First Christmas

Yesterday my husband and I celebrated our first Christmas together married.  We spent Christmas together 2 years ago when we were dating (but not last year since he was still out at sea working a cruise ship contract), but this was the first one we’ve been married for.

He had big plans to make an elaborate Thanksgiving-esque Christmas dinner (since we don’t do Thanksgiving the typical American way since it’s always planted right in the middle of the Nativity Fast).  Since he had his heart set on turkey and I know my mum HATES to cook turkey, I offered to let my parents and sister join us at our little apartment for our Christmas dinner.

It all went pretty well.  The stuffing we made was delicious, the turkey (which my husband dubbed the “Scarborough Fair turkey” since it was seasoned with parsley, sage, rosemary, and thyme) turned out surprisingly well (though we unfortunately had to cook it longer than planned which delayed dinner’s beginning), and the potatoes and gravy were just fine.  I misread the recipe (more like I forgot we were only making 1/3 of it) for the brussels sprouts and put too much salt in–otherwise they would’ve been great.  Instead they were just OK.  At any rate, we had a very nice time using our still-pretty-new fancy dishes (another reason I wanted Christmas dinner at our place!).

My parents and sister had a good time, too, despite the dinner delay, and I have to admit it was really nice to be home in our own place at the end of the day.  I was–and am!–exhausted.  I wish I could’ve had today off of work as well.  Next year if we can do it, I think I’ll take the 24th and 26th off of work as well.  But who knows where we’ll be living or where I’ll be working by then!

Christ is born!

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Christmas on the way

I am so anxious for Christmas.

It is one of my favourite days of the year, and nothing seems like it can really go wrong on Christmas.

I love Christmas as an Orthodox Christian because we have spent so long preparing for it.  We have fasted and prayed, and there are so many wonderful saints commemorated during the Nativity Fast who lived in such truly Christlike ways that are tangible and inspiring to us that I feel like it makes the Christmas season all the more exciting.  Our parish typically has several Liturgies each week of the Nativity Fast to celebrate these saints.  I regretted being unwell and over-tired too often to make it to most of these Liturgies (and unfortunately many of them were during hours I am supposed to work).  We did attend Vespers on weeknights whenever possible though.

It has yet to snow this winter, much to my surprise.  The winter seemed to hit early and hard this year, and two weeks ago we hit -15F a couple of times.  It’s warmed up considerably since then and the only precipitation we’ve gotten is a bit of rain yesterday.  Doesn’t look like we’ll get snow before the new year either, sadly.

This is my first Christmas away from “home.”  We’ll still be spending it with my parents, but this is the first year I have not lived with them for Christmas.  Through college, I always came home for the 6 weeks we had off in between semesters.  This year I am married and living with my husband.  We are technically in a different city, but it’s very close.  It’s different.  I feel “homesick” a lot, which is a strange feeling when “home” is with my husband.  I love him dearly, and I am seeing more and more each day since we got married almost 7 months ago just how perfectly he and I fit as a team.  He has plenty of flaws–as do I!–but he so often is there for me in exactly the way I need him to be, and his selflessness and generosity bring to the surface the things in myself I need to fix (which aggravate me!), which is exactly what he should be doing.  So why do I feel “homesick” just because this year is different from what I’m used to?

As excited as I am for Christmas, I have found myself growing less excited for it this year than I anticipated.  Next week, I will be 28 weeks pregnant, and provided I don’t go into labour early or the baby dies in utero, that means we will only have a few weeks left with the baby.  Two months ago, I certainly did not expect Christmas to be clouded by that.  I expected being like my other pregnant friends: attending birthing classes, researching diapers and breastfeeding, figuring out what the essentials we needed for raising a little one in a one-bedroom apartment are, having baby showers.  Instead we need to order a casket (per our spiritual father’s advice), find a cemetery plot, and grit our teeth every time someone asks or says something about our baby.  Maternity clothes shopping is the worst.  I have attempted to get by without maternity clothes (and been successful), but there are a few things I can’t fit into adequately anywhere else.  The lady who works at the store is very chatty and asks tons of questions about what plans we have for the baby.  Sometimes I feel like just telling her that our baby isn’t expected to live and we’re just enjoying the time with it for now.  But I feel like that would sound too bitter and cruel.

