In Defense of Milk Sharing

Oh, the news. Oh, internet. Oh, people with opinions on things that have nothing to do with them.

What are we going to do with you.

In light of the news article that has been circulating over the past few days, I have a confession to make. My name is Sara, I feed my daughter almost exclusively donated breastmilk. Yep. You heard that right. Milk that comes from other women's bodies, not my own.

My baby was born with tracheomalacia, a condition that causes her trachea to collapse in on itself. She'd suffocate when she tried to eat, became exhausted with the effort, and would fall asleep after 90 minutes of trying as hard as she could to get full. She has never been a strong sucker, and as a result, my milk never fully established. By the time I realized pumping was going to be my baby's only option of getting my milk, my body had adjusted to feedings that took an hour and a half. What this meant? I had to pump for AT LEAST 45 minutes to get what Rosie needed for one feeding. I pumped as often as I could--woke up before Rosie, stayed up after she'd gone to sleep, every naptime for her was pumping time for me. So to put this into simpler terms, I was doing two hours and 45 minutes of work for EACH feeding. I fed her, and then I pumped, and that was all I did.
I barely managed to brush my teeth every day, let alone shower or get dressed. And despite everything I tried, and I tried it ALL, my milk supply never increased. No amount of fenugree, blessed thistle, stinging nettle, mother's milk, goat's rue, blackthorn berry elixir, fennel root, raspberry electropacs, rented Symphony pumps, La Leche League leaders' advice, lactation consultant appointments, internet research, books, or sobbing calls to my mother made any difference. I could not get my baby what she needed.
And that sucked. Especially given her genetic condition that makes digestion a literal internal battle, and how awesome is formula for little babies' tummies? Not.
In my fatigued, depressed, and disheartened state, I stumbled upon Human Milk for Human Babies, a worldwide network of women who participate in milksharing. Mothers whose bodies are able to produce an excess of milk (and what I would give to be one of them) donate to babies whose mothers cannot. I found a few donors, gave up pumping, and sobbed. Out of relief, out of exhaustion, out of frustration, and out of gratitude. I meet with my donors when we take Rosie up north for her monthly appointments with the cystic fibrosis team, and I'm usually able to stock up enough to keep her exclusively on the milk that will make her smarter, healthier, and more emotionally and socially adept .
Every day, they sacrifice time and effort from their own lives to keep up an excessive supply that feeds babies that are not their own. They are superheroes. They are incredible women. They saved me. Every day, they're saving my baby. They are paying me a service that I will never be able to repay them, and I will never cease to be grateful.
My name is Sara, I'm a recipient of donated breastmilk, and I could not be more proud or grateful to be able be part of this extraordinary group of women. And if I ever have another baby, (without malacia or CF, that is) I will do absolutely everything in my power to help women the way I've been helped, and to pay it a little bit forward.

Be educated, be aware, be involved, and for heaven's sake, be grateful for boobs.

the smallest news

I just barely picked my baby up off the ground by grabbing a handful of her dress, and by some miracle of physics and space, was able to put her in her exersaucer with each of her legs in their prospective holes without spilling a single drop of milk from either bottle.

Tell you what. I have about had it with this pumping thing.

Amsterdam International

When Rosie was first diagnosed with CF, I met with a couple that had two little boys with the same disease. As I went to leave their house, they handed me a copy of this. Then yesterday, I came across a blog the other day called Uncommon Sense. It's written by Dana, mom to a special needs little girl. And it describes in uncanny likeness exactly how I felt/have been feeling/vacillate between feeling every twenty minutes some days. If you're interested, keep reading, or check out her original post here.

Amsterdam International
To fully get this post, please read (or re-read) Welcome to Holland before starting. Thanks.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland." It is supposed to explain what it's like to have a child with special needs. It's short and sweet.

It skips everything.

While "Welcome to Holland" has a place, I used to hate it. It skipped over all of the agony of having a child with special needs and went right to the happy ending.

The raw, painful, confusing entry into Holland was just glossed over. And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time. And it would sound like this:


Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.


