21 Dreams for My Daughter on World Down Syndrome Day

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March 21 used to be a downer of a day for my son. It’s the day after his birthday. The party is over, the cake is half eaten and the presents are all gone. What’s to celebrate? Since the arrival of his sister Willow, plenty! That’s because March 21 is World Down Syndrome Day!

Down syndrome occurs when someone receives three copies of the 21st chromosome, instead of two. Now you understand why World Down Syndrome Day falls on 3/21. While the day’s primary intention is to spread awareness, it’s also a celebration. After all, this girl deserves to be celebrated.

Willow
Jennifer’s daughter, Willow.

If you took away Willow’s extra chromosome, Willow would not be Willow. But Down syndrome is by no means her identity. It’s just a part of her, like her hair color and eye color.

Willow’s three chromosomes affect her muscle tone and learning style, but I assure you, she will walk and she will go to school. Willow is just like our other two children. Why wouldn’t she be?

Willow and siblings
Willow and her siblings.

Sure, Down syndrome does have its challenges, most of them health-related, but what person doesn’t face challenges in life? Far too many people view Down syndrome as a negative. I’m here to tell you, Willow is nothing but a positive! According to Merriam-Webster, a negative is something “harmful or bad.” As an adjective, negative means “not hopeful or optimistic.” It also means “not wanted.” It kills me to think of my daughter as unwanted. Not only do I want Willow, I want for her. I desire, I dream for her.

In honor of World Down Syndrome Day, I’m going to share some of my dreams for Willow — 21 of them, to be exact.

#1. I dream of the day Willow walks. She’s so close. So, so close. After two and a half years of hard work, just imagine how it’ll feel to her. I imagine it’ll feel a bit like flying.

#2. I dream of the day Willow starts preschool. I hate the idea of letting go of my baby, but I am giddy at the thought of what she’ll experience and the friends she’ll make.

Willow preschool
Willow with a backpack.

#3. I dream of the day Willow learns to ride a bike. She loves watching her big sister and big brother zoom down the sidewalk. While the tricycle her physical therapist lets her use is fine for now, Willow’s got her eyes on a big girl bike. Let’s hope this doesn’t morph into a love of motorcycles when she’s older. My heart can’t take that.

#4. I dream of the day Willow will have her first dance recital. The girl has got some moves, and she’s only 2 and a half. I’d like to see her do ballet like her sister, but I’m guessing hip-hop will be her dance of choice.

Willow ballet
Willow in a tutu.

#5. I dream of the day Willow tells me the name of her best friend. Man, that person will be lucky.

#6. I dream of the day Willow sings with the worship team at church. Right now, she worships them. They’re on her stage!

#7. I dream of the day Willow swims on her own. She loves water, just like her siblings. Heck, I might even buy a backyard pool just to watch ’em all enjoy something together.

#8. I dream of the day Willow stands up to a bully. While it would be awesome to think she’ll never encounter one, I know better. That’s why I’m determined to make sure she’s prepared, armed with the knowledge that she’s loved, important and worthy.

#9. I dream of the day Willow goes to prom. I’m pretty sure my husband doesn’t share this dream.

#10. I dream of the day Willow graduates high school. Good golly, we’re going to throw a party.

#11. I dream of the day Willow tells me what she wants to do with her life. Will she go to college? We’ve already started saving.

#12. I dream of the day Willow and I can go out for coffee together. I’m sure her older sister will be there with us. If that’s the case, there won’t be much coffee drinking going on. We like to talk. We’re good at it.

#13. I dream of the day Willow introduces me to her boyfriend. My husband might not dream of this, but I promise you, he’s preparing for it.

#14. I dream of the day Willow gets her first job. I know she’ll be a hard worker. She already is.

Willow in her walker
Willow with her walker.

#15. I dream of the day Willow tells me she’s moving out. Of course, this is something I also fear. I don’t like to think of my nest empty.

#16. I dream of the day Willow gets engaged. Whoever makes it past my husband is sure to be a keeper.

Willow looks embarrassed
Willow.

#17. I dream of the day my husband walks Willow down the aisle. Excuse me while I grab a tissue.

#18. I dream of the day I visit my daughter and son-in-law. I sure hope they live close by.

