It’s only day six and I’m realizing it’s going to be a lot harder than I thought to write 31 posts about Down Syndrome. It’s going to be hard, because our lives aren’t that different than they would be if Annie didn’t have Down Syndrome. We get up. We start our day. We wait for the bus. She goes to school. I run around like a chicken with my head cut off trying to put laundry away, unload the dishwasher, run errands, make grocery lists. I pick her up from school. We eat lunch and read books or play games or color in coloring books. We head off to dance or swim class. Sometimes we head off to Speech or Physical Therapy. We hit the zoo or the park. We enjoy coffee breaks. We take advantage of nice days. We walk the block. We chat with strangers. We eat dinner together around a table every night. We snuggle in pjs before bed.

This is what we want you to know the most about Down Syndrome. It’s not that different. It’s not sad. It’s not any more overwhelming than life is in general for most.

Sometimes I think it’s maybe a bit more awesome, but I am a bit biased. I get to spend all my days with this sweet girl.

Two years ago I asked my dad to write about Annie. Annie’s so lucky to have such a wise soul as a grandfather. I had to share this one again. 

We once watched a meteor shower together on a perfectly dark night in Central Wisconsin. We were perched on the hood of our Chevy Suburban; some of our backs flat against the windshield, the rest against the torsos of those leaning on the glass.  Seven of us huddled in the smallest conceivable space staring at the improbable spectacle that was marking time against the limitless sky. 

It isn’t often that you get everything you want in life, but for an hour, there it was; the juxtaposition of the nucleus of family, condensed and focused, beneath the unbridled fury of the universe.

I remember thinking that it could never get any better than that moment when all that could be said was “ooh, ah”.

When something makes everyone aboard go “ooh, ah “, that’s pretty good … and pretty rare.

So for the next 20 years I would think about that night as the perfect gift. One to which you are entitled just once in your life.

But then here comes Annie; streaking into our lives with unabated and imponderable light.

There’s a perfect picture of her sitting atop the shoulders of her father; arms bursting out with the force of uncontainable joy; surrounded by the very souls that so many moons ago reclined on the bonnet of our long gone Chevy.  

“ Ooh ah” is the only fitting caption for that picture; and for the hundreds of others that record the moments when Annie draws us all together to witness something truly, reliably, irrevocably good.  She makes us see how easily and often we can have everything we could ever want.

 

 

This morning Annie and I met a former Rome student for brunch in the city. It was wonderful catching up with her, she studied in Rome when Annie was only 18 months, so we haven’t seen her in a while. On our drive home I began to reminisce about our time abroad and what it was like rearing our baby and toddler there. Which reminded me of this post, one of my favorites. It’s funny how what feels like forever ago really wasn’t that long ago.

We recently returned from a five day get-away in Paris. While roaming the incredibly charming sidewalks, taking in the stupendous sites, and gazing at famous works of art; I couldn’t help but have to stop to catch my breath. Have you ever felt so completely overwhelmed that you can’t breathe? Usually when this happens to me, it is in times of great sadness; during my hold-nothing-back sobs where there just isn’t room for air. Like when my grandmother passed away, I just couldn’t catch my breath. Or when the three doctors and that nurse walked in to the hospital room with grim faces the morning after Annie was born to deliver the news of her diagnosis. It was as if all the air had been sucked from the room.

In Paris it was different. I was overwhelmed to the point of breathlessness in the completely opposite way. As we walked along the Seine, with the towers of Notre Dame in view, I had to stop to adjust my coat. As I looked up my new view included the Seine, Notre Dame, and Michael pushing Annie in her little blue stroller. Tears welled in my eyes, and I felt more lucky  and at peace in this moment than I ever have.

Annie’s little blue stroller. The stroller we purchased just a little over a year ago before our ten day trip to Tunisia. After trying to haul Annie’s enormous (“spaceship” as her dad calls it) stroller onto buses and trains and squeezing it through crowded alleys, we decided we needed the smallest, lightest-weight stroller available. Annie’s first stroller “system” cost almost 450 euro. (And we never use it!) We forked over 59.90 euro for our little blue one.

The stroller is just over a year used. But you would never guess it. It looks like it’s been handed down for years, like the little bums of several little tykes before her have left their imprint. The wheels are worn, the light blue turning a pukish-gray, stains from gelato and spilled milk and Polish Zurek soup.  From Tunisian cous cous and  and Baklawa. From a hot chocolate from London, and juice from a fresh Sicilian blood orange. Sometimes as I clean off the crumbs from the crackers she loves to snack on, it’s as if I can feel the sand from the Sahara or from the shores of Ischia that once occupied the crevices of the seat.