And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010 All Rights Reserved

calling all time wasters

Here's the thing about exclusively pumping after your body has gotten used to 90-minute feedings because your baby has a congenital throat condition that makes it difficult for her to regulate breathing and swallowing at the same time so it takes her for-ev-er to eat.
You spend a lot of time pumping.
Like, let's say I pump eight times a day. Each of those sessions is half an hour so I spend more than four hours sitting in a chair, attached to a breast pump, with a computer on my lap because hey, I get super bored. And here's what happened today.
I ran out of things to do on the internet. I didn't even know that was possible, but I guess it is. New shows to watch? Check. Online window shopping? Done. Obsessively following Kate Middleton's every fashion move? Yep. Pinteresting every cute outfit, DIY project, home inspiration, and recipe I come across? Absolutely. I've come to the conclusion that the rest of the world needs to be on pinterest as much as I am because my feed is not filling up with new things often enough.
Raise your hand if you can't wait for your baby to start eating solids!

not humble at all brag

This is my husband. He's a manly man. Once when I was ordering lunch for him at a restaurant neither of us had ever been to, I said to the waiter, "What's your manliest sandwich?" knowing that the result would be palatable for Bryan. It's just how he rolls.
Last July, Bryan took the Montana bar. Three days of eight-hour testing and a lot of missed hours of sleep, not to mention an entire summer dedicated to studying, after, ya know, three years of post-graduate education.
No biggie.
Then, he and his boss decided he'd take the Idaho bar too, thereby increasing the area in which he's certified to practice. So he started studying for that bar. And then, as you know, the year from the seventh layer of hell happened, pretty much stalling Bryan's studying. Three funerals and a life-shortening diagnosis will do that to a person. And then, the day before the bar, Bryan worked until five, started driving to Boise (which was six hours away), ran into weather suited only for the arctic circle (and I'm not talking about the restaurant), got to Boise two hours before the test started, slept an hour in his car, went in, and took two-day sixteen-hour thing like a boss.
Today, we found out he passed.

My husband, the ultra marathon runner, jumps-out-of-helicopters-for-fun-er, wild beast slayer, baby cuddler, handy man fixer, priesthood holder, lullaby singer, hand holder, rock star love of my life, is the most amazing person I have ever met. I'm grateful every day we found each other and grateful every day that he picked me. And grateful that I'll never have to go to law school or take the bar, because watching someone else do it was quite enough work for me, thank you very much.

internal struggle

It's a well-known fact that bigger babies do better with cystic fibrosis as adults, for whatever reason. The bigger the baby, the healthier the adult. So I know in my head that it's such a fantastic thing for Rosalind's cheeks to feel the effects of gravity, for her stretches to bring her ever closer to the confines of her bassinet, and for the numbers on the scale to continually climb. But in my heart, I want her to stay my tiny baby forever.
Before the cystic fibrosis diagnosis (what a fun rhyme is that!) came, she was gaining weight by a few meager ounces every month. At six weeks, she was in the fifth percentile for growth. As an 8lb 7oz baby that grew into an adult and married someone who had been 9lb 8oz at birth, this was baffling. But now I feel like, with the help of her enzymes, Rosie's body is catching up to where it should have been all along.
Course, that doesn't stop my irrational heart from wanting her to stay my tiny sweetheart from just a little longer. Hearts are totally unreasonable.

