Sunday, June 24, 2007

And all their fears wash away ...

"I have bad news and I have worse news," the man on the telephone said.

It was the furniture store calling to tell me that the dresser I'd bought for Thing 2 was on backorder until August. The worse news, he said, was the bookshelf I'd ordered for Ittybit was discontinued and it wouldn't be coming at all.

"That's it? That's not a big deal," I said calmly. It was the morning of the day Thing 2 would be born, and I was trying to rest. With all the angst and worry over last-minute potential health issues for the new baby -- a enlarged kidney discovered in a 36-week ultrasound, and a forewarning that such anomalies are considered markers for Down syndrome -- it was obvious to me, the lack of furniture doesn't rise to the level of "bad" anything. (Unless of course the dresser or bookcase falls on you, and then THAT WOULD be bad.)

I was nervous -- that was true -- but I was also ready. After opening up and telling people about our worries, I got a crash course in kindness. People from all over sent word that they were praying for us and thinking about us and about Thing 2.

Then there was something I didn't expect to happen: A reader sent me an article from the New York Times that looked into the change in our communities since the medicine has made leaps and bounds in prenatal detection of chromosomal abnormalities such as Trisomy 21 or Down syndrome.

The article claimed that roughly 90 percent of mothers who are given this information early on abort the fetus. It makes sense, but it also does something else. It changes the face of our society. With fewer children born with Down syndrome, there will likely be implications such as fewer services available to those individuals as well as a shrinking social circle.

I'm not sure which made me more melancholy: that we could have a special needs child in a few hours or that this child's circle of support would be shrinking from year to year.

It's not that I'd want my child to have difficulties, no parent does. But I know that none of us gets through this life without disappointments, situations we can't control and hardships. Down syndrome, after all, isn't the worst diagnosis one could have. There are hardships, for sure, but ultimately it just means a different kind of life.

We all make decisions for ourselves and our families based on so many different little bits of information. So yes, I was nervous. I was worried. I wanted the best possible outcome, like all parents do.

In the childbirth center, my doctor prepared me for everything that could happen: The kidlet could be perfectly fine and join us directly in the recovery room or he might have some problems that would require him to be sent to the Neonatal Intensive Care Unit; there was also the possibility that we still wouldn't have all the answers we wanted to have when he was born, but that no one would keep any information from me.

The important thing was that no matter what happened, he was going to be getting the best care and that ultimately he would be happy and he would be loved.

I took a deep breath and let it out. No turning back now.

And when the good doctors brought him screaming and kicking into the world, the high-risk pediatrician checked him over and pronounced him healthy and definitely "NOT" a Down syndrome baby.

We had all the assurances we needed.

And then our red-faced boy peed on the doc's stethoscope. His father was so proud.

The naming contest will continue through the month of June. Please continue to send your entries to sconnally@troyrecord.com or mail it to The Record, 501 Broadway, Troy, NY 12180.

Sunday, June 17, 2007

Smiling all the while

I am a worrier.

Some people call me a hypochondriac, but I just think I’m extremely sensitive to minute physical changes.

Of course, you get to a certain point in all things — especially pregnancy — when you let your guard down and you begin to relax. The inevitable will happen, ready or not.

Having everybody constantly telling you "it won't be long now," for some has a universally calming effect – like Xanax. For folks like me, though, it just sets off alarms.

As I left the house for my 36-week doctor’s appointment, complete with a special womb-with-a-view monitoring of Thing 2, I had that icky feeling. That creepy, crawly, I-hate-the-late-term-appointments feeling: Something always goes wrong.

It was a familiar routine: I waited in the office for the ultrasound, reading Martha Stewart's instructions on making your own heart-shaped candy box. (This will be helpful, I think, if I ever lose my mind or decide to drive myself crazy next Valentine’s Day.)

I chat with the ultrasound technician as she scans around taking measurements. She notes that Thing 2 has moved into a head-down position, and shares my confusion over why anyone cares since the kid is going to be hatched anyway. She measures the head, legs and other body parts, which I think look more like pockets of clouds than parts of kid.

"He's really taking up every spare space there is," she laughs.

She takes a fuzzy picture of his face, and rips it from the machine handing it to me saying everything looks good. I go back to the lobby to wait for her report, which I carry to the next doctor upstairs.

I peek at the contents of my file while I climb three flights. Numbers, dates, ratios ... it seems as if I'm trying to read assembly instructions in Greek.

I’ve been through this before. There is nothing out of the ordinary.
When my name is called I go into the exam room. The doctor shakes my hand and introduces herself. We’ve not met yet. She smiles and looks at the chart.

"Well it looks like there's a dilation of one of the baby's kidneys. What we tend to do in this instance is have the baby looked at by a neonatologist after it's born to determine a course of action. It's difficult to say at this point what the significance is. ... surgery could be warranted or it maybe something that will resolve itself. ... "

Blink. Blink. Blink.

"What? What? Surgery? Watchful waiting? What?"

Her whole demeanor changed when she realized this was all new to me.

"Have you had all normal ultrasounds before?"

