ethan

The day everything changed was the last day of winter. On Saturday the hardest spring of my life will give way to summer, and somehow I've lived through almost an entire season now, knowing that the boy inside me is anything but ordinary, a season marked by tears and laughter and more questions than I ever thought I could ask.

We moved into our summer place in Philly on Sunday, and it is honestly more perfect than we could have hoped for. There's a balcony that opens onto a view of the city that includes the hospital, just fifteen minutes' walk away.



Zoe is enthralled with all the new toys she gets to play with, and spends lots of time cooking in her kitchen and 'reading' Greek books; she's already getting more cultured after just a day or two of city life.



There are parks and a pool and we even found a play group here in the community where Zoe spent a giddy hour chasing after the big kids while they ran circles around her. Not only have the downstairs neighbours let us use a parking spot, but the couple who had originally offered us their apartment (the one that fell through) also had a free one for us, so my mum was able to bring her car down as well. She'll be staying with us through Ethan's birth to help care for Zoe, and having both cars means one less thing to worry about as we make our way back and forth.



We had a prenatal appointment today, just a quick check of the fluid levels around Ethan (which were normal, pointing yet again to well-functioning kidneys) and a brief glance at his heart which was beating away at a strong 125. We got to meet with the Child Life specialist who helped us start thinking through some of the ways we can make this transition easier on Zoe and sat down with a couple of the nurse practitioners to talk through the plan for Ethan's birth and make our next appointment, which just so happens to be the last one we'll have before he's born. (This somehow came as a real shock to me, despite the fact that I'm usually pretty good with calendars.) We were also supposed to meet with the general surgeon to talk about Ethan's intestines and see whether there's any plan in regards to that side of things, but he got stuck in the OR so we'll hopefully get to sit down with him next week instead.



Two weeks from today the little one currently wreaking havoc on my insides will be fighting for his life on the outside. It's almost impossible to imagine that all this time spent waiting and wondering will end as the next chapter begins. I really don't know what to do with that thought, with the realization that in a thousand ways our lives will be changing in such a short time. The clock, it seems, is not my friend right now, and I'm rushing to fit as much as possible into the remaining days. Family photos and long walks to explore our new neighbourhood and trips to the zoo and anything and everything else I can think of that we won't be able to do once our time will be divided between hospital and home.

But when I look at what I've just written, when I imagine Ethan reading it one day, I realize that I'm not saying it right, because I don't ever want him to think that his life and his place in our family are things to be endured rather than celebrated. The logical side of me knows that medically complex children bring with them them a whole host of changes, but at the end of the day, this is still the baby we prayed for and hoped for and desperately longed for. We just didn't know back then who he really was.

It's a shock to realize that you've been picturing your child all wrong, an incredible, awful adjustment to pack away the dreams you had and exchange them for new, very different ones, but it doesn't make it any less beautiful that we're going to be welcoming him into our family in a few short days. It seems impossible that both of those things could be true at the same time, that I could be simultaneously overjoyed and scared to death, but it seems that impossible is par for the course these days and so I lie awake at night planning and wondering and praying and dreaming a whole new set of dreams. And soon enough I'll get to see which of those dreams are going to come true.

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Although it's maybe an abrupt change of subject, I have a few practical pieces to share today, too.

We've started a Facebook page for Ethan, and, for the most part, the day-to-day updates will be there. This blog will likely start to transition more to the personal reflection side of things; I'll update here with information and such, too, but not necessarily in 'real time' like over on Facebook since it usually takes me a while to compose my thoughts properly when I'm sharing my heart rather than just the facts. It also seems like Facebook is the easiest way to reach the most people in the fastest way possible (crucial when we're sending out prayer requests), so head over to Hope for Ethan and 'like' his page to get notifications when we post updates there.

Quite a few people have asked how they can support us financially as we walk this road, and we are so grateful for that since it looks like it will still be a number of months before we can get Phil's immigration sorted so that he can start looking for a job. Mercy Ships has been incredible throughout this whole process, going above and beyond to make a very hard time at least a bit easier. While we hope and pray that we will have Ethan with us for many long years to come, we're also realistic about the fact that his diagnosis means that there's a very real possibility that we'll lose him before we're ready. To that end, Mercy Ships has placed us on a yearlong medical leave, which means that we've been able to keep some of our stuff in storage on board, and we'll still be able to receive tax-deductible donations through our Mercy Ships support page. In addition, some amazing friends from the hospital I worked at before leaving for the ship recently held a fundraiser for us and set up a gofundme page where we are also able to receive donations.

Please continue to lift us up in prayer as we get closer to Ethan's birth. I'm having a lot of trouble sleeping at night now, normal end of pregnancy symptoms being multiplied by the mental calisthenics I seem to be doing when there's nothing else going on to occupy my mind, which means that the usual third-trimester exhaustion is being multiplied. Zoe has been amazing through all the many transitions, but she's still finding her her new routine here and her sleep has been a bit rocky, which doesn't help any of us, so please pray that she'd settle in quickly and easily.

God has been so faithful to us on this journey. I can't wait to share the next steps with you.

It's funny how your perspective can shift so wildly, how a good day can come to mean something so different than it did a few months ago. Today was a good day. We spent four hours of it in the car, three of it in hospital waiting rooms and darkened ultrasound suites, and all I can think is how happy I am that my son's heart rate, while still lower than what's considered normal for a baby of his age, was higher than the last time we checked on him.



I almost didn't notice the missing pieces in that little heart. (Almost.) Seeing the waves trace their path across the screen, rising and falling in that steady beat was enough to put a smile on my face, and having the doctor come back in to try and give us a look at his face only to find him licking his placenta and stretching straight out to push his feet as far into my ribs as possible while she cooed about how cute he is just felt so normal.

Granted, the day also included a meeting with an anesthetist in which we had to discuss the very real (albeit small, hopefully) possibility that Ethan won't tolerate labour and will need to be delivered by emergency c-section. And we sat with a lactation consultant who explained that it will be important for me to spend lots of time at Ethan's bedside so that I'll expose myself to the same ICU germs he's around and make antibodies to pass to him through my milk since it's likely that his spleens won't work properly.

I sit here on the couch in the house where I grew up, my family all around me, and it seems impossible that my life could contain such wild contrasts. That a hollow heart on a screen could look normal, that I could calmly discuss the fact that my child will almost certainly be fed through an NG tube (at least for a while), that spending much of the long car trip home on the phone making appointments for yet more ultrasounds and doctor visits was the natural price to pay if I wanted to have time to pick strawberries with Zoe when we made it home.



I guess this is just how it goes, and there's something almost comforting about how you can find a rhythm on even the rockiest seas. Maybe all those years on a ship, the constant change and push and pull of extreme emotions, were really preparing us for this.

Whatever the case, we've been feeling a real sense of peace as we move closer to Ethan's birth. There are still nights where I wake up and can't fall back to sleep as the what ifs and how will we ever make it throughs race around my mind, but God is quietly and constantly showing His faithfulness.

We got the keys to the house we'll be staying in near the hospital after our appointment today. The woman who lives there let us know that the downstairs neighbours (who are, funny enough, another white woman and her Indian husband) have an extra parking spot that we can use for the summer. Yet another answered prayer, another light to guide us through the darkness.

A few nights ago, I was finally able to admit to myself (and a Facebook group for heterotaxy families that I'm part of) that I wasn't feeling excited about Ethan's birth, that all I was feeling was fear surrounding what should be an incredibly joyful event. I know that, to an extent, this is normal; his birth and the time afterwards aren't going to be the same as Zoe's (not even remotely), and there is a lot of uncertainty about what he'll be facing. But at the same time, I've been worried that I'm doing my little boy a disservice by focusing only on the frightening parts about the days to come. It's just so hard to get excited when you don't know how long you'll get to have him for, when you don't know how hard his life will be or how much of it he'll have to spend in hospitals, attached to all sorts of equipment.

I've been wanting to nest, but when you're living in your parents' basement and you don't know whether your kid is going to make it to his first birthday, that sort of thing is incredibly difficult, and so I've felt detached from so many of the fun, happy things that should mark the end of a pregnancy. One of the mamas on the Facebook group shared that one of her biggest regrets during her pregnancy was that she didn't trust the future enough to buy any clothes for her son, that she didn't prepare in that way. And I've been the same, but in our case a lot of it has been for financial reasons. We're practical people, and at the end of the day it just doesn't make sense to spend a lot of money on things that we can't know whether we'll need. It doesn't make it any easier to walk though a store and see all the adorable little clothes that I would be picking up if I could guarantee that my child would ever be big enough to need that size.

And of course God heard this, too. The very next day a woman from my church dropped off three enormous bags of clothes, handmedowns from her daughter who I grew up with and who now has four boys of her own. I spent Zoe's entire nap yesterday folding and sorting piles and piles of tiny laundry, finally letting myself picture a little boy who might get to wear them. (Apparently, along with all his other issues, he's going to have a very hard time deciding which of his many Hawaiian shirts to wear to Friday night pizza. This, I think, is a wonderful problem to have.)