When my parents asked what we needed so she could know what to get us as gifts for Christmas, I really couldn’t think of much, since formerly the only things we needed were baby-related.  That made me feel sad all over again.  I went shopping with her since she gets upset if we don’t give her detailed lists of exactly what to get.  I honestly didn’t really want anything, but I didn’t want to offend her and make her think we don’t appreciate her generosity.  We do.  They have been so good to us, especially after learning about the problems with the baby.

I feel like the grieving has clouded Christmas for me a little, but I’m trying not to let it as best I can.  It is comforting that no matter what we feel Christmas is about (gifts, families, snow, etc.), what it actually is can never be changed: it is the incarnation of Christ, the beginning of our salvation from all this pain, suffering, sadness, and death.  Because of the Incarnation, the gap between sin and godliness can be traversed.  And because Christ destroyed death as incarnate man, we do not have to fear death for our child.

Christmas this year is joyful-sorrow for us.  It is my hope every day that I can attempt to emulate the lives of the saints who suffered great tragedies, struggles, and martyrdoms in their joyful-sorrow.  It’s easy to be sorrowful and easy to feign happiness, but to actually feel the joy in realising that this present sadness is not all there is and to be always looking up for heaven and the fullness of life there is definitely a daily challenge.

A couple of helpful infant bereavement websites

A website I have found very comforting and helpful to read in the past month+ has been lostinnocentsorthodox.blogspot.com.  It is mostly about miscarriage–I would say most of it is about first and early second trimester miscarriage for Orthodox Christian women–but it represents many of the same sentiments I know that even we feel, knowing that our baby has a very, very high chance of not making it.

While perusing the website again tonight, I was scrolling through the links and tried one of them: http://angelbabiesinfo.com/  As it turns out, it is a website created by a woman who had a baby with Potter’s Syndrome.  It isn’t as extensive as Lost Innocents in material, but it is a good extra resource.  I am glad there are things like that out there, to help us deal with our grief and pre-grief.  It is sad that others have gone through the same thing, but it certainly makes me feel like we aren’t alone.   

“Home,” by Phillip Phillips

While I know this song may be overplayed, overheard, and perhaps not-as-appreciated as it might be due to its popularity, I am not enough of a hipster to deny that I love this song and it has been especially powerful and meaningful to me lately. It has been stuck in my head, and I have been perfectly fine with that.  Just look at how fitting these lyrics are, how encouraging they are in light of our present sadness:

Hold on, to me as we go
As we roll down this unfamiliar road
And although this wave is stringing us along
Just know you’re not alone
Cause I’m gonna make this place your home

Settle down, it’ll all be clear
Don’t pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found

Just know you’re not alone
Cause I’m gonna make this place your home

Settle down, it’ll all be clear
Don’t pay no mind to the demons
They fill you with fear
The trouble it might drag you down
If you get lost, you can always be found

Just know you’re not alone
Cause I’m gonna make this place your home

Being Given Options and Being a Selfish Parent

I thought we had everything figured out today.  That was before the appointment with the doctor.

For the past 5 weeks, we’ve been hearing the same sorts of things and been able to cope with it:

  1. Mother (me) has very little amniotic fluid (which turned into none last week) which is essential for baby’s development and well-being.
  2. Baby has no kidneys or bladder (which accounts for lack of fluid) as far as the doctors can tell (if they exist, they aren’t functioning since the renal arteries don’t show any activity).
  3. Baby will either die in the womb from compressing its own cord (thanks to no fluid), or will die soon after birth because of inadequate lung development.  We were told that even though there are no kidneys, usually these babies die of lung failure, not kidney failure.
  4. The baby will be born early, most likely by 28 weeks, which is the week after Christmas.
  5. There is nothing we can do, and nothing even these specialists from the Big City across the state will do for us since our baby has a problem “incompatible with life.”  Our only option is to just let baby die at birth, if the baby can survive for so long.

After the initial shock and horror of learning this over a month ago, we have figured out how to cope with it, more or less.  The day we first got the diagnosis was the first time I have ever seen my husband cry.  He made it through the entire day without tears–just looking numb–until we were saying our evening prayers and he was inconsolable.  I felt very deep despair at seeing my husband crying like that, but at the same time I felt like I wasn’t alone in my own pain.  We were both suffering and felt like this was some horrible nightmare we’d wake up from.  So far, it has certainly been real, and we’ve learned how to deal with it and how to talk about it.