feeding, fibrosis, and flashing

One of the things that has been most difficult about being Rosie's mom is feeding her. Of course, it's a heck of a lot easier for me to feed her than it actually is for her to eat. When I think about how difficult it must be to keep on swallowing when your throat collapses in on itself, I am awed at how brave my little girl is and what an insanely hard worker she has already become.
The tracheomalacia is what makes eating so hard for her. I got some breastfeeding help at the hospital after she was born and ordered a few books on breastfeeding, but books, for one of the first times in my life, completely let me down. NOWHERE in ANY of the books I read was there a "What To Do If Your Baby Eats For 90 Minutes At Each Feeding And Never Seems To Be Full Even Though You're Producing Plenty Of Milk" section. Because Rosalind has to fight herself with every breath, regulating eating and breathing is harder for her than it is for normal babies. Most babies eat for 10-20 minutes on each side... that was most definitely not what we experienced. And then the cystic fibrosis makes her insides all slippery like a fish I once tried to hold onto that was most definitely NOT dead like my husband had told me it was before I picked it up, so all the food she ate (before we started giving her the right medications) was going right through her, causing her to be hungry pretty much right after she finished each meal. It was exhausting and frustrating and disheartening for both of us. I started pumping after she was done eating because I was convinced she wasn't getting enough to eat. I'd bottle feed her what she couldn't get from me, which prolonged the entire process by about another 45 minutes. Looking back, I'm not exactly how I survived the first few months before we knew what was wrong. Or that anything was wrong, because I am sure now that there is not a more confusing or self-doubting time in one's life than being a new parent. Eventually though, it got to the point where I had to take a hard look at what I was doing and decide if it was truly best for Rosie. The bond I felt with my little girl when I was feeding her, knowing that I was the best person on the planet for doing exactly what it was she needed, was fulfilling in a way I had no idea it could be. But watching her struggle so hard to do what should have come so naturally and been so comforting for her caused more pain than any plugged duct ever could.
I remember one night in particular... I was trying so hard to figure out how to feed her. I had called La Leche League leaders, seen lactation consultants, read book after book... I cranked up the heat in my room, undressed us both, and sat her tiny body on top of mine, convinced that the skin-to-skin would work and that it would be the missing piece in feeding her. She'd start to eat, and then scream. I'd try to feed her again, and she'd try for a few seconds, and then start screaming. I didn't know what to do, didn't know how to help her, and didn't know what was wrong. Finally, I asked Bryan to make up a bottle of formula and feed her. He took her away from me to do just that, and I sat and sobbed and sobbed and sobbed. I'd never felt more helpless, or more like a failure. "Babies are born knowing just what to do," was what every book and every person was telling me. So obviously, I thought, the problem must have been me. When I realized how difficult it was for her to breastfeed, how much energy she had to expend simply to keep from suffocating, I made the decision to stop breastfeeding altogether. Now, I spend hours on end every day attached to my pump, and I bottle feed her what I produce. It is so much easier for her to eat from a bottle. So much less work, even though it still takes about an hour for her to finish one meal.
Anyway, that's how, yesterday on our trip to Missoula to visit the cystic fibrosis team, I came to be pumping in the car without a nursing cover. It was just Bryan and Rosie with me, and I wasn't exposing anything the two of them haven't seen and don't fully appreciate. Unfortunately, it's also how I came to be flashing the trucker that we happened to be passing at a very inopportune moment. And that's how he came to be honking his horn at me as he experience what I'm assuming was the most surprising part of his day.
Flashing truckers. Just the latest on the long list of things I can tell Rosie I did in an attempt to feed her as a baby. Get ready for teenagedom, little girl. Mom's going to have so much in her guilt trip arsenal, it's not even funny!
Well, maybe it's funny for the trucker.

in which grandma comes to visit

My mom came to visit over the weekend. It was heavenly. Most babies do okay with one parent around, but this weekend we defined Rosalind as a Three-Adult Baby. Three adults is perfect. The house gets clean, the mom gets showered and deoderized, the baby gets fed, the percussions get done, the husband gets to go on runs, and the parents get to go on dates for the first time in three months. It was, in a word, awesome. My mom took off for home yesterday and now I am, in a word, still in my pajamas at 7pm.
Like I said. Three-Adult Baby.
For the first time, I got to make my mom an Easter basket, instead of things being the other way around. I hid Bryan's basket and hers outside and positively cackled with joy watching them search high and low. In this house, we believe that you don't get Easter treats without working for them.

