Meeting Ayden - Part 1

It would be impossible to tell the story of when we finally met our precious girl without telling of the week leading up to her arrival.  We had a doctor appointment on Tuesday morning, and Ayden’s heart was still beating strong.  Dr. Calvert was once again amazed at how well Ayden was holding on, and how active she was.  We did another ultrasound, they printed more pictures for us, and we listened to her heartbeat.  I was already 3cm dilated and 100% effaced, so we knew that her arrival was very close.  Nathan and I had both originally planned on working all week, but both decided to take the week off.  This was mostly Nathan’s doing…I didn’t see a purpose behind not working while I could, but my husband is oh so wise, and talked some sense into me.  For this I will be forever grateful.  And yes, I even told him that.  Having the week off together meant just simply being, as a family, and treasuring every possible moment.  We did our best to make final preparations for her arrival, and spent a lot of time around family and friends. 

There were multiple points during the week where we thought we were going to go in to the hospital.  Wednesday night/early Thursday morning, I was having contractions 5 minutes apart for over an hour.  We called the hospital, they said we could wait a bit to come in, or come in then.  We decided to wait a bit before heading in, and the contractions just stopped.  We went back to bed, woke up the next day, and no contractions.  This happened on and off all week.  At this point I was sleeping on the couch, because of how uncomfortable laying down was, and how often I needed to get up and move around.  This meant very little sleep for Nathan and myself all week, but we were managing.  On our due date, Saturday the 21^st, we really expected Ayden to be born.  But, our Little Fire once again had to demonstrate that we had absolutely no control, and I had absolutely zero signs of going into labor.  So what did we do? 

We went bowling.

Yes, bowling.  I was getting so bored.  I’d been home all week.  Nathan was getting bored.  Nathan had been taking such good care of us, and he was so worried about us.  At one point, I was sitting on the couch reading, looked over, and he was just staring at me.  For. So. Long.  Finally I said something along the lines of “this can’t continue” and he stopped.  At one point I stood up to go to the bathroom and he asked me where I was going and what I was doing.  I absolutely love and appreciate his love and concern, and how close of an eye he was keeping on me and little Ayden.  But. We needed to get out of the house.  Nathan looked at me and said “you probably can’t bowl, can you?”  Challenge accepted.  “Um, why wouldn’t I be able to bowl right now?” I asked, with what could be considered a very stubborn look on my face.  So I put on my shoes, and said “let’s go!”  We invited a few friends to join us.  When we got to the bowling alley they looked at me and laughed, and asked if I should be bowling. 

Challenge even more accepted. 

We got ourselves situated in the bowling alley, and I’m not going to lie, people were staring, and I don’t even blame them.  I was 9 months pregnant, with what looked like quadruplets.  I probably shouldn’t have been bowling.  But I was so bored.  I was the last in our group to bowl, and I slowly but proudly, without waddling, walked up to the lane, and threw the bowling ball down the lane.

Suspense.

STRIKE.

No joke.  I may have slightly freaked out.  Nathan and our friends Jake and Blake were more than slightly baffled.  The people in the lane next to us started cheering and clapping. 

Preggers for the win.  That’s right. Insert awkward 9 months pregnant victory dance here.

It was a very proud moment.  And, it may have went downhill from there, but I’m just going to focus on the fact that my first try was a strike.  Okay, I’m also going to focus on the fact that I demolished Nathan three games in a row.  And I should have beat him on our fourth game.  I only needed two points to beat him.  But I got cocky.  Shocker, I know.  And then I got two gutter balls.  Shame. Defeat. Sorrow. Shame.

Nathan was very gracious about his win and my loss.  Mostly because he is still convinced I let him win (I assure you, I’m not that nice of a person).  It was the perfect way to spend the afternoon.  Well, other than the creepy lady who cornered me in the bathroom, started walking towards me with her hands aimed at my belly, asking “holy moly, can I touch your belly?”  “Sorry, no” and I darted into the bathroom stall.  Seriously people.  Keep it together.  Isn’t one of the first things parents teach their children “keep your hands to yourself”?  When did that no longer become a thing?

 

After bowling, we went home, grabbed some dinner, then headed over to our friends’ house to watch a movie.  We stayed out as late as possible, to make ourselves as tired as possible, so that we could sleep as much as possible.  We slept…as much as possible.

Sunday morning I woke up with, once again, no signs of labor.  This is when I started breaking down.  We had been told that the longer we go past our due date, the more likely she will pass before labor starts.  This means considering induction, in order to give her the highest chance of being born alive.  We didn’t think we would ever have to consider this, because I was such a high risk for early labor at 32 weeks.  The problem with induction, is that according to all the research I’d done, the more intervention you use at birth, the more likely the baby will pass before birth.  I’d been offered induction weeks ago, due to my crazy high fluid levels, but I had no interest.  I’d be uncomfortable, and she would come when she was ready.  But what if she wasn’t ever ready?  What if it came down to the decision of choosing to induce, and what if she passed away before she was born?  I couldn’t make those decisions.  I just couldn’t.  Nathan and I were both getting pretty worried, and not wanting to admit it.  I was sitting on the couch, and Nathan was still sleeping.  I was having a meltdown.  I felt like God wasn’t listening anymore, and I was trying to have faith that His timing is perfect at the same time.  It would be so much easier if He would just listen to me, and my timing, and change plans accordingly.  I didn’t have peace.  I felt like He was just being silent.  I yelled at God in my head for a little while, got it out of my system, told Him I trust Him even though I’m pissed that nothing is happening.  When I was finished with my meltdown/fit, and dried my tears, I texted Larry Meade.  If you don’t know Larry, go meet Larry.  He is the pastor at New Beginnings Community Church in Salkum, owner of Fresh Start Counseling and Nana and Papa’s place (a coffee shop, soon to be ice cream as well), but most importantly, he has been a lifeline, support system, friend, mentor, creator of any crazy Young Life prop I need (he’s never said no, and I come up with some pretty ridiculous requests), the person I call when I break a Young Life kid (I haven’t killed anyone yet, I promise), believer in our crazy methods of showing Jesus to kids, and did I mention, lifeline?  I always tell people that Larry is our friend.  Even when we’ve done something really, really stupid, Larry is our friend.  Go meet Larry.  Anyways, my fit was over, and I texted Larry.  I sent him a fairly long text at 7:53am, explaining my fit.  He texted me back at 7:57am, a man of few words, “Our prayers will be for birth today.  God bless.”  I felt in that moment that I’d done all I could do, so I stopped freaking out.  No more fit, no more meltdown.  So I started to write a blog post.

Here’s what I wrote:

“How do you prepare yourself to say goodbye, when you have not yet said hello?  Today is one day past little Ayden’s due date.  No one thought we would make it this far, ourselves included.  This week has been a waiting game, one that provides no strategy to win, any rules, or any end in sight.  It isn’t a fun game.  It isn’t a fair game.  It is a game that I wish would end, yet at the same time go on forever.  Ending this game of waiting means Ayden will be born.  Ending this game of waiting means saying goodbye.  How do you fully prepare for the end?  Is it even possible?