The lactation consultant told us today that she thinks we have really good attitudes about all this; she seemed surprised that we could smile and laugh in the face of all we're facing. I don't think it's our attitudes that are necessarily good, though. It's the fact that we are being carried through this by a God who chose His words carefully when He promised peace that passes understanding.

Because I think back to that office, on the first day nearly three lifetimes months ago, how I couldn't stop repeating that this is the one thing I could never do, and it seems like a dream. Because I am doing this. Regardless of how impossible it seems. And I will continue to do it, with my family by my side and all of you surrounding us with a covering of prayer to the God who holds this all in His nail-scarred hands. Because my son needs a mama who not only fights for him but who loves every little part of him and rejoices in his life, no matter how different that life might look from the one I dreamed of.

And that's the mama I'm going to be.

There are moments along this journey that break my heart and ones that make me think that maybe I'll make it through after all. I think, in some ways, the hardest times are the ones where both of those things happen at once.

We've been trying to prepare Zoe for her brother's arrival as best we can, which is kind of impossible given the fact that she won't even turn two until after he makes his debut and so there are limits to her ability to grasp this whole situation. I'm sure any mama getting ready for the second baby worries about how the first will adjust, whether the older sibling will accept the new addition or how they'll deal with not being the center of attention. Every mama wonders how she'll split her time and her heart between her children. It's just that, in this situation, those worries and questions are far deeper and infinitely more complicated.

It's not just the day or two surrounding delivery where Zoe won't see her mama; I'm going to be spending huge amounts of time with Ethan in the hospital, and for a kid who's spent almost every waking moment glued to my hip, this is bound to come as an unwelcome shock to my firstborn. When he comes home, it's not just the usual sibling rivalry we have to worry about; we'll have to protect his newly-repaired sternum from a boisterous big sister and keep her from yanking off his oxygen monitor and somehow make sure that she doesn't get him sick.

At the end of the day, we just don't know yet what life with Ethan is going to look like. We don't know how long we'll be trading places at his bedside, how fragile he'll be when we bring him home, how often we'll be packing up and heading to the ER while she wonders yet again where mama and dada went.

But Zoe is so thrilled about her Baby Ethie. She pats my belly and puts her hand on it to feel him move and pokes back when he kicks her, and I really do think she understands that there's someone in there. But the hard truth is that the someone in there has a long road ahead of him, and it's going to affect her, too, and so along with the exciting parts about having a new baby brother, I've been explaining to her that Ethan's heart is sick and that he'll need to go to the doctor for a long time when he's born. I've had no idea whether these much more abstract concepts were even registering with her. Until today.

This afternoon, we were playing on the couch together and she was showing me her stubbed toe, asking me to kiss her boo boo. I obliged (despite the fact that the toe was not even remotely clean), and when she looked up at me, head cocked to the side, to ask whether that meant it was all better, I figured it was as good a moment as any for one of the many explanations that I never thought I'd be making.

Well, love, I told her, kissing a boo boo doesn't actually fix it. Some boo boos are much harder to fix than that. But a kiss can make you feel better even if the boo boo is still there, okay? She stared at me with those big, dark eyes while she processed that for a long moment, and then she reached up to touch my belly while she kissed the air around her brother.

Ethie all better? Okay now?

The familiar tears filled my eyes while my little tomboy with the surprisingly tender heart scrambled up next to me, telling me she wanted me to be happy instead of crying, the way she always does when she catches me in a vulnerable moment. How does she understand this so well? I wasn't sure a kid her age could really even grasp the concept of a baby whose only physical presence in her life is mama's growing belly, but here she is listening to me explain that some wounds run deeper than others and she automatically knows I'm talking about her brother's sick little heart even though I didn't once say his name.

If only it were so easy. If only a kiss from his big sister could make this boo boo better. I just don't know what she's going to do when she realizes that hers aren't going to fix it all.

Today marks thirty-four weeks of pregnancy, and internet sources differ as to whether Ethan's roughly the size of a cantaloupe or a butternut squash. If only that were the biggest question on my mind at the moment. This promises to be another long one; I'll put a list of prayer requests at the end if you don't have time to sort through all my ramblings.

We had our next big prenatal appointment down at CHOP on Wednesday. Ethan had an echo (heart ultrasound) and a growth ultrasound, and we met with the cardiology team, spoke with a doctor on the maternal-fetal medicine team, sat down with the palliative care team and had a 'regular' prenatal checkup with one of the midwives. We also had a chance to tour the special delivery unit (SDU) where Ethan will be born and the cardiac intensive care unit (CICU) right around the corner where he'll spend the first weeks of his life.

Needless to say, it was a very full day, and it was awesome to have the Husband of Joy there by my side this time.

There's a tiny little part of me that can't let go of the hope that they'll put that ultrasound probe on my belly, fall silent, and then tell me that it's all been a big mistake, that they don't know what happened but everything's okay. I try to talk myself out of it every time I climb up on that table and lift up my shirt, but hope is a stubborn thing.

I think that's what makes it even harder every time his heart comes into view on the screen, a yawning black hole where it should be neatly divided into its four chambers. This whole thing is still so unreal in a lot of ways, and it's hard to sit in the conference room after an echo and truly take in everything that they're saying.

Not much has changed since our last look at his heart. I mentioned after the last echo that we didn't know whether we'd be looking at a single ventricle or a biventricular repair. As his heart's grown, it looks like it's starting to favour one side over the other, which is more of an indication towards a single ventricle repair. This could still change as he gets bigger, but as of right now it doesn't seem to be going in the direction we want it to. His heartrate was also slightly slower overall at this visit than it was at the last one, which is a concern since he's a kid who's at increased risk for developing heart block. Right now, his rhythm and the strength of his heart look perfect so there's no heart block, but we'll be monitoring his heartrate carefully as we get closer to delivery. We were able to request the surgeon that we want, and it looks like there should be no problem with having him do Ethan's surgeries.

We also took another look at his kidneys, since there's been a question of whether there's urine backing up in them. Unfortunately it looked like that was the case to varying degrees in both kidneys this time; we could actually see it come and go as we were looking on the ultrasound. This is also something he could just grow out of or something that might need intervention sometime in the future; more wait and see to add to the list.

Otherwise, everything looks great. He's growing right on track, and they estimate that he weighs just under five pounds right now; if he gains the standard half pound a week from here on in he'll be bigger than his sister when he finally makes his grand entrance. He's decided to go ahead and get firmly into position for delivery, so his head was so far down that we couldn't see his little face at all. It'll just have to be a surprise on the big day.

Speaking of his grand entrance, we have officially scheduled induction for July 1st, provided he doesn't come on his own before then. He's likely to have his first open heart surgery within the first 48 hours (the one to place the shunt), and no one wants to be doing that sort of thing on Fourth of July weekend (my actual due date), so we get to have the most patriotic baby ever: due on America's birthday, hopefully born when Canada's celebrating hers. We've been given the okay to hang out up here in Jersey until our place in the city is available, so barring any complications, we'll be moving to Philly on June 14th.

For me, the most important (and hardest) part of the day was the meeting with the palliative care team. While we're fully intending to go ahead with surgeries, we feel it's important to (as the head of the team put it) hope for the best while preparing for the worst. It's an experience I wouldn't wish on my worst enemy. Sitting around a table in a sunny room while you discuss what it would look like if your baby doesn't do as well as you're expecting. If all the medical expertise at the best hospital in the country isn't enough. If he dies.

Speaking with people accustomed to walking beside families as they go through this helped me realize that there are two big things that I'm afraid of. I'm afraid that no one will tell us when it's time to let go, and I'm afraid that I won't have the strength to open my hands and release him if that time comes. It was such a relief to me to be assured that they will be honest with us at every step along the way and that we will not have to be alone if we have to make these impossible decisions.

But how are these the conversations we're having? How is it even conceivable that we have to ask what it will look like as our son takes his final breaths instead of trying to decide which outfit we're going to bring him home in? In what reality do you make plans for open heart surgery instead of worrying whether the carseat is installed correctly?

I keep thinking that this can't possibly be my life. That maybe this is happening to someone else. Because everything just seems so normal when we're not in those rooms around those tables with the kind strangers nodding and handing us tissues. I have heartburn. I get up a million times a night to pee. He gets the hiccups when I eat spicy food and kicks me hard on the right side of my stomach when I put on loud music. He is perfect. Except he's not, but that doesn't make sense when I feel him push back against his sister when she flops down on top of him for a snuggle.

This is all a jumble, I know. There's just so much to the days right now, and there are only thirty-nine of them left before this little guy is born and that seems like no time at all to prepare.

But God is going before us. Phil got home safely, and his reunion with Zoe has been pure joy to watch. She didn't let him out of her sight for the first few days, and wants to copy everything that he does. He's been getting her up in the mornings and letting me sleep in; for this reason alone it's heaven to have him back, but it's also just so good to be able to talk things through face to face without time zones and glitchy technology getting in the way. I didn't realize that I'd been holding my breath for the past two months until I saw him walking towards me and could finally let it all go.



We picked up our new (to us) car on Monday. Zoe's also a huge fan of that, and spent the better part of Tuesday 'helping' me give it a good scrub, since it spent the last few months of its life sitting down the shore. Now I just have to get used to looking for it in parking lots; I've spent a good while wandering around at Target because I was trying to find my mom's car instead of ours. (We are such grownups, having a car and all.)



