Editor’s note: This is a guest post by Mardra Sikora for a summer series highlighting great bloggers who focus on disability.

I cried when he turned one and I knew heart surgery was on the horizon. I cried when he turned five and we were fighting with the public schools. I cried when he turned 11, and…why did I cry when he turned 11?

“Maybe it’s because you’re getting old.” My father suggested, with his normal tact and compassion.

No, that wasn’t it. It was the unknown. With each year we were one year closer to the great unknown: Adulthood.

Adulthood for my son with Down syndrome.

It’s not healthy how we obsess over the future with our children who are differently abled. When a “normal” or “typical” child starts kindergarten, most parents don’t obsess about what his job or home will be like once the school years have passed. Yet from the moment my son was born, I was constantly prodded about his future and what I was going to do about it.

A few years ago, before Marcus was 21 but with adulthood barreling down upon us, I was out with some girlfriends and the subject of our kids came up. One mother of a young adult beamed with delight – “It just gets better every year!” she said. I envied her.

When does my “It gets better” happen?

Then it did.

It could be because once Marcus reached “adult” I felt like we had beat the odds. When he was born I was told he wouldn’t live past 30. For him, each medical situation proved to be a bump, not a roadblock, and even now we strive to become healthier every day.

The fact that we can enjoy what we enjoy together more: theater, concerts, karaoke. That is fun. I even think the time he spends with his dad enjoying a good (or bad) Alien movie actually fits into the puzzle.

Is Marcus where I want him, so to speak, in his adult life right now? No. But to be fair, Quinn and I are still trying to get where we want to be. So I guess the idea that when your child becomes an adult and BAM! Everything for life is supposed to be set up – well it doesn’t apply to any of the grown ups in our household.

And for the record, worrying and preparing are not the same thing. If I did as much preparing as I did worrying, maybe I’d have the department of health, red-tape, and vocational training wrapped around my finger. Maybe.

Instead the result was a lot of wasted energy.

All of the time I worried about Marcus and adulthood, I looked at what other families could, would, and had to do. I forgot, or somehow failed to realize, that it would be as it always has been: my Marcus.

It’s like I imagined this stranger would come into my life and say, “Here I am.”

“Who are you?” I’d ask.

“Well, I’m the adult Marcus.”

And my Marcus, my boy, would be lost and far away. That, friend, is what I really feared. It’s like…I thought I’d be facing this adult life all alone. I forgot that Marcus would be with me for it all.

Guess what?

Here he is, a growing spirit beside me every day. A sense of humor I rely on. A willingness to try new things with me. A thirst for music and theater and being a part of it all. A creative spirit that Won’t. Shut. Up. All of this is, and always has been, Marcus.

You know, the day he was born and I held him in my arms, my heart was so full of a new and unrecognized love, it literally hurt. And it only grows. Oh geesh – now I’m crying again.

Everybody’s story is different friends, and this is mine today; I’m so thankful that soon, Marcus is having another birthday.

Originally posted on Grown Ups and Downs. To learn more about their journey and adventures, please stop by and look around!