This week has been beautiful, to be quite honest.  Nathan and I both stayed home from work all week.  We’ve been enjoying time together as a family, we’ve spent time with friends, and we’ve spent a lot of time wondering about how things will go once Ayden decides to make her appearance.  Prior to this week, there were still so many things that were up in their air, things we still needed to take care of, things that made us feel very unprepared for her birth.  We’ve had so many miracles this week – so many things fall into place that we did not really expect to happen.  The biggest miracle being Ayden making it full term.  The second and equally as big of miracle, Nathan and I, with so much help from Ayden’s Auntie Shandeigh, have been researching organ donation, for research and/or for transplant.  Due to Ayden’s condition, there was a lot of red tape.  Also due to the fact that she is an infant, there was even more red tape.  There aren’t a lot of neonatal organ donors, and there are even fewer neonatal organ donors for research.  Because circumstances like ours are so rare, there aren’t many organizations that work with people in our situation, and there is just a lot of unknown.  We were amazingly blessed to be put in touch with exactly the right people, who fought for weeks to create circumstances for us that would allow Ayden to be used to help others.  Friday, May 20^th, the day before her due date, we finally finalized arrangements for her body to be donated to research.  This research project will be training medical professionals for neonatal and pediatric emergencies.  Because you can’t practice procedures on infants (for obvious ethical reasons), there are numerous emergency procedures that medical professionals simply do not know how to do, because they have never had to do them before.  One of these procedures is intubation – very few medical professionals have had to intubate an infant.  Ayden is going to allow a series of training videos to be created on how to intubate infants, and these training videos are going to be distributed worldwide.  There is also a piece of medical equipment that is used in emergent circumstances when IVs cannot be placed in a vein.  This piece of equipment essentially drills straight into the bone, administering necessary fluids and medications even more efficiently than if an IV were placed.  This piece of equipment has not yet gotten FDA approval, because they have not had enough test subjects in order to demonstrate the necessary success (I believe it is approved for adults, just not infants).  Ayden will be able to help them get this FDA approval.  Both of these things could potentially save countless lives.  We are so grateful, feel so blessed, and are so proud that our baby girl will be able to participate in this.  This all literally came together the day before her due date.  We are finding miracles in so many ways, even if we aren’t getting the one we want most desperately.

There were several other things we had been trying to accomplish before Ayden’s arrival, and all of the sudden there are no more things on our list.  We have nothing left to do.  On paper, we are officially ready to meet her.  There is no more red tape, there are no more questions, there are no more tasks, everything has been done.  We have protocol for contacting family and friends.  Everyone has cleared their schedules to come meet Ayden when she is born.  Our bags are packed, and loaded in the car.  All of the details have been thought through, we feel…‘prepared’.”

That’s as far as I got in writing the post, and then Nathan woke up.  We ate breakfast, and my parents texted asking if they could come over after church.  They came over around 10:30, stayed for a little while, then took us to lunch.  Right after we decided on where to go for lunch, I started having a few mild contractions.  I didn’t even bother timing them, assuming they would be just one more false alarm.  Within 30 minutes, on our way to Casa Ramos for lunch, I debated telling my parents to turn around and take me back to my house.  The contractions were between 3-7 minutes apart, and getting pretty strong.  Meh, I was hungry.  Lunch won.  I didn’t say anything to them or Nathan, but Nathan noticed me timing them on my app at the restaurant.  We got back to our house, my parents hung out for a little while longer, then headed over to my brother’s house to hang out with their two week old baby boy.  As soon as they were gone, Nathan asked me “Okay, how bad are they?”  I told him they were definitely getting stronger, but I didn’t think it was “go time.”  They were averaging 5 minutes apart, so I told him we should sit tight for another thirty minutes, then call the hospital and see if they wanted me to come in.  Literally the next contraction came and I said “Okay we are going right now.”  We called to let them know we were on our way in, texted family, and headed up to St. Pete’s.  It was a very, very quick drive. 

And for the record, bumpy roads, plus being in labor - not cool. 

Mothers Day

We are one week and four days away from our due date.  Less than two weeks.  Every day we still have her with us is literally a miracle at this point.  She wasn't supposed to make it this long.  They thought I would go into labor weeks ago for numerous reasons.  But our baby girl is still strong and feisty, and is showing us more and more that she apparently inherited her Daddy's love for martial arts (which she practices constantly...and all night long).  She wasn't supposed to move and kick as much as a normal baby would, but that doesn't stop her from moving so much at our appointments that the doctor has a hard time finding her heart beat because she won't stop thrashing around.  She is our little miracle in so many ways...despite the fact that we have not gotten the miracle we so desperately wanted for her. 

As we creep closer and closer to the due date, to the inevitable time when we shall meet her, the inevitable time that we will lose her, it becomes harder and harder to focus on daily life.  Should I really still be working?  Why should I have to pay bills, don't they know I have better things to be thinking about and worrying about?  And emotions run much, much higher.  Life is just scarier.  Oh, and people say stupid and stupider things, the closer we get to the due date.  I know in general that people lose their brains entirely when they see a pregnant person, and the suddenly think that there are no physical or emotional boundaries.  It's like seeing a baby bump literally causes people to lose all common sense and verbal restraint.  No, do not touch me without asking.  Do not talk about my belly button.  Why do you think it is appropriate to ask me if I am excited I'm so close to having my baby?  How exactly do you expect someone, who you know is carrying a child with a terminal diagnosis, to respond to "are you excited?"  And please stop using the word "pop." No pregnant woman in the history of the universe is a fan of the word "pop" in reference to what you think her body is about to do.  Pointing out how large someone is getting?  Would you do that to someone who isn't pregnant?  Because the next time someone tells me I'm getting huge, I'm going to tell them "thanks, so are you!"  And to the stranger in the rest stop who wished me a happy Mothers Day while I was obviously peeing, thank you for sentiment...but that was really weird.  Maybe wait until you know the person has their pants back on before you strike up a conversation.  For the sake of all pregnant women everywhere, people, please, please ask yourself if you would want to hear what you are about to say, before you say it.  It will save me from having to hit a lot of people with my car...  Those are a few of the more mild things people have said and done...I won't get in to the truly offensive things, such as someone who knows I won't be able to bring my baby home suggesting that I buy maternity clothes that will work for breastfeeding some day.  Not everyone as been obtrusive and offensive.  Many people have been so sweet, and truly bring a smile to my face even on the worst of days.  If you are one of those people who constantly tells me how great I look, thank you, even if you are lying through your teeth.  To the people who know to keep their mouth shut, and just give me a hug when they see me, thank you.  To the people who ask me if there is anything we need, thank you.  I wish I knew how to answer that question, but the fact that you asked means a lot.  To the people who aren't afraid to ask me how I'm doing, thank you, even if I don't have it in me to tell you how I'm doing in that moment. 

It's fun to get in my sarcastic mode, and talk about the ridiculous and offensive things people say, because humor can distract from reality.  Distractions from reality are greatly welcomed lately.  But alas reality is still there, our situation is still real, and some time in the very near future, no one will be telling me how huge I am, because I won't be pregnant anymore.  No one will come up and touch my belly intrusively, because there won't be a bump.  No one will be asking me offensively if I am excited, because I will have just experienced the greatest loss.  That reality is very immanent...and creeping closer and closer, in a terrifying way.

Mother's Day.  A day for celebrating Mothers.  A day for Mothers to be recognized for everything they do for their children.  Did you know that the Sunday before Mother's Day is Bereaved Mother's Day?  A day dedicated to celebrating mothers who have experienced the loss of a child?  I just learned that this year.  I ignored Bereaved Mother's Day, because I have not experienced loss yet.  I still have my precious little girl, even if it isn't for much longer.  I have not lost her.  I do not yet consider myself a bereaved mother.  I was also planning on ignoring Mother's Day.  It's hard to think of myself as a mom.  I haven't held my child yet.  I don't get to raise her.  I don't get to rock her to sleep, or do any of the mother things with her from now until the day I die.  I don't even know if I will be able to hold her while she is still alive.  How exactly does someone in my position celebrate Mother's Day? 

We celebrated by spending 7 hours in a car, driving back from Idaho.  Best. Idea. Ever.

Really, you ask?  Seven hours in a car, seven hours away from our hospital, in a different state, while being 38 weeks pregnant?  Best idea, how?  Let me tell you. 

The weekend started out by us meeting for the first time, little Cole William, Ayden's cousin, who was born on Friday morning.  We've been looking forward to that moment for nine months.  Cole is so precious.  And has apparently taken up snorting, which is the most adorable thing I've ever heard.  I know Ayden is a proud cousin.  And Nathan and I are the proudest Auntie and Uncle in the universe.  We are so happy for my brother and sister in law.  Best start to the weekend ever. 

