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Two. The number of weeks school has been in session, the number of anxiety attacks I’ve experienced…and precisely the number of anxiety attacks I’ve experienced. Oh, did I already mention that?

After two weeks with Liv in kindergarten, I can tell you this: everything I expected to happen has not. And some things that have happened are completely unexpected.

The first day of school, I took my obligatory ‘back to school’ pictures, dropped my girls off at daycare to hop on the bus, then made a beeline straight to school. Making my way through the crowd of blubbering mothers, I finally find my girls and their smiling faces.

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After watching Olivia, sitting with friends, all smiles and eating an apple, the waterworks start. She’ll be ok. We’re here…in this moment…and she’ll be ok.

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Two. The number of people I’m extremely thankful for during this transition period. Because I can tell you…it’s a transition. And it can be slow. And sometimes painful.

Liv’s kindergarten teacher. Amazing. She includes Olivia completely and communicates with me about Liv’s progress (or lack thereof). Liv has brought home papers where she has written her name, the numbers 1 through 3, and pictures of faces. And each morning, she grabs her backpack and lovingly recites her teacher’s name. 90% of the battle. Won.

The other person is the school nurse. This woman is a saint and deserves nothing short of a Hawaiian vacation. But since I can’t afford to give her one, my incessant ‘thank yous’ will have to do.

Thank goodness, too, for our amazing before-and-after care teachers at our long-time daycare. Their concern and care for Olivia–for all our girls–means the world.

So what has been expected but unrealized? I was completely, absolutely, 100% positive Olivia would be so wiped out after her school days that she’d fall asleep on the bus or as soon as she got home. Nope. The kid is on the go. She’s tired, I can tell, but she’s keeping up with things and even attending dance class. I’m also pretty surprised at how well she’s adjusted to her changing schedule with few complaints.

The unexpected? The accidents. In her pants. She’s having a bit of trouble adjusting to using a new bathroom and having complete and absolute freedom in that area. At home, we’re always verbally prompting her to go, and at school the kiddos just go when needed. So we are adjusting our ways at home. It’s getting better, but oh my. Do you remember when I said the school nurse is a saint? Yeah. It’s been a long two weeks. 2. You get my drift.

On day one, I held my breath all day. Stomach in knots. On day two, the same. On day three, I told myself that I can’t possibly live like that. For obvious reasons, I’d drive myself (and everyone around me) crazy. It’s a conscious decision to let go. It’s hard. It’s impossible. But it has to be done.

Too bad I can’t figure it out.

As for now, I’m so glad to have a three-day weekend. We all need our rest.

And I’m extremely proud of Olivia. May I never forget to tell her that. This girl is in kindergarten for a full day and is already learning, walking in line, and following (most of) the rules. Her teacher did mention something about bathing in the water fountain…

To be continued.

 

 

 

Chocolate milk.

“Olivia had chocolate milk today, Mom!”

Amelia sat, during dinner yesterday evening, and explained Olivia’s day to me. Well, mostly just that milk part. And how they rolled down the hill when they played outside. And a bathroom story. (Those are always good.)

When Liv’s voice fails her, we can usually count on her older sister to commentate.

“Chocolate milk?!” Wow. But…she only drinks milk. White milk. White soy milk. Doesn’t she?

Olivia spent part of her day with the school aged kids at daycare yesterday, graduating into a new era. They told me they were going to send her there “to see how she does”, because, after all, school starts MONDAY, and before-and-after care will be in the gym with all the other school-aged kiddos.

“Ok,” I said, probably a little too hesitantly. But this needs to happen, because it WILL happen, whether I allow it to or not.

I waited, nervously, all day long to hear the report from her lead teachers. Truth is, I’m excited for kindergarten. For Olivia. Excited for a new journey and to see how she does and where she takes us. I’m also completely terrified.

As it turns out, the kid did fabulously yesterday. She played, got along with the other kids…and apparently had chocolate milk.

Worrying.

