Pride and Joy

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Categories Balance, Congenital Anomaly, Difference, Fraternal, Medical, Perspective, Special NeedsTags , , , 6 Comments

This is not the introductory post I had planned on writing. Then again, very few things in the past 15 months have gone according to plan, so, here we are.

We are attempting to reduce the number of bottles Mr. D drinks. He day-weaned months and months ago, lacking the patience to sit still at my breast. But he will carry a bottle with him all day, taking sips here and there, if we let him. Dire warnings of ruined mouth and teeth from our pediatrician have us taking action: he only gets bottles at naps and bedtime (and in cases of emergency).

“Ba-ba?” he asks.

“No, sweetheart, you only get bottles when you go night-night. Would you like a cup of water?”

“Ba-ba!”

“Only at night time.”

“Nigh-nigh!” He takes off, down the hall, towards our room. (Our as in mine and his father’s…but yes, we co-sleep, like the push-over, sleep-deprived parents we are.)

“Mister, it’s only 5:30, there’s no way you’re tired. Why don’t you come play with your house?”

“Nigh-nigh!!”

I follow him. He is climbing onto the bed. He lays down, rolls around, puts his bum in the air, then raises his head, looks at me, and triumphantly declares:

“Nigh-nigh!” (Long pause…) “Ba-ba?”

I scoop my deceitful, manipulative little man up into my arms. Trying to pull one over on me, at such a tender age (and with such a limited vocabulary)! How could this little creature, who didn’t even exist two years ago, have so much knowledge of the world?

And I think: could ever a mother be more proud of her son?

I attempt to relay this little story to my husband, by text-message. Phone reception in the Pediatric Intensive Care Unit at the children’s hospital is terrible, pretty much non-existent. But this is far from our first PICU stay, and we have learned that iPhones can somehow get text messages (even from non-smart-phones!) over the internet, and there is wireless access through-out the hospital. My husband is there with Mr. A, though he and I will soon be trading places.

A simple cold left both boys with runny noses, and then Mr. D got better and Mr. A did not. Our pediatrician suspected a sinus infection (not his first), but when the ten-day course of antibiotics was done, he was worse. The pediatrician-on-call for the day (because of course it was Saturday), suspected his recently repaired palate was infected. I filled another prescription, gave him the first dose, and put him down for his nap. He woke up, vomited blood. I pulled his remaining stomach contains back into a syringe via his G-tube: they were bloody. I put them in a small Tupperware container, changed his diaper (poop looked weird, so I bagged that, too), and took him (and his ‘samples’) to the ER, leaving Mr. D with my mother.

I watched them working on my son (it never gets any easier). They wanted to intubate him; I was able to buy a reprieve and repeat blood-gas, which showed that to be unnecessary. I spouted off his medical history better than I ever could my own: dates of hospitalizations, surgeries, tube placements; pertinent findings from swallow studies, sleep studies, upper- and lower-GI studies, MRIs, echoes, everything. And the underlying root of it all: a deletion on the long arm of Chromosome 2.

“Which specific deletion?” asked the attending, and I told her. She nodded sagely, losing my respect. She’d never heard of his deletion, I knew. Which is fine, but be honest with me, as my son’s life is in your hands. She would leave the room and attempt to Google Mr. A’s syndrome, and not find out much. Fewer than 25 cases of similar (and no exact) deletions are known to exist. And, to be perfectly frank, there seems to be not much to say about it except: “This is not good, and will cause lifelong problems. Here is a list of some but not all, of which he may have many.”

We were told awful things: lists of he-will-nevers and he-will-always-needs and the impression that very few people had any faith in Mr. A. But we had held him (after his fourth day of life, once he was stable enough), sang to him, loved him. He was and always will be our first-born, heir to the kingdom, recipient of faith, hope, and love.

It eventually became clear to me—first from suspicions, then from out-right confirmation—that few, if any, had expected him to make it through his first year of life. (That no one bothered to prepare us for this is another post.)

But he has indeed survived. He has blown previous research right out of the water. He is writing his own story, and I get to watch.

This stay was short: 2 nights in the PICU and one on the floor. I bring him home in fine spirits. He wants to stand. I take his hands and help him. He lifts one foot, then the other, walking across the living room with my assistance. A week ago, he would only do this with much prodding and many tears, and now here he is, trying to chase the cat.

And I think: could ever a mother be more proud of her son?

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