On Wednesday after our appointment, we met the people whose house we'll be staying in for the summer, and yet again it was a situation of more than we can ask or imagine. I thought it was just a couple with no children, but it turns out that they have three year-old twins, and so beyond the child locks on cupboard and guards on stove knobs and the assurance that us bringing a toddler into the mix doesn't worry them at all, the house is stocked with more toys and books than Zoe could play with in a year. There's even a little red play kitchen, right alongside the real kitchen counter. Zoe's favourite toy of all time, the thing she makes a beeline for whenever she's in someone's house who has one. Just waiting for us to come down.

Seeing that little kitchen was like a promise in the middle of the storm. Yet again one of the small reminders that God sees us, that He is concerned with even the smallest details of this massively complicated picture, that He cares about every single one of them.

I think that's enough words for now. There are thousands more in my head and heart, hundreds of thoughts keeping me awake for hours in the small hours of the night while I count down the days until I hopefully get to hold my son for a precious few seconds before he's taken away to be stabilized. But those can wait for another time.

Please pray.

- That the reflux in Ethan's kidneys would resolve and not require any intervention after he's born.
- That his heart would continue to have a strong rate and rhythm and that he would not go into heart block.
- We still weren't able to meet with the pediatric general surgeon in regards to Ethan's intestines, so we're still praying that those will be okay without surgery after he's born and, if not, that the surgery will go smoothly.
- Our next visit is most likely going to be a quick one on June 4th, just to see the midwives, meet with a lactation consultant (since I'll be pumping for Ethan once he's able to start taking feeds after surgery), and hopefully meet with the general surgeon and possibly our cardiac surgeon if he's available.
- We'll also pick up keys to 'our' summer house on the 4th. As of right now, we're not sure what will happen with parking, since the family's car will still be in their spot while they're in Greece for the summer. They're going to appeal to the community board to see whether we can get a spot designated for us while they're away; please pray that this would be sorted out.
- Pray for us as the reality of this whole thing starts to hit as we get closer to Ethan's birth. Pray for clear communication between Phil and I, patience and grace as we each process and react in our own ways, and wisdom as we parent Zoe through this hard time.

Troops, you can stand down.

Thank you all so much for everything you have done over the past couple of weeks, whether it's been offering up rooms in your houses, spreading the word to others, or simply praying for us as we continue on this journey. I know it's been less than forty-eight hours since I posted an entry saying that we're back to square one and I'm totally unable to see God's plan in all this, but trust me: I've never been happier to eat my own words.

On Sunday, right before I hit publish on that last entry, I reached out to the friend who had connected us with the original apartment. She had another contact in the same community and promised to get in touch with them. Yesterday, I got an e-mail from the second couple, offering us their house from mid-June until mid-August. Three bedrooms, two and a half bathrooms, fifteen minutes' walk to the hospital. We're going to meet them after our next appointment at CHOP on the 21st and sort out how we'll be paying their utilities for the summer, which is all they're asking of us. I also heard from another family who has offered us a floor of their house, complete with two bedrooms and a kitchen of our own for the weeks before and indefinitely after the Philly house is available to us, in case things don't go as smoothly as we're hoping they will. (It's about half an hour outside of the city, but we're feeling okay about being a bit further away once we're out of that initial critical period surrounding Ethan's birth and first open heart surgery.)

We are also going to have a car; a friend who I had the honour of precepting during her extern summer many years ago is generously donating one to us. It's getting some work done right now but should be road ready within a week or so. It turns out that Ellen Degeneres is also giving away cars, so I asked her for a new one, since the one we're getting has many miles on it and isn't big enough to work for a family of four long-term (which is what we're hoping we'll get to be). I'm sure I'll be hearing from her soon. (This is the part where I wish there was a font that could properly express sarcasm plus tongue-in-cheek, mixed with just a tiny bit of crazy hope...)

My entire body broke out into a sweat when I read the e-mail about the house. (Granted, this could have been more to do with the pregnancy hormones than anything else, but I'm going with sheer excitement. Work with me.) Remember when I casually mentioned that I thought God was going to do more than we could ask or imagine? Apparently after I typed that I went on to completely forget it, because when the possibility of the first apartment surfaced, all I could think was, This is exactly what we were hoping for. It's perfect.

God, it seems, is not in the business of giving us what we were hoping for.

Take that any way you want. I'm certainly seeing it from both sides right now, my heart and mind torn between two extremes like it so often is these days.

I don't want you to think that there's a single corner of my soul that doesn't love my son as deeply and fiercely as it is possible for a mama to love, but I will admit (albeit in a very small and shaky voice) that he's not what I was hoping for. Hope is a longing, a deep desire for something to happen, and there's no part of me that wanted this to be the road my son and our family would walk. No one daydreams happily of a future that includes open heart surgeries and long hospitalizations and more uncertainty than you could possibly imagine. No one.

When I saw those two pink lines on the stick back in October, my hopes were vastly different than they are now. I was dreaming of things like a baby who slept through the night before he was twenty months old. Maybe he'd be a great eater. Or maybe he'd have curly hair like his Dada and sister. Those are the kind of things you hope for. Not a heart put together wrong and a body that isn't going to work quite right and a desperate plea for just one more day with him, please God.

An apartment seems like such a small thing in the face of all that, but coming to terms with the fact that nothing is going to be the way you pictured it is a hard thing to do, and having such a 'perfect' place felt like it was somehow going to make things better. It was something that I'd hoped for that was actually coming true, and it felt like such a victory.

But God is not in the business of giving us what we hoped for.

He knows that all our hopes, our wildest dreams and most elaborate longings cannot hold a candle to the plan that He's weaving together for us. He is not a God who does things by halves. We hope to find a car we can afford and someone gives us one for free. We hope for two bedrooms and He gives us three. We hope for an apartment and He has an entire house prepared for us.

I hoped for a baby with a perfect heart, and He gave me Ethan. Surely this is no mistake. If there is any foundation on which to place my faltering feet, it has to be this one. That He is making all things new, working tirelessly to draw the good and the best out of every single situation that has been warped by the brokenness of the world.

That more than you can ask or imagine means precisely that.

I had a completely different entry all typed up and ready to publish, just waiting on the final word from the couple whose apartment we were going to stay in this summer. It was full of excitement about how perfect the situation was and how God's provision was so far beyond what we could ask or imagine, bursting with the excitement that comes from watching Him work and having our faith strengthened along the way.

I just deleted it.

We thought we had a place to stay. It was an apartment less than a mile from the hospital, perfectly set up for a family with a toddler, and the family who lives there wanted to basically let us have it for the entire summer for free because they felt moved to help us as we walk this road with Ethan. It could not have been more ideal. We spent the week waiting for the final approval we assumed would be coming from their landlady, and I started looking on Google maps to find the best route to the park that's just a couple blocks away.

Yesterday, I got an e-mail telling me that the landlady has refused to allow them to sublet to us. Unless she has a drastic change of heart, yet another of the too-few weeks has gone by, and we are back to square one in looking for a place to stay.

I'm not going to lie: I sat there and cried my eyes out when I finished reading it.

Because it's not just the apartment. It's realizing that this is the first real bump we've hit along the way (not counting the initial, massive one at that first ultrasound, the one that threw our lives completely onto a different course), and it was far more jarring than I expected it to be.

I immediately started extrapolating, wondering how on earth I was going to deal with my son going into the operating room for open heart surgery if the simple fact that I was still looking for a place to stay was reducing me to a blubbering mess in the church bathroom. I started imagining all the worst-case scenarios that could happen if we were staying somewhere further away, picturing myself getting the call that my baby was crashing and then sitting in traffic instead of being at his bedside, and I got so scared that I almost couldn't breathe.

None of these things are really helpful in terms of faith-building. I can't sit here and pretend like I had some grand epiphany in the hours following that e-mail, or that I'm anywhere close to understanding why that landlady's heart is so hard against us. Because I didn't, and I don't, and I'm not really expecting to.

What I do have are the words from last week's sermon, the one that God prompted the speaker to give instead of what he had actually planned on sharing. The one about the disciples in a sinking ship in the middle of the storm, scared out of their minds and facing the unthinkable.

In the middle of the trial, look for the Lord. If you are in the valley of the shadow of death, He will lead you through. Turn away from Him, and you will lose your way in the darkness.

It's not a new thought by any means. I grew up reciting Psalm 23, picturing the Shepherd walking me through that rocky valley, knowing that He was the one who knew the best route through the winding ravine.

It's just that I never realized until now how dark it really is in the shadow of death. It's like ink sometimes, thick and suffocating and I'm afraid to move because I know that I will never find my footing again if I take one step wrong, but at the same time everything inside me is screaming at me to run because spending one more second surrounded by that blackness is the worst thing I can imagine.

My word, He reminds me. That's the light that will show you the next step.

And the Word became flesh. He was born, the Word, a squalling baby who slept in a feeding trough and in His mama's arms, a little boy who fell a thousand times while He learned to walk, a man who was desperately loved by that mama who watched Him die while He saved us all.

