, America. Happy Birthday, Tucker. Happy Birthday, This Life.’”
And I knew, again, that this is exactly, perfectly, my perfect, perfect boy.
My perfect, perfect, messy, messed up life.
As the firework’s peak ended, and people began to get up and leave, we sat, sighed and gave thanks.
Tucker looked at me and said “Hm. I say?”
“Yes, Baby? What you say?”
And he said, “I say, thank you fireworks.”
Yes. Thank you, fireworks. Thank you, life.
This post originally appeared on Finding Ninee.