Posts Tagged ‘alpha-fetoprotein’

Pregnancy was a rude awakening for me. No matter how many guys told me that life changes forever with a positive EPT, there’s just no teacher like life herself. The cravings were the best. I’ll never forget going out into a snowstorm because Regina was dying for Haagen-Dazs chocolate ice cream. (I think it was really one of those, “just how far would you go for me” moments.) Either way, how exactly does a guy say “no”, especially when she says it’s the baby’s favorite? Having tried unsuccessfully for four years and resigning ourselves to not having a child who would be the product of our love, we were surprised a month later. No snow drift too deep! That was fun stuff. So were the sonograms, talking to the baby every day when I came home from the lab, poking at Regina’s side and having the baby kick back. It was all magical and glorious.

The rude awakening came in people’s line of questioning, well-intentioned as it was. It started when we declined to have the alpha-fetoprotein test. Our OB, a solid Catholic physician was somewhat surprised. “Don’t you want to know if there are any abnormalities?” He wasn’t the only one. Others, when asking how the AFP results were, seemed incredulous that we would decline the test. Our answer to all was a simple “No”. AFP’s have notorious false positive results. Then what? Eat our hearts out for the remainder of the pregnancy? Fill our souls with grief and dread? Do an amniocentesis which causes spontaneous abortion in 1/200 babies?

It didn’t matter. “Handicapped babies need more love, not less,” Regina and I would tell people. “If God has a set number of handicapped children who need to enter the world, then He can send one our way.”

He did.

Right away. More on that in a moment.

At least our doctor understood. This was our baby, not something we felt we needed to accessorize our lives with, but the product of our shared love for one another. It didn’t need to be perfect. We’re not. That’s a good place to get parenting off on the right foot. Don’t burden the children with two parents vicariously reliving their lives through the child. The baby just needed to be. Not, needs to be (fill in the blank…) The baby just needed to be.

I still cannot get over the number of people who were really put off by the fact that we would welcome a handicapped child, regardless of the severity of the handicap. Paranthetically, these are the same people who accuse pro-lifers of only loving the fetus and not giving a damn about the conditions of the child (poverty, handicap, education…) once the child is born. We were called selfish. One person even said such a sentiment was ghoulish. Evidently it isn’t ghoulish for a couple married six years aborting a less-than-perfect product of their love.

The conversation would end with people saying, “As long as it’s healthy…”

Then came Joseph. We almost lost him on his due date. After emergency c-section, he was fine. Then came the moderately severe regressive autism, and a host of other neurological diagnoses, not diagnosed as such for three critical years. It wasn’t until he was turning five that we got the correct diagnosis at University of Michigan’s Autism Center and Columbia Presbyterian’s Pediatric Neurology. We changed course in both of our careers in order to have maximum time with Joseph and his two younger sisters. At age five, his speech equivalent was 2.1 years, his IQ tests, low-average to borderline. We arranged for massive amounts of speech therapy each week with one of the most gifted therapists in New York, a saint by the name of Robert Marinello. In six years, Bob has Joseph functioning very close to where he needs to be. Likewise his occupational therapist, private special ed teacher at our home, his teachers in school from pre-K to second grade, all worked wonders.

Regina and I have been diligent in doing the carry-over work ’round the clock at home. It’s been a six-year intensive team effort, and we have been graced with some exceptional therapists and a community of parent-activists for their autistic children. At age 11, Joseph still has a way to go, but I believe that he has a decent shot at a normal life. With his sisters who adore him, he’s all set.

There was a time, not too long ago, when children who were as bad off as Joseph were simply institutionalized. For some, with Down Syndrome, we’ve learned to use diagnostic medicine to identify and abort 93% of them. God help us if we find genetic markers for autism. For the time being, the autistic children are safe. So why the success in treating them over the past decade?

Not everyone is given to cynical abandonment, which is what abortion is all about. We live in an age of unprecedented enlightenment and innovation. Collectively the various therapeutic communities, in partnership with autism activist parents, have worked up an approach to autistic children that works. It’s getting better by the year. What has happened with Joseph is nothing short of miraculous, and is happening with tens of thousands of autistic children daily. The miracles are being performed by ordinary people who are putting in one more average day at the office. There’s a great lesson in that.

We don’t perfect ourselves as humans by dealing with perfect people. There are none. We perfect ourselves by the manner in which we encounter those with imperfections. As Thomas Jefferson said it best in a letter to his daughter,

“Every human being must be viewed according to what it is good for; for none of us, no, not one, is perfect; and were we to love none who had imperfections, this world would be a desert for our love.”

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