I have a love/hate relationship with this little blue stroller. I love that I can lift it onto a bus with Annie strapped in and my enormous diaper bag hanging from the back all by myself. I hate that the wheels often get stuck making turns impossible. I love how easy it is to close and open and the tiny space it takes up. I hate that it shows every stain and ounce of dirt. I LOVE all the memories we’ve made with it. I HATE it for the guilt that consumes me for having Annie in it for too long, especially during our trips away. I LOVE it because every time we take it to explore a new city, I am reminded of all the places Annie’s experienced. I HATE it because I CAN’T go without it. Annie is still not standing on her own, which makes it impossible to put her down. This little blue stroller is essential if we are going to leave the house. I use it everyday. Rain or shine, this little blue stroller is always there, a constant in our lives. And for this, I both love it and hate it.

I can’t sugar coat it. I get sad. There are days when we’re strolling with our little blue contraption and we run into a group of children playing in the park and I get choked up wishing I could undo her buckle and watch as she runs towards all that fun. In Paris we were taking some photos in a beautiful piazza and a mother was sitting on a bench as her two children (one at least five months younger than Annie) were running and chasing each other around the fountain. My heart broke a little bit.

Which brings me to my back. It’s not easy having an almost two-year-old who can’t walk, let alone stand on her own. If we’re out of the house, she’s either in the stroller or my arms. She can’t be in the stroller for long periods without getting cranky, like any kid. And so my nights are filled with icepacks and pleas for back rubs from my husband. My back is a bit broken too.

I could sit back and say, “Enough, it’s too much, we need to slow down.” But then I catch a glimpse of our tiny folded up stroller in the corner. And we’re off.

Annie may still be extremely dependent on her little “Blue,” for now anyway. She may not be able to run around fountains, or get on a tricycle, or climb the steps to the slide. Or walk hand-in-hand with another toddler her age. She may not be able to stand as she feeds the ducks with her dad.

BUT, oh the places and things she has seen in her little blue stroller.

In a few weeks my little girl will turn 2. The time has flown. It doesn’t feel that long ago that I was in a hospital bed with her tiny body in my lap, and I couldn’t breath because I was filled with so much worry that her diagnosis would make her life harder, sadder. Everyday since her birth has been better than the last. Her life amazes me more each day. We know she’ll walk one day and that she won’t always be so dependent on wheels. But for now, we can’t wait to see where that little blue stroller takes us next!

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About two months ago, our lives changed a bit. I no longer have to trudge a stroller everywhere we go. We still use one of course, but our girl isn’t so dependent on it. She walks with me around the block, through parks and grocery stores. I can set her down on her own two feet while I load or unload the car. Life has become a bit easier. My back doesn’t hurt quite as badly at night. Annie can get to where she wants without depending on so much help. We are so, so happy. We’ve been waiting for this and working towards this during countless therapy sessions for a long, long time. Anxious to see her gain an important part of her independence. But today, as I was driving home, I was a little sad. She’s growing up. she’s becoming more and more dependent everyday. More often than not she is walking away from me instead of towards me. When Annie was only a week old someone trying to comfort me said, “You’re so lucky, her having Down Syndrome means she’ll never leave you. My daughters left me long ago and now they have their own lives. Your Annie will never leave you.” Of course, we want her to have the life she wants and I am almost certain she will want a life of her own and will indeed one day leave us. We are working to ensure she has the opportunities to make a life of her own, a way to contribute to society that she enjoys, and the option to live independently. I know that day is a long way away. But today, I can’t help but miss that little blue stroller.

I remember the first time I heard the word “retarded.” I was nine years old. A large group of us were playing around a basketball hoop during school recess. Someone’s shot didn’t even come close and another boy we were playing with yelled out, “Wow, what are you, retarded?” I wasn’t sure what it really meant, but I knew it was mean. Everyone was laughing, except the boy the comment was aimed at. He hung his head in sadness and embarrassment.

I knew it was wrong. I knew it was mean. I didn’t immediately add it to my vocabulary. I also didn’t have the courage to stand up for what was right. I joined in on the seemingly harmless laughter.

And then middle school hit and the word started to make more of a daily appearance among my friends. By high school everything negative was “retarded.” A teacher who was “too tough.” Homework. A school dance cancelled. People we didn’t like. A coach not putting us in the game.

In college, for some reason, the word became a way to describe how inebriated one got drinking the night before. “Man, I was retarded last night.” or “He got retarded.” As if individuals with disabilities must only have the physical functioning and decision-making abilities of someone who is incredibly drunk.