I had an epiphany yesterday. It happened while I was nursing my 6-week-old. (Sitting with a baby attached to you tends to give your mind time to wander). I worry too much, and I’m afraid this worry is somehow stripping me of enjoying my children.

I worry a lot about my kids. All mothers do. And telling me not to worry is like telling me to not eat that huge slice of chocolate cake sitting right in front of me. It’s going to happen; it already has; it’s what mothers do–on top of dishes, laundry, taxi driving, tutoring and loving our kids so damn much. It’s innate. (Yes, for me, eating chocolate cake is innate.)

Worry stems from love. Well, for me, it’s love and a crazy need to control everything around me. But there’s something else. Having a child with special needs presents itself with an entirely new set of worries. The concerns that go through my head daily and constantly have just become a part of me. Nagging as they are, these concerns are what keep us on a path of independence and success for Olivia. At least, I think they do.

But it’s so draining at times.

I want to feel as though it’s ok to let Olivia run and play all day long without taking a break to work with her on letters, numbers, colors, etc. I want to not get so worked up if she’d rather watch Tangled instead of something educational. I so badly want to ask Amelia how her day at school was without worrying about the grades she brought home in her backpack. I desperately want to spend our evenings and weekends relaxing and doing nothing instead of extra homework to keep everyone on track.

I feel guilty if I’m not working with them. And it’s not fair to them.

But how do I not worry? Let me rephrase–How do I not worry so much? How do I live one day at a time when we’re working really hard toward a bright future for our child with Down syndrome? How do I allow myself to not feel guilty about taking a break from teaching my kids? This is an uphill battle, and stopping for a breather doesn’t feel like an option. There’s got to be an achievable balance, and I need to find it before I go crazy and before I drive them crazy, too.

Maybe this is where the chocolate cake comes in…

 

 

 

 

Waiting.

I can’t breathe. And it’s not a beautiful “I’m so in awe of having another child that I can’t breathe” kind of can’t breathe. I literally can’t breathe. Whether this is due to said pregnancy or this screaming cold remains to be seen. Either way, I’m stocked up on Kleenex, Vicks, whiskey… just kidding. I think. I honestly can’t be responsible for my actions at this point, can I?

Ah, the homestretch. I’m ready. At least, I’d like to think I am. Lots of contractions, insatiable ice cream appetite, potty breaks so frequent, I might as well have a catheter, unexplainable crying spells and/or fits of rage. I think of myself as the grunting troll that sits in its office throwing things–or insults–at poor coworkers and students as they walk by.

And I’m sure my pregnancy-laden retorts are getting old.

Student ~ “I’m tired.”

Me ~ Blank stare. No, no…a glare. Wait. Maybe I started them on fire with my mind. Been a while since I’ve seen ‘em.

Weird how not many people come to my door lately.

Just last week, I found out one of my coworkers is taking first responder classes. I’m both frightened and comforted by the fact that this single, fatherless man knows what “bloody show” is. You know, just in case. (If you don’t know what it is, don’t Google it.)

And is it just me, or do overly pregnants drop things a lot? When did my fingers become meaty, giant sausages? I can’t hold onto anything smaller than my box of tissues. And God help anyone within spitting distance if I drop my lip balm. Because lip balm rolls.

If you are now imagining me bending over, grunting, and chasing an impossibly tiny tube of lip balm, you might be laughing. You’re welcome.

On the flip side, I’m very grateful for the “You look so cute” comments I sometimes get, sincere or not. And the random student who passed me on the sidewalk and declared, “God bless you and your pregnancy, ma’am!” Minus the “ma’am” crack, that kid is a keeper.

But then there’s the random guy who guesses how far along I am each time he sees me. He does not greet with a “Hello, how are you?” When we pass, it’s simply a gestational guess. “Seven months?”. The first time he did this and got it right, I was amazed. Like he was somehow reading my belly via some sixth sense. “How’d you KNOW?!” Subsequent meetings have resulted in me realizing simple math is this guy’s BFF…even though he pretends we’ve never met. Move along, buddy. I’m onto you.

