Category Archives: Uncategorized

Rethinking What It Means To Finish

rba1_03

I’ve realized lately that I’m not a finisher. At all.

Oh, I start things well, eagerly and enthusiastically – usually when I’m manic and full of optimism, seething with vim and vigor and the ridiculously strong belief that I can get things done. In fact, I am a terrific, world-class starter! I could give starting lectures, or write a book series: How to Start Things, in Five Easy Steps. In the past year, I have set out to train for a half-marathon, started a business, for Pete’s sake, committed to write weekly blogs, made ambitious housekeeping schedules, and given myself strict work/leisure routines. Sounds great, right? I may just be the coolest, most put-together working mom in the history of the universe, right?

Except I ran on the treadmill for six minutes one day, walked briskly for twenty minutes the rest of the week, and decided that a half-marathon would be too likely to make my lungs explode and my toe nails fall off. It took me only seven days to quit that goal entirely.

In the same way, I spent a weekend feverishly working on an idea for a new business. I designed an entire website, joined the local Chamber of Commerce, did the paperwork to start an LLC,  created a Facebook page, and launched several ad campaigns. In one weekend. Granted, I was riding the manic train at the time – sleeping about four hours per night, forgetting to eat, freaking Dustin out with my vacant, wild eyes, etc. – but still. I was so exhausted by Monday morning, and so discouraged by my inability to attract customers, that I just stopped altogether. I’ve barely worked on my business since.

As for all the other things, well, my plans have gone much as you might expect. This is my first blog entry in months. My housekeeping schedule now consists of loading/unloading the dishwasher. When I can, that is. (Sorry showers and toilets – I’ll get around to you at some point. Stairs, let’s be honest, you’re not going to get vacuumed.)  And my lofty ambitions to achieve a healthy work/family/leisure balance? Well, let’s just say that the other day, I was toiling away on my computer when Penelope grabbed my face, physically turned it towards hers, and tearfully yelled at me to listen to her words, make her a sandwich, turn the Curious George Christmas special back on, and for the love of all that is good change Malcolm’s diaper! My daughter shouldn’t have to yell at me to get my attention. My four-year-old shouldn’t have to be the one to tell me that my baby has a poopy diaper, and has been reeking for the last hour. Something is very wrong with that picture.

What became of all the amazing things I started? Why couldn’t I finish even one of them? I wish I knew. I wish I was a finisher. I saw a Facebook meme the other day that slapped me in the face. It said “I know how it feels to quit. Now I’d like to see what it’s like to keep going.” What is it like to keep going, after all? What am I missing by flaking out every time something gets hard or boring or inconvenient?

If I’m honest, there’s another, perhaps more troubling side to that question as well. Why one earth am I attempting to add all these things to my life? Why am I effectively setting myself up to fail? I’m the mother of two children, after all, one of whom requires constant care, vigilance, and medical attention. I’ve got to get Malcolm to multiple appointments each week, make sure he’s not fighting infection, give him his medicine, clean his feeding tube…sometime I feel like I am single-handedly responsible for just keeping him alive. That’s a lot of pressure, I can tell you. I’ve also got to get Penelope to and from play dates and back and forth from preschool – not to mention deal daily with her enormous mop of hair! Where did that hair come from, by the way? I’ve spent my whole life trying to tease up my dead-straight coif into an acceptable level of volume. How did my daughter end up with an unruly, gorgeous mane of curls?

I’m a working mom, as well – the managing editor of a large website, with a lot of responsibilities. And I’m trying to keep on top of my own health. The truth is that Bipolar disorder takes a lot of effort to manage. A lot more effort than I can give it at times. And to add insult to injury, I have no molars right now. Okay, that’s an exaggeration: I still have three brave, uncracked little souls up top! But I can’t chew things properly. I deal with chronic pain. There’s a lot on my plate, in other words. Why do I feel like I need to be adding half-marathons to the mix? When is enough, well, enough?

I think there is a simple answer, actually. I don’t feel like I’m doing enough, planning enough, working enough, mothering enough. I don’t feel like I am enough, a lot of the time.  And so maybe, just maybe, if I throw that marathon on the pile, or sign up for yet another commitment I can’t fulfill, I’ll finally make the grade. This is a common curse for women of my age and generation, and I’m not the first to blog about the tremendous pressure to have everything together – not by a long shot. We all feel like we need to be superwoman. And every time I read a Facebook status where someone talks about their amazing new exercise regime, or their amazing (frankly ridiculous) new caveman diet that is changing their life and saving the planet, or the amazing new Pinterist birthday party they are planning for their child, I start to panic a little. Because I don’t have time for fad diets and life-changing exercising and cupcakes that look like little owls. I don’t have time to be that amazing. I’m barely keeping diapers changed around here, people. Penelope sometimes has popcorn for dinner. All my laundry all goes into the washer together (whites and colors together, in one delightfully unsegregated load) and afterwards, I don’t hang up  a single piece of lingerie to air dry. Not even one.

I’m starting to think, as I write all this down and take the time to process, that my trouble finishing is all of a matter of how I view things. Maybe I – maybe all of us – need to look at finishing another, more constructive way. Maybe some days, finishing looks like two kids that have clothes (or at least diapers) on, and have eaten enough to fill their tummies. Maybe finishing looks like keeping up with work email and paying the mortgage on time and remembering to go to the bathroom once in a while. Or maybe finishing just looks like surviving another day however we can do it. Maybe finishing, in reality, gets all confused and muddled up with failing, because we don’t give ourselves credit for how much courage it takes to live, and keep living.

There are so many things I’d like to do in my life. So many good habits I’d like to create. I would feel so good about myself if I drank enough water every day and didn’t fill up on empty calories (Cheezits. KitKats. Peppermint M&Ms. Y’know. The good stuff). I would feel a great sense of accomplishment and peace if I blogged every week, and honed my craft. I would love to meditate every day and train my body to do great things – climb mountains and run marathons and swim channels. But for now, I’m deciding that for once in my life, enough is enough. I don’t need to finish anything major right now. I’m doing enough, planning enough, mothering enough.

Right now, I am enough.

