Don’t tell GI we’ve gone viral – we’ll be admitted for observation!

If my math is correct, in the last five days traffic to my little blog has grown by 100,000%.

Let me take a minute to let that number sink into my skull, because I still can’t quite wrap my head around it.

I thought my last post would be well-received, and I knew it had a broader appeal because it’s a lot less narrowly-focused than many of my posts. And I made it public and tagged the Cardinals on purpose, after all, hoping they would see it and recognize the usher who helped us. But I am humbled and amazed by the response I have seen to this simple story of kindness.

I want to take a moment, though, to talk about the many outlets who have incorporated varying degrees of overdramatization into my little story. I was not “frantic” or “desperate”; my son was not in grave danger, and he’s not currently critically ill. It doesn’t offend me to hear those things – I just think framing it that way is missing the point.

To me, this story isn’t about helping a sick child at all. Almost anyone would do everything in their power to help a child in dire need, but my son wasn’t facing an urgent situation. We were living a more or less normal day for us, which in our lives just happens to be a little harder than it is for your typical family. The real beauty of this story, to me, is that my son appears to be healthy, and the usher was committed to helping us simply because he could, without any underlying sense of urgency to help a “frantic” mother or a “very ill” child. I think that’s what resonates with people; that we all have an endless number of opportunities to be kind, and we never know how big an impact may be made by a small act of kindness.

My family faces a series of ongoing battles that are so pervasive and so integrated into the fabric of our lives at this point that I think we’re not always even aware that we’re constantly prepared for battle – until we are shown so poignantly that we don’t always have to be. This was made clear to me at the ballgame that day, and recently stood out in stark relief again when I spoke to L’s daycare director about his upcoming surgery for the first time. We love his school and I expected nothing less than empathy and understanding, but it wasn’t until she immediately and without question offered to be more accommodating than we’d even hoped that I realized I had subconsciously come prepared to fight for what we needed – because that is so often required of us.

You could fill an entire, ragey blog with the mess of insurance denials and claims that are repeatedly processed improperly (by complete and total accident, they swear, and they have their best people looking into it….), but beyond all that, every tiny interaction with my son is a negotiation with his health. For the most part these negotiations are not frantic or desperate situations; they are everyday things. He needs to eat far better, and far more, than most kids his age, and we also have to keep a careful balance of liquid and solid intake, so I am constantly focused on what’s going in; but he’s also three years old, and picky and spirited and stubborn, so I have to micromanage his intake without pushing hard enough for him to notice. He has a sterile dressing to maintain, but is also increasingly distressed by anyone touching his dressing, so every time we patch it or change it involves a series of careful negotiations in which we gently walk him through the process, maintaining a precarious balance between being firm enough to keep his dressing site sterile and safe, and being gentle enough to keep his stress level at a point that will make the next dressing change manageable. We frequently make small decisions that boil down to the lesser of two evils; and we need to minimize variables if we are to have any chance at deciphering cause and effect and treatment of everyday symptoms, but it’s incredibly hard to do that without limiting our lives.

And when I start to get cocky because my constant and extensive efforts are seeming to pay off at last, life often takes the opportunity to deflate my balloon juuuuuust enough to remind me who’s boss. For example, a couple days ago at lunchtime I successfully averted an overtired meltdown and put the kibosh on overdoing it on his beloved Drip Drop at the same time, and then, with much calculated negotiating and covert encouragement, managed to get my very picky three year old with mild sensory issues to eat multiple food groups! And not just yogurt and his two toddler-approved fruits, but also bites of bread and turkey! And not just bread and turkey, but bread that looked different and turkey in the SAME BITE like a REAL SANDWICH!!!!

And then while we were at the pantry getting the banana I’d promised him as a reward for this Very Major Accomplishment, and talking about taking even more bites, the dog snuck in and ate the rest of the motherflipping sandwich.