So that’s work, but how’s it going at home? Well, it’s super fun having an 8-year-old ask questions about pregnancy and child birth. We’ll call them ‘teaching moments’…those times she becomes an accidental audience to my morning routine. And then there are the straight up questions, such as, “How does the baby get out, Mom?”

“The doctor takes her out.” I would never lie to my child, but I’m not about to explain this very beautiful and delicate process (ahem) to my 2nd grader. I can just imagine notes being sent home from school… “Amelia talked about bloody show AGAIN today.” or “I think Amelia has European royalty mixed up with crowning.”

And Olivia just pokes at my belly button with fierce fervor. Thanks, kid. Now move along.

Overall, anyone who knows me well knows I’m very grateful to be carrying this child. We had a rough start, and with the upcoming end, it’s difficult to forget about the last time we were in that maternity ward. Fighting for normalcy in a new world filled with Down syndrome, a heart defect, and the unknown…just trying to breathe.

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Olivia is 5. Time flying, and other things I’ve learned.

I really thought I would have written a short book by now. It’s on my ‘to do’ list. Ha. I really think it should be called ‘the junk drawer list’, because it’s just like that drawer in the kitchen that catches all your intentions. You know, the bottomless crapfest you open when you’re “cleaning” in order to toss the stuff you want to organize and put away (there’s just no time!)…the seeming treasures you’re not ready to throw in the trash just yet. “I still need it,” you justify to yourself. Or, “I’ll get around to it.” And eventually the drawer won’t close anymore. Or you have to shove everything down in order to get it to shut.

My life is kind of like said junk drawer lately. Which isn’t bad. I mean, that drawer does have some cool stuff. Ever dig around and find a gift card you forgot you had? Or a rad package of stationary? Yup, that’s my life.

That book is still in there, too. And I’ll pull it out of the drawer soon enough. I WILL. :)

Liv turns 5 years old today. I’m blown away by all that has happened in the last five years… to me, to our family, to Olivia. FOR us. The time has gone extremely quickly, yet excruciatingly slow at times. Time has power like that; it seems to hold abilities that no other entity could dare match. A friend and I were talking about how “Time”, as compared to a person, never takes a break. Never stops or hiccups or sneezes, even. It’s an overachiever, much like that guy in your class that sits up front every day. “Weren’t we supposed to have a quiz today?” Take it easy, Time, you’re making the rest of us look bad.

Time is also that guy who shows no mercy when you need it most. “I wish I could turn back the clock,” we’ve all said. And haven’t we all wanted the world to stop spinning, if even for just a moment, to allow us to catch our breath? And when it doesn’t, we get angry. Because we have to move with it. Time takes us along for the ride, whether we want to go or not. Hmmmm…kidnapper, maybe?

Time strips us of loved ones, faculties, our lives as we know them.

Then again, Time can be our best friend, our salvation. We can all relate to ‘the best of times with friends’ and ‘the passage of time helps to heal’.

Such an enigma, that Time fella.

 

In honor of Olivia’s 5th Birthday, and as I reflect on the last five years, I’d like to offer up some things I’ve learned. Nothing earth shattering, I’m sure, but bear with me as I open my junk drawer…

 

1. Having a child with special needs isn’t the worst thing that could have happened to our family. I remember thinking it would be, if it ever happened. And it was, when it did. But on the contrary, having Olivia has done nothing but strengthen our family dynamic and add a bit of uniqueness.

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Family

 

2. Having a child with special needs can suck sometimes. This contradicts my previous point, doesn’t it? Let me explain. Olivia is amazing. Having her in our lives is wonderful, but society’s limitations for her make it very difficult sometimes. I’m talking friendships, education, traditional social conventions, job placement and her future… We, as a collective people, put others in boxes. And the stereotypes that come along with the ‘Down Syndrome Box’ are very limiting. And frustrating. And mostly wrong.

