Dreams, and other things.

Pregnancy dreams are a thing.

For me, they are almost always nightmares.  Someone's trying to kill me and the kids.  Bad things happen to one of the little ones.  Zombies.  Lots of zombies.  The occasional evil vampire.  That sort of thing.

I thought I had escaped that this pregnancy.  I have not; it's just come on later than I expected.

I used to have dreams about birth too.  Nearly every time I've been pregnant, I had a dream--usually more than one--where I had the baby and she turned into a kitten.  Doug is the only one where I didn't have those dreams, but I still dreamed about having him.

This time...this time the two types of dreams are intertwined.  It doesn't take Freud to interpret these dreams, you know?  (I've always thought fantastical interpretations of dreams were ridiculous anyway.)  I always act out, in dreams, my fears of what's coming up.

Last night I had a dream I was at home, asleep, and was awoken by blood and water and birth.  And some how in this dream the baby had both legs, and a head of hair, and was a beautiful little baby girl.  And I said "Oh, she's got both legs! Maybe the doctor was wrong, maybe this is just an omphalocele that can be repaired!" and I started working on getting us to the hospital.  There was this weird period of calm where I guess we decided to dress the baby and hold her and she got hungry so I fed her and then at some point her omphalocele fell off and I called for an ambulance and yelled at them to get her, to take her and give her some oxygen because I understood she was dying but we needed to get her to the hospital because her dad wasn't at home and we needed to keep her alive long enough for him to see her.

It was an odd dream, and upsetting.  And not the first one I've had.  I had another dream a few weeks ago where the baby was born far too early and we expected her to be stillborn and yet she was just kind of hanging around, omphalocele and one leg and all, because she just didn't realize she was supposed to be dead.

I mean, that much is accurate.  Most of these babies are miscarriages.  The ones who live on, who get anywhere near birth, are the ones who just don't realize they're supposed to be dead.

I know my brain is trying to work itself around this, to reconcile what I know will happen with what seems like it should happen, still, in spite of everything.  I have been feeling very raw and very sad today, back to the crying and telling the baby I'm sorry my love just isn't enough to save him/her; I really do love the baby as much as I can, as much as I have all my other children.  This baby isn't wanted any less, isn't welcomed any less, isn't loved any less.  I understand, cognitively, that these things happen, but inside, my soul and my heart are confused and upset, because shouldn't love be enough?  I mean, I know it's not, but it should be.


***

I posted as a status, a short while back, a very brief version of my last post.  That I realize people pray for miracles out of compassion, but I'm glad I don't have the sort of friends who do that, because the only miracle possible at this point is Erik and I get to tell Psalm-Angel we love him/her.

And someone said something about how miracles can happen; she knows it because her son was a miracle.  He was supposed to die, but didn't.  And I said nothing to that, because there is really nothing productive to say that would not risk being hurtful.

But really, y'all, there is a difference between a severely ill child, between a baby born very prematurely, between a baby with heart problems but otherwise whole and a baby who is missing a leg, and a pelvis, and a diaphragm, and has all of his/her internal organs on the outside of his/her body, that has a spine bent at a 90˚ angle.  God's not going to make another leg, or straighten out the baby's spine, not going to replace all these missing things.  Or even do a fraction of that.  There's nothing to be done here.  Things are made as they are, and God doesn't go back and say "Oops, forgot a few things" and then make them survivable.  Yes, Jesus brought Lazarus back from the dead, but Lazarus was all there to begin with.  Yes, God gave Sarah Isaac, but Sarah had all her parts that were able to make Isaac.  Jesus performed miracle after miracle after miracle, but that was a couple of thousand years ago, and still there is nothing in the Bible about sprouting limbs and straightening spines.

And if the baby could live with all of these problems, would that really be fair to him/her?  I mean, a missing leg is nothing.  Prostheses totally exist.  Omphaloceles can sometimes be repaired.  But the rest of it?  It's not just that one leg is gone, it's that the other leg is severely displaced because of the scoliosis.  Without a pelvis, I don't think a prosthesis would be even possible.  With a fucking L in his/her spine, I doubt a wheelchair would be reasonable.  With a diaphragm either gone or so small or so out of place it couldn't be found on the ultrasound, with a severely underdeveloped chest because of the ompahlocele, how could the baby even breathe?  At best it would be necessary to inflict surgery after surgery on this child, pain and pain and pain...and for what?  For some unknown outcome?  I'm not an ableist; I don't believe that without everything, nothing is worth having, but at the same time I'm not willing to make my child into a medical experiment just so I can say I never lost a baby.  I've got to love...and then I've got to prove that love by letting go.