Saturday was the opening night for my little brother's play that he wrote, produced, and starred in, as his exit project for his BA in Fine Arts from the University of Idaho.  I had gotten a text from my little brother, David, a few months ago, asking if it was okay if he wrote his production about Ayden.  I obviously said yes, and that we would absolutely be there to see it.  So at 38 weeks, we drove 7 hours to go see it.  And yes, that was the best idea ever, for so many reasons.  Aside from the small part where I'm 38 weeks pregnant and a super high risk for early labor, of course.

How do you write a play about a life that hasn't even experienced the outside world?  A life that may not ever see the outside world?  It was a play with no words.  It was simple.  Three people, the only props were string, a chair, a broken coat wrack, a few balls, and three balloons.  And somehow, in one hour, my brother managed to tell a story of life's struggles, and incorporate the love of a child, and how life-shattering loss can be.  You would have to see the play to have any idea of how powerful it was.  The way it captured and conveyed emotion, had you laughing and then crying, and somehow found a way for everyone in the audience to relate to some large component of the story, was truly amazing.  I'm still a little confused as to how he did it.  Black magic is the only explanation.  Just kidding.  Maybe.  But it was powerful, and it was beautiful, and there was not a dry eye in that theater.  It was the most meaningful, beautiful way he could have chosen to honor his niece, and I am so grateful for his love for us and Ayden.  It was a precious gift, one that will be cherished forever.

The morning after the play, Mother's Day, we went to breakfast, then began the drive home.  It was mostly coincidence that all of these events fell on Mother's Day/Mother's Day weekend.  As mentioned previously, I had fully intended on ignoring the fact that it was Mother's Day. 

This weekend adventure was the last big thing on our bucket list of things to do with Ayden.  We were killing two birds with one stone - a road trip, and seeing one of David's plays.  It is a very sobering experience, sitting for seven hours, trying to process the fact that the last item's on your child's bucket list are being crossed off.  To add the fact that it was Mother's Day made it even more...heart wrenching, horrific, and at moments, felt downright cruel.

Nathan and I are pro road-trippers.  We rock at it.  We have it down to, not a science, but a true art form.  It's beautiful.  We should probably write an manual on how to be awesome at road tripping, so others can enjoy road trips as much as us.  We took this road trip as an opportunity to teach Ayden how to have the best road trips ever.

First, the snacks.  You have to have good snacks.  Lots of good snacks.  Snacks that make you excited to eat.

Second, the music.  Variety is key.  Quantity is also key.  You don't want to have to listen to your favorite twenty songs five hundred times. 

Third, your partner road tripper(s).  Obviously no one will be able to beat the perfect trifecta of Nathan, myself, and Ayden.  But picking your travel buddies is important, and you have to find low-key, adventurous, low-maintenance, old-souls, who can find contentment anywhere.

On road trips, you have to be up for debate, ready to discuss life's deepest issues, while simultaneously be completely content sitting in absolute silence for hours.  You also have to maintain a sense of humor in all circumstances (you never know what will go wrong), and be ready to create infinite inside jokes with your travel buddy.  You have to have extreme patience (particularly when your buddy is....um....38 weeks pregnant....sorry Nathan).  The driver has to be a good driver.  The copilot has to know all the codes and rules of being a copilot.  And you have to be able to switch roles at the drop of a hat.  Hmm...now that I think about it, road trips are a lot like marriage.  Nathan and I have taken a lot of road trips.  Some have gone well.  Some have gone everything but well.  But we've always been able to, despite unforeseen and unfortunate circumstances, make the best of them. Kind of like in life.  You roll with the punches, and just keep moving forward.  And you have to remember to look out the window and enjoy the views around you, even if you are tired of where you are currently sitting. 

There are a lot of parallels between life and road trips.  You can learn so much, sitting in a car for hours on end.  We taught Ayden a lot of things on this road trip. 

I taught her that when Daddy wants string cheese, you make sure to open the wrapper before you give it to him.  This prevents crashing when the wrapper won't open.

I taught her that when Daddy wants Gatorade, you open the bottle for him and hold the lid while he drinks.  This allows one hand to remain on the steering wheel, also preventing crashing.

I taught her how to utilize 5000 pillows in order to maintain maximum levels of physical comfort.

I taught her how to beat Daddy at My Cows.  My Cows?  What is it?  The world's best road trip game, obviously.  The rules are simple.  You want the most cows.  When you see cows, you call "my cows," and you get as many of the cows as you can count.  The person who has the most cows at the end of the trip wins.  Here are the twists - if you see a church, call "my church" and all of your cows get married and double.  If you see a McDonald's, call "my McDonald's" and you get to kill all of the other player's cows (just one player, if you are playing with multiple people).  This rule is awesome, and equally soul crushing, depending on who sees McDonald's first.  If you call "my cows" and there weren't cows, you get negative points (if there were five horses, not five cows, you lose five cows).   If you have never played this game, I suggest you do.  Ayden and I kick some serious butt at this game.  By the time we got home, we had over 300 cows, and poor Dad only had 9.  And technically, his weren't even real, because he cheated and called "my cows" for fake cows outside the Mattress Ranch.  But we felt bad for him, since we had just killed all of his cows, so we let him have them. 
Daddy taught her lots of things too. 

He taught her how you should always hold Mom's hand when she is sad.

He taught her how to make sure mom keeps eating so she doesn't get super grumpy.

He taught her how to navigate in unknown territory, and how to not freak out when you miss a turn and have to reroute.

He taught her that detours on dirt roads are an adventure, not a reason to panic or get mad at mom for misreading the directions.

He taught her that it's okay to be sad, but that it's also okay to be happy, even when life is sad.

He taught her how to love her momma well.

Road trips are great for teaching.  They are great for learning.  They are great for processing, for being sad, and for being happy.  This particular road trip was the most emotional road trip we've ever taken.  But it was the most beautiful road trip that we've ever taken.  We talked, we sat in silence, we ate, we listened to music, we got serious, we were light hearted.  We took lots of breaks and walked around (something about blood clots are bad).  We took pictures.  We laughed a lot.  We cried some.  We taught Ayden the rules of the road trip, and I have no doubt that had circumstances been different, she would have superseded our road trip awesomeness someday.

I've been learning a lot about life and love these days.  I wish there were easier ways to learn the lessons I'm learning.  Less painful ways of learning would be preferred.  But we are currently on a painful road.  And despite how painful it is, it would not bring any honor to our situation, or to our daughter, to not try to learn as much as possible on this crazy journey.  At this very moment, I'm learning a lot about receiving love, and receiving help.  I'm learning about being honest, despite how much I want to hide from the truth.  I'm learning about loving others, when all I want to do is hit them with my car.  I'm learning about grace, and how undeserving I am of it, and how much of it we are given...and how important it is to give to others even though we don't feel like they deserve it.  I'm learning about humility.  I'm learning so many things.  But the biggest thing I am constantly learning about is love, how deeply I am loved, how deeply Nathan and Ayden are loved, and how powerful love is.  Love is truly the most powerful thing.  I believe that, with everything within me.  I believe the power of love is deep enough to heal the deepest of wounds.  But that type of love, we are incapable of, on our own.  God's love, for us, is powerful.  And when we experience it, we are capable of showing love to others.  Living in a place where we are so hurting we can't show love is a very painful place to live.  We have to be willing to receive love before we can love others.  We have to receive love even when we don't want it, even when it hurts.  Friends, I hope you know how loved you are.  Being loved is all we ever truly want, right?  Let's focus on loving and being loved today.

Easter - There is No Power in Death

Today is Easter Sunday.  I was not looking forward to this day, for one reason or another.  I just simply was not looking forward to it.  It's been a rough couple of weeks.  For a while there, I felt like Nathan and I were handing things well.  I felt like I had a grip on life, and like I was going to be okay.  And then I got angry, and sad, and life just became really, really painful.  I was tired of hurting.  I didn't want to be positive any more.  I didn't want to do the right thing, feel the right thing, say the right thing, or care about anything. 

I was angry that my little girl is going to die.

