Last week, New York Times blogger Lisa Belkin posed the question, “Should Down syndrome be cured?”

I posted a link to her piece, but I didn’t fire off a response. I needed to give the whole thing some thought, I figured. This is fundamental. 

The truth is that I will think about this for my entire life and never have the right answer.

But as it turns out (and as the ever-wise starrlife observed), Belkin wasn’t being fair when she raised the question.

Belkin was referring to research at Stanford University into drugs designed to boost memory in people with Down syndrome.

I know about that research — or, at least, research related to it; I actually visited Stanford a few years ago, and met with one of the doctors doing it. He was very nice (I’ve written about this a bit before on GIAPH) — showed me a power point presentation, lowered my expectations significantly, then asked if I knew anyone with a lot of money who would like to donate to his research efforts.

After I spoke with the doctor, he let me tour one of the labs (I was disappointed that they wouldn’t let me see the mice they’d managed to “give” Down syndrome, but I guess with PETA around you can never be too careful) and another very nice man introduced me around to the researchers. I showed them pictures of Sophie, who was then about 2, and the very nice man led me to the window and pointed out a row of trees, just outside the lab.

“Those are ginko biloba trees,” he said. “If you eat the fruit, it can boost your memory. Some of the parents of kids with Down syndrome pick the fruit and give it to their kids.”

I got the message loud and clear. No super-brain drugs for Sophie — no time soon, anyway.

OK.

I left the lab and stood blinking in the fall sun, then strained on my tiptoes to pick a piece of ginko biloba fruit, which I wrapped in a Kleenex and brought home. It’s sitting on the windowsill in my office, next to a bottle of “pearls of wisdom” my friend Christa gave me for Christmas two years ago.

With all due respect to a far more successful journalist, Lisa Belkin started the wrong discussion. But really, I can’t imagine that there would be much debate over whether it’s a good idea to give people with Down syndrome memory-boosting drugs. It’s not like it would cure a genetic condition or, I’d bet, even fundamentally change a personality. It would just make life a little easier. And it’s not even like these drugs are available now; the recent study Belkin wrote about confirms that.

What a ho-hum discussion.

I’m no scientist, but I think I can safely say that there will never be a cure for Down syndrome — not once a person is born. Yes, you can have an abortion and avoid ever having a kid with Down syndrome. There’s your “cure”.

And I’m not saying you should or shouldn’t do that, though I’m beyond damn glad I didn’t. I truly wish I believed in God, so that every day, I could pray to him my thanks that I have Sophie.

And therein lies the rub. I don’t want Sophie to have Down syndrome, and it’s not (not really, anyway — not only, at least) because of her intellectual disability.

The truth is that the ginko biloba — and all it implies — is the least of my worries, as a parent of a child with Down syndrome. I learned that when Sophie was 5 days old and the doctor announced she had a hole in her heart. She’s had open heart surgery twice — so far.

I catch myself staring at Sophie a lot. Less and less, it’s about her “funny” features or funnier behaviors. It’s about leukemia. I won’t look at the statistics, I don’t want to know the exact figures, but I do know that people with Down syndrome have a greater chance of developing leukemia. Recently, I learned it’s the same for diabetes. And a lot of other physical maladies I don’t want to know about.

It’s not that I don’t want a kid with intellectual disabilities (although trust me, it took me a long time to be able to say that honestly, and there are days when it’s still a bit of a lie). It’s that I want her to be around, and healthy. I don’t want her to suffer. I don’t want her bald in a hospital bed. I don’t want her to die.

It’s a lot easier to have an intellectual debate over how people with cognitive challenges fit into our society than it is to have the heart-wrenching discussion about the realities of my kid’s physical health.

A pill to “cure” Sophie’s heart from springing another leak? A vaccination to keep her from getting cancer? Bring it on, people. Bring it on.

Yesterday morning, I saw a snowman.

Outside my favorite coffee shop in Tempe, just sitting there on the sidewalk. Melting. It was maybe a little taller than Sophie — nothing fancy, with twig arms, a carrot nose and coal eyes.

The temperature was predicted to hit 115 yesterday, but someone woke up and got some ground ice and built a snowman. You don’t see a lot of whimsy in metropolitan Phoenix, particularly in the summer, so I took note. And a photo.

A few hours later, I strapped Sophie into her car seat and we headed off for her IQ test. I braced myself, feeling repelled by the idea of meeting the psychologist others have dubbed Dr. Death, let alone the idea that I’d actually scheduled an appointment with her, with the hope that Sophie would fail an IQ test and keep her state services. The law says my kid needs one of four diagnoses: autism, epilepsy, cerebal palsy or mental retardation. Having Down syndrome — which she does have — isn’t enough on its own.

Go figure, I really liked the doctor. We hugged at the end. And I didn’t just like her because she seemed like she wanted to help Sophie, which she did. She seemed knowledgable and reputable (remember, my lauded pediatrician did recommend her long after I’d heard from others of her shady reputation) and, as so often happens in this small town of a metropolis, she’s worked closely with several medical professionals I know and trust.

I liked her, even though she told me my kid is retarded. And not just retarded. Really retarded. After answering questions for half an hour myself, then leaving Sophie alone with her for an hour, I returned to her small office and perched on the couch, expecting the doctor to tell me she’d have results in a couple weeks.

Oh no. She had numbers now. As the doctor shuffled her paperwork, I thought of Michael Berube. He’s an amazing guy, a humanities professor who studies the role of the disabled in our society. His son has Down syndrome, and Berube wrote a book about him, “Life as We Know It,” when Jamie was about 4.

