A love letter to my 99

Yesterday I flew halfway across the country to attend a birthday party for a woman I’d never met.

This is the story of why, and of how 99 women I’d never seen in real life have been my salvation.

Many parents of children with rare diseases find refuge in disease-specific online communities. I’m in one of those, and it’s been a fantastic resource, for all the reasons detailed here. I seek out help when I need it, and I try to give back when I can. The people I’ve met there understand our journey better than anyone else possibly could, right down to the smallest details of our daily lives, and I have learned a tremendous amount from that community.

But – these communities can also come with some of the downsides detailed here. I am incredibly grateful for the support I’ve received and I’m not about to leave the group, but for me, in our earliest days and months with L, immersion in it could become overwhelming. While it’s filled with support and encouragement and empathy and problem-solving, a veritable hive mind of people who get it, it’s also by design a place where people turn when they are going through hell. It fills my Facebook feed with all the things that could go wrong, and plants seeds of worry about complications I would never have heard of otherwise. And so I went there with caution at first. If I had spent too much time there while we were just beginning to wrap our heads around what was happening, all of the worst outcomes and what-ifs for L that were already trying to shove their way into my head all at once would have lived too near the surface. I needed to dip my toes in gradually, and so that group didn’t become my main lifeline in the way it can be for some parents.

My online refuge is a group linked only by the common thread that we all happened to be pregnant at the same time. That group, made up of women from all walks of life and stretching around the globe – they have saved me, a million times over.

Nearly four years later, across multiple platforms and through discord and mayhem that occasionally threatened to dissolve us, 100 of us are still going strong. I talk to ninety-nine amazing women every single day. When L was born they were my safe space, where I could rant and rage and curse and cry – anonymously at first, and at first that safety came from the anonymity, in a space where I didn’t have to fabricate a happy ending or edit out an F-bomb in case my mom was reading (hi Carol!). But over time it evolved into enduring friendships with very real women across the country. They understand the hopes and fears and struggles that come with L’s diagnosis – not because they’ve experienced it in their own lives, but because they’ve been by my side every step of the way. They have been there with me in every hospital room, and at every appointment. They have rejoiced with me, and they have cried with me. They joined together to mail me a box of sunshine during some of our darkest days. When I felt like I was drowning, they were my life raft.

If I need an ear or a shoulder to cry on in the middle of the night, someone somewhere is awake. If I need a laugh, they do not disappoint. If I need to vent about my toddler toddlering, they really, really get it. There are a handful of other significant medical and developmental diagnoses in the group, and a myriad of ways in which facets of all of our experiences interweave and align beautifully.

More than anything, they have proven to me time and again that I am not alone. Through months and years in which I spent a great deal of time feeling like no one who didn’t have a short gut child could possibly understand what we were going through, my 99 have shown me that every single person in the world struggles; that every mother fears for her children, every mother hopes for the future, and every mother feels varying degrees of crazy sometimes. They have helped me learn that parenting is always hard, and always also filled with joy; and that if we set aside some of the details that make our paths different, the feelings and emotions at the heart of it all are the same – and because of that, no matter how different my path looks from theirs, I don’t have to walk it alone.

So when I flew 825 miles to spend a weekend with 30 women who may or may not recognize my face, it wasn’t absurdity – it was a homecoming. That birthday party was a family reunion.

I may be on a parenting journey that none of them have traveled, but they have proven to me that others can walk by my side, if I only let them. It’s not so very different from theirs, after all. And no matter what comes next, I know I am facing it 99-strong.


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Going Viral: a response to the overly dramatic media

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.

Yadi Shirt in the Swing cropped

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To the usher at the Cardinals game who spent two innings finding my son a bottle of milk:

cardsfanThank you.

When I asked you if you knew where I could find milk for my son, at Busch Stadium on a sweltering summer evening, I expected you to tell me I was out of luck, or at best offer a vague suggestion.

Instead, you took us several sections over into the Redbird Club even though our tickets didn’t grant us access, because you knew it housed a bakery – but they were out of milk. Instead of giving up, you took us three levels down to a store on the main concourse, where we once again struck out – which you know, because you stayed and helped us look. So you led us halfway around the stadium to a donut stand, where we at last found what we were looking for. While I paid for it you grabbed us the straw my son was asking for, along with some napkins for good measure. And then you went back with us, halfway around the stadium and up three levels and back through the Redbird Club and over several sections, to make sure we didn’t get lost on our way back, because we’d had to travel so very far to find that bottle of milk. It took two innings, but you made sure my son was happy.

You did all this not knowing why that milk was important to us. You may have thought my son was spoiled, or that I was a pushover unwilling to say no to her three year old. If you thought that, you didn’t show it. You were wonderful.