These kinds of things don’t leave me frantic, or even generally grumpy (at least most of the time). They are everyday occurrences that leave me resigned to things never coming easily no matter how much we direct every ounce of our energy at working to make things go smoothly. I wasn’t approaching the usher terribly worried about my son or despairing about how horrible this situation was; anywhere we go, we’re prepared to leave early for a number of reasons (only a few of which involve our underpreparedness!). I thought I’d see if I could find some milk, and if I didn’t we’d probably leave a lot earlier than we’d hoped, and that would be that. Not that we would welcome that, but it’s representative of that enduring, exhausting resignedness. The gift the usher gave us was the unexpected ability to set that aside and succeed despite the issue that arose, as one issue or another often does, and to find that success without putting up my mama bear hackles or navigating a series of negotiations and concessions (although we did end up navigating quite a series of concession stands!), but rather by simply accepting an act of kindness offered for no other reason than that someone saw an opportunity to help, and did so.

None of the things that I’ve described are major (or frantic or desperate) obstacles to anything, on their own. But they permeate every fiber of my being and every moment of my life. It’s not something I’m constantly conscious of; but it does very much shape how I approach the world. I have come to expect to have to row against the current, and so an encounter like this comes as a much-needed reminder that we don’t have to do it all alone, after all, and that people are generally good.

Thank you, to all those of you who have shared our story, sent your love and shared stories of your own. I hope you keep reading. And to anyone else out there struggling against the current – don’t hesitate to reach out. You are the reason I write, and maybe together we can turn the tide.

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It’s National Breastfeeding Week. Here’s what else “Breast is Best” means to struggling mothers.

I am 100% pro-breastfeeding.

By that I mean I am 100% in favor of giving mothers all of the necessary information and resources to have the best chances of successfully breastfeeding if they so choose.

I’m conflicted, though. A lot of pro-breastfeeding rhetoric sets up many mothers for a lot of unnecessary guilt and pain.

For example, take the first sentence on the World Health Organization’s breastfeeding page: “Breastfeeding is the normal way of providing young infants with the nutrients they need for healthy growth and development.”

In other words, if you have trouble breastfeeding, you’re not normal.

The second sentence is worse: “Virtually all mothers can breastfeed, provided they have accurate information, and the support of their family, the health care system and society at large.”

If you have trouble breastfeeding, you’re not normal, AND you’re probably not trying hard enough.

Throw in this laundry list of the benefits of breastfeeding from womenshealth.gov – protects your baby from asthma, childhood leukemia, childhood obesity, ear infections, eczema, diarrhea and vomiting, lower respiratory infections, necrotizing enterocolitis, SIDS, and diabetes – alongside studies showing breastfed babies have higher IQs and stronger bonds with their mothers and you’ve got the trifecta:

If you have trouble breastfeeding, you’re not normal, you’re probably not trying hard enough, AND you’re clearly ruining your child.

This is dramatic. I get it. Except, it’s kind of not. Scientific literature tells us that breastfeeding saves thousands of lives, and that it’s our duty to breastfeed in case of another Holocaust (actual quote: “Our role as caretakers is to prepare for [disasters] and not compound their consequences by disrupting the natural order of infant feeding (e.g., breastfeeding and the use of human milk). […] Those infants who were born into the horrors of the Nazi camps and survived proved it, and that should be enough to convince the doubters”). Even without those extremes, I know many women who have experienced significant amounts of guilt about not producing enough milk, not being able to nurse, and/or needing to supplement or switch to formula entirely.

There are a number of reasons women are unable to exclusively breastfeed, or choose not to do so. Here are a few:

• Insufficient supply
• Poor latch
• Poor response to the pump
• Lack of support from family
• Lack of support at work
• Lack of information about navigating difficulties
• Expense of pumping and properly storing milk (especially as opposed to free formula via WIC)
• Mastectomy (check out this cancer survivor’s story)
• Absence of lactation due to extreme prematurity
• Aversion to breastfeeding due to history of sexual abuse
• Medications that are not compatible with breastfeeding

Aside from the fact that, in this day and age, lack of family and employer support and lack of information are a damn shame, all of these (and many others) are perfectly legitimate reasons to choose formula or supplementation. And while there are a number of studies demonstrating the benefits of breastfeeding to both mother and baby, there are also studies showing those benefits may be negligible at best. Why, then, must we always talk about breast-feeding as easy and natural and any other form of feeding as less-than?

One very important answer to that question is that society has not entirely caught up with women’s rights. We need to emphasize the importance of being able to choose breastfeeding in order to guarantee working mothers rights to adequate space and time to pump, and to protect the rights of all mothers to breastfeed whenever and wherever they need to do so.

