"It's Down Syndrome. I'm sorry."

They said "Down Syndrome" like it was a BAD thing, and who was I to know better than the professionals?

I was 35 and pregnant, and before I knew it, I was on this prenatal testing train that started with a routine blood test in the doctor's office and ended with having to make a decision about whether or not I would pre-empt my little Giblet's life.

Oh, it was abundantly obvious what choice the doctors thought I should make. It wasn't like they kept their opinions a secret! "The prognosis isn't good, he probably won't live long enough to be born." And... "At least we caught it in time."

Or my favorite, which came from the ultrasound radiologist: "You know, educated women are more likely to get a therapeutic abortion in your situation."

(Therapeutic? For whom? I'm pretty sure the Giblet isn't going to find it therapeutic.)

Now, before you go there, girlfriend, believe me: I'm pretty militantly pro-choice. I would NEVER support laws or policies that take a woman's choice away from her. But what was going on in my life didn't feel like a choice! It felt like a set of ORDERS that only STUPID people disobeyed...

• Step 1: Get prenatal screening for Down Syndrome as part of your routine care.
• Step 2: Get amniocentesis or chorionic villi sampling (don't worry yourself about that 1 in 100 risk of miscarriage!) if those test results come back fishy.
• Step 3: Find out before 20 weeks if your Giblet is "defective" so you can schedule a therapeutic abortion.

It was a terrifying time for me, as it might be for you, too - even if you aren't pregnant yet but are just planning to become pregnant and are in the category of "advanced maternal age" like me; meaning age 35 and older.

I went home that day and got on the Internet to look for information about Down Syndrome, and the heart defect which gave him away in the level 2 ultrasound...

...and discovered the ob/gyn wasn't exactly telling me the truth about the prognosis. (The Giblet wasn't in any immediate danger, and his heart defect was quite fixable.)

That was the day I decided to KEEP my Giblet, damn the torpedoes, and also the day I stopped automatically believing everything my ob/gyn said!

If I'd known then what I know now...

I started my "Down Syndrome pregnancy" journey in 2003, and now the Giblet (We named him Gavin!) is in kindergarten! He's currently obsessed with dinosaurs, Dr. Seuss, and every product Leap Frog ever made.

He's studious and loves learning, like the rest of his family. He's beautiful - I think so, anyway; that's him in the pictures up at the top of the page. (You'll see lots of his pictures here, there and everywhere.)

He's graceful and athletic - you can see him up there on the right, making good use of his enhanced Down Syndrome-ish powers of flexibility to achieve maximum splash in that puddle!

Oh, he's had some challenges, sure. He had a congenital heart defect (now fixed). He had AML leukemia (now fixed). We see a lot more of medical personnel than we otherwise would have; not because he gets sick very often, but because we have to watch out for more things. But most of what's "Gavin" could never have been learned from a prenatal test. Most of what's "Gavin" is purely joyful, and our lives would be much smaller without him.

Along the way, I've learned a lot of stuff that I wish I'd known all along, because if I HAD known, I wouldn't have been so scared. I would have enjoyed the journey a lot more. I would have finished making the baby blanket I started before his diagnosis.

So I made this website for YOU, and I determined to put in everything I would have wanted to know at the time. Maybe you can contact me and let me know how I'm doing - or if there's anything else you'd like me to add. Maybe you've got something you'd like to add yourself.

There is a whole new world for people with Down Syndrome and their families now, and it's because of people like you and me. Over the years, parents of children with Down Syndrome have been taking matters into our own hands, one generation after another - and have demanded that medical professionals, educators, and policymakers begin to treat our Giblets like everyone else. Like citizens, not defects. We're making a lot of progress!

So...do you have the soul an adventurer, looking for an up-to-date tour guide to Holland - just in case you might want to visit? Come on in. You're in good company.

- Lynne, Gavin's mom

P.S.: Oh, by the way...references to "Holland" are sort of an insider story among parents of children with Down Syndrome. You can read the original story, written by Emily Perl Kingsley, here.

Someday,
after mastering the winds, the waves, the tides and gravitation
we shall harness for God the energies of love;
and then, for a second time in the history of the world,
man will have discovered fire.
- Pierre Teilhard de Chardin