Every kid does this.

Every kid does this

 

3. Some people will always be ignorant or downright mean, and I have to accept that. This is a toughie for me. Probably the toughest. In fact, I still haven’t learned it. My mom once said to me, as I was struggling with someone’s behavior, “You can’t control other people’s actions, Dear. Just your own.” She’s right. And I have to repeat this mantra daily.

 

4. Olivia has shattered stereotypes that I’ve bought into my entire life. Her life and attitude are examples to me, as she learns more every day. The kid is reading sight words. And she’s potty trained. She’s doing things I seriously thought she’d never do. I get angry with my former self for being so ignorant and expecting so little at first. But it reminds me where my mind was then…and that many people are stuck there. I guess it makes it a little easier to forgive people. Because I can relate.

Awesome kid

Awesome kid

 

5. Watching Amelia learn and grow is icing on the cake. This kid amazes me with her compassion and patience for her little sister. Of course, they’re sisters first, and they do fight a lot. And I’m glad, because it represents a typical sibling relationship. Someone asked me just the other day if Amelia knows that Olivia has Down syndrome. Or if she understands what that means. Funny thought, but I suppose it means different things to different people. To the ignorant person I used to be, it meant the person had a sad existence and would amount to nothing. To Amelia, it’s just a term. If she hears it, she just says, “Ok, whatever.” Olivia is just her sister. That innocence is so refreshing. And let’s face it: in that regard, she’s learned far more than the typical population.

Sisters

Sisters

 

6. I don’t have to be a perfect mom, but I have to try. My kids deserve that. All (almost three) of them. Advocating and educating for Olivia is a big part of that, but I can’t ignore Amelia’s needs. Balance.

Just us girls

Just us girls

 

7. It’s easy to get wrapped up in Down syndrome. Don’t do that. If a kid doesn’t show up to the birthday party, or if someone seemingly looks at your family in a curious way when you’re at Target…IT DOESN’T MEAN THEY ARE DOING IT BECAUSE YOUR KID HAS DOWN SYNDROME. Simmer down.

 

8. Communicating is an art. Glad I studied it in college. To advocate and educate, speak as eloquently as possible. If you’re angry, keep your cool. If you want to make an impact, you have to be taken seriously. Believe me, I’m still perfecting this.

 

9. It’s fun to celebrate the milestones you once thought were “little”.  First steps, words, that moment she says “mama”… Nothing should be taken for granted. Feels good to realize that perspective.

School girl

School girl

 

10. Olivia can put her toes in her mouth. She can contort her body in the weirdest of ways, and it mostly entertains us.

Yum

Yum

 

11. It’s ok to be happy for friends whose kids are typically developing. Or excelling, even. I admit, this one has stung me before. I don’t like hearing that “my 12 month old can speak fluent Spanish”. Ok, I’m exaggerating. But the point is, I just have to get over it. Everyone’s kids are precious and doing exciting things. Should that not be celebrated?! I say, brag on. And I’ll do the same. :)

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Awesome kids

 

12. Having time for yourself and as a couple is vital. VITAL. Make it happen.

I love you?

I love you?

 

13. We’re all in this together. I’m just a big hippie at heart, but I think it’s important to remember that a community can be strong (or weak) depending on the behavior and attitude of its citizens. Basically, uhhhh, don’t be a jerk.

 

14. Our family is just like any other family. No, really. I know it’s difficult for people to grasp that. But it’s true.

This is normal

This is normal

 

So is this

So is this

 

15. Time has been my biggest enemy and my best friend. Remember when I said it has moved exceedingly fast yet excruciatingly slowly? Yeah, that’s true. Olivia’s birth day in 2005 was one of the most difficult days of my life. As well as her open heart surgery date. But, my gosh, that was five years ago. I remember wishing that time to be gone, because I knew things would get easier. I was right about that. But watching time fly by is so bittersweet.

