Tiger v. Dragon

Last month Emily Rapp published a piece in The New York Times about how to parent a child you know will die. Her family's story, entitled "Notes from a Dragon Mom", touches on both the tragedy of knowing you will lose a child and the freedom that knowledge gives you. It is a freedom to focus on each day, to love your son or daughter without becoming needlessly fraught over all the inconsequential nothings so many of us find ourselves perseverating over.

Should we be more strict? Should we have chosen a different preschool? Should we have allowed more or less play time or television or juice? Do these things matter? Not, Miss Rapp tells us, if your child will not survive the first few years of life. It is impossible to read her thoughts without feeling both incredibly moved and incredibly grateful. There is a purity in her tale, a peaceful acceptance, that I believe is only possible because her child's diagnosis, Tay Sachs, does not come with any ambiguity. I do not pretend this is a place the families of children with Tay Sachs do not come to without a great deal of pain. Unimaginable pain. But there does seem to be some degree of comfort in the absolute, the impossibility of treatment or a cure, the lack of shades of gray.

It seems to me much harder, on the other hand, for those families I meet who do not have that certainty. How do you parent a child who may live for five years or ten or fifteen? The article does not tell us. No doubt Miss Rapp would do anything to have that extra time to spend with her son. But would she have written the same article then? I very much doubt it. She would have found herself in that horrible in between that the parents of children with chronic illness find themselves, struggling to balance the needs of today with the hope for tomorrow.

There is a new drug hotly anticipated in the treatment of Cystic Fibrosis that has found itself in the news of late. Children who once died in grade school may live to attend college. The decisions their parents make about bedtime or schoolwork or being grounded for using a swear word will have a very real impact on the kind of adults they grow up to be. But not all of them will grow up. Even with the incredible advances in treatments, the gene therapy research that gives hope that someday there may be a cure, children still die from CF. Entire families are devastated by the loss of multiple siblings. The fact that a disease is treatable is still not a guarantee.

Is this worse? Is it better? Does the extra time you have to spend with your child outweigh the pain of knowing that they will die with more self awareness, more fear? I cannot pretend to know the answer. I cannot pretend even that there is an answer, a single yes or no that applies equally across the board to those brave families who face CF or cancer or congenital heart disease so resolutely and with so much grace. It is a question, nevertheless, that is worth asking. Simply by looking, who knows what we will find?

Freebie

Supporters of breast feeding are generally applauding the trend that fewer hospitals are giving away free samples of formula to new moms. I certainly see the argument. Even if the hospital hires lactation consultants and gives lip service to the benefits of nursing for both mother and child, the act of handing over the formula (which hospitals usually receive free from formula manufacturers) is seen as complicit support of formula as the diet of choice for newborns.

When the resurgence of breast feeding amongst women in the U.S. meant that formula sales fell instead of continuing to rise as expected, Nestle sent Caucasian employees dressed in white coats to places like Africa to give free samples away. These were not doctors, but they were dressed like doctors. The result was that women who had fed their families successfully for generations were led to believe that formular is better than breast milk. Unfortunately, while an adequate source of nutrition and certainly not overtly dangerous to the infants whose mother's cannot or chose not to nurse them, in communities with no clean water supply and where financial limitations mean that formula is likely to be mixed at half-strength to save money, formula is in fact dangerous. Dirty water and the diarrhea it brings with it kill infants, infants who would never have fallen ill had they been nursed.

In the United States the stakes are not quite so high, the situation not so dire. Still, the protective effects of breast milk have very real financial impact on the health care system and on families as a whole. Fewer childhood illnesses translates to fewer missed days of work for parents and fewer doctors visits.

So I do support breast feeding and not only because the AAP tells me to. But I also support having a few bottles of formula in the back of a cupboard somewhere and, since no gung ho new nursing mom wants to have to walk into a store and actually admit that she is going to buy formula, then by all means let the hospitals give it to them for free.

Emmaline got no formula in the hospital when she was born. We had no formula in the house when we went home. She had no formula for the week that I sobbed each and every time she nursed because we were not latching right. And that meant we had no formula within easy arm's reach when I spiked a fever of one-hundred-and-two from the mastitits I had developed and that I, despite feeling as if I had been hit by a truck, continued to be her only source of food.

We nursed for another year. We were by no means breast feeding failures. And I don't know for sure that if I had guilt-free formula stashed away somewhere that I would have actually used it. But even if I didn't, just knowing it was there would have made nursing Em a choice and maybe I wouldn't have felt so scared or helpless. Maybe I would have taken a break and been able to heal before the bacteria took hold beneath my skin and I ended up back in the hospital and on IV antibiotics for 4 days. Maybe we would have been healthier, the two of us, with a little formula on the side, our dirty little secret.

Em, of course, didn't care. She nursed like a champ even when she was biting holes in me to do it. She gained weight. We eventually got the hang of it and I wouldn't trade the closeness of those moments for anything in the world. But when a new mother looks at me on the day she is about to go home from the hospital and tells me that she doesn't know if she can make it on breast milk alone, I tell her I understand.

I make a hard sell for exclusive breast feeding, of course, but then I tell her that if she takes some formula home and hides it somewhere at least she won't have to worry. If there is a night she is throwing up and can't get out of bed, then she can take care of herself while her partner takes care of the baby. Because nursing, health benefits or not, is not worth it if it detracts from instead of adding to the joy of having a child. Nursing is hard work. But, like baseball, it's the hard that makes it great.

The Penis Pronunciation

Now that Emmaline is two, it is a whole new world. She learns something new every day. For instance, how to make breakfast.

Or how to take care of the livestock...

To ride in a rodeo...

To prepare for the catwalk...

To turn brand new blue shoes to black in less than sixty seconds...

Or even how to seek out new worlds and new civilizations.

But perhaps the most impressive strides she's made lately is in her ability to communicate. Sure, this often takes the form of earth shattering shrieks and a deluge of tears. But more often than not there's a sentence thrown in there somewhere.

"Stop Mama, no kissing me," was not a sentence I particularly wanted to hear today, but it was a sentence nonetheless.

And though she says much that we don't understand and says even more that you wouldn't understand, when she chooses a word, it is usually correct. Once she pins down the syllables, she rocks them like a beat poet and expects her audience to appreciate her efforts.

So it was unexpected when, after introducing peanut butter for the first time, she got it so entirely wrong when asking for seconds. The peanut butter lollipop was a favorite of mine when I was younger, probably because it was within the reach of my culinary skills consisting as it does of peanut butter loaded onto a spoon. Emma had some. She liked it. She did not demonstrate any feared allergic reaction but instead smiled and asked me for more.

"Like more penis pop, please."

"You want more peanut butter lollipop?" I asked innocently.

"Yes please, I love penis lollipop."

She said lollipop. She also says helicopter and refrigerator and lullaby and thunderstorm without difficulty. But she cannot say peanut butter.

I didn't laugh. I didn't draw attention, though this was one of the hardest things I have ever had to do. I simply repeated the words peanut butter to her as often as possible in the days that followed, waiting patiently for Emmaline to get it right. Granted, I've been waiting less than a week, but we're not making progress.

This afternoon, while lying underneath the kitchen table to let Scout lick the remains of her snack off of her face, Emmaline exclaimed, "Mmmmm, I love penis crackers!" Then she said, "Crazy dog, stop licking me."

At least she's getting some things right. In the meantime, I'm waiting for the knock on the door from social services. And I have a feeling I'll be talking about peanut butter a lot.