I honestly didn't want to write any blog posts, because I strive to be very honest in these, and I didn't want people to know how angry and hurt I was.  I'd kept it together so well up until this point.  I almost felt like I was doing something wrong by being angry (even though I know anger is a completely normal stage in the grieving process), and I didn't want to admit how utterly, miserably, angry and hurt I was. 

A week after Ayden's diagnosis, Nathan's mom, Jean, gave me a CD.  It's an amazing CD, by Lauren Daigle, called How Can it Be.  The lyrics on every single song are incredible, the artist has an amazing voice, and it has been something that has really helped me keep my mind in check these last few months.  My favorite song is track 3, a song called Trust in You.  That song really spoke to me, as it talks about how God doesn't always move the mountains we ask Him to move, or part the waters for us.  Essentially, it talks about trusting God even when we don't understand why we don't get the miracles we are praying for.  There's also a line in it that says "there's not a place that I go, where you have not already stood."  This line meant a lot to me, as it helped remind me that there is nothing I'm going to face where God isn't already going to be.  He already knows, He already has a plan, He is already there.  I have listened to nothing other than this CD when I'm in my car ever since it was given to me.  I also downloaded it onto my phone and my tablet, so even if I'm not in my car, I can listen to it (which I frequently do).  Nathan has been a great sport about tolerating the same 12 songs over and over and over for the last two and a half months (more like 10 songs, because I always skip number 11 and 12).  Well, when I started to get angry, I turned off the CD.  I tried listening to the radio, but all the songs made me mad.  So I just drove for a few days in silence.  There was one night I was coming home from some Young Life event, and I mentally yelling at God.  I let Him know how stupid I thought my situation was, how I was angry, thought it was unfair, and that I was specifically mad at Him, because He is fully capable of healing my baby girl, and there was really just no reason for me to even be in the situation I'm in.  Then I told Him I still trust Him, even though I think He is being stupid, and I wasn't happy about trusting him, but I did.  Then I told Him I'm not turning the CD back on yet, because the first track of the CD is a song called I Want You First, talking about putting God first, above all other things.  I was also not wanting to trust him, so I didn't want to hear track number 3 either.  Well, I was mad at God and want to put Ayden first, so I wasn't going to listen to the CD.  But I told God I'd compromise, and listen to 88.1, the Christian radio station.  It's not like God really cares that much about what I'm listening to on the radio.  I'm pretty sure He didn't care that I wasn't listening to the CD.  But boy, that was my way of really sticking it to Him.  Gee, I showed Him, didn't I?  Wow, I can be so dumb.  Anyways, I turned the radio on, angrily, to hear a song none other than Trust in You, by Lauren Daigle.  Track #3.  Right at the part of the song that says "there's not a place that I go, that you've not already stood."  I.  Was.  So.  Irritated. 

Fine God, have it your way.  Remind me that you're always there, and that there is nothing I'll ever face where you won't be there.  You're already on the other side of this, through your crazy time traveling whatever, knowing what I'm going to go through, ready to meet me there, and even when I'm angry and trying to avoid you, there is really nothing I can do to escape you and how much you love me.  For some reason, probably due to my intense stubbornness and current state of anger, this just made me even more angry.  Go humans. 

After that I really tried to be less angry, but it didn't help me be less sad.  Everything started resulting in a meltdown.  I moved a present for someone's upcoming baby shower from my living room to the bedroom, and it resulted in a meltdown.  Nathan and I have had to start putting together our birth plan, and facing hard decisions, like burial or cremation and funeral//memorial details.  I had the horrific realization that each time we have a doctors appointment, it could be the last time we get to hear her little heartbeat.  I have several health factors going on that all together put me at a pretty high risk for early labor.  Being 32 weeks along, we really have to face the realization that any day could be the day we meet and say goodbye to our little Ayden Nicole.  So. Many. Tears.  I started hating specific words, like funeral, service, memorial.  All of them seem cruel and not what I want for my baby girl.  Nathan asked me if I had thought about cremation verses burial, and if I had a preference.  I told him I hated both options.  Tears.  Anger.  Pain.

Easter morning rolled around, and it was like most other mornings Nathan and I have off together.  We slept in as much as possible (made it to 7, yay!), Nathan cooked a big breakfast while I looked online at information on infant memorial services, we ate, then cuddled up on the couch and watched a few episodes of The Office.  We watched the finale, which, by the way, I think is the best finale to any show I've ever seen.  Ever.  All in all, it was a fairly decent morning.  I had almost finalized our birth plan, and sent it to my sister to look over.  Nathan went to the gym, I set up our new backpacking tent to make sure our new double sleeping pad would fit in it (it does, yay!), and then I started preparing food for the family get together we were having later in the day.  I usually watch Netflix while I cook, but since we had just finished the show we were watching, I decided to look up Easter sermons.  It seemed appropriate, being Easter and all, and since we didn't go to church.  It was right around 11am, and I found a link for a live stream from the church we went to when we lived in Seattle, Bethany Community Church, that happened to start at 11am.  I decided to give it a try.  It was an excellent sermon.  You should listen to it.  It's pretty short, not boring, and an excellent perspective on the Easter story, unique to any I'd ever heard.  It focused a lot on Joseph, which most people don't focus on.  Here's the link to it.  They don't have that particular sermon posted at this very moment, but I'm sure it will be posted very soon.  Just look for the one from March 27th.

Anyways, the sermon was excellent, and really helped me refocus my energy on something other than death.  That's the point of Easter, right?  Death being defeated?  Easter is about Jesus conquering death.  Death could not overpower Jesus.  Jesus was raised from the dead.  Boom.  Death didn't win.  And because Jesus defeated death, we don't have to fear death.  I've never really been one to fear my own death, but thinking about the death of those I care about is horrifically terrifying.  That's not a death I'm okay with.  There was a short period of time right after Ayden's diagnosis that I started having very horrific and vivid visions of the people I care about dying.  My death doesn't scare me, but the death of those around me apparently terrifies me greatly.  Ever since I was a teenager, I always had this perspective that I'd die as soon as my death would accomplish more than me continuing to live.  Whether or not that's accurate, it's just simply the perspective I've had.  Jesus' death obviously accomplished more than if He were to continue living, considering His death resulted in paying the debt of all sins of humanity, for all time, which means we can have a relationship with God, and spend eternity with Him in heaven after we die.  Ayden's death is not something I'm okay with.  It isn't something I think I've fully accepted.  It is still something I completely dread, that I know will absolutely destroy my heart, something that I think is completely unfair, unjust, and horrible.  But she isn't ever going to experience pain.  She isn't ever going to experience heartbreak.  She isn't ever going to have to face a single moment where she feels unloved.  She will never hear an unkind word spoken to her.  She will go straight from our arms to the arms of Jesus.  And that picture isn't something to be feared.  Jesus died on the cross on Easter, so precious babies like our little Ayden can spend eternity with Him in heaven.  She will never be afraid.  Jesus conquered death once and for all, for my precious baby Ayden.  My pain is honestly very selfish.  My pain comes from me losing her.  She does not suffer at all from this situation.  Honestly, she benefits greatly.  She gets to meet Jesus first.  I don't think it's fair, from the perspective of being her mother, who has to face losing her...but for her, there couldn't be a better option. 

Easter reminded me of how great things can come from death, despite how horrific and painful death is.  It helped remind me that though losing Ayden will be the most painful thing I've ever experienced, good can still come from it.  Great things can still come from it.  Great things have already come from it, despite how painful it already is.  And I have a choice to make.  I can be angry, and dwell on my anger, and accomplish nothing, or I can choose to love.  I can choose to love despite my anger, and love those around me the way I wish Ayden would have been loved.  I can choose to carry out her legacy, to let her be remembered, to let her change my heart for good, and to use my pain to help others.  Loving is so much better than being angry.  Being angry hurts.  Loving hurts too, but it serves a purpose.  Anger is inevitable, but if we let it overcome us, we give in to its destruction, and inhibit good things from coming from our circumstances.  It's okay for me to be angry.  It isn't okay for me to let anger control me.  It doesn't honor God, and it doesn't honor Ayden.  Anger typically results in a lot of regrets.  If I spend the rest of my pregnancy being angry, I miss out on so many things with Ayden, so much that could have been accomplished.  Love conquers all.  That's what Easter is.  A God who loved us so much, He died to pay the cost of all of our wrongdoings.  His love conquered all things.  His love has already conquered my pain, even though I can't fully see it yet. 