Olivia

Olivia

 

Happy Birthday, Sweet Girl

Happy Birthday, Sweet Girl

 

Time to close the junk drawer; sorry for the spillage. Feels good to look around in there, though. Now, if I could only find that book…

 

 

 

 

 

 

 

 

 

 

 

No pity parties

Parents never intend for these things to happen, but they do anyway. And, especially, when you have a Little with special needs, it’s nearly impossible to avoid…

Let me start here. Amelia’s birthday (Big Number 8!) was last week.

Amelia

 

And so, as any good (crazy) mother does, I planned a sleepover for my girl. Her first one as an 8-year-old. First one ever with that many girls. (There were only four, but it felt like 44.) The girls were great, don’t get me wrong. But come on, it was my first time, too.

And while the focus was completely on Amelia and her big day, it was difficult for me to not think about Olivia. And birthday parties. And friends. And sleepovers. This is, after all, the season of camp outs, sleepovers, birthday shebangs, and just staying-up-all-night-because-we-can parties.

As I watched Olivia interact with the “big girls”, I was so proud. She kept up with them, played well, even had movie night with them before bed.

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And the girls were so patient with her. So I observed. A lot. Much like watching animals in their natural habitats, I imagine. And I was keenly aware of everything going on around me. Swimming, giggling, trampoline jumping, more giggling, presents, tween-like “ooohs and ahhhhs” over the coolest gifts EVER… all the while in the back of my mind wondering what Olivia’s 8th birthday party will be like. Or even her upcoming 5th.

Liv ice cream

trampolineAmelia presents

 

 

 

 

 

 

 

Every parent wants their kid to fit in…at least to a point. They’re lying if they say otherwise. And every parent wants to experience important milestones with their children, like birthday parties and sleepovers. Parents like me…parents of children with other needs…wonder if those milestones will come at all. Or, if they do, will they come at a painstaking cost? For example, will we invite a bunch of kids only to have “yes” RSVPs equaling zero? Or, on the flip side, will Olivia get no party invitations?

And this post isn’t exclusive to parties. What about playing softball? Going on daycare field trips? Being asked to the prom?

I only want to save my Liv from any pain. And, ok, I admit it…me too. But how?

Here’s where I take deep breaths.

If I could stand in front of a crowd of parents, namely the ones who live in our general area, I’d beg them this: I will not ask you to allow your child to come to Liv’s parties; I will not beg your children to invite my kid. All I can hope for, as with anything in Olivia’s life, is acceptance and consideration. But not just for her. For all kiddos. Don’t be afraid of a Little who might seem a tad different. Don’t ignore a Little or her parents because you think “it won’t matter to them.” Don’t let obliviousness turn into hurt feelings.

It does. It always will. It matters. And we won’t say anything to you, because, well…that makes us look like jerks. Feelings flare, tears might fly, defenses arise…it’ll be anarchy! (Ok, not really, but I love movie quotes.)

Anarchy!

Wow, I’m really off track here. (And now I really want to watch The Breakfast Club.) So I’ll wrap with this: I SO hope to be posting pictures of giggling and movie night and trampoline jumping for Olivia’s parties someday. And I think she would want that, too.

excited Liv

 

 

What are the odds?

“Those numbers mean nothing to me,” I politely say to the genetic counselor during our visit a couple weeks ago. Somehow, hearing the odds of having a second baby with Down syndrome…or any other genetic condition…don’t matter. So it’s weird I’m here. Needing to know. But here I sit. Nervous. Petrified. Getting real personal with this stranger, nice as she may be.

So how did we get here? Let’s back it up a notch.

My feelings about our third pregnancy haven’t exactly gone as I thought they would. Or should. People often describe emotions as roller coasters; mine are more like a trip through Hell on a canoe captained by Willy Wonka. The Johnny Depp version. Yeah, I know. Scary.

Think of my poor husband.

The first wave of panic hit me during our first doctor’s visit. No surprises, right? This ain’t my first rodeo, after all. Then I read it on my paperwork. “Of advanced maternal age.” Or, in my mind, “This obvious 70-year-old woman who already has a child with Down syndrome is really pushing her luck.”