Years after college the word continued to flow out of the mouths of seemingly everyone around me. My friends used it, strangers used it during causal encounters, I am ashamed to say, I used it.

Not doing anything right, was instantly “retarded.” A phrase to console a friend who did not receive the promotion they deserved, “retarded.” It seemed to be the the most adequate way to describe anything negative, messed up, or wrong. It flowed out of mouths without a second thought. As second natured as swearing when stubbing your toe.

I don’t think I would have remembered or even had a second thought about that day on the playground at recess when I was nine, if I didn’t have Annie. But when the doctors laid her tiny, limp body on my shoulder after my c-section, and I knew instantly that she had Down Syndrome, I immediately flashed back to the time I was a nine year old girl in my Catholic school uniform laughing at such a hurtful word.  I couldn’t get that memory out of my head. And it just kept spiraling, all the times I heard or used that word. Over the next few days I cried more than I ever had in my entire life before, combined. I sobbed and sobbed and broke blood vessels under  my eyes. I didn’t know the human body was capable of producing tears every minute of every hour for so many days in a row. Or capable of feeling so much hurt. These memories made me think this is what the world will think of my daughter. A joke, terrible, negative, and unwanted.

Can you even begin to imagine how terrifying that is? To even have the thought cross your mind that your new daughter, the daughter you’ve been dreaming of since you were a little girl, the daughter you carried for nine months and talked to everyday in excited anticipation of her arrival, that that very daughter is something the world could view as negative, sad,  unwanted. It was devastating.

And then to learn while researching the syndrome your child has been diagnosed with, that over 90% of prenatally diagnosed pregnancies with Down Syndrome are aborted, unwanted. To think that bringing Annie into the world was an “option” most would not have taken. Heartbreaking.

I’d be lying if I said having a child with Down Syndrome is easy. It’s not. Those first days after her birth were some of  the darkest and saddest days of my life. The hardest part is thinking that the world views your baby as “less than.” And getting over what I thought I knew about what living with Down Syndrome is like because of what society had engrained in my head. How could I have possibly known what living with Down Syndrome is like without living with it?! And it was hard letting go of the negativity that the all too often and extremely casually used word “retared” brings. These are honestly the hardest parts of having a child with Down Syndrome. And they go away, maybe not all the way, but they do.

And the hard things like therapies, and feeding issues, and extra doctors’ appointments, they really aren’t all that hard at all because of all of the love we have for Annie and all of the love she brings us.

Everyday since those first weeks of so many tears has been easier than the day before. Annie leads the way.  She is a perfect example that having Down Syndrome isn’t all those pictures I had in my head because of the hurtful way so many use the word “retarded.”

I am asking that you please help to stop the negative use of the “r-word.” I never thought I was doing any harm when I used it. But I was. It does do so much harm. And it doesn’t only hurt my daughter and other individuals with intellectual disabilities. It hurts families. It hurts mothers, and fathers, and sisters, and brothers. It hurts even those facing a prenatal diagnosis. And maybe their decisions would be easier if the way this word is used didn’t make it so scary. When Annie was born, I was scared too. But she has taught me and everyone she meets that there is absolutely nothing sad, terrible, or unwanted about having Down Syndrome.

 

21 lessons I learned from my girl with an extra chromosome.

1.  Running is not about getting out of the house on time, or trying to squeeze in extra errands in a day, or getting that promotion, or chasing dreams. Sometimes I feel like we’re chasing life itself. All of those things can wait. Running is REALLY about feeling the wind in your hair, it’s about chasing butterflies, feeling the grass between your bare toes. These are the things that are worth running for.

2. Every single morning should start with a hug, a kiss, or both.

3. Being goofy is an absolute necessity.

4. Life is too short to stay angry. I’m always amazed at how quickly Annie can bounce back from being hurt, upset, or let down. Her tantrums never last longer than a few moments, and I have been working on following her lead. Grudges are worthless, jealousy foolish, and no good can come from stewing anger. These emotions are real and I believe it is important to express them and let our children express them, but only so that forgiveness and understanding can take over and make room for what matters, LOVE.

5. Swimming is good for the soul. Watching your child experience the joys playing in the water brings is even better for the soul.

6. Even when the world seems like a terrible place filled with hate and horrible people, all you have to do is look around to realize there are really, really good people in the world too. People who don’t pass judgement, people who care not only for themselves, people that will go out of their way to make a stranger’s day. These are the people to focus your energy on. They are the ones that remind us that good always outweighs the bad.

