Triple the Joy!

(Left: Juliette and Mom at Houston performance of Wicked, July 2010)

I burst into the laundry room, searching for her. I could swear I saw her run in there, but no such luck. "I'm up here, Mom," whispered the young teen's voice from above. I lifted my eyes and indeed there she was, smiling big and wide, metal braces catching light from the family room lamp. Like a monkey, she had climbed to the top of the refrigerator for sanctuary from her sister, Mackenzie. The simple act of Juliette gathering her hair into a pony tail sent Mackenzie, our autistic daughter, into a temporarily aggressive tailspin, but that's another Muddy story for another Muddy day.

Up until that moment I was anxious, checking each room in the house. Where did she go? Is she safe? I momentarily experienced--yet again--the array of emotions associated with special needs parenting, much like a Peacock expands its huge array of feathers: One for love, one for anger, one for fear, one for confusion, one for joy, one for anxiety, one for sympathy, one for overwhelming gratitude and another for if I catch her I'm gonna kick her ass. Yes, I do have those moments, and if other special needs parents don't ever think that way, well, they're better people than me.

So there she was--my poor girl!--hunched next to the two liter jugs of Diet Coke and boxes of margarita mix, legs and arms wrapped up like a pretzel.

It brought me back to about 14 years and six months ago, when I sat next to my husband in a geneticist's office, weeping and blowing my nose into a tissue. "My poor girl! How can this be possible?"

"Well, the amnio shows an additional chromosome," said the geneticist. "Sometimes these things happen."

But could it happen twice? To us? Having one child with tuberous sclerosis complex (TSC) put the fear of God in me regarding having more children. Not so for my husband, whose easygoing and optimistic nature allowed him to easily accept every word of literature and counsel that suggested our chances of having another TSC child were only 1% out of 100.

Me, on the other hand? Not so much. We both wanted more children, which is unusual with TSC families, but I've established in previous posts that us Mudds are anything but usual. We underwent MRIs and were relieved to learn we didn't have the tell-tale tumors, or "tubers," associated with TSC. This put us in the two-thirds "spontaneous mutation" category regarding Mackenzie--wish they could call it something else, like "spontaneous surprise"--clearing us for more children. Not so fast, I said, noting the lack of a DNA test to be extra-doubly-absolutely sure.

SOOOOO I dragged Chris to adoption agencies. First, an agency for domestic babies, the waiting list for which was long and the process longer. Next, an agency for international babies, including little Chinese girls, but at the time, they were not adopting babies out to families who already had children. Finally, I checked into local Foster Care babies, until Mackenzie's neurologist pointed out the obvious: "You know, Mrs. Mudd, you want the guarantee of a healthy baby. There is no such guarantee." Chris glanced at him in a knowing manner, which came as no surprise. It seemed he had been humoring me with these visits, tests, and counseling sessions until I finally came to the conclusion he had all along: "Let's have our own child."

One month later I was pregnant. Three months later, the amnio results came back, and the voice of an unnamed nurse stated "Triple X" over the phone. I immediately lost my mind, assuming the worst of the worst. I looked it up:

Triple X: About 1 in 1,000 females has an extra X chromosome (4). They usually have no physical birth defects, experience normal puberty and are fertile. Affected girls usually have normal intelligence, though many have learning problems. Because these girls are healthy and have a normal appearance, their parents often don’t know they have a chromosomal abnormality.

Learning problems. Retardation? Mental retardation--again? NO! Fast forward to the nose-blowing session at the geneticists' office.

"The cells might have multiplied by mistake, and she's fine..." she said. "...or maybe not. We could do another amnio, but the cells may multiply in the same way." I managed a slight smile, all the while thinking "What kind of a stupid idea is that?! Do another test to get the same results? "Or," she whispered, "we can take fluid from the umbilical cord, which can cause a miscarriage, but we'd know for sure then." I blinked. Miscarry and then find out she was fine all along? Just lovely. "How bad are the learning difficulties?"I asked. She answered, "Possibly some tutoring in math, maybe reading."

"This isn't TSC," I clarified. "No, it's not," she confirmed. Chris and I looked at each other. He squeezed my hand." We're talking math tutoring?" She nodded. I sat back and considered the ridiculous nature of this entire discussion. We had tuberous sclerosis hanging out there like a 200 pound gorilla, and here we were sitting in a fluorescent-lit conference room making a big whoop over math tutoring. I considered for a moment that I probably have Triple X myself, given my lifelong prickly relationship with math.

Then I asked, somewhat incredulously, "Does anyone ever terminate a pregnancy due to Triple X? I mean really--math tutoring?" She winced..."A doctor and his wife recently did. They wanted a guaranteed healthy baby." Ahhh, little grasshopper doctor and wife, I thought: There are no guarantees.

"We're keeping the baby and we won't have further testing," we said. The geneticist smiled. When our girl came into the world on December 4, 1996, the doctors wanted to take blood from her umbilical cord just to be sure there was no Triple X. Chris was against it; he didn't want her to come into the world with a label. I agreed.

Of course, I watched her like a hawk over her early months and years, waiting for Triple X to rear its head, or far worse, for TSC to come and stay. What would the signs be? Before long, I counted them:

• Immense beauty
• Walked on time
• Talked on time--uh, a bit too much
• Showed an affinity for math
• Devoured books
• Extremely social
• "Labeled" as gifted and talented
• Ambidextrous; helps when hiding on top of a refrigerator
• Easygoing (father's genes)

Houston, we have a healthy child! What came with the relief was a new road, a new path...one where life wasn't only about the honor of loving and caring for a child in special ed classes and hospitals, but regular classrooms and parties as well. While one experience has changed me forever, so has the other. Like a Peacock with all those feathers, the array of emotions is colorful, riveting and sometimes overwhelming...but in the end, so beautiful. Of course, Juliette does have her handicaps. These are the signs:

• Total slob; can't see bedroom floor
• Borrows my things without asking
• Sucks the disposable income out our ears
• Thinks she's smarter than me
• Scatter-brained (father's genes)

I think I can live with this, though.

While some may think this post has an anti-abortion sentiment, that is not my message. It's simply about surprises in life--both good and bad--intertwining to create a journey that is richer than anything I could ever have imagined.

As I looked up to the top of the refrigerator that day, I laughed along with my daughter. Not only is she a healthy kid, she is compassionate toward her older sister, realizing that a positive attitude is everything, even if you have to occasionally run for your life.

So to Juliette, I offer this belated birthday post: Thank you for entering my world, sweet child, and changing it forever.

Next time you're on top of the fridge, though, please give it a dusting.