Some Are Born To Sweet Delight

It’s hard to explain the deep satisfaction I’ve experienced over the last few weeks, watching Malcolm start to crawl, and then get up on his knees, and then pull himself to standing with all the concentration and force of a new recruit passing his Army physical. It has been astounding and overwhelming, like watching the evolution of man on fast-forward. I’ve been privileged to witness an amazing metamorphosis as this – my own little underdeveloped creature – has forsaken slithering on the ground (you might call it army crawling – I prefer slithering) and gone on to stand upright, sounding his “barbaric yawp over the rooftops of the world.” I have a curious feeling of unreality.  In fact, there are times when I wish Malcolm would regress to a time when he did not do pullups with my feet or yawp so barbarically.

All the while during this transformation he’s been huffing and puffing like the Big Bad Wolf, not because he’s craving a little pork, but because his heart (much like an amoeba) has not yet received the whole ‘evolution’ memo. This kid is unstoppable, and I’ve started recently to wonder why. It’s not because he’s a fighter with a will of iron. I mean he might be, later on, but that kind of motivation seems out of the reach of an infant. I’m tempted to think that his persistence is due entirely to the fact that he doesn’t know any better. No one has told him he’s lucky to be alive. As far as he knows, every kid has got a cool zipper scar and a raspy voice from one too many intubations. In short, no one has ever let the cat out of the bag; he doesn’t know that the things he’s doing simply can’t be done. And I’ll be darned if I ever let someone spill the beans.

Ten years ago – five years, even – the survival rate for hypoplastic left heart syndrome was pretty grim. In fact, many parents chose compassionate care (letting the baby die naturally over a period of weeks) over surgery. When Mal was first diagnosed in utero, both the cardiologist and the perinatalogist offered us the option of an abortion. I remember staring at the cardiologist and asking “Why? Why would you terminate a pregnancy if there were surgeries available to fix the problem?”

He shrugged his shoulders. “Some parents don’t want to go through the trauma, or let their baby suffer.”

“We’re not those parents,” I replied. I was unable to say anything more, but I tried, with my tone, to convey something larger: This child, like all of humanity, has the right to suffer and thrive. Let him have his birthright. I rejoiced to see a returning spark of fire in his eyes.

I’m grateful, now more than ever, that we chose the hard way out for Malcolm. Frankly, I think the bulk of the suffering in this situation so far has been on my shoulders, and Dustin’s, which is just the way it should be. Mal is blissfully unaware of the cost, exhaustion, and unbelievable heartache set into motion by his birth, altering the life of his parents, his sister, and all four of his grandparents in a way we can never recover from (nor would we wish to). My heart tells me that this is a special child. The great, rather morbid poet Blake tells us “Some are born to endless night; some are born to sweet delight.” I think that’s an oversimplification (and hard luck on the endless night folks), but he’s right, in a way. Only I think some people are born to both destinies, and little Malcolm Howard is one of those people – shrouded in darkness and suffering, lit up with joy and delight.

No one has told him yet that pain can’t walk with joy, and so he accepts them both with equanimity. He loves people; he loves life. He keeps on slithering until he has the strength to stand. And soon, I hope, he will run unswervingly into a bright and unusual future.

The Myth Of ‘Fixed’

I’ve just spent the last half-hour staring blankly at a magazine article entitled “The Myth of ‘Fixed’.” I want to stop, because I’m starting to feel that sandwich I ate for lunch make an encore appearance, but it’s like watching a train wreck, or an episode of Honey Boo-Boo; I can’t turn away. And every few minutes, a phrase leaps off the page and whacks me solidly between the eyes:

“…about 85% of the roughly 40,000 babies born each year with congenital heart defects in the US will live to see their 18th birthdays…”

“not so long ago…kids born with hypoplastic left heart syndrome would simply not survive – the oldest person living with this defect is in their early 30s…”

“On top of the multiple surgeries, heart rhythm problems, developmental and psychological issues, strokes, and other medical issues they may endure, adult survivors also contend with lapses in care, insurance issues, doctors who are unqualified to handle CHDs, and a variety of other unique concerns.”

The myth of ‘fixed.’ It’s a lovely myth, and one I’ve been holding on to for over a year: Malcolm is getting fixed, and then he’ll be fine just like all the other kids and we’ll move on with our lives. But, like Atlantis and fat-free desserts and “God will never give you anything more than you can handle” (a detestable phrase), it is just a myth after all. I realize, now, that Malcolm will never be really fixed, not completely. Oh, he’ll be patched up and jury-rigged. He will be given second and third and fourth chances at life, and odds are he’ll live to a respectable age with his wonky, duct-taped heart valiantly pumping away. But nothing is going to change the fact that his heart is a hot mess. Nothing can alter the reality that valves and arteries are in all the wrong places, and one ventricle is worse than useless, and the whole thing looks like it was assembled by God’s three-year-old nephew, Rick.

I’m scared.

Repair of congenital heart defects is such a new science that there aren’t even cardiologists who specialize in care of adult survivors. That’s not a thing. Traditional cardiology students receive, on average, six hours of training in pediatric heart defects. Six hours. That’s over seven years of med school. Which means that adults with Malcolm’s condition currently have no one to go to when things go pear-shaped. Add that to the fact that no one knows what the heck happens to these kids after they turn forty (at the most), and you’ve got a recipe for disaster. Will Mal live to be a dad? Or a granddad? No one knows.

I usually try to stay pretty positive, first because it’s better than wallowing in a tepid pool of mud and despair, and second, because the minute I say anything negative or sad I get blasted with the deadly ray guns of good intentions. Horribly hurtful little word projectiles, like “Just trust God,” and “Malcolm is in good hands” and “It doesn’t do any good to worry about it” and “Try to stay positive, because it’s better than wallowing in a tepid pool of mud and despair.” What they’re really saying is, “You are making me uncomfortable. You are not playing the game. We’ve all signed the contract that says we have to make the best of things, and you are in violation.” If there is anything that people hate, it is the person who refuses to keep up appearances when life becomes bitter. That’s why everyone raves about the cancer patient who stays strong and cheerful; everyone likes the widow who learns how to move on with life, or the Joni Erikson Tada who forges ahead in the face of terrible suffering. I get it. Redemption is great – it’s the best, really. We all want to see something beautiful grow from the dung hill of life every once in a while. But believe me, sometimes dung is just dung, and you have to live with the smell of the whole putrid, rotting mess for years before it starts to resemble fertilizer. I’m going to have to tell my son someday that his future prospects are unknown, that what awaits him may not be college, marriage, and kids, but a long, agonizing wait for a heart transplant that may never come, or a debilitating stroke, or a long, drawn-out convalescence. And that is NOT okay. And I am NOT going to act like it is.

