I once called a stranger and begged her to adopt my newborn. That may have been rock bottom; it’s hard to think you can fall any lower when it comes to handling your child’s needs. I didn’t know how to accept the news that my daughter had Down syndrome. So I didn’t.
In 2004, I was wheeled out of the hospital with a tiny baby in my arms and the weight of an extra chromosome on my shoulders. And not so much as a pamphlet in my hand to help me sort through the crushing avalanche of questions and doubt.
I spent weeks mourning the child I’d dreamed of during my pregnancy (and thought I didn’t get). My original expectations were replaced with a long list of questions, doubts and fears.It took awhile for the logical part of my brain to overcome the emotional part, to make the decision to do whatever I needed to do.
None of the resources I turned to – my medical textbooks, parent resource books, websites, Down syndrome organizations’ information material – really answered the questions that I, as a parent, cared most about.
What type of future would my daughter have?
Would she potty train?
Would she ever have a friend?
Would she learn to drive?
Would she get married?
I kept getting the same information, but nothing to answer my most desperate question: How do I get through this? There was no one to turn to, no one to give me hope. I was angry, but resolved too. I refused to believe what I was reading and hearing about Ella’s future. I needed a friend: to talk to, cry with, and to help me find answers. Even with my medical background, with family support and so many other resources at hand, I was alone in this, feeling my way carefully – sometimes painfully and sometimes blindly – through so much misinformation and stereotypes.
I realized other parents of children with Down syndrome must experience the same helplessness. Having a new baby is overwhelming and exhausting enough. Then add a diagnosis, hours of therapy a week, and endless time arming yourself with the best possible information. I spent so much of my time as a new mom trying to piece everything together, that I missed out, really, on just being a new mom. I barely remember Ella those first few months. I only remember what I was going through. I don’t recall one happy thought about having a new baby.
No parent should feel like the birth of their child means the death of their dreams for a happy, healthy and bright future. If I’d known then what I know now, I wouldn’t have wasted those precious months barely surviving, instead of thriving.
That’s my goal – to share my knowledge with other families affected by Down syndrome, to create a place for them to interact, to have a voice, to learn from each other – to go beyond just surviving with Down syndrome, to thriving. That’s where the Thrival tribe comes in.
At www.juliakinder.com/dsThrival, you can do all of that, and more. Become a Thrivalist today and join our movement to show the world the UPside of Down syndrome. Today’s web launch is only the starting point. Our Thrival tribe will grow with new online resources – like a virtual pin-board to showcase our tribe members’ location, and a place to celebrate the birth of babies born with Down syndrome – additional educational products, and more ways to interact with other parents and extended family and friends.
Here’s what you can do Right Now to help us change how society views Down syndrome:
JOIN THE THRIVAL TRIBE
You’ll get updates and helpful tips on thriving with Down syndrome.
SHARE THE UPSIDE OF DOWN
Help educate others by sharing www.juliakinder.com/dsthrival with friends and family, linking to the site, and posting on Facebook and Twitter. You can also download a free Upside of Down flier to print out and distribute or send by email to friends, family, your local schools or churches.
CHANGE THE CONVERSATION
The Thrival Tribe is all about shifting how people talk about, think about and view Down syndrome. Support the cause with an Upside of Down t-shirt or wrist band, available at the www.juliakinder.com.
On the first day of Christmas,
my doctor sent to me
A urinal cause I don’t have time to pee.
On the second day of Christmas,
I made 100 home-made bows:
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.
On the third day of Christmas,
I realized excess caffeine will dry you out:
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.
On the fourth day of Christmas,
too much caroling made me cough:
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.
On the fifth day of Christmas, I think I caught the flu:
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.
On the sixth day of Christmas,
my fever reached 104:
Six-hundred and fifty milligrams Tylenol every 4 hours,
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.
On the seventh day of Christmas,
I did my grocery shopping at Wal-Mart:
Seven-day supply of Xanax,
Six-hundred and fifty milligrams Tylenol every 4 hours,
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.
On the eighth day of Christmas,
my doctor recommended to me
Eight maids to help me catch up,
Seven-day supply of Xanax,
Six-hundred and fifty milligrams Tylenol every 4 hours,
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.
On the ninth day of Christmas,
I strained my back when I dropped the frozen turkey:
N0 ladies dancing- instead gotta go for Physical Therapy,
Eight maids to help me catch up,
Seven-day supply of Xanax,
Six-hundred and fifty milligrams Tylenol every 4 hours,
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.
On the tenth day of Christmas,
I have stopped sleeping:
Ten PM dose of Lunesta,
N0 ladies dancing- instead gotta go for Physical Therapy,
Eight maids to help me catch up,
Seven-day supply of Xanax,
Six-hundred and fifty milligrams Tylenol every 4 hours,
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.
On the eleventh day of Christmas,
my doctor had to refer me:
Eleven sessions of therapy,
Ten PM dose of Lunesta,
N0 ladies dancing- instead gotta go for Physical Therapy,
Eight maids to help me catch up,
Seven-day supply of Xanax,
Six-hundred and fifty milligrams Tylenol every 4 hours,
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.
On the twelfth day of Christmas,
my doctor sent to me a
Twelve-hundred dollar bill,
Eleven sessions of therapy,
Ten PM dose of Lunesta,
N0 ladies dancing- instead gotta go for Physical Therapy,
Eight maids to help me catch up,
Seven-day supply of Xanax,
Six-hundred and fifty milligrams Tylenol every 4 hours,
Five days of Tamiflu,
Four ounces of cherry cough syrup,
Three bags of IV fluids,
Two wrist splints for carpal tunnel,
And a urinal cause I don’t have time to pee.
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Kalencom Potette<>.Welcome to my new website and store! It is exciting to have more avenues for sharing tips on Getting Healthy Right Now! Together, we will find fun and easy ways to get fit, have more energy, reduce stress, give our kids every opportunity possible, and make time each day for the things we love. I can’t wait to get started!
But first, a big thank you to:
My Family
The twins saw cows for the first time last night at the fair and got to show off their “mooing” abilities. I missed it because I was working. I promise not to miss any more Right Nows. Thanks for your patience and understanding while I start my new business.
BOLD Marketing
Dana, Erica, Katie, Callie, and all those new people around the ping-pong table: you have brought to life Enk the Duck and the Right Now concept. My designs are fabulous and everything I imagined. Let’s get that party scheduled to celebrate!
Photography by Carrie
My house, and now my website, are filled with amazing photos of my kids. Your creativity inspires me. Thanks for putting my 1 week old twins in an old suitcase! And thanks for showing the world the beauty of children with Down syndrome.
My Patients
You want to be healthy, loose weight, stop smoking and taking medicine; you want to feel great again. Thanks for sharing your personal struggles so that I can find ways to help you achieve your goals.
My Friends
You know who you are: we’ve shared dreams, triumphs, set-backs, hopes, fears, and wine. I’m sure the wine was your favorite part.
Mary, Teacher and Maker of Bibs
We’ll have children everywhere filling their brains with knowledge at mealtime!
Brothers All Natural
We share a vision of helping people get healthy. Here’s to Healthy Snacking and fighting the obesity epidemic together!
Contigo
I count on Hydration and Caffeination to keep me going each day! Thanks for making a product I can take along each day to provide both!
Website Followers
Thanks for following! Now go do 20 sit-ups…Right Now!