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.