Berube came to Arizona State to speak in the spring of 2008, and I went to see him. This was right around the time the pre-school told me they wanted to test Sophie’s IQ for the first time, and I raised my hand and asked the professor about it. They think she’s not mentally retarded, I told him. Could that be possible? 

Berube nodded. He knew what I was talking about. He didn’t answer the question I asked; he answered the question I should have asked.

“You need to make sure her IQ doesn’t go over 69,” he told me. He wasn’t the last to say it. The cut off for mental retardation on an IQ test (and I know, I know, I know, many people don’t consider them valid — me either, particularly after the last year and a half) is 70.

And so I sat on that couch and thought, “69, 69, 69, 69….” until the doctor derailed my train of thought.

“Sophie’s IQ is 55,” she said. That was according to her one-on-one testing. The result of the questions I answered (and trust me, I may not have bragged, but I didn’t lie) was 57.

The final report won’t be done for a week, but there’s the number: 55.

A year ago, I sat on a couch in a different psychologist’s office, thinking, “69, 69, 69″ and heard, “Eighty-three.” That was 2 points higher than the school’s testing.

(Funny, I cried when I heard 83. Yesterday, I was dry-eyed. Maybe I’m in shock.)

Maybe it’s because Sophie’s 6 now. This test was different. Maybe it’s because the psychologist who gave her the 83 last year spent the entire summer getting to know Sophie and us, and administering the test in managable pieces, admitting she asked some questions several times. We were done yesterday in well under 3 hours. Maybe it’s because Dr. Death rigs the test. Part of me wants to think that. (“WTF? FIFTY FIVE?!!!!”)

In any case, I’m not complaining. I swore I wouldn’t. “This is what you wanted, right?” more than one person asked yesterday, when told of the results.

Yes, sure, of course. Of course not. No.

You’ll love this part. The psychologist gave me the results (and a lecture about how Sophie clearly has ADHD, which I’ve heard before) and then she apologized.

“You probably won’t be able to keep her services with this number,” she said. “I think she needs to qualify as moderately mentally retarded, and this will likely only put her in the mild category.”

Sophie and I said goodbye to the doctor and headed off in search of chocolate ice cream. I strapped her into the car seat and looked into her eyes. “I love you, Sophie!” I told her. “You know you’re a smart girl, don’t you?”

And then my daughter did something I’ve never seen her do. She looked at me wordlessly, opened her mouth, and let some drool spill out onto her chin.

Really.

I wiped it off, kissed her and got in the car. We never did get chocolate ice cream, only because Sophie fell asleep immediately. I drove around for an hour and a half, making calls to my husband Ray, my mom, Sophie’s kindergarten teacher, Ms. X.

I told Ms. X about the drool. She hooted. “Oh yeah, I’ve seen her do that before, she was sending you a message!” she said.

Sophie’s no dummy. I do think she’ll get to keep her services (her support coordinator told me 69, nothing about moderate vs. mild) and last night I emailed the three wise women (physical therapist, occupational therapist and speech therapist, all of whom have been with Sophie for years) to tell them about the test.

This morning I had a message back from Sydney, the speech pathologist.

55…85…105… when it comes to Sophie, it’s all the same to me.

Right or wrong, [the doctor] is giving you a snapshot of performance during a very short period of time in which a child is put in an unfamiliar environment with an unfamiliar adult and asked to comply.  My guess is that if Sophie decided she didn’t want to do a task, she convincingly said, “I can’t,” or “I’m very tired.”  During administration of select standardized tests, this counts as an incorrect answer.  There is no game playing or adult manipulation allowed.  If I assumed Sophie was incapable of learning a new task every time she told me, “I’m so tired,” I would have thrown in the towel long ago.

I am not bashing [the doctor].  I am not negating the number 55.  This is her system and her style of testing and she has earned respect for this.  She is also adamant about children getting services which I very much appreciate about her.  She wants the best for children and parents. 

Now…in my perfect world (and in the perfect world of many psychologists I have worked with), a true IQ would be the result of testing completed over multiple sessions in familiar environments with input from parents, speech pathologist, occupational therapist, physical therapists.  It is difficult if not impossible to pull a child apart and look at one specific area (ex. cognitive functioning) without considering the influence language, fine motor, gross motor…have on it.  If a child is asked to manipulate shapes to make a certain pattern, and is unable to do so…is it because of cognitive level or could it be that the child’s fine motor level doesn’t allow for completion, or could it be that the child’s visual level doesn’t allow for completion, or could it be that receptive language level doesn’t allow for completion.  I know you get this.

 I‘ll be seeing Sophie later on today and we are working on high level verbal analogies.  Was that on her IQ test???

Can you see why I’m so desperate to keep these women in Sophie’s life?

Last night, we went swimming at my parents’ house and I told my mom and the girls about the snowman I’d seen in the morning. We sang “Frosty the Snowman” then several other Christmas songs, sweating in the lukewarm pool water.

By the time we headed home it was after 9. On the way, I swung the car into the parking lot of my favorite coffee shop, and hopped out to take a look at the spot where the snowman had been. Maybe part of me thought it would still be there, even though I knew there was no way. Annabelle crawled out of the car behind me.

The twigs, coal and carrot were sitting in a puddle. I looked closely, then leaned over to feel the ground. It was cold. Incredibly, there was just a bit of ice on the ground, even though the temperature did, in fact, reach 115 yesterday.

 A little bit of someone’s dream was still there.