I’m 34, and as most women know, the magic number (for some scientific reason that I don’t pretend to understand) is 35. THAT’S when your odds change. THAT’S when maybe you should think twice about bearing a child. And since I’ll be 35 before #3 makes his debut (don’t get excited; we don’t know the sex yet), I’m part of that population. Advanced. Maternal. Age. *sting*

Let me get this straight. As a society, we have concerns about teen pregnancy. And now old lady pregnancy? (Whatever you call it). If I’m doing my math right, that leaves a fairly small window of opportunity to do this thing “right”, whatever that means. And here’s the kicker. Even when you’re not of “advanced maternal age”, things still may not go as expected.

I had Olivia when I was 30.

The odds of Ds were extremely low.

And now we’re back to, “Those numbers mean nothing to me.”

Confession time. I’d like to tell you that I said that statement for no other reason than this: “It doesn’t matter, because no matter what happens or what may go wrong with this child, I will be excited and jump in with both feet. After all, we’re already well-versed in Down syndrome. What’s another syndrome? Or two of the same, for that matter?”

Liar, liar, pants on fire.

The truth is, we sat with that counselor for nearly an hour, going over testing options and odds, because I am worried about the possibility of having a second child with any sort of serious issue.

Now you might be saying, “Then why on Earth did you get pregnant?”

I honestly didn’t know I would be so terrified. This was a surprising wave of emotion, Willy Wonka boat ride and all.

Others of you might be saying,”But don’t you love Olivia? How could the possibility of adding more joy like that to your life be so scary?” Oh, and you might point out, “You’re always saying how Down syndrome has blessed your life.”

Yes, of course. To all of the above. Including the scary part. But scary doesn’t always mean easy.

So what did we decide on the testing? It really doesn’t matter, so I won’t disclose. I realize that’s an odd conclusion, considering the personal nature of this post.

All I will say is that I’ve moved past being terrified of this pregnancy. As my belly grows, I’m constantly reminded of this gift. This amazing gift who makes me vomit and pee my pants regularly.

Boat ride’s over, Mr. Wonka. Let’s have some chocolate instead.

 

 

 

 

 

 

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

 

 

 

 

 

 

Who I am, Pt. E

This post is part 3 of a series in response to World Down Syndrome Day and a campaign entitled “Who I am.”

I just popped on some Spotify and silently thanked my husband, Eric, for my “a little more cultured than it used to be” music taste. We’re heading to a Sigur Ros show in April, if that tells you anything. I also googled Sigur Ros to make sure I spelled it correctly. I did. Whew.

Yup, I can thank him for many things. His ‘let it be’ way of life has certainly evened out my ‘I need to control everything’ philosophy. Don’t mistake his casual attitude for apathy, though. Or my intense OCD for crazy (no…go ahead with that one). So life in the Stoll House is like a carefully balanced teeter totter. Sometimes one of us pushes too hard, and the other goes flying, but hey…that’s what makes teeter tottering fun. And sometimes painful. ;)

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Eric and I have been married for 10 years (11 in May), and I got super lucky. I knew I was getting a great guy, but you don’t REALLY know, do you? I mean, you know he’s good, and you hope you’re not wrong. I knew he treated me wonderfully and had an amazing heart, and that’s all I could really know. But as your lives change and progress and move forward through time…you just never know how another person will handle things. Especially when the unexpected comes along.

If I called Eric an amazing father, I’d be completely understating him. He loves his girls with so much strength and silliness and craziness and passion that anyone can. His patience is never ending, which is pretty much a prerequisite for having children. He’s definitely got one up on me there. I mean, sitting for hours in the bathroom with Amelia during potty training speaks volumes.

Olivia came along in 2008. We were 30, naive, and completely unexpected her diagnosis. That is, until we both laid eyes on her. We both knew…separate discoveries, you might say. I’m not sure if this made things more painful or less; all I know is I didn’t want to lock eyes with him. Because I knew he knew, and I didn’t want to be right. Down syndrome just wasn’t part of the plan.