Do you know why I really like Jesus? I mean, apart from his deity and perfection and all that stuff? I like Jesus because his first words to the widow who lost her only son were not “Can’t you have a little faith?” or “He’s gone to a better place.” I like to think he enveloped her in a big hug and held her tight and let her sob it out before simply saying “Don’t cry.” I like Jesus because when Mary and Martha told him about their brother’s death, he sat down with them and bawled like a baby. Jesus knew that this stuff wasn’t okay, and even though he was in a position (none better) to know that everything would turn out for the best, he didn’t force that knowledge on anyone. He just let them cry, and joined in for good measure. Do you know what I think? I think God is okay with bitterness and anger and despair. God can handle it, believe me. It’s we who are too fragile to let it near us, too weak to grasp the hand of suffering and walk with it for as long as we must.

I confess, life is hard right now. I feel scared and hopeless today. Malcolm is…well…the sweetest creature you could ever imagine, with two cute teeth, one on top and one on the bottom, and two lopsided dimples, and a weird cowlick that parts in the front and makes him look like Thomas Edison. I love him, and I love his weirdo personality, and I love his crazy, stupid, ugly mess of a heart.  I wish he was okay, but he’s not, and neither am I. We might not be okay for a long, long time, and that’s the way it is right now. I am done buying in to the myth of ‘fixed.’ So I ask, will you let us be broken? Can you handle that?

I know Jesus can, and I think I can too.

What’s in a Name? (A Lot)

Baby naming is a serious, million dollar industry these days. It is also a serious source of anxiety for parents to be. There is too much time invested and too much pressure now to come up with the perfect name. Do you know how many hits come up on Google when you search “baby names?” Neither do I, but I bet it is a lot. More than five, certainly. Probably even more than ten.

I fell for the baby-name madness just as badly as everyone else. Fortunately, Dustin and I have always shared fairly compatible naming conventions. For example, neither of us like the now ubiquitous trend of using surnames as first names (let me just issue a blanket apology to all you McKenzies, Taylors, Carters, and Emersons out there – I still love you). Likewise, neither of us can stomach unisex names. Frankly, I’m terrified on them. I remember freezing upon receiving a class roster during one of the bizarre, lost years of my life when I worked at a preschool. My thoughts were along these lines:

“Brayden. Alright, that’s a boy’s name. One boy so far. No, wait, there’s a ‘Y.’ It must be a girl…or is it a boy? Does the ‘Y’ rule still apply? Is there anything particularly feminine about the letter ‘Y’? What is the meaning of life, after all? Are we all just candles in the wind…?” At this point I stared poignantly at a Fischer Price firetruck and became lost in revery. Fortunately, my subconscious was now thinking about Elton John. I started humming Crocodile Rock to myself and was able to move on. “Charlie…that’s got to be a boy, right? Right, world? RIGHT? No, it appears to be a nickname for Charlotte. C’mon, girl, you can do it. Take it one moment at a time. Life is a marathon, not a sprint. Next name, next name. Next name is… Jayden?!!! ARGHHHH!!” (I stab myself with a pencil).

Trying to decipher the make up of your preschool class shouldn’t initiate an existential crisis, and yet that is what we have come to as a society. A whole generation of Katnisses and McKeltins and Kaitlynns are marching grimly into the future. They will rule the world someday. Someday, we’ll have a president of indeterminable gender called Bricker. It’s a grievous inevitability.

But I digress.

As I mentioned above, Dustin and I have similar child-naming conventions. When I was pregnant, we worked hard to find names that were reasonably uncommon yet recognizable and easy to pronounce, and with only one acceptable spelling. The names we chose for our children, of course, were Penelope and Malcolm; familiar, rare, and interesting without being shocking. Timeless. A classic and foolproof direction, no?

Ironically, nobody can pronounce Penelope’s name correctly – usually instead of rhyming ‘lope’ with ‘soapy’, they rhyme it with ‘rope.’ Alas, alack. I blush for the state of our educational system. Doesn’t anyone fight sleep while wading through the Greek classics anymore? Are there no people left on earth who remember half-heartedly skimming through their dogeared paperback edition of the Odyssey on their way to English 101?

Yeah. The name Penelope didn’t turn out as perfect as we had hoped. As for Malcolm, I’ll be darned if anyone remembers to spell it with the second ‘L.’ Ever. It’s always Malcom, which sounds less like a beautiful ancient name and more like a cable TV/internet provider. For all our care, we definitely struck out in the name spelling/pronouncing department, and struck out hard. A government official once asked us the names of our children. My poor husband had to spell each name aloud at least three times, and when the guy finally figured everything out, he said, “Boy, you sure used unusual spelling for these names!” If looks could kill..over the phone…

I know better now, but in the beginning I actually felt pretty smug after choosing Penelope’s name. People gushed when they heard it; they oohed and aahed and told me it was  “original” and “beautiful” and “adorable.” All of this pleasant ego-massaging convinced that my daughter would shine like a jewel among the common rabble in her generation, and that the glory would reflect back onto me, her educated and brilliant mother, the one woman who had come up with the best name in the world before anyone else could sully it.

Naturally, my punishment from the universe for this hubris was swift and in accordance with the gravity of my sins; shortly after my little girl was born, one of the Kardashians also had a girl and named her Penelope. It was Kim, I think. Or maybe Khloe. They’re probably interchangeable – when you want a new one you just swap out the head, like with Lego men. Tina Fey also used the name for her baby daughter that year. I like Tina and all, but I could have cat-scratched her eyes out when I found out. I was actually devastated. I cried. I cried because because someone else used a sweet little name before I could even start the patent paperwork. That’s how far my baby name madness had progressed.