Happy Easter, everyone.  Don't forget to love today.  Don't live with regrets.  Choose love.

Turning Point?

Today is two months and seven days since we learned of little Ayden's diagnosis.  That seems impossible to me.  How can time have flown that fast?  So much has happened, yet so little has happened.  Ten weeks and one day until our due date.  How is it even possible?

The majority of what has happened in the last two months has been processing, and celebrating.  Don't get me wrong.  There have been plenty of tears.  I had a meltdown because of cheese.  Uncontrollable sobbing...over cheese?  Probably a little more going on in my mind than cheese.  I'm sure you understand.  But after the meltdown was over, it was a little funny to look back and realize how devastating cheese, or lack thereof, or simply having the wrong kind, was in that very moment.  The tears are still quite prevalent, and they catch us off guard and come at unexpected moments, but so does the joy. 

I want to talk about a conversation Nathan and I had during my first week back at work after everything happened.  I had just received a pile of cards from coworkers, and I was at least wise enough to wait until I got home to read them.  Nathan wasn't home yet, so I sat in my car after pulling up to the house, and began reading the cards.  I was mostly procrastinating walking into an empty house, which seemed like an impossible task.  Going back to work had been rough.  Really rough.  Not because of coworkers - they had been amazing and understanding.  It was just rough because life was still really rough and the last place I wanted to be was at work, away from Nathan, feeling like I was wasting precious time I could be spending more intentionally with my baby girl.  So there I sat, in my car after a long day at work, after a really rough week and a half.  I sat there reading the cards, and the last card I read was signed by about a dozen people who work in our southern offices (Portland, Vancouver, Tualatin).  There was a theme amongst what everyone wrote.  Almost every single person who signed the card said how much Ayden was loved already, and that they were praying for a miracle for our baby girl.  This resulted in one broken hearted momma having an absolute meltdown in her car, because of how badly she wanted a miracle for her little girl.  I couldn't stop thinking about it.  All I wanted was a miracle, for my baby to magically be healed, for there to be nothing wrong, for her to grow up with her mom and dad, for us to celebrate ever single moment of her long happy life.  In that moment, I was so utterly heartbroken, I could think about nothing else.  I wanted that miracle.  But how do you hope and pray for a miracle, while also preparing for the miracle not to happen?   I texted Nathan, told him I was having a meltdown, and he was home within ten minutes.  He's so good to us.  I don't remember the rest of that night, but I remember a conversation we had about desperately wanting miracles a day or so later.

We had just come home from somewhere, and found ourselves again parked in front of our house, procrastinating going inside.  I must have brought up how desperately I just wanted a miracle for our little girl, because that was our topic of conversation.  Nathan is really wise, and smart, and sometimes it's really annoying.  Sometimes I don't want to hear the wise or smart thing, and I just want to hear what I want to hear, and nothing else.  Luckily, God gave me a man who is always going to tell me what I need to hear, not what I want to hear.  In all of his gentleness and kindness, Nathan started talking about how desperately he wanted a miracle as a child and teenager.  He was born with a very rare muscle disease, McArdle's.  It is quite complicated, but the short version of it is that he doesn't burn carbs for energy, he burns animal protein for energy (no soy for him), and his body doesn't produce lactic acid, which is kind of essential for rebuilding muscle after its broken down.  As a child, he was very prone to injuries, and grew up in more physical pain than most people can imagine.  Oh, and he also had epilepsy, which kind of made the whole muscle breakdown infinitely times worse.  I remember him telling me a story about how he told his mom he was sad, but didn't know why.  Really, he was in a ton of physical pain.  But this was before they knew of his muscle disease (he was diagnosed at 9 years old), and he actually had been in so much pain his entire life that he could not distinguish between emotional and physical pain.  He said he was sad because he was in pain, and he thought that is what sadness was.  His childhood obviously looked a lot different than a lot of children's childhoods, due to his disease.  Same went for his teenage years, and even now in his adult years.  As we sat there in the car, Nathan told me of how many times he begged and begged God to heal him from his muscle disease, fully convinced that being healed would be the best possible option for his life.  It would present so many more opportunities, he would be able to do so many more great, noble things.  His motives were pure.  And he wanted nothing more than to be healed of his disease.  But then Nathan began telling me of how his disease has changed and shaped him into who he is today.  How if he had not had his disease, his life would be completely different.  The likelihood of the two of us ever meeting would have been greatly diminished.  We probably would have never met, never gotten married.  Who knows where I would have ended up - I probably would have died because I refused to go to the hospital when my appendix burst, and luckily he was there and drove me to the hospital.  He said he probably would have joined the military, which means he could have been deployed, and never come home.  The possibilities of how his life and my life would have been different are endless, and impossible to predict.  Then he started talking about how though his disease has been so painful, physically and otherwise, he doesn't pray for a miracle anymore.  He refuses to let it define him, he refuses to let it limit his purpose in life, and he refuses to let it get him down.  He is part of a Facebook group of people all over the world who have McArdle's, and it is so, so sad reading all the posts of people who only focus on the hope that maybe someday there will be a cure, but in the meantime they have no interest in doing whatever they can to be healthy right now (treatment and management of the disease takes great discipline in diet and exercise).  They are angry, bitter, hurting, and unhealthy.  Nathan refuses to settle for that, and takes every day as an opportunity to better himself, grow, learn, and generate change.  He still prays for a miracle, but the miracle he needs, even if it isn't the miracle he wants.  He acknowledges that he knows that it is impossible for us to truly know what we need, until after we have it.  Therefore, he lives every day trying to be the best person he can be, rather than just praying for different circumstances that he thinks will help him be a better person.  He decides to make changes to his life, rather than waiting until his circumstances miraculously change.

Stupid, dumb, wise, Nathan.

I really can't tell the full conversation well.  You would have had to be there to experience Nathan's grandiose wisdom in all it's greatness.  But I can tell you that something clicked inside me during that conversation.  It was like something went from knowledge to true understanding.  All I want is a miracle.  All I can see right now is how horrific my situation is, and the best possible alternative is a miracle.  What I can't see, is the full picture.  I can't see what ripple effect Ayden is already having on so many people.  I can't see the growth I will take as I come out of this.  I can't see so many things.  All I could see was a way to not have to experience the pain I'm experiencing.  But something clicked in my heart, and I knew, in the deepest part of my being, that if a miracle was not what God has in store for our little family, that He would find a way to redeem our situation, and use it for something far greater than I can picture or imagine right now. 

I know what some of you are thinking.  Wouldn't a full life be able to accomplish so much more than a short life?  Isn't it possible that if she lived, she could change the world?  Don't think I haven't gone down that road forty seven billion times, and explain that to God just as many times (yes, I explain things to God, as if He isn't already all-knowing.  You don't?  I think that makes you the weird one).  But here's something I've come to grasp.  Bear with me.  These concepts build on each other. 

1.  This is not "God's will" for us and Ayden.  Now, before you tell me I'm a bad Christian and I'm probably going to Hell, let me explain.  If you still think I'm going to Hell after the explanation, that's fine.  I don't really care what you think.  Anyways.  God created a perfect earth, void of death and pain.  Then humans screwed it all up, and we started doing things that hurt ourselves and hurt others.  This was not what God wanted for us.  This was not His will for us.  His will was a perfect dwelling place, where pain did not exist.  Throughout the existence of humanity, we have really messed up the world, and can't figure out how to stop hurting each other.  Horrific things result as consequences of the actions of humanity; murder, suicide, abuse, war, illness, suffering, death, etc.  The world simply isn't as it should be, and thus you get circumstances such as ours, where horrific things happen for no apparent or explainable reason.  Thus, I don't think this is His "will" for us, but it is simply a result of a world that is not as He intended it to be.

