epilepsy · life

16

I didn’t imagine having children, so never before did I think that I would be a mother to a 16-year-old. But here you are! Fully formed human, playing basketball and video games, picking on your sister, back talking. Yes, you’re a teen.

You’re also my first, and it’s hard being the first. At anything except maybe finishing a race, which is OK if that’s your thing. You were our guinea pig. Our little man, who is a beautiful combination of your dad and me – my long legs and his great hair, with more than a touch of impatience and an Italian nose. More than that, you were born from love, and we hope you’ve felt that love every day of your young life.

Because you are loved. And you are young. Even though I have aged little more than a decade – it feels closer to a lifetime. Let’s be honest: You were a hard first kid to have, babe. Yeah, you didn’t sleep through the night … you waited until you were 4 for that. And you didn’t say momma or dada or any other word until you were at least 2. You missed a lot of milestones, buddy, and your mom and dad sweated each one.

Most parents don’t know what their baby is thinking and experiencing, and you were no exception. But with you, well, there was a lot more happening in that brain of yours than the average toddler. We didn’t know. So, we worried. And then we did know. And we worried more.

You did it all while we held your hand, sang and watched so very much TV because you had a lot of medication in your system and couldn’t do much more. So we snuggled. (You’re still a great snuggler!) And we loved you harder.

We endured hospital stays and test after test, together. We tried one medication. Then another. And another. And another. We had surgery. And more surgery. And more. And although you appeared to sail through it with your happy spirit intact, mom and dad did it with less of a smile – at least when you weren’t looking.

Just before surgery, you had another life-changing event: you got a sibling. You loved that little person … smiling at her and offering her your toys. We never imagined you, and we didn’t imagine her either. But everyone deserves “their person,” and we wanted you to have at least one person in this life who would always be there for you. Sometimes, that feels like a lot to put on someone. But hopefully we’ve shown you both that you are loved and that you are in this life to give love, so that caring for each other never feels like a burden.

 

 

Like all kids, you grew! You love school and not once have you ever complained of going. Not even during fourth grade when your school let you down – big time. It still makes me sad. And it makes me angry – really angry – when I hear about how kids with disabilities are sometimes treated at school. Seriously.

As you may one day see, as you grew, so did we. Not that we didn’t make mistakes along the way. We did, and we learned from them – and are still learning! I was an insecure mom, but now I’m a warrior mother who wouldn’t think twice about moving heaven and Earth and anyone who says you “can’t” or who puts you down out of your way.

And your dad, well, wow, I can’t speak for his side of the story. I can only tell you that you’re one of the luckiest kids ever to have a dad so committed to love, acceptance and putting his own needs aside to lift you up. You won the lottery with this guy, son. And quite honestly, so did I.

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On this momentous occasion of your sweet 16, we can’t help but think of all you’ve experienced in that short time. You have miles ahead, my sweet, and I can’t walk with you every step. So, as always, we love you. And when you push us, we love you harder. And all along the way, we try to smooth the bumps in your path and prepare you for a world that we hope will see you as you … a boy who loves his family, a boy with autism, a boy with epilepsy, a boy who takes longer to learn things, a boy who loves ice cream and bowling and who personifies joy on a basketball court.

You are awesome and you are loved, and although the world is sometimes dark and scary, you light it up for everyone who knows you. Happy 16!

 

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