The point of all of this is no matter how careful you are, no matter how clever you’ve been, you can’t think of everything. Something will be off about your child’s name. It will rhyme with a rude body part or it will be impossible to spell. Or worse, suddenly every pregnant woman in the world will be hit with the simultaneous desire to also name their baby The Name of Names – that amazing name you especially picked out when you were in high school and have jealously guarded since that time so no one will steal it. Those things will happen. They will. But you and your kid can get through it. And with only a few years of intense therapy! Unless you’ve christened your baby something truly awful, like Seven or MoonUnit, go easy on yourself. Stop the baby name madness.

Calm down, take a breath, and hide your copy of 1,000,000,000,000 Classic Baby Names. Relax and enjoy the rest of your life. And let this be a warning to you: my lasting punishment from the baby naming gods is to constantly hear, “Her name is Penelope? That’s great. Just like the kid of that Kardashian girl. Y’know, the one with the black hair. Married to that celebrity actor. Or rapper? You know the one I’m talking about.” At which point I stab myself with a pencil.

FullSizeRender

Big News

Monumental news, everyone. This weekend, Malcolm learned to roll over onto his stomach and move both of his arms in front of his body by himself. Call the mayor and break out the ticker tape for a city-wide parade. MALCOLM ROLLED OVER BY HIMSELF.

Okay, I know this sounds pretty mundane, especially for a seven-month-old who should have been rolling independantly for months already. But it was a big deal for him. And a big deal to me. Why? Why am I celebrating the achievement of a very common, fairly basic infant milestone, you ask?

A little over a year ago, on April 16th, 2014, Dustin and I went in to the obstetrician’s office to have a routine, 20-week ultrasound. We were extremely excited to see our baby moving around and even more excited to find out its gender. We didn’t much care whether it was a boy or a girl, but either way we really wanted to know. There were crib sheets to be bought and clothes to collect and blankets to be crocheted, and we didn’t want to mess around with boring neutral colors any more (besides, white clothes are incredibly impractical and – I cannot state this strongly enough – nobody looks good or has ever looked good in pale yellow).

We arrived at the clinic and settled in for the ultrasound, my bladder full to bursting, both our stomachs full of butterflies. The sonographer messed around, taking what seemed to me a lot of unnecessary pictures of toes and fingers and brain lobes and kidneys before she got around to the genitals and revealed that IT WAS A BOY! I had been pretty certain it was a girl, so of course I was shocked and happy and disappointed that I wouldn’t be able to use Penelope’s old clothes and generally overwhelmed and pleased as punch.

The rest of the ultrasound seemed unimportant and anticlimactic. I desperately wanted it to be over, so we could go call our parents and tell them the great news. But the tech continued to take a tiresome amount of pictures, especially of the baby’s heart. She stopped making casual chit-chat. “I can’t get a good enough angle,” she kept saying, and I was too polite to say “I don’t care what angle you get, just hurry it up lady, because I have to pee and I’ve got people to call.” She kept trying for what seemed like hours, frowning in concentration. And after an eternity of bladder discomfort, she finally let us go out into the waiting room.

The nurse called us back after a few minutes of waiting, and my doctor met us in the hallway, which was weird, because usually I would have to pee on a stick and get weighed and have my blood pressure checked before seeing the actual doc. He sat us down, with no preliminary small talk or pleasantries, and cut to the chase. “There may be something wrong with the baby’s heart,” he said, “I don’t know how serious it is, but I need you to go up to Portland to see a perinatologist and have further studies done. Right now.”

The smile melted off my face. I met Dustin’s eyes briefly. They looked shocked. Concerned. Scared. I managed to look at the doctor again. “Is he going to live?”

He shook his head. “I don’t know,” he said. “I hope so.” And then he stood up and ushered us out of the room and gave us a map to a hospital in the city. The last thing he said was “Go now. They’re waiting for you.”

I held it together until we got into the elevator, and then the tears started flowing. Dustin was brave, trying hard to be supportive.

“He said there may be something wrong with the baby’s heart. It might be nothing. Or it might be something that doesn’t even need to be fixed. We don’t know anything yet. Don’t lose hope.”

The rest of the drive we sat quietly, stunned into silence. We arrived at the hospital and were ushered in to yet another dark ultrasound room. And for the second time that day, my stomach was covered with cold, gelatinous muck and for the second time that day, we saw our baby up on a screen, moving around, sucking his toes.

The sonographer poked around for ages, taking various pictures of Malcolm’s heart. Hundreds of them. She was being very cheerful and normal, which I appreciated tremendously, and she managed to remain cheerful even when eventually calling in for reinforcements. Then there were two sonographers, pushing and prodding me, talking quickly in low tones, using words I didn’t understand. And then the second tech left to call in for even more reinforcements. While she was gone, I worked up my courage and spoke to the first girl. “My obstetrician just said there might be something wrong with the baby’s heart. Is there actually something wrong?”

“Oh, yeah,” she said, somehow still cheerfully. “There is definitely something very wrong here.”

My heart did a flip and then seemed to painfully fill my chest. “Is it really bad?”

She stopped what she was doing and shot me a kind look. “It’s complex,” she said firmly, and left it at that.

Soon, the perinatologist finally came in to talk to us. She told us what we already knew: that there was something very wrong with Malcolm’s heart. She explained that the defects were well above her paygrade, and that they would be calling in a pediatric cardiologist the next day to weigh in on the situation. I asked her if the defects were compatible with life, the question I had been dreading all afternoon.

“I don’t know,” she said, and grabbed my hand. “You…you need to prepare yourself for the possibility that the baby might die soon, or shortly after birth. I am obliged to tell you that you are still legally eligible for an abortion at this point in your pregnancy, and you will need to consider that option.” She rose to leave, and then stopped herself, choosing her words carefully. “All the rest of your baby’s organs are perfectly formed and completely normal.” She smiled. “That is a very encouraging sign. Let’s just see what the cardiologist has to say tomorrow. Get some rest.”