What you didn’t know is that beneath my son’s Yadi t-shirt there’s a central line and a feeding tube. You didn’t know that the unusual form and function of his little body mean that he dehydrates easily, but also that drinking too much water could ultimately land us in the hospital, and for whatever reason, against most logic, right now milk is the thing he tolerates best.

You didn’t know that for the better part of the last three years it’s been incredibly hard for us to go places on a whim, or that in recent months we’ve vowed not to let his medical needs stop us from doing things, and so taking up our friends on these last-minute Cardinals tickets was a small triumph for us. You didn’t know that we might be facing another big surgery soon that could keep us mostly quarantined to our own house for weeks or months; or that I’d forgotten to grab his milk because I’d received an unexpected and lengthy phone call from his doctor as we were packing up our ballgame bag and had been distracted by talking through the laundry list of changes she wanted us to make in a last-ditch effort to avoid that surgery.

You didn’t know those things. You just saw a boy who wanted some milk, and you were kind to him. And I can’t thank you enough.

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Breast is Best – except when it isn’t

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

BottleI 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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Moving Day

13239178_683929029830_1187098196855334188_nThis weekend we officially moved into our new house, in which L’s favorite part is “the two doors and the room for my toys and running around,” and tomorrow we sign the papers to close on the sale of the first house we ever owned.

I am prone to attachment. I should be having many feels about this. I, who carried along to this new house a crystally rock that has sat in the garden at every home I have ever lived in. I, who as a child sat in the old truck sobbing when my dad was trading up. I, who kept every birthday card I ever received and still have every daily planner I ever wrote in.

I can’t get out of this house fast enough.

Partly I think I don’t have the emotional capacity for this departure to rip me apart. I most likely left that house for the last time yesterday, and I barely had time to think about that because I was trying to haul boxes and furniture while comforting a clingy barnacle child who didn’t feel great and also DOESN’T LIKE CHANGE and he wouldn’t nap and wouldn’t eat and wouldn’t be put down and he needed Daddy’s car not Mama’s car but Mama needs to drive it and our dog wasn’t in the right place and where are his trucks and let’s gooooo Mama.  

Besides all that, though….I still don’t feel the way I’m probably supposed to. I imagine lots of people have an extra hard time leaving their first house. It’s a milestone, and it’s filled with memories. But for us, well – when I look around those now-empty walls, this is what I see:

Over there is where I sat all day one sunny Thursday in May, in denial I was actually in labor but full of growing fear.

There is the door I walked through when I came home from the hospital with empty arms.

There is the nursery that stood empty for 131 nights.

Here are the rooms that were suddenly no longer quite my own, as I was forced to accept that I couldn’t care for my own child without a parade of home care providers – many of whom were a source of anxiety and frustration in and of themselves.

There is where I spent countless hours trying desperately to get him to eat a little more, and a little more, and a little more, and feeling with every passing minute that I was further failing him.

There is where I sat hiding my face from L so he wouldn’t see the tears I could no longer hold in.

There are the walls that closed in on us that first winter, when we could barely leave the house and couldn’t see an end in sight.

There, and there, and there, and there, and there, and — well, you get the idea. All of those places? They’ve been covered in vomit and poop more times than I can count (welcome home, new homebuyers!)

This house is filled with memories, but many of them are the kind that make it harder to move forward. And the memories it should be filled with, well, a lot of them happened elsewhere. L smiled at me for the first time in the NICU. He met his grandparents in a NICU room and met our dog for the first time in the hospital courtyard. He spent his first Halloween in unexpected surgery. His first bite of oatmeal was in a hospital room, and he took his first steps in a physical therapy session.

This house is full of love, but we’re taking that with us. It is where Z proposed to me, but I suppose I’ll take him with me too. What we’re leaving behind is an empty shell; the important things are coming along to a new shell we can make our own, on our terms.

Our new house is a fresh start for us. It signifies us taking control of our lives and getting on with things. I say that knowing full well that it may never be smooth sailing with L; we spent our first night in the new house scrubbing a mess off the carpet in his room in the wee hours of the morning. Parenting is always hard, and it’s always going to be extra hard for us, and there’s a decent chance we will be taking a big step back before long.

This house does not mean we’re leaving all that behind; it’s a reset. We are leaving behind the stretch of our lives in which things happened to us and we reeled and tried to recover but mostly spun along out of control and waited and waited for an all-clear that will never come, and we are forging ahead with eyes wide open, knowing that it’s time to stop waiting, and that we have become capable of adapting, and that whatever comes, we can get through it together.

Plus, you know, there are two doors that slide, and there’s room for one hundred fire trucks and running around.

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