Thursday, April 23, 2009

More Positive Exposure

At the Positive Exposure lecture, there was one person in the audience I was particularly thrilled to see: my geneticist. After receiving my prenatal diagnosis, we met with this woman to discuss Down syndrome, hydrocephalus and the other conditions the doctors suspected at that time. She didn't tell us much we didn't already know but that was helpful too as she managed to confirm the accuracy of some of the info we'd read on the internet. And you know how that is. You start googling a medical condition and get the wits scared out of you.

She gave us a phone number where we could still get an abortion performed 5 1/2 months into the pregnancy and that was that. No followup from her until the Gifts book was released. I had a book signing at a local Barnes and Noble and invited the genetics counselor as well as other doctors and specialists we had seen. She informed me by phone that she could not attend but would buy the book and was excited to read it. I gave her permission at that time to give my name and number out to any patients she saw in the future with a diagnosis of Trisomy 21. I had not heard from her since.

But there she was in the audience of this presentation celebrating the beauty of genetic differences. It was fantastic to know she was interested. And she wasn't only interested in the photographer's slide show. She was extremely interested in me and Caden. Every time I looked around, she was watching us, smiling. I wondered how often she saw her clients like this, 4 years after their worlds were forever altered. Could she tell that Caden is the best thing that ever happened to me? Could she see how madly in love with him I am? Could she see that he is far from suffering and is smart, funny, extremely sociable and living a big life? As if to emphasis that point, about halfway in to the talk Caden inexplicably turned around and waved to this curious stranger with a huge happy grin.

At the end of the lecture, Caden gave the photographer a hug which included his trademark patting on the back. Over my shoulder, I heard "I am so jealous!" It was the geneticist. I tried to get Caden to hug her too but he was already ascending the stairs out of the auditorium. When we reached the top and crossed over to the exit, I looked back down at the remaining crowd. She was still there, still watching us, still smiling.


Lisa said...

What a great story...

Sharon said...

I wish that all geneticists, ob's, doctors would get to meet kids, adults and families of people with Ds. I went to a presentation by Dr. Brian Skotko recently and he said he has a teenager or adult with Ds speak to each incoming class of Harvard Medical School....they talk about their lives, their interests, etc and have made lasting impressions on the soon to be doctors....just as Caden did with this geneticist.

BR said...

Hi Jessica-

I came across this blog when doing some DS/Trisomy 21 research for a friend who recently gave birth to a baby with DS and VSD a few weeks ago. I have not been through what you have and have no idea what it is like. I am a mother of a 6 year old however. I just couldn't leave the site without telling you that your son is AMAZING and the cutest thing I have EVER see! If there were more people like you who would embrace the differences in people and life, the world would be a much better place! Please continue with your website and stories as I am sure they are motivational for in your situation and even for those who aren't like myself. I can't say much for your love of UVA as I went to Virginia Tech lol but you are the type of person who makes the world a better place! If we lived in your neighborhood, we would hope that we would be lucky enough to have a play date with Caden:)

PS: Sorry I left this as a comment, I didn't see a contact section or e-mail address!

BR in Northern VA

Jessica said...

BR, I'm glad you mentioned that my email was no longer up. I used to have it listed on the sidebar but the box mysteriously disappeared. I'm impressed that you are doing research for your friend. That's touching. Please let her know that she can contact me if she'd like (or you as well) at:
Especially tell her congratulations! She may not know it yet but she has been given an amazing gift. I once heard that getting the diagnosis was like having your heart ripped out. But then your child hands it back to you triple the size and gold-plated. I don't know what health issues the baby may be facing, I'm assuming a surgery with the VSD. I hope all goes well. Those initial hurdles are the toughest. Thanks for your kind words and I'm glad you found my blog! Oh, I must say VA Tech stole one of my younger sisters. After all those years of brainwashing to have her become a 'Hoo, she had to pick the Hokies?! It was a deep wound.

BR in VA said...

Hi Jessica-

Thanks for your response! I will pass the information along to her! Yes, they had 1 surgery to insert a shunt and are still kind of touch and go with the oxygen levels etc so once they get through the VSD hurdles (at least 1 more big surgery soon!), they can actually start enjoying their little boy/very special gift! They are definitely positive about the future like yourself and see the DS/Trisomy 21 as a way he is special versus a burden and it is nice to see all the available resources and support online and just in general! My husband went to UVA so even though my daughter is only 6, we are already having the discussion about where she will go, he is set on UVA of course and his whole family went there so I may have a tough time convincing him to even let her apply to VT lol! Keep up the positive influence on everyone who has the pleasure of stopping by your page! Thanks again for being so open about your life and Caden's situation! So encouraging! I will definitely keep on reading!

BR in VA

BR said...

Hi Jessica-

I came across this poem recently, thought you might appreciate it! I thought it was so cute!

Welcome to Holland!!

Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But ... if you spend your life mourning the fact that you didn't get to Italy, you many never be free to enjoy the very special, the very lovely things ... about Holland.

BR in Northern VA

Jessica said...

Thank you for thinking of me. I have read this poem before and have not found another that strikes to the heart like this one does. I hope your friend can also connect with it. By the way, the author worked for Sesame Street and her son was the first child with DS to ever be featured on the show. She is quite the barrier-breaker! Good to hear from you and thanks again for thinking of me!