the fleas

I came to a conclusion the other day. But it's the kind of conclusion that won't make sense unless I give some backstory. So go read this if you haven't.
There's something a little bit insane about going through tragedy while you're pregnant. On the one hand, I was so shaken up over everything that happened--Bryan's brothers died decades before they should have. We said goodbye to my grandma, who had pulled through so many sicknesses that I was starting to believe she was partially bionic. On the other hand, I tried so hard not to be sad over everything that happened, knowing full well that everything I felt was being felt and transferred to my baby too, and that every breaking down crying jag I went on could be hurting her development. Is anyone under the impression that a lot of stress is healthy for a pregnant lady?
No? Okay. Good.
After the third funeral in two months, I told God I had had it. Enough was enough, no one should have to go through this many sad things, and that if I had one more sad thing happen within the next ten years, the cortisol in my system would overtake me, replace blood as the primary fluid in my veins, and I'd turn into a giant comfort-food-eating, fatigued-feeling, fat-storing basket case. Then my baby got diagnosed with cystic fibrosis. Then she got diagnosed with tracheomalacia. And then we found out our cat has heart failure and will die soon. In true crazy cat lady fashion, that's what tipped me over the edge. Really? I remember asking God. All this other crap, and now You're taking my cat too?? I said no more sad things, and I meant it!
Looking back, I'm not sure why I thought that was a super idea. Is anyone under the impression that God responds well to being bossed around?
No? Okay. Good.

My conclusion has been this: God doesn't want me to tell Him what I can handle and what I can't. God wants me to say, "I trust You. I'll do my best to make it through whatever You may see fit for me to experience. I have faith that You'll prepare a way for me to accomplish whatever it may be, and I'll stay the course during these trials."
I don't want to relinquish the control I thought I had over my life, but the more life continues, the more it's verified that I don't have a say in grand scheme. Maybe we're done with sad things, and maybe more sad things are on the way for us. We'll never have control over God's plan, and darn it all, it doesn't make sense to me right now. Maybe it will someday, but for now, what I can control is me. So I'm trying to change things up. Trying to be positive. Trying to see what it is I'm supposed to lean. Trying to be like Betsie ten Boom and thank God for the trials he's given me. (And holy moly, did it feel strange the other day, saying "Thank You for Rosie's CF.") I still wish it were different. I wish Rosie didn't have to suffer so that I could learn, because that feels so lopsided. But I know that somehow, it will be for her good, and mine and Bryan's too.

rosalind's story: the part where nothing goes right

I've never felt more clueless than I have over the past three months. What was the government thinking, letting me have a baby? I have no idea what I'm doing. I'm not saying that's the government's fault. But I definitely feel like someone, maybe some kind of an entity or something, should have stepped in and been like, "You're hopeless, lady."
Not that I didn't try. I read books. I love books. I read about childbirth, fetal development, what to expect in the first year, theories on colic and how to calm fussy babies, a disturbing pamphlet about children's rashes, and nine million blog posts entitled "What I Wish I Would Have Known Before Having A Baby," or something similarly titled (and equally unhelpful. But still expect one of those posts from me soon anyway). I felt prepared. I felt like I was ready. I felt like I'd done all I could.
And then I had a baby.And suddenly I was in a maelstrom of diapers and burp rags and nipple cream (sorry for saying "nipple") and feetie pajamas and swaddle blankets, getting thrown around and trying to grab onto anything to steady myself and coming up with empty hands and no ideas every time I tried.
"Babies should eat for about fifteen minutes each side and fall asleep.
But Rosie eats for an hour and a half and is still hungry...

"Babies should gain four to seven ounces a week."
But Rosie hasn't gained that in a month...

"Listen: if baby's breathing sounds labored, immediately take baby out of the sling and reposition."
But her breathing always sounds like that...

"Your baby should be filling three diapers a day."
But Rosie fills at least fifteen...