2.  God can use any circumstance for something greater than we can possibly imagine.  Romans 8:28 says "and we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them."  This doesn't mean that if we pray right, God is going to change our circumstance into what we consider to be the "good" or "best" scenario.  I wish that were the case.  This verse means that if we love God, and let God use our circumstances, no matter how horrendous the circumstances may be, He will turn it into something good.  He will give our most difficult circumstances purpose.  Will he take away the pain?  No, but He will provide joy in spite of the pain.  Will He give us whatever we ask for?  No, but He can take anything the world throws at us, and let good, and great, things come out of it.  He provides a way for a horrific circumstance to be redeemed, and turned into something great. 

3.  I still, with all my heart, want a miracle.  And I always will.  However.  Rather than focusing only on a miracle according to how I define a miracle, healing for my baby girl, I am going to focus on letting every single day be a miracle.  I won't let her short life be in vain.  I won't succumb to my grief, be defeated, and wallow in self pity.  I will live each day with a refined perspective on the value and sanctity of life.  I will accept the fact that I will lose my baby girl.  I will cherish every kick.  I will share her story.  I will love the way I would want her to be loved if she were to live a full life on this earth.  I will live with joy. I will experience pain, and choose to let that pain be used in order to love others better. 

Therefore, all things taken into consideration, after that chat in the car with Nathan, a small sense of peace began to grow in me.  Was the grief gone?  No.  Do I still desperately want a miracle, healing for my baby girl?  100%.  Is that all I focus on?  No.  But that small sense of peace, despite the times I want to ignore it, drown it, scream, and remind God of how stupid the universe is, hasn't gone away, and it has started to grow.  It's there in the darkest of moments, when there is no reason for it to be there.  It's started growing, despite the fact that the grief has not subsided.  It's the hint of purpose, of something greater than I can comprehend.  It's a reminder that even though we live in a world full of pain, suffering, injustice, and just downright unfair circumstances, there is still hope.  It's a reminder that when I don't feel like loving others, I'm reminded of how much love I've received, and how much I desperately want everyone to know how great God's love for them is.  It helps me look past the stupid things that normally frustrate me, gain a little perspective, and choose gratefulness and joy, rather than anger and frustration.  It helps me see past people's actions, and understand that really, we all just want unconditional love (we are just usually really crappy at accepting and showing it).  More specifically, when I think of Ayden, and how desperately I want her to have a full, completely, long and happy life with us here on earth, and then I'm reminded that she won't, it helps me not give up and lose hope.  There is purpose despite our circumstances, purpose despite our pain.  None of this takes away the pain from the reality of what is going on, but purpose is a powerful thing, even when we can't fully see or understand that purpose.  The bottom line, is that we are refusing to let a circumstance brought on by an unfair, unjust, stupid world define and defeat us.  We will continue to love, grow, and overcome.  We will do it despite how much it hurts.  We will do it because we believe God, though this was not part of His perfect will, will use our circumstances to accomplish something great.  We will continue to love, at all times, in all circumstances.  And I don't really know if there is anything more powerful than that. 

Day 3 and Following

The Wednesday after we found out Ayden was Anencephalic, we had our follow-up appointment with Dr. Calvert.  We had written down many questions we wanted to ask, most of which I don’t even remember at this point.  When Dr. Calvert came into the room, we let her know that we were going to go full term, and she responded with nothing but support.  Never again did she offer any alternative options, which we were very grateful for.  She again briefly walked us through what the pregnancy would look like from then on – just like any other pregnancy.  Same tests, same number of appointments, the only difference would be we would only be working with her and one other nurse, instead of a large staff.  This would make it easier on us, not having to explain our situation over and over again.  She was very kind, as she answered our questions.  We had done quite a bit of our own research at this point, but wanted to hear the real numbers from her, as we had read varying statistics about chances of surviving birth, how long she might live after birth, chances of making it full term, etc.  The numbers she gave us were much more severe than we had anticipated.  We had read that there was a 35-55% chance of still birth.  Dr. Calvert told us Ayden has a 75% chance of being stillborn.  There really aren’t any statistics on chances of making it full term rather than going into labor early.  There isn’t really any way to guess how long she might live if she survives birth.  A C-section does not provide any greater likelihood of her being born alive.  Organ donation is not a viable option, because there are too many gray areas, ethically speaking, regarding when anencephalic babies are pronounced brain dead, in comparison to when their heart stops beating, and the organs will likely fail before her heart stops beating, making the organs no longer viable for donation. 

The information from Dr. Calvert was necessary, but not easy to hear.  After our appointment we went to my older sister’s house and told her about the appointment.  She is an RN at St. Pete’s in Olympia, in the OR.  She has worked on multiple occasions with the teams responsible for organ harvesting, so she offered to talk to the reps and find out of there was any additional information regarding organ donation with anencephalic babies.  We later found out that though the organs are not considered viable for donation, if Ayden is born alive, she will be able to donate her heart valves, which are in very high demand, and very hard to get ahold of.  So many babies need heart valve transplants.  My sister is going to put us in touch with a rep from the company at St. Pete’s, who we will be able to work with, so in the event that Ayden is born alive, after she goes to meet Jesus, another baby will be able to receive her heart valves.  There is a small glimmer of redemption, knowing that just maybe, another set of parents will not have to go through what we are going through, because of Ayden’s short time here with us.  Obviously, there is still a high chance this won’t be an option, if she is stillborn, but it is obviously our prayer that we will get to hold our baby girl while she is alive, and that she can spare someone from losing their precious baby.

Two years ago, Nathan and I had decided to start the tradition of buying each other a children’s book for Christmas.  We both love children’s books, and this became just a fun thing to do.  The first year, Nathan bought me Peter Rabbit, and this year, he bought How the Grinch Stole Christmas, and The Wind in the Willows.  I had never read The Wind in the Willows, much to Nathan’s dismay, as it was one of his favorite stories.  When we got home from my sister’s house that evening, I grabbed The Wind in the Willows off of the book shelf as we made our way to bed.  Nathan saw the book sitting on our bed, and asked me if I wanted him to read it to us.  I felt horrible asking him to (I don’t know why), but I said I’d love it if he was willing to.  Of course, he obliged, and for the first time since we had found out about Ayden, I fell asleep and slept the entire night through.  Since that night, Nathan has continued to read to us almost every night.  We’ve read through the entire book almost twice now, and I still have no idea what most of the books is about, because listening to it puts me right to sleep.  Nathan is getting better and better at the voices of all the characters, becoming more and more animated each time.  The first time we finished the book, was our last night in Iceland.  I’m sure Ayden would appreciate a different book soon…she is probably irritated with her momma for falling asleep and missing so much of the story. 

Being able to sleep brought mixed emotions.  It brought great relief to Nathan.  It in a way brought significant relief to me as well, however there was also a large part of me that felt guilty for sleeping.  It was like I was already moving on, moving forward, and I wasn’t ready to do that.  I know it is absurd to feel guilty about getting sleep in the midst of circumstances such as this, but the guilt was there nonetheless.  It was like somehow I was betraying Ayden, by being able to sleep.  I know this isn’t the case, but the mind does some really dumb things during really painful times.