The Word is a lamp for my unsteady feet, the Light walking beside me on this impossible path through the darkness. The ground is already marked by His own footprints, left behind when He walked this journey alone so that I would never have to face it by myself.

What fear can a shadow possibly hold in the face of Light like this?

(So maybe I had an epiphany after all.)

Where to begin? How to condense twelve hours of testing and ultrasounds and meetings and more information than I can possibly take in all at once? (This is an enormous wall of text, I know. Please feel free to skip down a good ways for the short version, the plan, and the prayer requests if you'd like.)

The Long Version

I think we start with this sweet face, the one you've been praying for, this little boy who keeps me awake at night with his ninja moves and all the questions about his future. He was far too comfy with his face mashed into the side of my belly, so we didn't get to see him in 3D, but I think this picture gives a little hint as to how kissable these lips are going to be.



That's the perfect picture I got from yesterday. I also got this one, the personalized drawing that every heart mama gets, the one that shows just how wrong things went when her baby's body was coming together. I'll leave it here for the medical people who can read the fine print down in the righthand corner and interpret the wildly misplaced curves of his vessels by sight.



For the rest of us (and I include myself in this category, the mother side of my head that can't comprehend that this could possibly be happening to her own child and sits numb in meetings while term after term washes over her), here, as best as I can explain it (the nurse side of me, that is, the one that catalogues each of these conditions and recalls years-old bits of information about what they mean), is the simplified version. (It's still really long. This is not a simple heart.)

Basically, the normal heart is divided into two sides. The right side deals with 'blue' blood (blood coming from the body that's had all the oxygen used up), and the left side deals with 'red' blood (the blood circulating through the lungs and picking up fresh oxygen. Each side has two chambers, one that receives blood and one that pumps it back out to the next part of the circuit. Between each chamber is a valve that keeps things flowing in the proper direction, and between the two sides is a thick wall.

When Ethan's heart was forming, instead of separating into those two different sides, it took one side of itself and tried to make a mirror image of it on the other. Instead of the four neat chambers, picture a bell pepper with most of the insides scooped out and you're getting close to what it looks like. Essentially, his heart has one big receiving chamber since he's missing the wall entirely between those two sides. He does have two pumping chambers, but he's also missing part of the wall between them. Instead of a valve on either side directing blood flow, he has one big one that goes across the entire heart.

His heart should have blue blood coming back into it from his body through a vein into just the right side, but he has a vein doing that on each side. Same goes for blood bringing oxygen from the lungs; instead of coming into just the left side, two of his veins empty into the left side and two empty into the right. For the blood leaving the heart, instead of each pumping chamber having one large artery coming out of it (one to his lungs and one to his body), both arteries come out of the right side.

Here's where it gets tricky. (As if your eyes weren't already glazed over...) The large artery that should carry red blood to his body (his aorta), is the right size but coming off the wrong side. The other large artery that should carry blue blood to his lungs (his pulmonary artery) comes off the correct side, but is so small that there's essentially no blood flow through it. This will be the most immediate problem to be corrected once he's born.

There are a couple other interesting things about his heart and circulation, but at this point it'll just be more confusing if I try to explain them. They'll come into play more as we go down the road and look at different surgeries, and I'll share more when that time comes.

As far as the rest of his organs go (since heterotaxy can affect pretty much the whole body), here's the rundown:

- We initially thought he had the right atrial isomerism version of heterotaxy, but given the structure of his blood vessels and the fact that he has multiple spleens, we're changing that to be consistent with the left atrial isomerism (LAI) version. That version isn't usually associated with such severe heart defects, but Ethan's doing his own thing right from day one. The label isn't really important, but just for the sake of correctness they changed it.
- They weren't able to see his lungs clearly enough, so we're not sure exactly what they look like; that'll have to wait until he's born, but they didn't have any glaring concerns about their size or position based on the ultrasound and MRI.
- His stomach is indeed on the right side instead of the left where it's meant to be, but it also looks like a normal size.
- His liver, instead of sitting on the right side, is across the middle of his body, but because we also saw a normal-sized gallbladder, they're not worried about its function at this point.
- He has one large spleen that's possibly made up of a few small ones lumped together, along with a couple of other smaller ones sitting on their own. We won't know until after he's born whether they work, but at least they're there, which gives us a chance.
- At the last ultrasound we saw some fluid on his kidneys; yesterday his left kidney was totally normal, and once I hit 30 weeks on Friday, the measurements in his right kidney will also be considered normal.
- His intestines are showing some signs that they may be rotated wrong (another very common heterotaxy complication), but the pediatric surgeon I was supposed to meet with about it was in the OR all day so we'll have to wait until the next visit for more information there.

The Short Version

- We have confirmed the diagnosis of heterotaxy, left atrial isomerism version, based on Ethan's heart and his other organs.
- Ethan's heart looks very much like what we thought from the first ultrasound. He has complex congenital heart defects and will require multiple open heart surgeries.
- All his pulmonary veins drain into his heart, albeit not all in the correct spots; this is an answer to prayer.
- His kidneys look normal, another answer to prayer.
- He may have problems with his intestines being rotated wrong, which will most likely require another surgery. We will get more information about this at our next appointment.
- He has multiple spleens, one big one that's probably lot of little ones clumped together, and a few other smaller ones.

The Part With the Plan

So. Where does this leave us? What's the plan?

At this point, it looks like I will be a candidate for a normal birth with midwives in the Special Delivery Unit (SDU) down at CHOP. We can wait for me to go into labour on my own, and if that hasn't happened by my due date I'll be induced. I will deliver right down the hall from the cardiac ICU (CICU) where Ethan will be cared for.

As soon as he's born, the most important thing will be to ensure that his heart has a way to get blood to his lungs. Babies are born with a little vessel that normally closes off within a few hours after birth that can do just this, so the first priority will be to start an IV medication that will keep this vessel (the ductus arteriosis, in case you wanted yet another term to add to the pile) open. This will buy time while we check out his heart and lungs and intestines and wait for him to be stable for surgery.

He will most likely have his first open heart surgery within the first week of his life, something called a BT shunt, which will be an artificial tube placed instead of that natural vessel which can only be kept open with IV medication. With that tube in place, they are hopeful that he'll be able to recover for a few weeks in hospital and then come home with us to wait for his next surgery. (When they said the word home for the first time, I finally understood the phrase music to my ears.)

That shunt is not permanent; he'll outgrow it in a matter of months, but it buys us more time to see how he grows, how his heart continues to function and grow, and what the next step should be. After the shunt surgery, there are two paths that he might go down (single or biventricular repair), both requiring at least two further open heart surgeries, but at this point there's no way of knowing which one will be best for him. That will come in time, and I don't want to go into long explanations of possible surgeries until we know which ones we're facing for sure.

For now, we have a plan. We have a first step and we have been given the hope (tenuous as it is when you're talking about doing open heart surgery on a baby who's less than a week old) that our boy might get to come home with us after all. For now, that's more than enough.

The Part Where We Need You

This leaves us with a few major things that we need to sort out on our end, and this is where I'm turning to the collective power of the internet for help.

I have, at most, six more weeks of hanging out here in NJ. I'll be able to have one more appointment with my regular OB here before all my appointments will have to be down at CHOP. Starting at 36 weeks, I'll be going every week, and they want me to be living full-time in the area in order to be close in case Ethan decides to come early. Apparently needing to drive two hours to the hospital (on a good day; it can be something like four with traffic) when you're in labour with a medically complex kid isn't recommended. Who knew? Phil will be home on May 17th, a few days before my next CHOP appointment, and a couple weeks after that we'll be looking to temporarily relocate our little family to somewhere within half an hour of the hospital.

Does anyone know of a place we could stay, from the second week of June until early or mid-August if all goes well? I know I'm asking a lot, but ideally it would be two bedrooms and already furnished, since we're hoping it would only be for a couple of months before we can be back up here in NJ with both our kiddos. Anyone need a house-sitter for a couple months? Have a few months left on a lease? Anything like that? The internet is a big place, so I'm hoping that someone will have a connection out there or can point us in the right direction.

We also need to buy a car. We're trusting God that it'll be a car that will be carrying two kids around for a while, but we're also looking at lots of appointments in the city, so a minivan might be a bit big. I'm thinking something like a CRV would be perfect (whatever that class of car is called), since we'll need room for two car seats and all the luggage we'll be hauling around as we bounce between Jersey and Philly for the next few years. Anyone looking to sell one, or know someone who is?

My e-mail is on the sidebar, up near the top, in case you're looking to offload a fully-furnished apartment in Central Philly and have a car to throw into the deal and the comments just aren't working for you. (A girl can dream, right?) Please share these requests with anyone in the area, whether it's friends or family or churches.

The Part Where We Pray

Please continue to stand with us in prayer as we wait for the birth of our son. Some of the fear surrounding that day has definitely been lifted since we know more about what things are likely to look like (at least for the initial phase), but he faces a long and uncertain road.

