Who we are – World Down Syndrome Day.

This post is part four of a series in response to a campaign entitled “Who I am” for World Down Syndrome Day.

Olivia Faye.

Olivia's 4th Birthday

Olivia’s 4th Birthday

“I did it!” This is Olivia’s favorite declaration of late, and I absolutely love hearing it being screamed across the house. The best part is it accompanies a repeated demonstration of her latest feat. And even if it’s the same feat for days in a row, I’ll happily cheer her on. Of course. I mean…that’s what mommas do.

It would be easy to list her accomplishments; bragging on a child with belated milestones is oh-so-sweet. Moms like me ache for those milestones. And when we see a typical child so easily doing their thing, we ache for our babies who have to work harder and longer to get there. We don’t want pity, though. Never. Only understanding.

Tiny Dancer

Tiny Dancer

When Olivia was an infant, I would tote her to her 3-year-old sister’s dance class. I would sit in the observation room, watch the little girls tap and plie, and silently mourn for my newest child. At that time, I just knew she wouldn’t dance. As time wore on, I thought she might. And today I’m happy to say she dances up a storm with her typical peers. That first class…oh man…I was terrified. I sat outside the room and listened. Waited for crying, fits…chaos. I have never been happier to be so wrong, and the only tears were mine. Remember the oh-so-sweet milestones I mentioned? Her recital is in May, and I.Can.Not.Wait. I’m talking multiple cameras, Kleenex…the works.

I hate being cliche, but Olivia has taught me waaaaaaaaayyyyyyyyy more than I’ve taught her. And I’m quite certain she’s not finished with me yet. Luckily, I appear to be a fast learner so far. ;)

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Me ‘n’ Liv

This series has been amazing to write. (The other posts are listed on the main page, on the right, if you’re interested). Difficult but rewarding. In come cases, excruciating yet thrilling. The Stolls are four years into this Down Syndrome Adventure, and pausing to reflect on World Down Syndrome Day (3/21) is humbling. It’s also extremely necessary to remember those mothers who blazed this amazing trail for us. Education, society, the right to live…We still have a few weeds along the way; sometimes the occasional tree stump is dead center. But Inclusion is my middle name, and removing obstacles gets a little easier as time rolls on.

I have a plethora of emotions when it comes to Down syndrome. Obviously, sadness and anger were more prevalent when she was first born. And those feelings sometimes sneak back to me when I least expect it. But as I reflect on Ds and Olivia and our little family, the most profound emotion I muster is one of gratitude. To my husband for his dedication; to Amelia for her jokes; to Cosmo for his snuggles; to Olivia for making me smile. And to our extended family…grandparents, great-grandparents, cousins, aunts, uncles, friends, etc…for acceptance, love, and support. No matter what.

Olivia has given us a unique perspective on life. And although today is a day to celebrate Liv’s extra chromie and what it has brought to us, we celebrate everyday. Happy World Down Syndrome Day from the Stolls.

Ds Day Collage

 

 

 

 

 

 

Basement.

This place stinks. I don’t get down here much anymore, but when I do… well, let’s just say I want out as quickly as possible.

It’s a pit.

A pit where I tend to notice Liv’s differences when I normally don’t. A dark place where I hate everything about Down syndrome. A cold place where it feels lonely. A basement where I want to run up the stairs so fast that my legs might fall off…like when I was a kid and there was a spider or ghost or something lurking in the corner.

What brought me here today? Maybe because school is starting soon. Or because Liv starts dance class next week, and I’m terrified it won’t work out. Could be because my girls are growing up so fast, I just can’t believe it, and inside I still feel 20-something, but I know I’m not.

I bought wrinkle cream the other day. What?!

Now ask me how I can be super excited about something (dance, school, a new daycare…) but petrified at the same time. Well, I think that’s obvious: I fear Liv’s differences will someday make someone stand up and say, “Nope, not gonna work” to us, and not only will I be forced to notice her differences (where I normally don’t), but I’ll be forced to confront and defend and fight.

And the truth is I’m not a fighter. Never have been. I suppose you could say the last few years I’ve been in training. I just hate to step in the ring. For now, I’ll run up these stairs and do my best to stay in the cozy part of the house.