#19. I dream of the day Willow cooks for me. Man, I hope her love of Kraft Mac and Cheese has fizzled by then.

Willow in a kitchen drawer
Willow in a kitchen drawer.

#20. I dream of the day Willow says, “Mom, let me do that for you.” At the moment, I cherish her dependence on me. I know it won’t last forever.

#21. I dream of the day Willow shares her dreams with me. At that moment, this list will disappear, and my sole dream will be to fulfill hers.

Happy World Down Syndrome Day, everyone! Don’t ever let a diagnosis stop you from dreaming.

Follow this journey on The Mighty Willow.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Parents Get Honest About Joys and Challenges of Raising Kids With Down Syndrome

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The Children’s Hospital of Pittsburgh of UPMC in Pennsylvania posted a video on its Facebook page featuring six families of children with Down syndrome. The families are all regulars at the hospital’s Down Syndrome Center, and they hope sharing their stories will raise awareness for World Down Syndrome Day (March 21) and give others a glimpse at their journeys.

Some parents revealed how they reacted when they first learned of their child’s diagnosis, but how their fears turned to feelings of joy.

first

“I remember crying, thinking, ‘Why me. What did I do to deserve this,” Kelly DeHart says in the clip. “And then it was a year later when I was holding him outside in the yard and he looked up and smiled at me and I thought, ‘Why me. Why am I the lucky one who gets this?’”

Some of the parents also had advice for other moms and dads who have just been given a Down syndrome diagnosis.

tori

“It’s a baby,” Tori Robinson says. “It’s still the baby you’ve been expecting, and then loving and nurturing for the past nine months. It’s still the same baby. Although you may have ideas and thoughts of what you thought your child’s life might look like, it’s going to be far better than probably what you thought.”

“We knew this was our new normal,” Tori’s husband, Troy Robinson, adds.

From finding enriching activities to dealing with mean comments, everyone weighed in on the challenges and triumphs they have experienced.

Kiana Slaughter kisses her son Evan, who has Down sydrome

“We wouldn’t allow a diagnosis to determine who he is or who he would become,” parent Kiana Slaughter says. “He’s Evan. He just happens to have an extra chromosome.”

On this World Down Syndrome Day, follow six Pittsburgh families as they embark on a journey with their child – a journey that we at the Down Syndrome Center at Children’s Hospital are honored to take with them. http://bit.ly/1Rw7vG5

Posted by Children’s Hospital of Pittsburgh of UPMC on Monday, March 21, 2016

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The Days I Didn’t See Coming for Myself and My Daughter With Down Syndrome

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I never thought this day would come.

No, not the day when they told me my baby had a heart defect. Not the day when they told us more than likely this heart defect was associated with Down syndrome. Not the day when I cried myself to sleep thinking about what life would be like for my precious baby. Not the day when we took ultrasound after ultrasound and lots of testing.

OK, maybe the day when the doctors asked us if we knew what we were doing, telling us if we were to terminate our pregnancy, we must decide before week 22. Maybe when I felt like the doctors treated my pregnancy, my sweet baby, like a piece of paper you could just throw away in the garbage. Not when I went in for a check-up, only to hear our precious baby would be born on that beautiful day. Not every day when she is beautiful, happy, and seems healthy!

No, not the day when she pulled herself to a sitting position, holding onto my thumbs her second day of life, or that day when she rolled over at 6 weeks old, or when she said her first word.

No, not that day that had to come when she had open-heart surgery. Or all those days that she had echoes and ECGs to make sure that the surgery had gone well.

Not the day when she smiled, or laughed, or cried. When she rolled to get her toys, or when she sat and scooted for the first time. When she stands in her crib by herself and says “mama” each day. When she signs and communicates so well.

Maria and family
Maria and her husband and daughters.

Maybe those days when we get weird stares, when people look at my beautiful daughter, then me, and turn away quickly and pretend they weren’t actually looking at us.

No, not those days when I get how cute and sweet my baby girl is, and how some flock to see and talk to her. I love those moments!

I never would have imagined the day that I published my book “A Princess Wish,” to help every child grow up knowing that being “different” is the new “normal.”