The main things we’ve struggled over talking about is the high probability that our baby will die, and how to prepare for that as faithful Orthodox Christians.  How we will baptise our child if it is born alive, what sort of casket we need to prepare, where we will bury our child.  I have thought through these things thousands of times but had so much trouble vocalising them to my husband.  We have had a handful of sadnesses in the past 2 1/2 years we have been together (and even in the short half year we have been married), but this was unfathomable.  How do people have faith, pray for miracles (and God’s will), and remain practical?  How do we prepare for what the doctors tell us will happen and still leave possibility for them to be wrong?

My husband is certainly more optimistic than I am.  Sometimes I think it is because he is naive, but he probably just has a lot more faith than I do.  I don’t really know and it doesn’t actually matter.  We tend to play the same roles in every hard decision or plan we need to make though.

We’ve met with our spiritual father twice about it so far.  Both times, he has been very positive and has reassured us that nothing is outside of God’s control.  We know that, but we also know that sometimes it is God’s will that the way these things “work out” is not the way we want them to.  He warned us against having “faith in faith,” so that we expect a certain type of divine intervention and set ourselves up for a spiritual disappointment.  He reminded us that God is always intervening in our lives and sometimes we don’t see it.  To see an outcome occur as expected doesn’t mean that God hasn’t intervened.

He consulted with a very holy abbess at a nearby monastery for direction and her advice, encouragement, prayers, and suggestions were very good to hear.  Last night we were able to come up with a plan for when the baby is born.  He advised us to order a coffin (either from a man at our parish who makes coffins, or some other likewise suitable box), reminding us that if we don’t end up needing it, someone else will, unfortunately, need it at some point, and we could pass it on to them.  He suggested it may be possible to bury the baby at the monastery, with the Sisters’ blessings, which we aren’t totally sure about yet–or we could look into purchasing a city plot nearby.  There is no Orthodox cemetery in our entire state, and there are no baby cemeteries around here either.  The cost of a plot is rather astonishing for a fairly poor, newly married couple, but obviously we want to take care of our baby adequately.  Our priest mentioned that we shouldn’t worry about the cost; others would assuredly help us out to make sure our baby is buried properly.  He instructed my husband to make sure to call the priest in town when we are going to the hospital to have the baby, then to also call him (he is out of town) to make sure at least one of them can make it in time.  If there isn’t a priest available, or he doesn’t make it in time, he explained to my husband it would be his responsibility to make sure the baby was baptised if born alive–whether with holy water, regular water, or the air if water isn’t on hand.  He made it clear we should take reasonable efforts to resuscitate if necessary in order to baptise, but also reminded us many times that we believe in God’s grace with babies.  We believe they are illumined at conception; baptism is just always better than lack there of.  If the baby can be baptised, then we can have an infant funeral for it.  Otherwise, there are prayers we can say at a burial at least and we can be reassured that our baby will be in heaven praying for us.  It is important for us to baptise if at all possible of course.

Then today, with our “game plan” carefully discussed and memorised, we went to a series of appointments as planned.  There, we heard something different than what we had prepared to hear.

Yes, they still suspect we are dealing with bilateral renal agenesis (Potter’s syndrome), and yes I still have no amniotic fluid.  Now they are saying, however, that instead of nothing being possible for our baby, it is actually possible to give the baby a chance to live.  This doctor didn’t believe I would go into labour in the next three weeks, nor does she think I will go into labour at all (she believes we will need to a schedule an induction), which is remarkably different from what we had heard in the past and in itself changes many things for us.  She spoke a lot about aggressive resuscitation–basically C-section, then rushing the baby off to intubate and figure out if it can process oxygen.  She said if intubation was successful, then the baby would be transported to a baby hospital to get the care it needed till they could assess if it would live and if dialysis/eventual transplants would be possible.  In the past, C-section was essentially absolutely unnecessary if I didn’t want it (I very much don’t) and we were told that since they wouldn’t help our baby, staying here with my family and our priests to deliver the baby at the hospital on this side of the state would be fine.  Now everything is different.

They are giving us options and that in itself made me burst into tears.  I didn’t think I had any left.