Pray that his heart would continue to have a good, strong rate and rhythm as it grows. Pray that his other organs would all function correctly despite being in the wrong places, and that the fluid on his kidneys would continue to resolve. Pray that it would be clear which path forward we should take in terms of surgeries and the best outcome for Ethan. Pray that we would find a place to stay and a car to drive, and that we would be able to balance caring for Zoe and preparing for Ethan's birth. Pray for Phil and I as we make these hard decisions and for the medical staff who will be caring for him and performing surgeries on his tiny little heart.

We love you, and we love that you love our son. We could not be doing this without you. Thank you.

I found out I was pregnant with Zoe during the season of Advent. Week by week we lit candles and celebrated hope and joy and peace and love, and every single time those small flames flickered to life, I felt all the beautiful impact of the words. It was precious and holy, and I know that it was a gift from God that I got to experience the beginning of her life in such a perfect way.

Ethan's diagnosis came during Lent, in the season leading up to this past weekend when we turn our eyes to the cross and the grave and the skies, and I sit here with shaking hands, trying to receive this as the same kind of gift when everything inside me wants to scream at the thought of death.

I wanted to start writing about this on Sunday, but how can grammar and syntax possibly convey the fact that, for the first time in my life, I feel like I finally entered into the darkness of the days that came before that first Easter in a real, gut-wrenching way?

Zoe's been sick, which means my nights have been spent mostly awake, holding her, and as the long hours stretched by, I couldn't stop thinking about another mother, thousands of years ago, watching her son being tortured to death. I couldn't stop thinking about the God who was letting it happen, the God who turned His back at the worst of the pain, the God who threw the entire world into darkness because it was all too much.

I sat there for long hours, waiting for Easter morning as the nights stretched on forever, holding one of my children and begging for the life of the other, desperate in the darkness in a way that only a mama faced with the suffering of her son will ever be able to understand.

And then Sunday came, like it always does after Friday and Saturday. Zoe was still sick, and so we didn't get to go to church to celebrate with the rest of the family. Instead I found myself in tears in the quiet house, Easter looking nothing like what I expected.

I wanted it to be perfect, a radiant morning filled with joy and laughter and the hope that the resurrection brings, but after that weekend? All I felt was tired. Worn out. Unable to believe that there was any way that things could actually be okay.

I wonder if that's how they felt, those thousands of years ago, the ones who loved Him most and watched Him die (or turned away, which is something I can finally understand, because sometimes you just can't anymore). When that Sunday morning rolled around, was there any hope left in them, or had it been drained away in the long hours of grieving what they'd lost?

Mary, searching for Him alone in the garden in the early morning, didn't even recognize Him when He stood in front of her. Was it because her eyes were still filled with tears, swollen from yet another night spent weeping into the dark? Thomas needed to see the nail marks, to put his hand in His side, before he could believe, and this, too, makes sense to me now in a way it never did before.

Because hope is such a dangerous thing when the opposite is the unthinkable.

And this is where the truth of the resurrection becomes the anchor I cling to in this storm. Despite a weekend that must have seemed like a lifetime spent in the haze of sadness and pain, Sunday still came. Do you hear me? Sunday still came in a blaze of light and a stone rolled aside and a man who was really God turning His back on the grave.

This is God's heart for the world. Not pain or suffering or weary days spent enveloped in grief. An empty tomb, a risen Saviour, the brokenness of the world being pieced back together, one tiny shard at a time, by the One who gave everything so that He could see us made whole again.

I know there's more to this, the He's going to be showing me His heart in a thousand ways over the coming days as we fight for Ethan's, but for now it's just this, echoing in my head with every breath: Sunday always comes, no matter how tear-stained and defeated I might feel. Sunday always comes.

-----

Before I left Toronto yesterday, my brother came outside holding this enormous, ugly stuffed gorilla and told me that he wanted Ethan to borrow it. The gorilla's name is Choppy; it was given to my big brother when he was just a baby, when he had the hole in his own heart repaired by the surgeons at CHOP. I won't pretend that I didn't bawl right there in the driveway.



I'm leaving in about an hour to head down to Philadelphia where I'll meet up with some friends from the ship for a mini reunion before my day of tests and consults and meetings at CHOP, which starts at 6:30 tomorrow. Prayers for a cooperative baby, wisdom from all the staff, and clear direction about the path going forward would be more than appreciated.

I suppose that no news is good news around these parts in this season of waiting. It means we've just been laying low, getting adjusted to life here on land, doing all the things we don't get to do on the ship (hello Chipotle!) and enjoying the first spring I've been witness to in quite a few years.

For the most part, life has been good (although, to be fair, good maybe doesn't mean exactly what it did a few weeks ago). The hours do seem to be doing a weird thing where they take forever to pass, but then I blink and it's just two weeks until my big appointment down at CHOP. As that day gets closer I get more and more nervous that our Medicaid approval won't go through on time; I know it's not technically the end of the world if we have to reschedule, but I'm counting down to the 23rd like it's Y2K or something.

I've been having a lot of dreams lately where I'm trapped somewhere and can't get out, where I'm lost and can't for the life of me find my way home. Intellectually, it makes sense that my brain is processing like this, but it's exhausting to wake up after just a few hours of fractured sleep with the added drain of having been fighting my subconscious all night long.

Last night though, for the first time, I dreamed about Ethan. He was adorable and happy and pink, and I have no idea what we were doing, just that it was something totally normal. Maybe I was putting him in a carseat and we were going to the store, something ordinary and mundane and perfect like that. I can't remember. I woke up grasping at the memory of his imagined face as it slipped away, realizing that Zoe had just slept through the night for the first time since I can remember, and I just knew that today was going to be a good day.

It wasn't.

It's cruel, honestly, how it sneaks up on me. How it can be a perfect, sunny morning where I'm playing with Zoe and her cousins at the park, and then all of a sudden there's a mama who just walked up with her toddler daughter, her newborn son wrapped snugly against her chest, and I'm trying not to cry right there next to the slide. Because that was supposed to be me this summer. That was supposed to be Zoe slipping her hand from mine and running towards the swings while Ethan squirmed closer to me and slept in the warmth of the sun and my body. And sometimes I still can't believe that it's true.

My silent tears were interrupted when Zoe made a beeline for a bunch of bikes that had been left on the ground by a little group of boys who were busy on the monkey bars, excited that there were other toys for her to play with, too, and she couldn't for the life of her understand why I was telling her that she wasn't allowed to climb on for a ride. When she finally stopped fighting me on that one, she headed for a group of girls clustered under the slide, confident that they'd want to play with her, but they just ignored her until she wandered away again.

In her world, the toys at the playground are for everyone, and any other kid she comes across is more than happy to stop and entertain her for a little while. In her world there are no strangers, and today at the park I was so desperately homesick for that world that I felt like I couldn't breathe for a minute or two.

I'm starting to understand why I never felt reverse culture shock when I came back to North America for a visit; I knew I wasn't staying. I knew that in a few days or weeks I'd be back on board my floating home where life is, in a strange way, easy and predictable. (As easy and predictable as living on a ship that docks in a different country every year can really ever be.) But now that I'm begging God to let my son live, I know that every time I choke out one of those desperate prayers, I'm asking Him to plant me firmly here on dry ground, far away from the ocean that my soul is already thirsting for.

Phil just forwarded me his travel itinerary; he heads back to the ship early next week and will be there until the sixteenth of May while he ties up loose ends and figures out what to do with our stuff. (Ship friends, if you've had your eye on anything in cabin 6210, now's the time to speak up.) I want to be happy for him, but I'm jealous. Horribly so. He's always been much more matter-of-fact about life than I am, so knowing that he gets that time to say goodbye to the place we've called home for six years while I sit here, watching and re-watching the seven seconds of video I happened to shoot while the Land Rover rolled past our waving friends as we headed for the airport? It sucks.

I used to joke that I wanted to slip away when we finally left, to leave when no one knew we were going, but now that it seems it's happened, I just want to go back and do it right. I want to sit in the cafe for one last Tuesday morning, sharing croissants and chai with the other mamas while the kids play at our feet. I want one more Tuesday night dinner of rice and beans and fried chicken in a dining room with two hundred other people, one more Wednesday morning to meet with patients for speech therapy in E Ward. I want one more Thursday night community gathering with Zoe raising her hands in worship and refusing to sit with anyone other than one of her African uncles and one more lazy Saturday morning spent by the pool. I want to walk through the market just one more time, to hand my baby off in exchange for someone else's, to barter for a good good price and feel the dirt on my feet turn to mud as the sweat rolls down my ankles.

I want to go back, and I'm sure part of it is because going back would mean that none of this is true, that Ethan is fine and we just have to sort out how to juggle nap times with two kids instead of having to deal with the reality of a toddler whose world just keeps getting turned upside down while her critically ill brother is in a hospital that's an hour and a half away on a good day.

My friend recently preached about the passage in Mark 5 where Jesus drives out some demons into a herd of pigs and they all go running off a cliff. Over pizza on Friday, he shared with me a thought I'd never had about the story: once Jesus did that, once He sent those pigs over into the water, the people in that village had two choices. They could worship Him for who He had just proven Himself to be, or they could ignore His power and just be angry that He'd destroyed their livelihood.

Well, He just took my two thousand pigs, I said without really thinking. I guess I need to figure out how I feel about it, too.