No, not those days when my older daughter pushes my younger daughter on the swing.  Not those beautiful days when we go for strolls, or on family bike rides.  Not those beautiful times we share together as a family.

But today, when someone asked me what side effects this “disease” of trisomy 21 caused. Yes, today, when a lab technician asked, “Don’t they tell you when you’re pregnant about trisomy 21?”

Today, when I felt sorry for another human being for being unaware of life beyond “normality.” For not having the privilege to know and love someone like my loving daughter, someone who shows me love in ways I didn’t even know were possible.

Today, I thought of the amazing words a dear friend said: “I wish every family had a loved one with Down syndrome.” How I feel like people who don’t know what life is like with my sweet baby are missing out on an angelic piece of heaven.

I’ve known how lucky I am to have been given what I believe is a unique gift from God, and to be in this “secret society” filled with love, from the moment I met my baby girl, when she looked up at me with those wondrous eyes.

On this day and every day, I wish you understanding, true love, happiness, and most of all the gift of knowing and loving an angel here on earth with Down syndrome!

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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Adopting Our Daughters With Down Syndrome Was Like Discovering a New Color

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A year ago today, we sat in a hotel room in China preparing to meet our daughter, Yuanyuan. She wasn’t Josie yet. She was Yuanyuan “Beauty beauty.” Our darling beauty, beauty magnified in a tiny Chinese baby girl body that came toddling up to our hotel door, and in a quiet voice, filled with fear and love for all the unknowns and all the lonely years softly spoke, “Ah, Ni Hao.” Little did I know that when I opened that door, I opened a new life inside our home. Little did we know the life we were missing before she entered our hotel room and our lives. She stole our hearts and love immediately. Kissing her new hot pink tutu skirt and kissing her face in the mirror over and over again, she spread joy. Sheer delight found in every moment, a bath, washing hands, greeting strangers in the elevator. Our daughter revealed a whole new life, a new world to our souls that we didn’t even know existed.

Our children in the Chinese orphanage

And then, Jieling, our precious Grace, entered the hot and sticky Chinese government affairs building, holding a nanny’s hand as she walked unsteadily across the wet tile floor, unable to see more than a few inches in front of her face. The absolute terror of the moments we first held Grace enveloped my entire being. It was as if the world spun around me and I couldn’t catch hold of anything. She stuck her sticky sucker in my mouth and I was terrified. I had no idea or knowledge of her in those moments she needed me most. She smiled and took my hands and cackled and drooled and sat stunned and I was so afraid of who I did not know or understand, but our Grace Jieling allowed us glimpses of her spirit in those first nights when she taught us to dance.

Grace gets it, she gets life, she understands. It took months to see. It took so many months of discovering her trauma under her layers of depth that no one else can seem to see. We see her depth. When others only see a happy little “Down syndrome girl,” we see her, and she is undeniably the most beautiful soul I have ever met. She is strong and brave and smarter than anyone knows. She is complicated and layered and fragile and dimpled and messy and artistic and exuding real, unabashed life.

Josie and Grace

How does one know that one is missing life before it has ever been seen? It is as if I told you that I discovered a new color; words are insufficient. You can never experience color until you see it for yourself. Josie Yuanyuan and Grace Jieling are our new colors. They are unparalleled in love, not simplicity or lack of understanding, but real, painful, burden-bearing, life-giving, genius love. They carry their scars with dignity and grace that few ever understand or see, and fewer believe. They carry the injustice and indignity and humiliation thrust upon them from the actions of others who carry ignorance and hatred and lack of compassion: others who treat our daughters as though they were nothing but a pet. Grace and Josie continue to love. They are warriors.

Our family was blessed with Josie and Grace. Blessings were poured out on us as though we could carry it all in our tiny hearts. Our hearts have been stretched and almost burst from the weight of this gift of new life and love. We are weak and broken people entrusted with giant souls.

Follow this journey on Excuse Our Mess.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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World Down Syndrome Day 2016

People describe how they are celebrating World Down Syndrome Day 2016.

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What This Movie Star Wants You to Know on World Down Syndrome Day

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David DeSanctis is a star in the film, “Where Hope Grows.” He wants to share what he’s doing for World Down Syndrome Day.


Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

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