7. All achievement, even the tiniest successes, are worth celebrating.

8. A simple and genuine smile radiates more beauty than society’s standards of beauty ever will.

9. Blood doesn’t define family. Family comes from unexpected places. And is just as important as blood.

10. Hard work and determination pay off even when things seem hopeless. Annie has had therapy at least three times a week since she was three months old. There were days after sessions that I would feel defeated, convinced she would never walk. I would cry at the park watching her disappointment in not being able to play like the other kids. She’s been walking for over a month now, and spinning and twirling and attempting to climb and run. When she was a newborn, I thought she’d never nurse, she kept trying everyday and after two months she was nursing like a pro. Annie reminds me almost everyday to never give up. She is evidence that “slow and steady” can “win the race.”

11. Dancing and music is as important a part of your daily routine as brushing your teeth.

12. If you are sitting around a table with even just one other person, it’s a party and a joyous occasion. In our house, if there are glasses in front of us, we toast, we cheers, we shout in joy. EVERY SINGLE TIME!! Always initiated by Annie.

13. There’s always time for a quick hello or a handshake or a hug. And if not, it’s worth being late for.

14. Baths aren’t just about personal hygiene, they’re meant to unwind, relax and enjoy. A good bath is not over when you are clean, but when your skin is wrinkled.

15. The most important things in life cannot be measured.

16. Never forget to stop and smell the flowers. Too often we walk right past life’s gifts.

17. Stop and acknowledge someone who looks sad, small gestures can mean a lot.

18. Even when people let you down, you shouldn’t let it change you. I have watched hundreds of times as my daughter waves or reaches out to someone only to be ignored. And though I can sense the disappointment in her eyes when someone doesn’t return the hello or accept the handshake, it never stops her from moving on to the next person.

19. Being perfect has little to do with what you’d expect. Perfection is being 100% true to yourself. It is not trying to be something you’re not. It’s allowing yourself to be a become the person you are and accepting all “flaws.”

20. Life cannot be planned, it just happens mostly out of our control. And therefore is best experienced living moment to moment.

21. Sometimes what we at one time thought were life’s greatest bumps end up being life’s most glorious gifts!

I could write a list of 21 lessons I’ve learned from Annie, 21 more times and still not be done. I want to particularly point out that most of these lessons have absolutely nothing to do with my daughter having Down Syndrome, they have more to do with the person she is. That’s what’s most important to be aware of when it comes to Down Syndrome. She is a person, Down Syndrome does not define her. It is something she has that is just a small part of our lives.

October is Down Syndrome Awareness Month. Along with all of these:

National Dyslexia Awareness Month
American Archives Month
Italian History Month (Christopher Columbus Day Parade, NYC)
Domestic Violence Awareness Month
National Book Month
National Work and Family Month
National Breast Cancer Awareness Month
National Disability Employment Awareness Month
National CyberSecurity Awareness Month
Filipino American History Month
LGBT History Month
National Bullying Prevention Month
Polish American Heritage Month
National Domestic Violence Awareness Month
Spina Bifida Awareness Month
Pregnancy/Infant Loss Awareness Month
Pastors Appreciation Month
Brachial Plexus Injury Awareness Week

That’s a lot to be aware of.

Every year I feel like there are more and more important causes added to the list. For me it seems this happens only in October, when I want to bring awareness of what life is like with my beautiful daughter with Down Syndrome. I only bring this up, because each and every one of these causes are so, so important to so many.  I know that there are other months with lists just as long. And I believe EACH of these issues are important for ALL of us to be aware of. Each of these things are as big a part of someone’s life as Annie having Down Syndrome is a part of ours. So this month I will be writing and posting and sharing to bring Down Syndrome Awareness like I have done previously during Octobers since our Annie was born. But I will also be reading posts and articles about all of  the other things we are asked to be aware of this month and all months. If I want others to become educated and aware of what is important to me so that my daughter may have a better future, I must also be willing to come to a deeper understanding of the many other issues that affect so many lives.

So this month – and all months – I ask that we pay attention. That we acknowledge the causes of many. That we focus on compassion and kindness and a better, healthier future for all. I LOVE October because it means I get to talk about my Annie, to share the joy she brings to us 365 days a year for 31 glorious days in a row. To hopefully help break some barriers she may face in her future. To change the way society views her future so that she can have the future she wants. So starting tomorrow I will be writing about Down Syndrome because it is so very important to me. But if I want real change, I must remind myself, and all of us, to at least take a look at what may not be important to us individually, but what is important to someone. That is how I believe we will bring the change we need in the world. And by sharing our girl 😉