Sunday, March 24
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.
Thursday, March 21
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.
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.
Friday, March 15
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!
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 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.
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.