I don’t fully remember the days that followed.  I remember going on a lot of walks with Nathan.  I remember sitting on the couch with Nathan watching funny cat videos, and laughing a lot.  I’m not really sure why we chose cat videos, but we knew we needed to start laughing, and it did the trick.  I remember writing a letter to my coworkers explaining the news about Ayden, and asking my boss to email it out to everyone.  The letter went out at 7:30am on Friday morning, and I received many texts and Facebook messages from coworkers, letting us know they loved us and were praying for us.  I remember crying every time I got a text or Facebook message.  I remember one person called and left a message, seeing if we were okay, and if there was anything they could do.  It takes a lot for someone to call, not simply text.  It meant a lot.  I remember not having to cook because so many people had brought us food (thank you!).  I remember thinking it was very strange, how fast time was passing, and how time should just be standing still so I could wrap my mind around what was happening.  But time doesn't stand still…life keeps happening, the world keeps spinning, and nothing slows down.  It’s a very strange sensation.  Your world has come to a crashing halt, but everything around you keeps spinning.  It’s not a good sensation.  I remember keeping the house very clean.  Nathan and I found comfort in meaningless tasks, like cleaning the kitchen and sweeping the floors.  It gave us something to do, and helped us keep moving.  I remember crying a lot.  There were many times when I would be having an uncontrollable meltdown, and Nathan would wrap me in his arms, hold me, and just start praying.  I remember this being the only thing that could calm me down in those moments.  These times don’t happen as often as they did during the first few weeks, but they still happen.  And Nathan still holds me, and prays.

We had made the decision to do all thing things we were looking forward to doing with her after she was born, while we still had her with us.  We didn’t want to miss out on a single moment with her.  The first thing we decided to do with her was bake morning rolls.  When Nathan and I were first married, we lived in Seattle and discovered this amazing bakery, Macrina Bakery, and Nathan’s favorite pastries were their morning rolls.  I have two cookbooks from Macrina Bakery, and had made these a few times for Nathan in the past.  They take three days to make.  It’s a very intense process, is very time consuming, and only makes 12 rolls (for real?  Three days, and only 12 rolls?  I feel like that is just cruel).  Now, these rolls are like sweet croissants rolled like a cinnamon roll but with a vanilla sugar filling.  They are the flakiest, most delicious things on the planet.  Somewhere in the process of making these, you have to refrigerate the dough, let it sit on the counter for half an hour, roll it a specific way, refrigerate, let it sit, roll it out, repeat.  Of course, we ended up doing this late at night, so we set alarms to wake us up to go complete each step.  This resulted in me setting alarms, falling asleep, walking up, and telling Nathan want to do while I stood there half asleep, then falling asleep again, repeat.  Something about this process was beautiful, and terrifying and painful.  It felt special to be intentionally doing something with Ayden, yet was a horrific reminder that we would never do this with her after she was born.  It was therapeutic, and simultaneously horrifically painful.  We contemplated not sharing them with anyone once they were done, but decided Ayden probably would have been the type of person who would have wanted to make a party out of it.  We invited our friends Blake and Sam over the morning they were done, and shared them together.  It was fun, it was symbolic, and it was just really hard.  Many things from then on were similar in that regard; fun, symbolic, and just really hard.

Despite the fact that the first week after finding out about our baby girl was the hardest week of our entire lives up to that point, we never got angry.  We never entered into the “why is this happening to us?” stage.  We never turned to hatred.  I am very grateful that we never turned to those things.  It would have been much easier in the moment to just shut down, and refuse to accept our circumstances, to blame God, to be angry, and to shut everyone out.  I’m so grateful we didn’t do that.  I’m so grateful that we clung to God, and to each other during that time (and continued to do so from then onward).  I’m so grateful for the friends and family that surrounded us, were there for us, and for the many, many prayers that went out on our behalf.  We’ve come to find out there are literally thousands of people across the entire United States who are praying for myself, Nathan, and Ayden.  The love was instantly overwhelming, and only continued to become more overwhelming as time went on.  For this, we are very, very grateful.  And friends, being grateful in times like this is hard; but it is so much better than being angry.

The Day After

The first night after hearing the devastating news about our baby girl was horrific.  How do you quiet your mind enough to sleep after hearing what we had heard that day?  I had unfortunately gotten into a habit of watching a TV show as I fall asleep every night.  I tried to do that, hoping having something to listen to would keep my thoughts occupied.  What it really did was make me incredibly frustrated at the meaninglessness of Netflix and every show it offers.  How could I waste so much time watching it?  Why were all of the shows so meaningless?  So many things in life suddenly became meaningless.  And it didn't prevent me from hearing those horrible words, over, and over, and over, and over.

"I have some really bad news about your baby girl."

It's all I could hear.  I just kept replaying what the doctor said to us, over and over.  I gave up watching a show and laid in bed, still hearing the same words over and over.  Then I was hungry.  I continued to lay in bed for a while, trying to will the hunger away, but eventually got out of bed and heated up some pizza left over from that night.  I was trying to be as quiet as possible, but eventually Nathan wandered out of the bedroom, to find me at the table, eating pizza, with tears streaming down my face.  He held me, sat with me, and eventually we both went back to bed.  At some point I did fall asleep for a few hours, but was wide awake at an ungodly hour of the morning, and I just accepted the fact that sleep was no longer attainable at that point.  When Nathan woke up that morning, he found me sitting upright in bed, reading about Anencephaly, with tears running down my face (at least this time I wasn't eating pizza?).  He gently suggested I read it another time, and pulled me close to him.

Nathan and I took the week off of work, in attempt to further process the news, and try to get a handle on the new turn our lives had taken.  We went to the gym, and walked around the track that surrounds the basketball court the morning .  It was nice to be moving, and it got us talking.  We talked mostly about Ayden, what the upcoming months were going to look like, how we were feeling, questions we should ask at our upcoming appointment.  Neither of us were angry.  We were both hurting more than we'd ever hurt before.  We were confused.  But we were talking.  That walk started the first of many trips to the gym where we would walk, and talk about Ayden.  It became a source of comfort, a way to process, and a way to intentionally keep us talking to each other, to keep us connected. 

During that walk, I timidly brought up organ donation, asking what he thought of it.  He had been thinking about organ donation as well, he just hadn't wanted to bring it up because he wasn't sure how I would react to it.  We had both been reading about it.  Remember that prayer I said, on our drive to the beach, begging God for Nathan and I to be on the same page throughout every decision?  This would be the first of many decisions, where Nathan and I were on exactly the same page.  We decided if organ donation was a possibility, we wanted to pursue it.  If there was any chance our baby girl's inevitable fate would be able to prevent other parents from having to go through what we were going through, we were on board.  It felt like a glimpse of redemption for our horrific situation.  Though we were both on board, even just talking about it was agonizing.  It just isn't a conversation that any expecting parents should ever have to have.  It isn't something anyone wants to think about.  It isn't something anyone should every have to think about.  It is something that simply should not be.  And yet it is.  And there we were, having that conversation.

Nathan's mom came and visited us that afternoon for a few hours.  It was nice to talk.  My brother and his wife (who are expecting a little boy, due two weeks before Ayden) came over, as did our friends Blake and Sam.  I had kept it together most of the afternoon while Nathan's mom was over, but when Sam walked in the door, she ruined that for me.  She gave me a hug, the kind that communicates more than you can really say with words.  She told me that she was so sorry, and she grabbed my face in her hands, looked me straight in the eyes, and said, "you know I'm here for you, right?"  It has been interesting how different people handled the news about our little Ayden, especially in person.  The most common reaction has been for people to give us "the look" - you know, the sad face, the head tilt, the "I don't know what to say, so I'm going to look at you like this" look.  Other people pretend nothing has happened, and try to keep things as normal as possible.  I don't think there is a right or wrong way to react...I didn't know how I wanted to people to act around me.  I guess I just wanted people to just be normal, and be real.  Sam was real.  Sam cut straight to the chase.  Sam knew I was in agony, and she wasn't going to ignore it.  She was going to be in agony with me, and make sure I knew she was there.  I still tear up every time I think about that moment, how much it meant to me, and how simultaneously painful it was, because it forced me to also recognize my own pain.  It's easier to ignore the facts of life, than to hold their face in your hands and stare them straight in the eye. 

After everyone left, it was time to attempt sleep again.  And again, sleep evaded me.  I just kept hearing those words, over and over and over.

"I have some really bad news about your baby girl."