Funny thing about plans. They change.

That entire day is a big blurry ball of suck (mostly), but I’ll never forget our first exchange. “What are we going to do?” I cried. Literally. Eric’s next statement will forever solidify and represent the rest of our lives together: “What do you mean? She’s perfect.”

Indeed.

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Has the journey to Down Syndrome Land changed my husband? I guess you’d have to ask him, but I’d venture to say no…not really. Except for the Ds awareness tattoo he got right after she was born.

Eric ribbon

I loved him so much for getting that tattoo. Characteristic of his reserved ways, I truly believe it was his way of handling things. That and buying a motorcycle.

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I completely approved. After all, everyone deals with grief in their own way. I cried and started a blog.

Eric and his girls

Eric and his girls

Who I am, part A.

This post is part 2 of a series in response to World Down Syndrome Day and a campaign entitled “Who I am.”

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I read a book to Amelia occasionally. We’ll Paint the Octopus Red by Stephanie Stuve-Bodeen. If you’re a fellow Ds mom, chances are you’ve read this book, cried huge tears, and probably wanted to burn it at least once. It’s a wonderful piece of children’s literature, and so the burning only comes into play, because…well, let’s just be honest: I never wanted to buy this book. And the feelings are sooooooooo real, and it’s sooooooooo much more real when your child is sitting next to you listening to your choking sobs as you try to stifle them. Amelia doesn’t understand it, isn’t aware of why it makes me cry (okay, sob), and that’s the way I like it.

She will never know a world without Down syndrome in it. Her sister was born when she was 3, and while Amelia will begin to notice Olivia’s extra chromie someday, it won’t make a lick of difference. “Olivia is my 4th best friend,” she says. Works for me. And, so, I suppose the above book was written more for the parent than the child. It’s so difficult for us to not put our hang-ups on our children, isn’t it?

That being said, I highly recommend the book to anyone and everyone. If you’re in the Ds community, you’ll relate big-time. If not, you’ll probably understand how some parents feel when their child with Ds comes into this world. This scary world that seems unwelcoming to those who don’t fit in…just. right. (Round hole, square peg. You get the idea.)

So who is Amelia (Ya Ya, as Olivia calls her) as a result of Down syndrome? Hmmmm…I wish she were old enough to write this herself. If I asked her right now, she’d say, “What?” And she might roll her eyes. And rightly so, because what in the world should that mean to her? I don’t want to point out that she should have a particular feeling toward Ds: good, bad or ugly.

What I do know is that Amelia is 7. She’s in first grade, loves her friends to a fault, talks a lot, and loves to tell silly jokes (“Why was the nose tired? Because it was too tired.” It’s supposed to be “because it ran all day”, but I bet you knew that). She wants her sister to leave her alone most of the time, is good at math, and is super awesome at Chutes and Ladders. She also hates mashed potatoes, which I think is really weird.

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She takes a cheer class, thinks she needs new toys daily, loves to paint, and has these amazing eyes. Windows to your soul? More like through it. They see so much beauty in this crazy world. I hope those eyes never change.

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Amelia’s sensitivity both frightens and enchants me. It will surely guarantee a wonderful life–rich with emotion and sometimes agonizing, but hey that’s life. A good one anyway.

She’s compassionate and caring, sometimes whiney. And she loves her dog, even though he simply tolerates both girls.

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Sometimes I wonder how different Amelia would be if her sister didn’t have Down syndrome. Which is hilarious considering how I wished and wished for a sign on how to teach Amelia good things. Read that post here. Would they be closer? More alike? Would shopping with them be more fun? Would our mother-daughter slumber parties be less chaotic? Maybe, I don’t think so, I don’t really know. And ultimately I know it does not matter. Things are as they should be; as they are meant to be for the Stolls. And like Amelia, we are making it a good life.

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