Dustin and I staggered out of the hospital and found our way into the parking garage. We sat, holding each other tight, huddled together in our stiflingly hot Jeep, sobbing uncontrollably. The only thing I could think was he doesn’t know he’s dying. Oh God, he doesn’t know he’s dying. He thinks he’s safe, that his mommy is taking care of things. He doesn’t know…

The next twenty-four hours comprised a true dark night of the soul. After a few hours of fitful sleep, I awoke at three in the morning, crying my heart out. I couldn’t see how things could turn out okay. Even if he could be fixed….even if he could live outside the womb…what would become of him? Would he be a sickly child and eventually pass away at age 10, or 16, or 20? Would he slowly fade away, waiting hopelessly for a transplant that never came? Or would I be forced to carry him to term, give birth, and hold him as his life ebbed away over a period of hours or minutes? What do you do with babies that die, I wondered. Should we cremate him, or bury him? Do you give a memorial service for a baby that only lived a few hours? My brain turned over and over, exploring each horrible possibility. Dustin held me tight. “It could still be okay. It might still be okay.”

“How?” I asked, bitterly.

“It could still be okay,” he said again. “Somehow, we’ll make it through.”

We returned to the hospital the next morning and sat wordlessly in the waiting room, hands clasped together. We were ushered back to the same dark room, where I was plied with the same sticky gel. The cardiologist – an odd little man – came in quietly and began to look at the images of Malcolm’s heart. For an hour, or more, there were whispered conferences between the specialist and the technician. They took recordings of the baby’s heart rhythms. They took three dimensional pictures of his heart from every angle. They used a special technology to watch the direction of blood flow from one chamber to another. And then the doctor turned off the machines and meditatively washed his hands. He walked over to my bed and began talking rapidly.

“So there will be three surgeries. The first one about six weeks after he’s born, and the second three or four months afterwards. The third will be when he’s three or four years old.”

“Wait,” we said, confused. “You’re saying he’s going to live?”

“Oh yes, of course,” he said, and continued, apologetically, “Now, he’ll be able to run and play and participate in gym at school, but I must warn you that he’ll never be able to compete in sports at a professional level.”

Sweeter words were never spoken. I processed them slowly. My son…would be taking…gym classes…? Gym classes. Because…because…he was going to grow up.

The rest of the appointment passed by in a blur. He was going to grow up. My baby was going to grow up. He would get his chance at life, just like all the other kids. It would all be very hard, of course, but HE WAS GOING TO LIVE!!!

The last year has been harder than anything I could have imagined. Four surgeries. Multiple hospital stays. Feeding issues, weight issues, vomiting issues. No sleep, no money, no time. But believe me when I say that nothing in my life will ever be as bad as that night when I thought my baby was going to die without a chance or a say in what happened to him. So when I say that this weekend he rolled over by himself, oblivious of his multiple scars and weird feeding tube, and freed both of his arms and grinned like the little maniac he is, I am talking about a major miracle. He may be a bit behind the other babies in things like sitting up and rolling and crawling, and he may be a bit beaten up and worse for wear, and we may be on first name terms with all of the doctors and nurses at the pediatric ER, but this little guy is growing up.

Go get ‘em, buddy.

 

 

It’s No Problem…

I have a problem.

I understand that this is not as exciting to hear as “I have a dream,” or “I have an unlimited number of free passes to the Blazer game” or even “I have an old bag of Pop Rocks in my purse,” so please try to check your disappointment and bear with me. My problem is as follows: at some point when cultivating a new friend (or reacquainting myself with an old one), I have to mention Malcolm’s whole…situation. I don’t mind saying that I have begun to heartily dislike the process. Not because I don’t want to talk about it, mind you. I have no issue discussing the matter. My dislike stems from the inevitable ‘frozen look of horror’ that I receive. For those of you who have never been on the receiving end of one of these beauties, imagine the ‘frozen look of horror’ as a startled, panicky grimace mixed with a hearty dose of pity and just a dash of embarrassment. It is invariably accompanied with a mumbled “I’m so sorry.” And sometimes even an occasional tear.

I totally understand that this is a natural reaction to hearing that a six-month-old baby has already had four surgeries, been cut open in 12 different places, and spent a quarter of his life in the hospital. I get that, I really do. It is utterly horrifying, when you think about it that way. But you know what? I DON’T THINK ABOUT IT THAT WAY. This is my normal, everyday life now, and to me it is normal and everyday. Frankly, I’m pretty sure that Malcolm and Penelope are going to grow up thinking it’s weird that every little baby boy doesn’t have a cute little (okay, huge) zipper scar on their chest.

My point is, I don’t want people to feel bad for me because I don’t feel bad for myself and – more importantly – I don’t feel bad for Malcolm. Receiving pity and concern just makes me feel kind of squirmy and weird. And guilty. I always start thinking about families that are actually suffering. Families that are literally starving to death, or which have lost multiple children or are raising children who will never reach adulthood. I feel bad for those families, and if I’m ever in their shoes, you better believe I’d consider feeling bad for myself. Similarly, if I got caught in a zombie apocalypse, I would have no qualms about indulging in a few existential ‘why me?’ sob fests. But for now, I’m doing just fine. Mal is going to be okay eventually. He’s a lover and a fighter.

I recently joined a support group for families of children with congenital heart defects, and I learned two very interesting things in the process. Number one: sharing a physiological defect with someone does not mean that you have anything else in common with that person or their families. And two: my family doesn’t need a special support group because we are already pretty darn supported. Really! Dustin and I have four able-bodied parents who have put their lives on hold to help out with childcare. I have several amazing girlfriends who will listen to me whine whenever I feel the urge. Malcolm’s got a plethora of surgeons, doctors, dieticians, and other specialists who are just a phone call away. We’ve received financial assistance from the state of Oregon, from the hospital, from fund raisers and even from complete strangers. So, you know something? We’ve got it easy. Sure our life is hard sometimes, but everyone’s life is hard, sometimes.  Someone has to clean the toilets at the airport. Someone has to handle the tarantulas at the zoo. And Kanye West actually has to get up every morning  and continue to be Kanye West. Food for thought.

So by now you might be asking yourself “What is the overall purpose of this blog? Why did I just read through this amazingly well-written rant? What can I take away from the experience?”

