5 years in…

It’s been a long time since I’ve made time to write. Years, actually. But since Christmas Day marks 5 years since our Down syndrome journey began, I’ve found myself thinking about everything we’ve been through these last 5 years, and I just needed to put some of my reflections in writing. 

You see, we’ve been busy. Busy learning and growing and taking vacations (Disney, anyone??) and going to swim lessons and ice skating and gymnastics and therapy appointments. We’ve had IEP meetings and been through several surgeries. I started a business. Our daughter finished 1st grade and 2nd grade. And Eli has nearly 2 years of preschool under his belt and he seems to be the most popular person everywhere we go. 

Our life has marched on.  

As I look around my house, I pause. There are toys scattered haphazardly on the floor–in every room, it seems. Evelyn’s toys. And Eli’s. There are piles of laundry to put away–little boy shirts and little boy pants folded neatly next to little girl school unforms and leggings, just waiting to be tucked into a drawer. There is art work decorating the walls in every room–Evelyn’s art work. And Eli’s. His are no doubt the products of occupational therapy sessions at school, with their crooked cuts and shapes pasted sideways. We’ve seen his coloring go from unfocused to purposeful. We’ve watched him learn to trace a path. We’ve listened as he learned to say his name. His full name. And his sister’s. (And we laughed as he generalized her middle name–Sophia–to everyone else: “Mommy-phia,” “Daddy-phia,” and so on…) 

He climbs to the top of his bunk bed and the top of his tree house–from the side. Forget the ladder. (He does like ladders, but only at certain times–like when I’m hanging Christmas lights outside and come down to get something, only to turn back around and find him at the top.) He jumps and swims. (And gets moved up to the next swim class on the very. first. day.) Sometimes he has tantrums. (Lord help us, this child can be strong-willed. Spirited. Stubborn.) He’s still working on his colors and learning the alphabet and mastering counting. But he surprises us at the most random times, when he’ll start counting or singing his ABC’s totally unprompted and we hear him and it’s like, oh-my-goodness-this-kid-is-getting-it!! 

Oh, and potty training. That’s coming along too, but we aren’t quite there yet (mostly because we haven’t pushed him). His vocabulary has exploded–he has a word for pretty much everything and he is speaking in short sentences. He can tell us stories–details about his day or things he remembers–and ask for what he wants or needs. (“Give me that!” is a popular demand. We’re working on manners too, although his are generally good with everyone else.) He says, “I love you too, Mommy.” (Even when he says it first.) Yes, my sweet boy, I love you too. So much. 

He tells knock-knock jokes, and he lives for going to Gaga and Papa’s house. He loves going to church and his prayers are so sweet they’ll break your heart. (“Dear ‘Guy,’ Thank you for Mommy and Daddy and pizza and ice cream and Evie-phia…”) His sun rises and sets with his amazing big sister. Seriously. That precious girl is the best. He loves to “wuggle” (snuggle) and read and play outside. He adores our dogs (and occasionally tries to ride one like a small horse). He is obsessed with gloves and Minions and Mickey Mouse. His teachers tell us he has excellent problem-solving skills. And they’re right–he does. He doesn’t know there are some things he shouldn’t be able to do; somehow, he finds a way. Thirsty? No matter–he’ll find his way into the refrigerator and then come find me, full gallon of milk in hand. “Mommy, I want milk. Heavy!” 

He is a leader in his classroom and helps the younger children. We can’t escape day care without several other kids–from different classes–stopping to hug him and say goodbye. I love when they stop me as I’m walking in–“Are you Eli’s mom?” they ask. “He’s my friend. I’m his good friend.”

Yes, we’ve been busy. But so have you. And that’s my point–our life has marched on, just like yours, and it’s been overwhelmingly good. There was no way, of course, that as I sat holding my critically ill newborn 5 years ago, I could have imagined how perfectly and boringly typical our life would be. That I’d be tripping over legos and hot wheels, just like my friends whose sons don’t have Down syndrome. Or that I’d never get tired of seeing just how excited he is every time I walk into his classroom to pick him up after school. 

But it’s also extraordinary. 

Better than I could have ever dreamed. Better than the life I thought we’d have when I was pregnant with Eli, before we knew he had Down syndrome. Not every day has been easy. And my family has been through a lot, especially the last year. To hell and back, actually. But it has nothing at all to do with Down syndrome, and here we are–getting better. Growing. Learning. Loving. 

This child–this handsome and hilarious and loving little boy with his extra chromosome–has given my life a new purpose. He has strengthened my faith and taught me more about my capacity to love in his 5 short years than in my entire life before he came along. 

Extraordinary, indeed. 

And yet, at the same time, typical. 

Extraordinarily typical. 

Happy 5th birthday, Eli James. What a beautiful adventure we’ve had so far.

And to everyone that’s stuck with us on this journey, Merry Christmas and thank you. Thank you for loving us, for cheering for us, for supporting us. It truly takes a village, and what an amazing village we are blessed to have.