I really didn't think much about it until today, but it's true, isn't it? That's what's happening here. Everything I held dear, the things and the plans and the routines in my life, all of it has just gone running over the side of a cliff, and I have no way of getting it back. I'm stuck standing on the precipice, watching the tide wash my life away, and when I turn away from the edge I'm face to face with the One who let it happen. And I can't decide whether I love Him or resent Him, whether I trust that He knows what he's doing or whether I think He's made a huge mistake. Whether I want to walk forwards or just let myself fall.

But as I sit here, the house quiet around me in the middle of yet another long night, I know deep down that turning to face Him was the first step. That walking away from that edge will be the next, and that His arms will be open to receive me when I'm ready to take it. And that for all the steps after that, while my old life sinks beneath the waves, I will have what I need. It might not look the same anymore, but really, who needs two thousand pigs?

Every time I come into the States for a while, my mum actives my ridiculously old cell phone and gets me a new number. (I am most likely the only person around still rocking a flip phone. I'm cool with it.) It takes a while for me to get that number out to friends and family, and this time around the only people who have it are the aforementioned mother and the myriad of doctors, nurses and other parts of the team we're rapidly building for Ethan.

Needless to say, my heart skips a beat every time the thing rings.

Today I got a call I wasn't expecting until the end of the week at the earliest. The genetic counselor was brisk and cheerful as she reported to me that the final piece of Ethan's amnio results are back and that all his chromosomes are officially normal. We chatted for a minute about what that meant, I resisted the urge to ask her whether she was playing an April Fools trick on me, and a little while later our favourite nurse from the maternal-fetal medicine practice (also known as 'MFM,' the people your regular OB sends you to when there's a problem; I should start a glossary in the sidebar. I feel like we're going to need it...) called me back to make a plan for my next appointment with them.

As it turns out, they would have wanted to see me not very long before I'm scheduled for my big appointment down at CHOP, so we agreed that we can just let that be the next step rather than trying to fight with insurance to cover yet another visit here. So from now until April 23rd, I'm officially just hanging out, growing a baby and being a regular old pregnant lady.

I flipped my dinosaur phone closed, e-mailed Phil, and burst into tears.

It was an absolutely bizarre moment. I sat there, crying my eyes out, and I could not for the life of me figure out why I could still breathe so easily, why the familiar fist wasn't closing tight around my throat again. It's been less than two weeks since we first found out about Ethan's heart, but somewhere in that space of time, I've managed to forget that tears can come with anything less than anguish, that sometimes the dam that breaks is one of exultation instead.

I've been in limbo, I guess, which is not really my favourite place to hang out. Knowing as I do that heart defects are so often associated with major chromosomal issues that impact so many other areas of development, I haven't been able to allow myself to really, truly hope that our road would end in anything other than heartbreak. It's like something inside me has been holding me back, and I'm not sure whether it was my practical side for once winning out over all these emotions or the fact that I had to come to a place where I believed in the certainty of losing my son before I would be able to trust that I'd be given the strength to carry on no matter which road we ended up walking.

I'm tempted to think that it was the latter. Because that road? It just got a whole lot more complicated. We are officially fighting for our boy's life. That fight is going to be long and it's going to be brutal in places, and we still don't know how it's going to end. And that scares me. In an awful, tragic, I-shouldn't-even-be-thinking-this-let-alone-typing-it-out kind of a way, it would almost have been easier if he had had some kind of major genetic disorder that was incompatible with life. We would have loved him and let him go, and while our lives would have been forever changed, they'd still bear some resemblance to the one we were living two weeks ago.

With that phone call this afternoon, it suddenly got real; everything changed. I am the mama of a heart baby. He will require long hospitalizations, multiple open heart surgeries (and probably a few on parts other than his heart), therapies and medications and a list of doctors longer than my arm just to coordinate his care. He will never be medically cleared to live on the ship, and so when that phone rang it meant that we just moved back on land, years and years before leaving the sea was ever on the radar. We will need jobs, checkbooks, a place to live. We'll have to buy cars and dishes and clothes for all four seasons, and wasn't it just five minutes ago that the only thing I worried about was whether I was going to get in the waffle line fast enough on Friday morning?

It's bewildering. It's petrifying. And I couldn't be happier.

Because today and every day from now until the end of his life, whenever that is, I will get to stand in the gap for my son. And this is pretty much how we feel about that around here:



I know there will be more to come as we face the myriad details that need to be worked out. As of right now, I honestly can't process the fact that our time with Mercy Ships might have just ended. (See? I can't even type it out. How am I actually supposed to believe that I walked down the gangway for the last time without even knowing what I was doing?) I'm sure that will come with time, so I'm going to need you to bear with me while I work it all out. It's hard to turn your back on everything familiar and head out into the unknown with no warning and even less in the way of a plan.

But today's not the day to think about all that. Today's the day to be happy, to soak in the knowledge that the little boy currently doing flips inside me is one I might just get to hold in my arms on the outside. To finally let myself put his star jammies in the wash because he might just get to wear them after all.

That's plenty for today.

Today's prompt: Mighty.

Go.

I have to wonder whether these words have been chosen in advance by a hand far more careful than Lisa-Jo even realizes. Joy last week, when it seemed the most impossible thing to find, and then this week the reminder and promise that this son of mine is far stronger than I could possibly imagine. And it's not just Ethan who is living up to his name, proving with every small piece of good news that he is deserving of being named strength. He is not the only mighty one in all this.

The past week has been a whirlwind in every sense of the word, a hurricane of change and uncertainty tearing at my heart, picking up everything I took for granted about my life and depositing me squarely in a country that's as unfamiliar to me as Oz could ever have been.

I had no idea how weak I really am, or how strong, no way of knowing how those two parts of me could coil and mix and fight for the upper hand every minute of the day as I strain to hold on to what I know with trembling fingers.

I'm coming to realize, in the quiet pockets of air, the many small eyes this storm seems to have where I can stop and sit and breathe for a moment without feeling like my chest is on fire, that this strength I think I own is not mine at all.

Because I am at the end of myself. I've written those words before, never imagining that there was so much further to go before that would be true, never dreaming that it would look like this. This time, though, I think it's true. I am being asked to open my hands, to release my grasp on every single thing I took for granted about my life. And I don't have the option of saying no.

My fists are balling over my keyboard between words as I type, unwilling even to symbolically let go, and it's in this place of wrestling and yearning for a past that's not mine anymore that I am confronted with the truth that will pry my fingers wide.

He is mighty.

Not me. Not Ethan. Not Phil or Zoe or any of the hundreds and thousands of people around the world lifting us up in prayer and loving us in concrete ways. Compared to Him, we are nothing, dust in the wind that whips around me as I write.

It's God who will carry me through this, God who already holds me in His nail-scarred hands. God who knows my pain better than I know it myself, and God who gave everything so that, one day, it will all go away.

He is mighty, and it's a very good thing, because I am not.

-----

So much for Five Minute Friday. I couldn't possibly not write on that word. But I have more than that to share today, a more practical update after all the feelings I've been pouring out. First, though, I want to show you this:



That's a map I just pulled off of Google Analytics, one that shows all the countries where this blog is being read and where, I'm hoping, people are praying for Ethan. I keep looking at it and wanting to cry because how can it be possible that the whole world knows about our baby boy? It's not just me, right? This is awesome?

So, given the fact that you're out there, all over the globe, I want to let you know (as best I can) what's going on and how specifically we'd like you to pray for us.

I know the majority of you reading this aren't medical, so I'm going to try and keep this understandable. Forgive me if I lapse into medical speak; I've been throwing these words around for much longer than just this past week, and I'm grateful that my nursing training has provided me with such a strong base of knowledge going into all this. It's certainly helped make things at least a little bit easier during a very hard time. So bear with me, because this might be a bit long.

Right now, Ethan has a preliminary diagnosis of a syndrome called heterotaxy. We think he has the right isomerism version; it's explained a bit in that link. Heterotaxy is rare. Like, four in a million rare. In the most basic sense, it's caused when the baby's internal organs get rotated wrong while they're forming. This has led to some major defects in his heart. I don't want to go into details about his heart yet, since there are still a lot of unknowns; he was stubbornly in a bad position during his last scan so there are still things they haven't seen, and we won't know for sure what we're dealing with until after at least one more echo (heart ultrasound).

Heterotaxy is not necessarily associated with chromosomal issues, but in order to rule those out, I had an amniocentesis done last week. The first half of the results are back, showing that Ethan does not have any trisomies (think Down syndrome) or deletions; all 46 of his chromosomes are in 23 perfect pairs. We're still waiting on the final piece of the results, the one that checks whether any of those individual chromosomes are missing tiny pieces or have tiny pieces added to them. Those results should be back within a week.

As if this all weren't difficult enough, heterotaxy doesn't just affect the heart. Ethan's stomach is on the right side of his body (instead of the left where it's supposed to be), and we weren't able to see a spleen on the first ultrasound (another thing common with heterotaxy). Thankfully the sonographer at the amnio was able to see one, but we don't know yet whether it's one of many or whether or not it will work when he's born. The spleen is a vital part of the body's infection-fighting mechanism, so having a functional spleen would be a huge answer to prayer given the fact that Ethan is facing multiple open heart surgeries. There are still questions about his intestines, his liver and his lungs (other organs often affected by heterotaxy), but we might not get those answers until after he's born, either.

