Have you heard of Karen Gaffney?
I hadn’t heard of her.
Until just last Sunday.
- She is just a little younger than me.
- She has a degree as a teacher’s aide.
- She’s a long distance swimmer.
- Actually, she’s a really amazing long distance swimmer.
- She swam The English Channel in a relay team.
- She swam the San Francisco Bay more than 16 times.
- She swam across Lake Tahoe. (DUDE. That’s 9 miles across.)
- She swam the Boston Harbor.
- She is a triathlete.
- She received an honorary doctorate degree in Humane Letters from the University of Portland.
- She heads her own philanthropic organization named after herself dedicated to championing the journey to full inclusion for people with Down syndrome and other disabilities.
Oh…and she has an extra chromosome.
I started last Sunday feeling refreshed and relaxed. Some days, aren’t always like that. Sometimes, I wake up still tired. Sometimes, I get up roaring to go with a list of things to do and my feet hit the ground running.
But last Sunday, was a little slower…maybe you can even call it a “Slow down Sunday.” It was the kind of Sunday where the kids slept in, and Nino and I woke up and started surfing Facebook and our other social media accounts while still huddled under the covers with the curtains drawn. It was a nice, slow, cool morning.
For many of you who visit the blog, you know I am a self proclaimed cry baby. I cry when I see or hear of things that make me pause, things that fill me with gratitude, and things that provide hope.
Listening to Karen Gaffney and her TedxPortland talk caused me to cry for all of the reasons I listed above.
Have you seen it?
While I was watching her video, I was taking mental notes, of quotes, of things to consider, and thoughts I wanted to share with Nino after I finished watching her talk in its entirety. I love Tedx for exactly that reason…everything I end up watching always causes me to pause, evaluate, rethink, and most of the times discuss…and there is always a dialogue that follows the sharing of the insights that I value so much!
Ok, so here are my thoughts after watching Karen.
We have this new prenatal testing that is available here in the Philippines. This prenatal testing can be seen as controversial because, like Karen said, in other countries where termination is legal, pregnancies are being terminated if a prenatal Down Syndrome diagnosis is given.
Obviously, this is not an issue here in the Philippines. Termination is illegal. However, when I was talking to my friend Mel from Hi Precision Diagnostics, I shared some concerns with her. I told her how controversial the Panorama Test can be in other countries because of the rise in termination. Since that is not our concern here, I expressed another concern.
If I was to have another child, I am grateful that The Panorama Test is available here. I would have the test. I would like to be prepared. That is my right as a mother and as a patient. For me, being armed with information allows me to prepare and set the stage for each part of my parenting journey. I do recognize that nothing can prepare you for a diagnosis of any kind…it’s what comes after the diagnosis that is given which is important. In my case, with Gellibean, I knew it when she was born. After I had recovered from her birth, I began canvassing the internet, blogs, social media, and every medical website I could to develop an understanding of what Down Syndrome was, and what it would mean for our family. I called my sister in California and asked her to buy every book that I put on my wish list in my Amazon account, and she came to Manila with a suitcase full of books only a month after my daughter was born.
In her Tedx Talk, Karen explains how her 5th grade teacher knew Down Syndrome from a completely different perspective. I have heard from other mommas of kids with DS how the diagnosis of their children shaped their process and began their journey. I am glad that I do not have a horror story when it comes to this part of my story.
The doctor who delivered my diagnosis did NOT use any inappropriate language and did not provide a grim medical outlook for my baby. She gave me the facts, and let me and my husband go through the emotions we were feeling. She left the room and came back when I was able to digest what she needed to tell me was the next step in my daughter’s care.
IT IS VITAL that the doctors who are giving the news to parents of a diagnosis do NOT give outdated information or grim statistics. In fact, I think it’s even more important to give contact information of parents who KNOW and UNDERSTAND that “completely different perspective” that Karen talks about.
Karen shares how it’s the grass roots organizations which offer comfort, information, and assistance and change to new parents and children, in much of the same way that DSAPI offered a clear direction for Nino and myself to take when we attended the Early Intervention Seminar when Gelli was just 3 months old.
“THAT COMPLETELY DIFFERENT PERSPECTIVE” is why I write. It’s why I share my life with Gellibean so openly. It’s what needs to be out there…here in Manila…here in The Philippines, where I know we are still decades behind the acceptance and education of kids with Down Syndrome, their parents, their care givers, and their teachers, than our counterparts in The United States.
My take away…it’s the perspective. It’s the stories that I want to share with all of you. It’s not all roses, and it’s definitely not easy peasy. But, there are moments that are joyous, enlightening, beautiful beyond anything I could have imagined…and it’s because of Gelli’s extra chromosome that I have been blessed to know and experience these moments.
SIMPLY BECAUSE I KNOW A DIFFERENT DOWN SYNDROME.
I guess that’s why I feel so passionately about these other projects that I’m involved in. The truth is, we still have doctors using outdated information. We still have people with negative perceptions, stereotypical views, and people who use inappropriate language. We can change that…every day just a little bit more with the organizations and the movements that we all take part in in our own home towns.
If you would like to know more about the “End the R Word” campaign that both Karen and I hold near and dear to our hearts, check out this post I wrote from last year in response to a certain personality using the “R word” on twitter. You can also click here and take the pledge online.
Another project that I’m so excited for, has to do with my cyber friend Jamie Freeman. She blogs over at www.benthroughitall.com. She has this vision…and it coincides with that different perspective that we (as parents of children with Down Syndrome) have and how a diagnosis is delivered. You see, Jamie’s doctor was amaze-balls when she delivered the news of her baby boy’s diagnosis. Jamie wrote about it here, and realized that there were so many other mommas out there who might not have had the same beautiful experience that she was gifted.
So she started this project The Down Syndrome Diary to pay it forward. The concept is this:
“The Down Syndrome Diary is a physical journal being sent from person to person around the world who loves someone, or is someone, with Down syndrome.”
And this diary has been circling the word…being filled with handwritten stories all about LOVE.
Different from the stories that outdated doctors might deliver…and different from the scary medical websites that a new parent might be reading, and yet still different from those horror stories that you might read about or have heard about from friends, which break your heart.
These stories are good. They are love. They help anyone who is reading them realize one thing…that so much changes when you change your perspective.
If you would like to know how to become involved with The Down Syndrome Diary: Philippines, check out our Facebook page and drop me a message. You too, can share your story to help change someone else’s perspective…
Thanks Karen. Thank you for sharing part of yourself. Your TedxPortland talk not only gave me plenty of things to be thankful for…it has given me a little bit of hope that maybe Gelli might be a good swimmer too?