Miracles

I have seen the word miracle thrown around a lot in regards to these babies.

Some women pray for a miracle their entire pregnancies, pray that God will somehow make their baby whole. 

We've been told since the beginning by well-meaning people that ultrasounds don't know everything, that perhaps we'll find out it was wrong.  (They just happened to not see a leg or an umbilical cord, somehow, in spite of these things routinely being sighted via u/s.)  I suppose that would count as a miracle on its own.

I've seen Psalm 139:13 quoted quite a bit: For you created my inmost being;
 you knit me together in my mother’s womb. I keep thinking "Hey, God, you dropped a few stitches."

I don't do well with predestination.  I'm very much a God is hands-off sort of person, almost Deist in my belief that He set things in motion and then took a step back.  

So I don't pray for the miracle of a whole child.  Not that I resent or look down upon those who do.

I still pray for a miracle, though.  I pray for the miracle of some time with my baby.  Just a few minutes, God.  Just enough time to tell Psalm-Angel I love him/her.  Please.




Today's mental soundtrack:

I don't even have a title for this one...

A couple of weeks ago, I requested a perinatal hospice kit from Sufficient Grace Ministries, and asked to be a part of their Facebook support group.  From the infant death group I was referred to a carrying to term group, and it was there, after I introduced myself, that one of the admin from a group dedicated specifically to continuing pregnancies with LBWC contacted me and invited me to join her group.  (The admin is Sarah Marie, of She Brings Joy and also the informational page LimbBodyWallComplex.net; both of which I have linked here.)

It's a small group, but still larger than I expected.  I suppose it makes sense, though.  If there were 3,952,937 births in 2012, then there were perhaps 282 - 395 babies born with LBWC that year (though it's a rough estimate, since I don't know how stillbirths are worked into the birth rate, or whether they are at all).

The good news, of course, is that I have found a community of people who know exactly what I am going through.  Every one of us is dealing or has dealt with the exact same thing.  I can ask them the questions I couldn't ask anywhere else, and know they will have a good answer.  I was able to read back through old posts and get a better idea of how long people carry (one carried to 36 weeks and another to 38, though earlier births by far are still the norm).  I was able, through photos and replies, to know I can make the baby something to wear; his/her omphalocele shouldn't prevent clothing.

The bad news isn't really bad news.  It just is.  Sharing the journey means sharing the entire journey, and there is simply no happy ending to be had.

This was brought home again yesterday, when one of the members (who seemed to be the only one other than me still pregnant) posted pictures of her little angel.

I actually added her blog just a few days ago.  She has posted about her tiny one here, photos and all.  I am heart-broken for her.  The baby is beautiful, and tiny, and in another world she would be taking him/her home, but not this one.

She knows how I will feel; I will know how she feels.  It's a broken sisterhood, but I am thankful for it all the same.

A few things

I've been going through the Book of Common Prayer supplements and have found a few things that are comforting...

I want these worked into Psalm-Angel's service somehow.  Perhaps there will not be room for the Litany of Complaint, but I love that it is there anyway.

And in reading I found that one of my favorite hymns, though not in the 1982 Hymnal, is nevertheless acceptable for the service.

So this can be sung:

not that

I can respond positively to news of others' pregnancies...

I can smile at ultrasound images...

I can congratulate people on their healthy births...

I can even look at newborn pictures all day long without wanting to cry too much...

But I cannot read birth stories.  Nope.  Tried.  Got through about four paragraphs, then had to stop.  I can take pregnancies that will probably be happy and baby pictures that definitely are happy, but I cannot take birth stories.  Labor has always been a painful, scary thing for me even when I go in with the expectation of a happy outcome.  With the knowledge that only heartbreak awaits...No.  I can't look at it too closely.  I just can't.

Remember

I'm going to use this post as a reminder to myself of the things I want to do to memorialize Psalm-Angel.  I'll update it when I have something to add.

I'm making/will make

• crocheted blanket
• crocheted hat
• crocheted gown 
• scrapbook

I don't know if we'll be able to use the gown, but I want to have it anyway.

I want to take these things with me to the hospital:

• ink pads for hand and maybe foot prints
• camera and extra batteries
• scissors to take a lock of hair/baggie to put it in

I want to remember to cut a lock of baby's hair.

Maybe we'll make a shadow box...

Then suddenly...

Hiccups?