All too often though, the voices speaking out to protect women’s right to choose to breastfeed turn that choice into an imperative. It’s really, really hard to defend the value of breastfeeding in a way that is strong enough to combat an employer’s or an anti-NIP mega-prude’s ability to say “just use formula instead,” without overselling the benefits of breastfeeding in a way that implies that mothers who have difficulty breastfeeding or choose to use formula are failing their babies.

So we have a very real need to tout the very real benefits of breastfeeding in order to protect the rights of women to choose (breastfeeding), while also navigating a very real need to not exaggerate the actually maybe-not-so-significant benefits of breastfeeding in order to protect the rights of women to choose (not to breastfeed).

Now that we’ve muddied those waters, let’s further complicate this mess by adding in medical complexity. When you add in prematurity and chronic illness, all of that muddiness is amplified. More is at stake; the potential benefits are more significant, and the potential pain is greater.  

Let’s say there’s a mother, we’ll call her “A,” who has an infant son, let’s call him “L,” who gets most of his nutrition from TPN. A was really looking forward to breastfeeding, which she expected to come naturally for her, but instead L was born with a gastrointestinal condition that made him unable to nurse for months after birth. A pumped freezers full of milk, determined to make nursing work sooner or later (because how could she ever create a strong bond without nursing? She would definitely never end up with a mother-obsessed toddler who must not only sleep in the same bed as his mama, but also on the same pillow….) or at the very least provide enough breastmilk to get him through as long as possible, since she’d been told breastmilk would aid in gut rehabilitation.

Let’s say that when L was about 7 months old, a less-than-helpful gastroenterologist made A feel like all her pumping was essentially futile because L still wasn’t drinking all that much, and she already had more than enough breastmilk in the freezer to get him well past his first birthday. And then, let’s say when L was about 15 months old, he started a downhill slide that ended in an emergency blood transfusion and a return to TPN, and that just happened to coincide with A’s freezer stash running out.

Any number of things could have contributed to that downhill slide – the most obvious answer, which seemed pretty clear to L’s new, more supportive GI team, is that he wasn’t ready to be off of TPN just yet – but with all the breastmilk rhetoric out there, you can bet your buttons A will wonder for the rest of her life if she should’ve just kept pumping. Because maybe that downhill slide was all her fault.

Or, consider a mother who gave birth to a 24-weeker and was unable to induce lactation with a pump. A few weeks into their NICU stay, her preemie develops necrotizing enterocolitis (NEC), a devastating disease that destroys the bowel. She already feels like she’s failed her baby several times over, since she was unable to carry him to term and was unable to lactate and can’t even hold him when he cries silently around his vent tube, and she’s trying to wrap her head around a diagnosis she can barely pronounce, and now she’s being told by science and the WHO and a holier-than-thou crusader of a lactation consultant and all of the women in the organic foods aisle that breastmilk prevents NEC, so by the transitive power of sanctimommy her baby’s condition which will plague him for the rest of his life is her fault. Her baby MIGHT ACTUALLY DIE because she couldn’t convince her nips to give up the all-natural goods.

The thing is, in any individual case, you can’t know if breastmilk or formula made a difference. I can’t go back and try again with L to see if keeping him on breastmilk longer than 15 months would have produced different results. It probably wouldn’t have, but I can’t know, and so there will always be guilt.

Moms in our online short gut group who attribute their babies’ positive outcomes to breastmilk – they can’t know if their baby would have had worse results on formula. Moms whose preemie and short gut babies have struggled greatly on formula – they can’t know if their baby would have had better outcomes on breastmilk. 

Overall, yes, studies have shown that breastmilk is better for preemie populations, and so it really is very important to encourage moms to try to pump and provide them all the support they need to do so. But how do you continue encouraging mothers to try everything in their power to pump enough milk for their babies to feed exclusively on human milk, because maybe it could save their lives (although maybe in any particular case it would make little real difference), without making those same mothers feel like their baby’s struggles are all their fault if they can’t produce milk, when they already feel like they have failed at the fundamentals of motherhood?

I don’t have an answer. But I do know that the answer is not a careless chorus of “Breast is best.”

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