I turned to more books after I'd been home for a few weeks and nothing made sense. "Everyone else who has ever had a kid has done this," I remember thinking. "I must be doing something wrong." I ordered "The Womanly Art of Breastfeeding," thinking I didn't know how to feed her or read her cues. I ordered "Babywise" and "Healthy Sleep Habits, Happy Child," thinking I didn't know how to encourage her to sleep more than fifteen minutes at a time. I called nurses and doctors and saw lactation consultants and nothing and no one, and I mean nothing and no one, helped.
Nothing.
And no one.
I got a call saying Rosalind's newborn screening had come back abnormally, and it still didn't hit me even then that something might be different about her. I thought, for seven weeks, that I was the only incapable mother on the planet. If you have kids, I probably called you or emailed you or texted you, asking about your experience to see if any of it related to mine. If you're on my baby forum, you probably read post after post from me asking question after unanswered question. And if you're my mom or my sister, you definitely heard from me once a day. Of all the information I gathered, it never occurred to me that I wasn't the problem.
And that, my friends, is a hard place to be.
Rosie's second screening came back abnormally too, and we knew we'd have to go in for a sweat chloride, the most decisive determinant of cystic fibrosis. Even then though, I wasn't worried. Sixty-five percent of the time, the sweat chloride comes back normally. But Katniss and I haven't had very good luck with odds lately.
When I got the call about the sweat chloride being positive, I cried. For a while. The unattractive kind of crying where your lips are peeled back and your nose is scrunched and you're not wearing any make-up after the first two minutes.
And isn't it strange when you hit the point where you know you're done crying, and you don't know what to do next?
That's a hard place, too.
It all makes sense now, though. Rosie couldn't eat because she can't regulate breathing and swallowing. Rosie filled nine hundred diapers a day because she can't digest food on her own and everything she ate went straight through, kind of like her intestines were a slip 'n slide on the downhill and her food was a sumo wrestler covered in body oil. Rosie's breathing is labored because her throat collapses with every breath she tries to take. Rosie couldn't gain weight because everything, and I mean everything, passes straight through her without medication. (See sumo wrestler analogy above.)
When I think about how awful it must have been to eat and eat and eat and eat and eat and still be hungry but too tired to eat some more, I feel like a failure. I feel like I should have known something much bigger than reflux or diarrhea (sorry for saying "diarrhea") was going on.
My baby was hungry and I couldn't feed her.
You guessed it. Hard place.
I often wonder what mothers did, back before anyone knew what cystic fibrosis was, or what it meant for tiny bodies. What must they have thought, those mothers,feeding their children as much as they could possibly produce, and watching them starve to death anyway? And how confusing must it have been for those babies, doing everything evolution had programmed them to do, and growing thinner and thinner until they had no energy left to try and eat anymore?
I'm so glad it's the year 2013. I'm grateful for enzymes that help me digest food, and grateful I can give them to Rosalind. Grateful they've discovered the CF gene, and grateful for all the work the foundation is doing to correct it and find a cure.
Oh, and for all of you who have said, "Let me know if I can do anything." I'll be coming for you.

rosalind's story: the part where i have a baby

Last year was hellish. And I mean hellish in its most serious terms. Not in terms like, "Oh, that subbed toe was hellish," or "Waiting in line at the Wal-Marts is hellish."
I mean in terms like, "Oh, we found out I was pregnant a few weeks before both of our final semesters of school (his law, mine English), and he spent the entire summer studying for the bar, and then he actually had to take the hellacious test, and then we moved to another state, and then his second oldest brother died, and then his oldest brother died, and then my grandma died, and then I went into labor three weeks early, and then we found out our baby had cystic fibrosis, and then we found out our cat had heart failure and a few weeks to live, and then we found out our baby had tracheomalacia, and then we curled up on the floor and stayed in the fetal position for the next seven years sucking our thumbs and asking for my mommy."

That's what I mean by hellish.

Rosie came three weeks early, which was insane. Babies in my family don't come early. My siblings and I took our sweet time and came from two days to two weeks later than our due dates. My dad was three weeks late. My sister's babies would still be in the womb if she hadn't been induced two weeks and one week after their due dates. So... yeah. I was planning on having my baby (which the ultrasound tech also told us was a boy, by the way) sometime around the last week in January.
When I started having regular contractions bright and early on a Tuesday morning barely halfway through December, I figured they were just my Braxton Hicks increasing in intensity a little. I puttered around the kitchen, making some freezer meals, and texting my mom things like, "Did your false labor hurt?" "Did your false labor make you stop and sit down?" "Did your false labor catch your breath in your throat?" "Did your false labor make you want to put a tongue depressor between your teeth and scream bloody murder?"
Everyone told me that when I was in labor, I'd know for sure. And my mom's first labor lasted a grand total of six hours (you can be bitter toward her about that with me, if you want). So contractions three weeks early, six minutes apart, that are making me clutch the counter top and close my eyes? Must not be labor!