Can you even have hiccups, child?  We were told you don't have a diaphragm, and I thought you needed one of those for hiccups.

Ah well, I will enjoy it.

***

Movement isn't something I expect much of this pregnancy.  Between Psalm-Angel being adhered to the placenta and only having one leg, I doubt that much movement is possible.  But I remember the first in-office ultrasound, where s/he had their little hand up by their face and waved and maybe swallowed.  And then s/he slapped at the doppler at the last appointment.  So movement is possible, at least some.

But I wasn't really feeling any.  Until this week.  And suddenly it's a daily thing.  And it's awesome.

Planning

We met with the associate rector at church this morning.  Funny thing that; we ran into one of the workers whom I know fairly well, and of course the church secretary is someone I know, and I just kind of ignored why we were there.

Rev. Morehead was wonderfully helpful; she assured me she could come to the church and do a baptism, and also mentioned a naming ceremony.  I have a small copy of the Book of Common Prayer which of course has the funeral liturgy in it and suggested readings to go through.

We've decided, tentatively, to have the service in Bethlehem Chapel rather than the main sanctuary.  It is much smaller, seating about fifty, and the stained glass windows are all devoted to the story of Jesus's birth and childhood, which I find incredibly appropriate.

We still need to contact funeral homes; I have no real idea who to use, or whether it would be simpler to go with a direct cremation.  I suppose making a list and some phone calls is the next step.

But it can wait, for now.

How do I say this?

Took the youngest two out to lunch yesterday and today, and the boy napped better than he has for a long time.

Because of the HG, I can't walk much when I'm pregnant.  But I think the outing may be enough to get Doug to nap properly.

So I want to say "I'll start taking them on walks when..."

When what?

First impulse: "Once the baby's here, I'll start taking them on walks daily."  But the baby's not going to be here.

So do I say "Once I'm not pregnant anymore..."?  That just sounds cold.  And wrong, even though it's factual.

In the end, I said nothing at all.

Giving the baby as much as we can.

If you knew Sabra or me in real life, you'd know that we love to eat — particularly at certain San Antonio landmark restaurants. Well, we've hit up several of them in the last couple of weeks. What's that got to do with Psalm-Angel Guadalupe?

Well, right after Sabra and I got the news, we got the idea to take him/her to as many of those places as we could before the time came. Why? To give him/her as much of what we do in San Antonio as we could before the time comes. Yeah, there's no Fiesta or Rodeo, but of course there's not a whole lot we can do about that. So far, we've hit up Lulu's (best chicken-friend steak ever, w00t!), Armadillo's, and Broadway 5050. Sabra and the younger two (Marie and Douglas) hit up Bill Miller Bar-B-Q today. And I brought home Whataburger last week. (I should go for honey butter chicken biscuits this weekend…) What next? Most likely Schilo's Delicatessen, this coming Monday.

I can't explain exactly why, but strangely enough, this helps in its own minuscule way.

What the hell am I doing?

In my first pregnancy I was diagnosed with hyperemesis gravidarum (HG); essentially very severe morning sickness.  Unlike some women, I have never needed to be hospitalized for this, but I have become severely dehydrated a few times and had to go in and receive IV fluids.

I've got five kids in spite of this.  I refuse to let my life and reproductive choices be ruined by HG.  I've always taken the viewpoint that it's a tiny bit of my life, and a tinier bit of theirs.

It's worth it, in other words, to get a baby at the end.

The HG is no better this time around.  If anything, it's been worse.  And I'm going through it, and I'm not going to get a baby at the end.

What the hell am I doing this for?

Really, I can understand the women who choose not to continue their pregnancy if there's not going to be a live baby at the end of it.  It's actually a lot of time and effort and pain to put into something futile.

I'm not sure why I'm here, other than it's the right thing to do.

Haunting

(Sorry, that's really the best title I could come up with for this entry.)

Things haunt me. Come back to my brain when I least expect them, namely the memories of the ultrasound. I remember thinking, this can't be happening...

...missing leg...

...heart protruding...

...organs outside of the body...

...no diaphragm...

...rupture...

I remember my brain screaming, NO, NO, NO!

I remember saying, barely out loud to the ultrasound tech, "Rup...ture?"

I remember Sabra saying "Hush" as I said that...

I remember thinking that shit had gone rodeo for sure and certain, when Sabra asked if they could tell if the baby was a boy or a girl. We've always been diehard Team Green fans.

And all of this is going to haunt me until the day I shuffle off this mortal coil.