"Yes. Normal. Every single one has been normal."

I left the office with my head spinning. The only thing I could hold onto was the words "try not to worry" and some vague recollection of a friend whose children had been diagnosed similarly.

"This is not the end of the world. This is not the worst news you could get," I tell myself as I dodge cars and ignore traffic safety as I head back to the office.

I do the exact opposite of what one should do when I get back to my desk. I consult Dr. Google to find out what this means. I select university medical Web site information and read summaries. I come up with a 14-letter name for the condition and perform a Web search on that.

Then I call on my friends to see what they have to say.
Mostly they tell me I should be prepared for years of visits and tests with a specialist. Be ready for the smiling faces of people telling you scary things. Be ready to ask questions but try not to worry.

"Ninety percent of the time it's no big deal, but doctors follow everybody. They have to cover their butts," said a mom of a 2 ½ year old with the condition, who has gotten by with no intervention as yet. "The hardest part," she explained, "is when the doctors, who see this all the time, tell you nonchalantly, 'this could be nothing, it could lead to kidney failure or it could require surgery'."

Or, in my case, having "you realize this is a marker for Down syndrome?" thrown in for good measure.

It's never easy to convey potentially bad news, I realize, but I wish they'd take a moment to notice I am just a mom whose emotions are all intertwined with the child attached to a wonky kidney.

Sunday, June 10, 2007

What's in your Mouskatoolbox?

If you have the misfortune of suffering through Playhouse Disney’s "Mickey Mouse Clubhouse" on Sunday mornings (like I do) you already know that when our mouse hero has a dilemma he needs only the shrill voice of a toddler yelling "Oh Toodles!" to make a special toolbox appear and the troubles disappear.

Inside this computer-animated helpdesk are usually three Mouskatools and a Mystery Mouskatool that, when called upon in the correct order, will solve all of the show's plot predicaments.

Of course if these were real-life situations the tools would be useless, but the large-eyed, big-headed small fries staring into the black hole of the picture tube don't know this because in the magical world of Mickey Mouse a glue stick is all that’s needed to glue the keys back onto a broken piano, a catcher's mitt will indeed capture an "oooey gooey fish" bouncing around in a rowboat and a watering can is all that is required to make flowers grow.

But what tool do you call on when you open a kitchen drawer and the BIGGEST FIELD MOUSE you've ever seen comes scampering out and disappears under the stove?
Let's just say that if I were writing for the show there would be a few changes.

First, the mouse would NOT be the hero.

I don’t have too much empathy for any fictional rodents, no matter how sweet and cuddly and human-like, when I find half-eaten packets of cocoa; an empty bag of mini marshmallows, and tubes of green, purple and black frosting (but not the red) licked clean along with the tell-tale evidence in the bottom of my baking drawer.

Secondly, there would also be a lengthy discussion about food choices. Because aside from turning up his whiskers at the red-dye frosting, the animal ransacking our kitchen chose only the most sugar-laden items in the cache, leaving bags of raw almonds, walnuts and cashews completely untouched.

"Arrrrgh!"

"What mama?" Ittybit asks and I jump back from the cabinet.

"There is a mouse in the house," I say as I point to the place where I saw the revolting creature dart under the appliances.

"Oh, man," she exclaims, mimicking my displeasure but feeling the excitement of a new adventure as she throws herself down on the floor and peers under the range. "Where did he go?"

"Probably to tell all his friends that the jig is up, the die's been cast and there's a new sheriff in town," I say as I plan for the final changes in my clubhouse storyline. ... the tools in the new and improved Mouskatoolbox would have teeth — sharp, pointy, deadly teeth.

Although I'm not afraid of mice, I don't want to share my baking supplies with them, nor do I want to risk the slim potential for anyone in our household to contract haute virus by allowing the uninvited guests to continue to raid our non-perishables.

It's quite a shift from my mouse-loving days as a child. Standing over a mouse-gnawed mess, I couldn't be further from the kid I was who wouldn't speak to her own father for three days after he dispatched a mouse in the basement with a spring trap and a chunk of bacon.

Here I am, decades later, openly hoping the little critter suffers its demise with a fitting case of diabetes or a grotesque battle with gout before it meets its end in a silvery trap.

But my daughter is just like the "me" I was way back when ...

"You can't kill it. It's a living thing," she protests.

I intercept her as she heads for the drawer, presumably to paw through the debris where the mayhem took place. I call for assistance, asking her dad to take her to the park so I can clean up the mouse mess. He tells me he'll clean it up, but I'm beyond the point in the program where I can let it go. Since cleaning is easier than preschooler wrangling, I continue with my storyline and gather the supplies.

The tools that await me in my Mouskatool box include a vacuum cleaner, disinfectant and paper towels. I'm assuming the tools in the dad's tool box will include a series of dreadfully effective mousetraps and a shovel. Of course in my version, if all else fails, the Mystery Mouskatool would be howitzer.

Needless to say, the episode I'm working on will have to air on HBO following the Sopranos, but it would be worth it just for the "R" rating.