We had finally figured most of the “big things” out and felt comfortable with this.  Now they are saying a lot of new things that I don’t like.

like that they are acknowledging a chance that 1. they could be wrong about their diagnosis, and 2. even if they are correct, it doesn’t have to end like they were saying it does.

don’t like that the options put us into a very difficult position.  If we don’t do everything possible and the baby dies, it’s suddenly our fault that our baby dies.  If we do everything possible and the baby dies, we risk never even getting to hold the baby, not being able to baptise, and risking every future pregnancy (not to mention the side effects I suffer from anaesthesia and pain medication).

When I asked if it was possible to attempt amnioinfusion to assist with a natural delivery, the doctor looked at me like I was a selfish human being who would rather my child died.  Maybe I am selfish, and I can’t stop thinking about it now.  Like if I don’t just blindly accept a C-section that I am a horrible mother who would essentially be fine with killing my child in the womb.  Later today I had to see my former OBGYN who I haven’t seen since the beginning of November, and she basically reprimanded me for having reservations about C-sections.  I feel distraught.

No one will even hear my concerns.  No one cares that I don’t deal well with anaesthesia or even basic pain medications (even Tylenol makes me feel like I’m having an out-of-body experience, and my past two surgeries have caused me to plummet into rock-bottom depression for months after a week or two of delirium).  No one seems to recognise that if I am left behind at one hospital for four days to recover while my baby is sent away to another hospital that I will not see it at all for days, and if it should die, I will never see it.  I am not afraid of not “knowing” it, since I know the baby very well from spending so much time so close and feeling its vigourous kicks and punches.  I am afraid of not holding it, not hearing it cry (if it even can), and not getting to see it breathing (or attempting to), get to see it moving and responding to our words.  I am afraid of being so far away from my family and close friends and the priests we know.  I am afraid of being alone in a hospital away from my baby for so long.  Everyone seems to belittle the very real issues that occur to many women who attempt to have another baby following a C-section.  I have always had a lot going against me in the child-birthing department; I feel like this would be the nail in the coffin to us ever having living children.

I don’t want to be selfish.  I want to give my baby a shot a living, even though I know it is incredibly remote.  I don’t see why the options have to be “do nothing and be merciful” or “do absolutely everything to try” and anything in between is being selfish.  I have never wanted my baby to die, but I know that even with our best efforts, it has a 99% chance (or higher) of not making it.  Is there ever a mark that can just be trying “enough,” and is there ever a point where we are trying too much?  I feel torn a thousand ways.

Value of a Life

I’ve recently been surprised by something I’ve noticed among many people I know.

Even among the most pro-life of my acquaintances, people tend to have an attitude that a human being has worth that is dependent on age.

Karen Santorum really nailed this on the head in her book Letters to Gabriel.  She points out that a person is allowed less grief over an infant that dies at 20 weeks gestation than for an infant that dies at full term, and both are allowed less grief and sympathy than someone who loses a child at 20 years old.  It’s as if people increase in value as their ages increase.  If we believe life begins at conception (and at that very moment a human being receives a soul and is in the image of God), then value cannot increase or decrease.  At conception, we are exactly what we will be.

It upsets me further that the same people who will picket abortion clinics to convince women who are considering aborting their unborn children (which is a very sad thing indeed) will also shrug their shoulders and make less than even half-caring remarks about a woman who expects her child to die shortly after birth.  A child that dies in the womb is worth less than a child that dies shortly after birth, and both are worth less than a child murdered by its mother before birth.  This makes no sense.

I hope that we can eradicate this sentiment among Christians at least, and if more people were aware they were doing this, perhaps they would think more about the message of human value they are developing and sending.

I find peace in knowing at least that God does not rank our value in such ways.  If God is outside of time and if we are created in His image at conception, then of course value cannot be placed on us based on age.

Birthdays

I reached 25 weeks pregnant on my 25th birthday.  The day was much, much harder than I even anticipated it being.

Hearing “happy birthday” felt very sad to me.  It was as if people were saying, “Congratulations on surviving the day you were born when your own child won’t.”

I tried not to, but I cried a lot that day.  It’s definitely getting harder the closer we get, and it could be any day now at this point (although it could also still be two months from now, which makes it just as hard).