This whole thing is complicated even further by the fact that Phil and I met on a ship in Liberia and have been serving as full-time volunteers for more than six years. We don't own anything; no car, no house, nothing beyond what fits into four cupboards on the ship and the two suitcases I brought home with me two weeks ago. I'm a dual citizen of the States and Canada, but Phil is just Canadian, and we've never gotten him a green card. Zoe qualifies for Canadian citizenship but we haven't gotten around to getting it for her since we thought we'd be on the ship forever.

All this makes deciding where to live and seek care for a medically complex pregnancy and an even more complex child incredibly confusing.

Ethan has far too many issues for us to deliver and be followed at our local hospital; he'll need to receive care at a larger cardiac centre. Right now, our first choice is the Children's Hospital of Philadelphia (CHOP). My own big brother had open heart surgery there as a baby, and God has been raising up connections with people in the heart centre there left and right in the past week. We're not sure how this will work out financially, however, due to insurance and visa issues.

I come to you with all of this because we need your prayers. At this moment we feel that God is directing us to pursue care at CHOP, but we want to be very open to His leading and recognize closed doors for what they are if we're faced with them. So please, pray with us.

- First and foremost, pray for a miracle. I so desperately want Ethan to be the baby that they'll want to write about in all the medical journals, the one whose heart inexplicably healed itself between one echo and the next. I know that God is mighty; He can do that if He chooses. But I also know that we live in a world marked by sin and sickness, and so I know that this path will most likely be one of looking for earthly healing.
- To that end, pray that our next echo of Ethan's heart would answer some of the lingering questions about how exactly it's formed.
- Pray that the final chromosomal results would be normal.
- Pray that Ethan's spleen would be a functional one, and that his intestines will not be twisted. (Both of these are longer-term prayers; we won't know the answers until after he's born.)
- Pray that we would be able to work out a plan financially for both me and Ethan to receive care at CHOP, if that's where God wants us to be. I applied for Medicaid today, which would be a huge step in that direction. Pray that my application is processed and accepted quickly so that we can move on with further appointments.
- We have scheduled a tentative appointment at CHOP for April 23rd (provided everything goes through with insurance before then). It would be a comprehensive evaluation, including another full anatomy ultrasound to look at all of Ethan's organs, a fetal echo of his heart, and meetings with all the different members of the teams (obstetricians, cardiologists, nursing coordinators, social workers, geneticists, and a partridge in a pear tree) so that we could work out a plan as to how to proceed from there. Please pray that it would be clear whether this is the right step to take or if we should be pursuing care elsewhere.

We are so grateful for each one of you. Know that I read and reread your comments and e-mails and take strength from your words; it's just impossible to respond individually to everyone with everything else that's going on right now. (I'm should get business cards made up - Ali Chandra: Full-Time Ethan Coordinator) Thank you for walking alongside us on this journey. We'll keep you updated as we know more.

I don't want to leave you with those last thoughts for too long. The truth is, those truly desperate moments aren't the majority of what fills my heart these days. Not by far. But when I sat down last week to write out the impossible news, to share the fact that our lives will never be the same, I felt an overwhelming conviction that I need to be open with you.

I've been writing here for more than six years, and my journey hasn't always been the easiest. Nothing compared to this, I now come to find out, now that all those times of struggle in the past feel like next to nothing next to the current fight. But I've always tried to be as honest as possible about what I was going through, and this new chapter in our journey will be no exception, however ugly it might get at times.

Because I look at the Bible, at David and Job and Jeremiah and all the others that poured out their hearts to God, and I'm not seeing people who sat there and pretended that everything was okay when it wasn't. And I'm not going to do that either. So this is your fair warning; this corner of the internet isn't always going to be glitter and rainbows from here on in. But you'd better believe that when the sun comes out, I'll be sharing that, too.

Today's piece of honesty? The world is kind of a weird place for me right now. Now that the initial shock of Ethan's diagnosis is starting to sink in and become part of the fabric of my life, I'm finding that what I desperately want is for things to just be normal again. I want to be allowed to forget, at least for a minute or two, that we're in the fight of our lives here. I want to be any other pregnant lady, one who gets to be excited about the fact that she just found out she's having a baby boy instead of the one who has to decide how to word the announcement that his life is in grave danger.

I want to have moments like this, when Zoe felt her brother move for the first time, without automatically wondering whether it'll also be the last. I want to be able to just revel in the fact that my daughter's entire face lit up when my son kicked her little hand, to love the fact that she tried to grab his foot right through my belly without wondering if this is the only way they'll ever get to play.



But the world, it would seem, is booby trapped when you're walking a narrow tightrope stretched between hope and despair. I was pretty sure opening the mail would be okay, but then the Carter's catalogue fell onto the table with its customary coupons, one pink and one blue, just like my babies, reminding me that I can't buy clothes for him, not yet and maybe not ever.



Or I check Facebook and find yet another friend sharing that they found out the gender of their unborn baby, their news feeds filling up with congratulations, and while I can honestly say that I rejoice with them, I also can't help feeling sad that I didn't get to have the same experience with Ethan. (Just as an aside, while this has been a bit hard, it's also something I that absolutely understand. Because, really, That's awesome! doesn't really seem like the right response when someone tells you that their baby might not make it, now does it?)

It's the strangers who ask when I'm due and whether I know what I'm having, forcing me to make a split-second decision as to whether I say, A boy on the fourth of July or I'm having the worst week of my life, that's what I'm having. The flip flops at Old Navy that hang way in the back of the store, forcing me to walk past all the tiny baby boy outfits on my way to pick up a new pair. The rattle I'd forgotten I bought for him that falls out of the bag when I go to pull out a new pack of diapers for Zoe. Having to call the OB and explain to the receptionist that I need to ask the doctor whether taking the glucose test will stress my kid out too much and having to tell her several times about his heart before her voice goes quiet and an awkward silence fills the line before she transfers me.

I want to go back to being a normal pregnant lady. One where heartburn and sciatica were the sum of my worries, and I didn't walk into Target silently choosing how I'd answer if anyone asked me about my belly. I want to hope and dream without reminding myself that I need to be realistic, that it's probably best to restrict my plans for the future to just a few days down the road when we expect the next round of test results.

Most of all, though, I want to be able to share the joy that this boy is bringing me without people looking at me with sad eyes and wondering whether I'm just pretending to be happy. Because in the face of all this uncertainty, he is still very much the baby I've been praying for, and I am loving him more each day as I get to know him better and better. He loves sweet things; we discovered last night that salted caramel ice cream is potentially his favourite thing ever while he tried to kick his way right out of my belly. And he loves music, especially loud music with lots of rhythm. He hangs out on the right side of my belly; apparently it's more comfortable there, although he hates when I have the computer resting on him (like I do right now). He just started getting the hiccups a couple days ago, and now he gets them about once a day. He never seems to sleep, at least not long enough to make me worry, and he always, always wakes up with me when I have to get up with Zoe in the night.

How can I wallow in despair when this boy is declaring himself to be so very full of life? I was chatting to my brother's girlfriend just now, and she said that she's encouraged that God is giving me manna for each day. And that's exactly what it is, isn't it? Just when I think it's impossible that I can take another breath or walk another step forward, God gives me exactly what I need right at that moment, sweet bread from heaven in the form of a kick or a hiccup or a nephew who gets all wide-eyed when he learns that his cousin really is the boy he thought was inside Aunt Ali.

Never too much, never too little. Always His perfect provision as I walk through this desert. Manna for each day.

Has it really only been four days? When I do the math, counting the time carefully on my fingers because I don't trust myself to get it right otherwise, that's what I come up with. I just don't understand how it's possible for the sun to have actually gone down and come back up four times. I don't understand how it's possible for it to have happened at all. And yet already the time before I sat in that office across from the sad-faced doctor is fading into a past that feels far more distant than the calendar would have me believe.

I've suppose I've been doing well with this new reality; better than I expected, really. Or at least that's what I've been telling myself. I've been smiling and going about the business of life with a toddler and answering questions and saying that I trust God in all this, but tonight I don't know if I can believe any of that. Tonight I'm not okay.

Zoe just woke up crying, strange for her this early in the night. I went to her, and as I put my arms out for her, she sobbed out one single word. Mama! I sat there in the dark with her curled up against my chest and, although it seems impossible, my heart broke all over again as it hit me that I cannot make it better for my son the way I can for my daughter. And once she was back in her crib, I closed her door, fell to my knees, and lost it.

I want so desperately to trust that God has a plan for all this, to believe that I will have the strength to live through any of the equally terrifying futures we face. But I'm just as desperate to wake up in my bed on the ship and find that this has all been a horrific nightmare, that we'll be leaving later that day to make the journey home where we'll go to that ultrasound and walk out of it unscathed.

God, these words are hard to write. I feel old and worn out and utterly spent, and even as I type this sentence the road yawns out in front of me, dark and angry with no end in sight and there is no way that I will be able to walk it with grace.