It’s simple. Primarily, I want to say “thank you” to everyone who has supported me into my current state of normalcy. Thanks to everyone who has brought a meal, or dropped by, or taken me out for a sanity-preserving coffee date, or prayed for Malcolm (and for Dustin and Pen and I). And perhaps more to the point, I want people to feel free to inquire after Malcolm (or me) any time they want. Please don’t feel bad for us. Or if you do, don’t put on an awkward, sad, frozen-fish face, because that makes me feel bad! If you’re curious, ask me questions. Seriously, ask me. Talk to me. Laugh with me. Bemoan the high cost of milk with me, if you want. You don’t even have to use a hushed tone, I promise.

In short, let’s just agree to leave all the pitying to trained professionals, like Mr. T.

 

Parenting: A Puzzing Paradox

I had an interesting epiphany recently, the kind of realization that can only hit you after a particularly toddler-heavy afternoon, when you’re curled up on a sticky couch like some kind of pathetic, world-weary fetus. It had been a rough day. I had been forced to listen to more of Elmo’s cloying, deranged voice than was ideal for maintaining an optimum level of sanity. My two-year-old Penelope was in the grips of a severe case of I-Do-It-Myself-Itis, for which there is no known cure. I had already taken all of the sweet, sweet Tylenol allotted to me for the day, and was trying to persuade myself that I’m not really all that attached to healthy liver function. And then it hit me: an epiphany. My own personal, life-altering epiphany. “Hey,” I called over to Dustin, who was lounging next to me in similar, stupefied daze, deeply engrossed in a game of Robot Unicorn, “having kids is better and worse than I ever thought possible. A LOT better. And a LOT worse.”

It’s true. Anything worth doing ends up feeling much different than you once imagined – far more affirming and exciting, certainly, and far more wonderful. But most worthwhile things also seem to be far more terrifying and disappointing and boring than promised. Far more…imperfect. For me, bearing and raising children has been the most surprising experience of my existence. I didn’t expect to become so vulnerable or exposed. I didn’t anticipate the hours of loneliness that would await me, or the intense, almost violent longing for uninterrupted sleep. I didn’t know that a skinny, squirmy, vomit-y little specimen of humanity would be able to twist my heart like damp washcloth and squeeze out hidden stores of anger, and joy, and deep, primal love. Nobody tells you this stuff when you get pregnant. There is no chapter in What to Expect When You’re Expecting about the profound, sometimes messy and disturbing alterations of mind, body, and soul brought about by parenthood. I know. I’ve checked. If I ever write a book on parenting, it will be entitled Warning: There is No Turning Back. Because – you know what? – there isn’t. No one is ever the same again after the first time they leave the hospital or sign those final adoption papers, scared and sore and sometimes blissed-out, clutching their own little precious bundle of bones and skins.

For my part, I was blind-sided by the hairy reality of motherhood. I guess I thought parenting would be pleasantly comparable to babysitting. Y’know, you show up, boil a few hotdogs, play hide-and-seek for an hour, and then stick a Disney flick in the ol’ VCR and collapse on the couch with a handful of fruit-roll-ups. Oddly enough, while I do plenty of collapsing in my official mom role, it turns out that I don’t get to walk home with a pocket full of cash after a full night’s work and watch Dr. Quinn, Medicine Woman or Family Matters with my best friend (in fact, there is a shocking lack of 90s-era prime time T.V. in my life right now). The reality of day-in-day-out parenting is that there is no vacation, and there are no breaks. I had plenty of energy in my babysitting days to construct mobiles and orchestrate elaborate games of Sardines, and I envisioned my future parenting style in much the same way. I fully expected to sit down with my kids and string necklaces of macaroni or take nature walks. I planned to generally blow everyone away by being the greatest, most involved mom in the history of the world. Real life, unfortunately, is much more complicated. Real life is not an episode of the Donna Reed Show, however much we all may wish for Donna’s neat, golden hair and crisp white apron. In real life, I am an extremely flawed human being, struggling daily with depression and chronic pain, doing my best to raise a kind, intelligent daughter and failing about half the time. My pre-child self would have been disappointed and a trifle disgusted if she could see me now – greasy, tired, un-showered and unshaved, slowly picking Cheerios off the floor one-by-one. But I know something now that past-Julie could not have possibly understood: parenting stinks, parenting hurts, and parenting is 100% worth-it.

I have felt silently guilty about this somewhat ambivalent attitude toward motherhood for a long time. Everyone talks so much about the new mother glow. You know, saying stuff like “you’ll never forget how you feel when you hold your baby for the first time.” Well, I remember exactly how I felt when I held my baby for the first time: panicky, sore, and hungry. Weepy. Hopeless. Scared.

Sometime during my pregnancy I had developed a rare condition called idiopathic condial hyperplasia, which roughly translated, means that one side of my jaw grew larger than the other side for unexplained reasons. It is an extremely rare condition – so rare, in fact, that I saw about 15 different specialists over a period of a year-and-a-half before someone even figured out what the heck had happened. The unfortunate effect of this random bone growth was that my teeth began to shift, ache, and break. I remember weeping a few days before my scheduled induction, telling Dustin it’s not fair. In my mind, my first childbirth experience was supposed to be magical, and now I felt sure it would be horrible. Anxious, hormonal, and suffering a great deal of pain, I spent the first few days of my baby’s life crying hopelessly into a lumpy, hospital-issue pillow. Needless to say, it was not the spiritual bonding experience I had expected. And things went pretty much downhill from there.

The first year of Penelope’s life – a year I had hoped would be filled with cuddles, songs, and fun new experiences – was the worst time of my entire life. I may have had just the teensiest bit of post-partum psychosis (don’t tell anyone, but I did ask Dustin if we could give her up for adoption). Baby-blues are not uncommon, I know, but they were amplified in me by the fact that any eating and talking I attempted was excruciating. I dropped down to skeletal 98 pounds, and we spent every penny of our savings trying to find answers or a solution for my chronic pain. I wanted to die.

The worst part of the whole experience, however, was the enormous guilt that I carried around every day. Here I had this adorable, loving little spit-up machine, trusting me to develop her language skills and nurture her ability to make emotional connections, and I could not engage with her. Oh, I went through the motions. I scrupulously made sure that her physical needs were met. But I – Julie – had completely checked out. The lights were on, but nobody was home, folks. It took me a very long time and almost unendurable heartache to creep and crawl my way back up to the surface world and join the rest of the living, and it is a process I wouldn’t wish on my worst enemy.