Oy. #superfirsttimemom

The next day, I had an appointment with my midwife, which got my husband off my back, because seriously, how many times did I have to tell him I was not in labor before he stopped freaking out and let me writhe in bed in peace? Sheesh. My midwife hooked me up to a monitor and said, "Yup. Labor. But you could be doing this for another week." So I went home.
Bryan called me when I was just about home and I answered the phone very sweetly in a sweet voice and said sweetly, "WHAT!" And he said, "Whoa, what's wrong?" And I replied in very dulcet tones, "WHAT DO YOU THINK?!?"

Child labor: bringing out the best in women since Adam and Eve.

Bryan decided to meet me at home, and I said, "That's dumb, I'm going to stay like this for the next month!" and the butthead didn't listen to me. So we chillaxed at home for the next few hours while I did some more awesome writhing in bed. I tried to time my contractions, but got confused, because they were lasting for about five minutes each, at which point, Bryan very rudely insisted I call my midwife, who then told me she'd meet me at the hospital. Even though I wasn't in labor, the worry warts.

Six hours later, we had a baby. And my dear husband, who runs ultramarthons (as in 52.4 miles with 12,000 feet in elevation in eleven hours) and compared his first experience to what he imagined childbirth to be like, will never again make that comparison.

my sweet rosie

My baby has an incureable genetic disorder. And a congenital throat disorder.

But it's okay.

No, really. I mean, yeah, there are parts of this that suck. Like that phone call from her doctor where he said, "I don't have good news," that sucked. And the part where I didn't see my husband for a month because I stayed my family while we figured out her treatments? That wasn't so great. And watching my baby's ribs suck in and seeing her arch her back and throw back her head as she struggles to draw a breath and can't? That's the absolute worst.
But other than that, it's okay.

Mostly.

It's much better now that we know. When she wasn't gaining weight even though she ate all day and wasn't sleeping even though she was exhausted, that was worse. When nothing I had read or researched was jiving with my baby's behaviors and I felt like the world's most incompetent mother, that was worse. When she couldn't breathe and we took her to the ER and were told that nothing was wrong even though we 100% knew something was, that was way worse. But now we know.
Rosie has cystic fibrosis. Rosie has a genetic life-shortening disease. Rosie also has tracheomalacia. Rosie has a floppy throat that can't stay open for her to breathe. Rosie is being given more medications by her parents than most people pick up from the pharmacy in a lifetime. And she's not even three months old.

But you know what? We caught it early. We're managing it. And with any luck (even though luck has most definitely not been on our side so far because seriously, couldn't she have been one of the 2,999 people out of 3,000 that doesn't have cystic fibrosis instead of the one that does? And on top of that, did she really have to have a throat issue that compounds the complications of an already difficult condition?) her life will be normal, even though her daily routine must be different.

And boy, will it be different.
And I suspect that's the hardest part. Knowing just how different life will be. Different from what I expected, hoped, dreamed, wanted, prayed for. Rosalind's life won't be what I wish it could be. And my stomach falls out of me every time I think about it. My life won't be what I imagined it would either. And how selfish do I feel, thinking about the trials this diagnosis will bring me, when I know the hurt will be completely hers and not mine? Pretty darn selfish. But still, a small part of me, when I'm not looking at her and soaking in absolutely every second with her and every inch about her that is possible, I mourn for the life I wanted. I do. I'm trying to send my thoughts down an alternate route, one with detour signs and turn after distracting turn. I'm failing. But I'm trying.

And it's really okay. I think. At least for now, because the not knowing, the uncertainty, the question of how much longer I have to look at her face, her cheeks, her tummy, her fingers, her thighs, her hair, her furrowed brow, her dimple, her toes, her chin(s), her lips, her ears, her eyes... it makes my baby, who everyone said I would love more than I could fathom and I didn't understand how until the first time she looked at me, really saw me, and I really saw her, all the more precious to me. I love my sweet Rosie. I truly can't believe how much and how fitting the phrase "so much my heart could burst" really is. We're not part of the 2,999 out of 3,000 but we have her. And she has us. And even though my heart is breaking, I get to hold her and be her mom.

And that's how it's okay.