I want to scream, to remind God that this is the one thing I said I couldn't do, damn it. Haven't I done enough hard things? I won my battle against addiction, gave up my life on land and moved onto a ship where one by one, babies died under my hands. I got in car accidents, faced hepatitis and dengue fever and lariam-induced hallucinations, and I still went back for more because that's what God wanted me to do. I have sacrificed my time and my health and my family for the sake of His calling.

How on earth have I not given Him enough? Why is He demanding I surrender my son, too?

I know the Christian answer; it rises up as soon as I ask that question, ready on the tip of my tongue and feeling for all the world like one of the hundred meaningless platitudes I'm sure will be handed to me thousands of times on this journey. Because He gave His son for you. And I hate that I'm about to write this, but right now, in the darkness of this moment with my breath still coming ragged and hard, I don't want to hear it.

Because I know it's true, that He is no stranger to this exact sort of pain that threatens to consume me. Because I know that it means that I have to do this. Because I don't want to.

I don't want to be this person, the mother who lives with the knowledge that her child might not live past today. I don't want to believe that I might have to go through the pain of labour just to deliver him and hold him while he takes his first and last breaths. I don't want to wrestle with the truth that he might be born into a life filled with the pain of surgery after surgery, a life lived inside the walls of hospitals and that, after all that, we might lose him anyway. I don't want to look at the little sleeper I bought for him in the incandescent first weeks that I knew he was deep inside me, the one that's part of a set of three that he's supposed to wear in a photo shoot with his two little cousins who will be born one on either side of him, like bookends, because I know that either he will wear it as he dies or he won't wear it at all because he will be far too sick for clothes.

I don't know how to do this. I don't know how to explain how much this hurts, how to ask you to shoulder some of this burden for me when I've spent my life being the strong arms for a grieving mama to cry in and the hand held out to guide her through this horror. I don't know how to hope for a miracle when I know how far and few between they really are. And I don't know how to ask you to pray when there are still so many questions waiting unanswered.

So I come to you with this tonight, this piece of my heart, laid bare and bleeding and hurting more than I thought was possible. Please hold it carefully for me until I'm ready to be strong again.

It's Five Minute Friday, but I can't promise you I'll stop after just five. Because today's prompt is joy, and I have a feeling that's not a coincidence.

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Just before we left the ship, back in the days where I was a normal person, I sat on my couch with a woman who has been a part of Mercy Ships since before I was born. We talked while Zoe napped, and before she left she asked to pray with me. She prayed over our family, over the journey we were about to take from Congo the New Jersey, over Phil and Zoe and the baby inside me.

This child will be a joy bringer.

I wondered briefly, then, if she knew something I didn't. And then I forgot it until suddenly I was facing literally the one thing I have always said that I'm not strong enough to handle.

I have never felt pain as raw and deep and intense as in the last few days. I had no idea it was possible to keep on living when your heart has been torn out of your chest. Come to think of it, I had never realized just how often we talk about our hearts, not until mine was being crushed by the weight of the news that there is nothing I can do to make his better.

I thought of Paula's prayer at some point in the fog of the finding out, and all I felt was anger that she would have spoken those words over the baby who was the reason that all the air had been sucked from my lungs, the reason that my chest was filled with concrete and a million shards of glass.

And then I woke up today, the sun streaming through my window, and I waited for Ethan to move, to tell me that he's still okay, whatever that really means right now. In the moments before I felt his familiar kicks, it hit me.

I am his mama.

I never really felt this way when I was pregnant with Zoe. I was just marking time, waiting for her to come out so I could meet her and we could get on with this business of being mother and child. And up until today, it's been the same with Ethan. I've never been a glowing, happy pregnant lady; it's a means to an end for me, a necessary time in the waiting room until the baby is really mine.

All that has changed.

I know, now, that this time inside me might be the only life Ethan will have. I may never get to hold him and bathe him and swaddle him tight before he takes a nap. I may never see him smile or hear him cry. He may never call me mama, but that doesn't make it any less the truth.

And so I am determined to find joy in every single day that he's with me, in every moment that he's with us. I refuse to spend these days and weeks lost in the grief that's lurking in the shadows, waiting to swallow me whole. I want to dig through the pain surrounding my own heart, regardless of how much it hurts, and throw it wide open to the joy that I know my son will bring me.

He is my joy bringer, my little baby boy.



-----

I wrote those words just moments before getting a call from the genetic counselor we met with yesterday. She told me that Ethan's preliminary results have come back and they show that he does not have any of the three major trisomies (Down syndrome, T13 or T18), all of which would have pretty much meant that surgery would not be an option.

I'm shaking as I type this, allowing myself maybe for the first time to hope that we will get to fight for Ethan instead of having to let him go as soon as we meet him.

The road ahead is still long and uncertain. We will be waiting 1-2 weeks now for the final results from the amnio, and based on what that shows we'll have many hard decisions to make.

But for today? Today we have Ethan, and we have the joy that he brings us.

Today was the first day of spring, bringing with it all its promise of life after a long winter. Yesterday was the worst day of my life. I have no idea how to reconcile the two.

Years ago, Phil and I sat together next to a waterfall in Sierra Leone where we chose the name we'd give the daughter we'd conceive a few weeks later and the son we prayed would follow sometime after that. Yesterday we learned that the little one growing inside me is that little boy we've been longing for, the child we've been dreaming of since before he was anything more than a desperate hope nearly drowned out by the rushing of the water. Our Ethan, whose name means strength.

I laid there in the ultrasound room, watching the black and white and grey dance together on the screen as my son kicked and squirmed away from the tech's probing touch. I pointed out his spine and his ribs, his little hands and the perfect curve of his chin to my sister who sat next to me, a stand-in for the husband who's across the ocean in England at the moment. We watched his heart beating, heard the steady rhythm fill the room. And then I kept watching, fear creeping in at the edges of my mind while his heart danced on the screen for far, far longer than it should have. I closed my eyes, prayed that I wouldn't hear the words I knew were coming, and fought to keep from screaming when the tech turned to me. I'm just going to ask the doctor to come and take a look.

We sat in her office a few minutes later (or maybe a few lifetimes; it's so hard to know), and her face bore the practiced mask of someone about to make your world come crashing down around you.

This will be hard to hear.

She quietly explained that Ethan's heart is extremely deformed, that his stomach is on the wrong side of his body, that she didn't know if he had a spleen. That all of this might be the symptom of an even more devastating genetic issue.

That she didn't know if he would live.

And the whole time he was moving inside me, his kicks always far more insistent than his sister's ever were, and so surely there had to be some mistake. Surely it was someone else who had just been plunged without warning into the middle of her worst nightmare. Surely that sound was coming from someone else, the keening wail that marks a mama whose own heart has just been broken beyond repair.

His name is Ethan. His name is Ethan. His name is Ethan. I spoke it over him like a prayer, as if repeating it often enough could somehow make it all okay. And I sobbed in my sister's arms, because nothing would ever be okay again, not like it was on Tuesday or Monday or any of the days before then, the days for twenty-four blissful weeks when the baby inside me was perfect and the only thing I worried about was when he'd start sleeping through the night.

The next hours passed in a fog of doctors and ultrasounds and a laundry list of letters spilling from the mouth of a pediatric cardiologist who sat with us in an incongruously cheerful room while he tried to draw us a picture of a heart that's anything but what it should be. DORV, AV canal, T/PAPVR, pulmonary stenosis, heterotaxy, right atrial isomerism. Words for things I learned about years ago in school, things I saw in the PICU, in patients too sick for me to take care of, words that are now a part of our story forever.



Sister and I pulled up to yet another hospital this afternoon, and she stayed by my side while yet another doctor pushed a needle deep into my uterus to take some fluid from around Ethan, to send it off for the tests that will tell us just how badly damaged our little one is.

There are a thousand details of these past, impossible hours that I want desperately to forget and a thousand that I want to hold on to as I turn to face the even more impossible days and months and years that stretch out in front of me.

The sound of his heart, strong and steady every single time they wanted to hear it. The way he danced around inside me while they tried to monitor him but laid perfectly still when it really mattered. The doctor who found us a place to sit so we didn't have to face the happy mamas in the waiting room while I called Phil to tell him the news. The nurse who gave us directions yesterday from one hospital and somehow showed up at another one today to steer us to yet another appointment while she made sure that nothing was being missed. The sonographer who printed pictures of my son's tiny little feet for me and the doctor who talked about him like he was far more than just the sum of all these broken parts.

The way my baby boy kept me company through the darkest night of my life, kicking and rolling and reminding me with every little movement that God promises strength for today, that His mercies are new every morning no matter how long the blackness seems to stretch.

I don't know how many days are written in the book of Ethan's life. I know that yesterday was one of them, that today was another, and so at least I have this, these precious gifts of time while he rests in the safety of my body.

The future is uncertain. We have no idea if Ethan will make it to delivery, whether he would even be able to survive the many surgeries he would need if surgery is even going to be an option.

I have no idea how to be this mama. I have no idea how to fight for my son's heart while my own lies in pieces around my feet. But I have him for today. I have my Ethan and I have my God, and so I have my strength.

Strength for today.