I don’t know how I survived that year. I don’t know how Penelope survived it, either. But you know what? I did. And she did too. We made it through by the grace of God and the skin of our teeth. Penelope is now two-years-old, and the craziest, sweetest, smartest little kid that has ever walked the earth. She is resilient and independent – good skills to have on hand when you have a basket-case for a mom. And yes, I’m still in constant pain, and yes she drives me absolutely crazy. There are days when my heart is full of love and sunshine and I dance around like freakin’ Maria from the Sound of Music, but there are far more days when I feel like I absolutely must relocate to Alaska or check into a nunnery for a while. This wide disparity has often troubled me, and I think that’s why I was so blown away by my recent epiphany. The truth is, nothing worth having in life is easy, and imperfection is par for the course. Parenting is both the worst thing ever and the best institution known to man, and that’s okay. I had to have a full-blown, two-by-four-to-the-head realization to understand that this paradox is acceptable – normal, even – and to give myself a little grace on the hard days.

Sure, Penelope didn’t have an ideal first year, and her toddler-hood hasn’t exactly been textbook-perfect either. But – even though I may not take my daughter to story time at the Library as often as I should, have never once offered her two different kinds of fruits and vegetables, and leave all forms of craft-making strictly to the good folks at Sunday school – she is turning out to be a pretty great person. I love that little girl to pieces, and she loves me back. Love is all we need right now. Lots of love and hugs. And a well-regulated dose of Xanax now and then.

 

 

Where’s the Love, Walgreens?!

This morning, like many mornings, Penelope and I decided that we needed to wake Daddy up a bit early and go get a doughnut. There was a chocolate-covered, cream-filled pastry calling my name loudly and insistently from afar. In an attempt to combine business with pleasure, I suggested that we all stop by Walgreens on the way to get our treat and pick up one of my monthly prescriptions – a prescription, incidentally, that I have bought from Walgreens every month for nearly seven years. Because Dustin recently switched jobs, we are relying on a Cobra insurance plan to get us through the next couple of months. Our coverage began on December 1st, and though we haven’t received our first bill, Blue Cross assured us that all coverage would be retroactive.

We pulled up to the window at the drive-thru Pharmacy and casually gave my name to the young, bored-looking clerk. Then we turned out attention to Penelope, who was throwing a fit in the back seat because – apparently – she was not digging the smooth tones of a Wham!-era George Michael. While assuring our daughter that “Wake Me Up Before You Go-Go” is not necessarily a cause for weeping, we realized that the clerk was saying something.

“Do you realize that your insurance has expired?”

She managed to instill those words with what I felt was an unwarranted amount of venom, but I like to think the best of people. Maybe she’s just mad that she has to reenter my insurance number, I thought. Dustin explained that we had recently transferred to a Cobra plan and handed her my old insurance card.

“This is expired,” she repeated coldly after a cursory glance. “I’m going to have to call them.”

That wasn’t the greatest news, because Penelope had started to call out shrilly for a sprinkled doughnut, but it wasn’t the end of the world, either. I don’t mind waiting very much, and we were in no particular hurry (well, the adults weren’t, anyway).

After seven or eight minutes, the pharmacy clerk hung up the phone and activated the speaker once more.

“Your plan expired on November 30th,” she said flatly.

Dustin explained again that our Cobra had kicked in on December 1st and would be retroactively applied to all purchases.

“Your insurance is expired” she repeated, “I can tell you about our discount programs for uninsured customers.”

At this point, we were cold, antsy, and desperately in need of fried, round pastries. Penelope the music critic, having exiled Wham!, was now petitioning for an immediate cease to all Led Zepplin and Rush. Things were getting tense.

“We’ll just pay for it out-of-pocket,” I said, “How much?”

She named the price in a skeptical tone, evidently thinking that people like us – you know, uninsured slobs – must also be broke. We paid her quickly and drove away, both of us feeling  vaguely upset.

I don’t know what has happened to make our society rely on something like a small plastic card to determine a person’s character or trustworthiness. But I found out today that it is a bigger problem than I had previously thought.  The thing that bothers me most is that I might have actually been uninsured and received that treatment. I have been a loyal customer of Walgreens for over 15 years, the kind of customer that gets 8 or 9 chronic prescriptions every month. Even if I was broke or uninsured, I would deserve better treatment than that. I deserve to be spoken to without contempt or disrespect.

I’ve been lucky enough to have great insurance for most of my adult life. For the entire eight-year span of my marriage, Dustin has worked for companies famous for offering comprehensive insurance coverage to full-time and part-time employees. Providing insurance to hourly workers is a sure sign that a company values the inherent human dignity of those workers, something that both Starbucks and Burgerville realized a long time ago. When Dustin and I were researching a possible move to Burgerville this fall, we came across a case study on the chain that had been performed by a group at Portland State University. Though the study was a great source of information on all of Burgerville’s somewhat radical policies, one thing in particular stood out to me. The researchers interviewed a few actual employees of the company – burger-flippers and counter workers, mostly – one of whom claimed that Burgerville had given them something much more valuable than a job. “You wouldn’t believe how differently people treat you when you have an insurance card,” he said.

Something is very broken in our healthcare system – in our society as a whole – when human beings are given better medical care simply because they appear to be able to pay for it. I don’t have a solution to this problem, but I think that we all need to get our heads together and figure it out, soon. I’ll bring the doughnuts. Who’s with me?

 

Subscribe

A New Approach to Thankfulness

I have, unfortunately, never developed an aptitude for thankfulness. I’m a glass-is-half-empty kind of girl, and to be fair, for the last decade or so, my life glass has seemed a bit dry. A lot of wonderful things have happened to me over the last ten years – meeting and marrying Dustin, having a child, learning, growing, creating a family – but I’ve also had to deal with a lot – a diagnosis of Bipolar syndrome, joblessness, tooth problems, jaw problems, mysterious bone-growing problems, and chronic pain. In some ways, my twenties and early thirties have been a steady progression through one disappointment after another. Don’t get me wrong, I have always been pessimistic. But I used to be a whole lot less pessimistic than I am now. Life can only kick you with its steel-toed boots so many time before you stop expecting it to hand you a cookie.

Needless to say, thankfulness is not my strong suit. I am great at misery and self-pity. I am an expert complainer. But gratitude? Seeing the silver lining? Not so much.

I wish I had a better attitude, especially after reading everyone’s Facebook posts on Turkey Day. There is a whole lot of delightful, heartfelt optimism and gratefulness out there, and I’d like to finally be a part of it somehow. I have therefore decided to take a stab at the whole thankfulness thing this year – in my own way, of course. Instead of straining my eyes to make out the silver lining in what seems to me like dark and ominous storm clouds, I have chosen to take all the bad, unhappy, and unfortunate things in my life and simply be thankful for those. Here goes…

1. I am thankful for constant pain. Feeling pain is an indication that I am reasonably healthy – that my nervous system is functioning correctly – that I am not a leper or an amputee or a paraplegic. Constant pain means that I am still alive. Bam! Thankful.

2. I am thankful for stress and overwork. Having too many things to do means that I can still contribute to my family and my society. Being tired and overwhelmed is an indication that I have not actually given up and refused to get out of bed. I am still trying to be a good human being – to be responsible and productive. Stress and overwork are a sure sign that I still feel normal human urges and emotions. Bam! Thankful.

3. I am thankful for minor financial anxieties. Worrying about how we will pay for new work shoes or buy Christmas presents this year means that I am not worrying about more important things – like how I will pay for my food or medicine or how I will keep my child alive. Bam! Thankful.

4. I am thankful for depression. Yeesh. This is a hard one. Okay…if I did not experience periods of crippling depression, I would not be the person I am today. I would have chosen a different career – had kids earlier – lost a lot of opportunities to become stronger and more resilient. I would have missed out on the exact, weird, wonderful child that I did end up getting. I would not have met some of my dearest friends. And I would not have seen, beyond a doubt, how much my husband loves me. Without my periods of unreasonable, gut-wrenching sadness, I would not be me. And, all things considered, I really quite like being me. Bam! Thankful.

Huh. Maybe there really is something to be said for optimism. This whole thankfulness racket really does kind of bring about a sense of peace and well-being – I may need to make a habit of it.

Happy belated Thanksgiving, everybody, and especially to my fellow pessimists. I suggest that you take a moment and count your blessings (or your curses, as the case may be). You may find, as I did, that there are a few refreshing drinks left in the glass after all.

Subscribe

In Defense of Christmas Excess

“Christmas is coming, the goose is getting fat. Please to put a penny in the old man’s hat. If you haven’t got a penny, a ha’penny will do. If you haven’t got a ha’penny then God bless you!” – Mother Goose

The season of Advent is almost upon us. I know this because the number of Facebook posts about materialism and giving meaningful gifts and the ‘reason for the season’ have increased significantly. There has also been a sharp incline in the number of smug banners that encourage you to ‘like’ if you don’t decorate for Christmas before Thanksgiving.

I am a Christmas enthusiast, and while I don’t necessarily believe that less-excited people are Scrooges or Grinches or joyless executives from Hallmark holiday movies, I do wish sometime that everyone got as into Christmas as I do. I guess I just don’t know what’s not to love about this season. What other time of the year is rampant with ancient traditions, cookies, cakes, and candy, brightly colored packages, festivity, goofy music, and non-stop sentimental jewelry commercials? (Don’t say Valentines Day, because even though you would be correct, that takes away from the validity of my point – which is, of course, that Christmas is the most wonderful time of the year.) It’s not just the fatty food and the presents that make Christmas so great, either (though they help). There is something else. Something deeper: an undercurrent of joy that is helped along by the outer trappings of holly and tinsel. What JRR Tolkien referred to as Joy beyond the walls of the world, poignant as grief.

I grew up in a faith tradition (non-denominational evangelical in name; Baptist in practice) that did not observe the church calendar. When I joined a Presbyterian church as a young adult I was slightly amazed to learn that there was such a thing as a church calendar. Advent, Lent, Pentecost…I knew nothing of these rhythmic cycles of plenty and want, grief and joy, abstinence and plenitude. Preparing myself for Christmas involved tearing off construction paper links, shopping, baking, or opening doors on a chocolate calendar. These are all great things, to be sure, and things I still like to do, but do not involve the level of introspection and anticipation I have come to appreciate about the Advent rituals at my church. Lighting the candles, one by one, reading the ancient prophesies, preparing our hearts and minds to receive the gift of Immanuel, God with us.

Really, though, no matter how much you have prepared during Advent, Christmas always seems to burst forward unexpectedly, at the eleventh hour. In the cold gloom of short days, bare trees, and oppressive darkness, the strongest candle is lit. The light shines in the darkness, and the darkness has not overcome it.

I think that’s why it bothers me when people want to make a lesser deal out of Christmas. You cannot remove the extravagance and celebration and excess and festivity from this season without taking away from its core meaning. And for me, the Christmas season is essentially a good catastrophe. A slap on the head of goodness and generosity. It is, to quote Tolkien again, a sudden and miraculous grace, never to be counted on to reoccur. It does not deny the existence of dyscatastrophe, or sorrow and failure: the possibility of these is necessary to the joy of deliverance. It denies, (in the face of much evidence if you will) universal final defeat and in so far is evangelium, giving a fleeting glimpse of Joy…

I don’t know about you, but I often need a reminder that there will be no final defeat. That the unseen face of the universe wears a smile, and not a frown. And that is why I start listening to Christmas carols on November 1st; why I get my tree as early as possible and bake ridiculous amounts of cookies; why I spend more than I should on gifts for friends and family. That is why I like cheesy Christmas commercials and revel in vapid movies like ‘the Twelve Dates of Christmas’ (starring a much older and less-blond Mark Paul Gossler) and actually enjoy going to the mall in December. I don’t want to miss a minute of the unbelievable phenomenon of Christmas.

Christmas is coming, people! The goose is getting fat! I’ll be ushering in the season this weekend by drinking a peppermint latte and watching Holiday Inn. And eating a half pound of fudge. ‘Tis the season!

A happy and blessed and excessive Advent season to you all.

Subscribe