Again, I eventually wandered out into the kitchen to find food.  I heated up some of the soup Emily had made the night before.  Nathan found me again in the kitchen, eating, with tears running down my face.  I again eventually fell asleep, but only for a few hours.  When Nathan woke up the next morning, he again found me reading stories about parents who had children with Anencephaly with more tears running down my face, and he again gently suggested I read it another time, and he again pulled me very close. 

January 4th, 2016

Nathan and I had been counting down the days to our appointment, inexplicably excited to find out if we would be having a little boy or girl.  I scheduled the appointment for first thing on Monday morning, 7:45am.  During our ultrasound, we saw the beating heart of our child, moving arms and legs, two perfect kidneys, a stomach - it was equally beautiful and exciting.  The ultrasound tech was explaining everything on the screen, and all of the sudden "it's a girl!" appeared on the screen.  Our baby was a girl - little Ayden Nicole.  We had had names picked out for several months already.  A little tear slid down my cheek as I realized I was having a daughter.  Nathan's hand tightened around mind, and both of us were excited beyond belief.  I really can't even explain how much joy we had as we left the ultrasound with a string of pictures.  We had a follow-up appointment shortly after the ultrasound, and we sat in the waiting room texting all of our friends and family to let them know we were having a baby girl.  We sat there for an hour and a half, not even bothered by the long wait, planning all the things we would do with our daughter when she was born.  We sat there loving every response from family and friends - our sister in law had just found out she was having a boy.  The thought of a little girl and a little boy running around at family functions was just too exciting to even handle.  So much joy.

Eventually we got called for our appointment, where we sat and waiting for a little while longer in the tiny exam room.  We were officially running late for a small breakfast get together with Nathan's family, where everyone was waiting to hear if we were having a boy or a girl.  Dr. Calvert eventually entered the room, followed by one of the midwives.  As she walked in, she said "so you found out you are having a girl?"  We responded excitedly, not at all expecting the words that were about to come out of her mouth.  "I'm afraid I have some really bad news about your baby girl."  Nathan was instantly standing by my side, arms wrapped around me, as Dr. Calvert proceeded to tell us our baby's brain and skull had not formed.  I just remember absolute confusion.  I had just seen her on the screen.  Her heart was beating, her arms were moving.  I had seen her little face.  She was alive and well.  I didn't understand that something could be wrong with my precious daughter.  Dr. Calvert went on to explain that the neural tube defect was not compatible with life.  This confused me even more.  Her heart was beating.  I'd just seen it.  I remember asking what this meant from here on out, and she explained that the baby would likely make it full term if that is the option we chose.  She laid out three options for us - going full term, inducing labor now, or going to Seattle for a surgery that I wanted to hear nothing about.  She and the midwife gave us a few moments alone, how long, I have no idea.  I just remember sobbing into Nathan until we heard a knock on the door and they came back in.  They asked if we had any questions.  I couldn't speak, let alone think of what to ask. They offered to show us pictures of Anencephalic babies, so we could understand the circumstances a little better.  They warned us they were fairly graphic, but we decided we wanted to see what was happening to our daughter.  The pictures were graphic.  Trying to wrap my mind around the thought of our little girl being anything but perfect was impossible.  Dr. Calvert was very kind as she explained as much as she could, and suggested coming back in a few days when we had time to process things a little more.  She scheduled an appointment for two days later, during a time she normally wouldn't see patients, but would make an exception for us.  Because she scheduled the appointment for us right there, we didn't have to stop at the front desk on our way out, and were able to escape out a side door and go directly to our car without having to see anyone.  We sat in the car and sobbed.  How can you go from the happiest moment in your life, to the most devastating moment of your life, in a matter of seconds?  How do you start to process the fact that your child isn't going to survive? 

Even as I'm writing this, one month after we found out the news, I can feel Ayden stirring inside me.  She has been kicking more today than I've ever felt her kick.  Nathan put his head on my belly, and could hear her heart beating. 

"I'm afraid I have some really bad news about your baby girl."

I still hear those words run through my head at least once an hour, without fail.  I still have a hard time understanding what they mean.  I'm still going to carry her to term, I'm still going to give birth.  I'm just not going to be able to raise my baby girl like I had been dreaming I would. 

It's really impossible to describe the pain of losing a child.  To be honest, I still don't know what that pain is like, because we haven't lost her yet.  We still have her.  But the pain of knowing we are going to lose her is far greater than anything I've ever experienced, could have imagined, or would ever wish on my greatest enemy.  How do you recover from this?

As Nathan and I sat in the car, after hearing the most devastating news of our life, we began to realize we were going to have to eventually leave the parking lot.  Nathan started driving, and pulled into a gas station.  He asked me if I wanted to go home, or go somewhere.  I told him I didn't want to go home.  He pumped the gas, got back in the car, and I suggested we drive to the beach.  He had been thinking the same thing.  We started driving towards Ocean Shores.  The drive was fairly silent.  We didn't know what to say.  I'd occasionally look out the window as tears streamed down my face, completely unable to even think.  I remember praying a lot.  I prayed that Nathan and I would see eye to eye on every decision.  I remember telling God I didn't understand, but that I trusted Him.  I remember not being angry, just hurting beyond belief, and confused.  At some point we texted Nathan's mom to let her know we couldn't make it to breakfast because of our news at our ultrasound.  Telling her made it more real, and made it more painful.  I cried on and off all the way to the beach.  I just remember Nathan telling me, "you just have to keep talking to me, okay?"  He didn't mean right at that moment.  He meant through everything we were going to have to go through from that moment on.  I needed to keep talking to him, to not shut him out.  I promised.

We parked at the beach in a place we could see the ocean.  It wasn't raining, but it was cold, and it was windy.  We sat in the car staring at the waves, and eventually got out and walked to the water.  We didn't stay out there for long.  It was very, very cold, the wind pierced every layer of clothing.  We walked quickly back to the car and continued to sit.  Nathan asked me if I had any thoughts of what I wanted to do, out of our three options with Ayden.  I tearfully explained that as long as she is alive and well, it is not my decision to decide when her heart stops beating.  As soon as I had heard the three options laid out by Dr. Calvert, I knew I would carry her as long as she would let me.  Not all anencephalic babies make it full term.  If Ayden made it full term, I would carry her full term.  To end her life would not be my decision.  That just isn't something I could ever live with.  Nathan said he would be with me 100%, with whatever I decided to do.  And that is what we decided - we would continue to take care of her as long as she was with us. 

Eventually we both started googling Anencephaly; we hadn't really heard much of what Dr. Calvert had said to us, and we knew nothing about it.  We hadn't even heard about it before we were told our daughter had it.  We assumed it was very, very rare.  It isn't. 

One in one thousand babies are anencephalic, 0.1%. 

Most anencephalic babies that survive delivery only live a few moments, to a few hours. 

Many parents choose not to continue the pregnancy.

The information was overwhelming, and much of it was coming from random places on the internet.  What could we believe?  What was true?  According to most sources, 35-55% of anencephalic babies don't survive delivery, but that is a huge range - what was the real number?

We realized we had to tell friends and family what was going on.  We had just told almost everyone we knew that we were having a baby girl - they all assumed everything was fine and that she was healthy, like all the other babies your friends have.  We typed up a text, explaining what we had found out, and began sending it out.  We cried every time we sent a text.  More real. More painful. 

The responses slowly started coming in.  My mom was heartbroken with us.  Our siblings were devastated for us.  Everyone said they would help in any way they could.  Everyone was praying for us, and for Ayden.  Every response brought more tears.  The love and care of everyone was very apparent.  No one knew what to do, and we didn't know what we wanted anyone to do.  Eventually, we started driving home.  We stopped in Olympia and got Herfy Burgers and ate them in the car.  Neither of us wanted to eat, but we knew we should.  I knew I still needed to eat for Ayden.  And if it took all I had in me, I would keep eating to keep her as happy and healthy as possible for as long as I possibly could. 

My siblings are amazing.  They all wanted to bring us food that night.  We didn't want to be around a lot of people, but we asked Nathan's brother Jordan and his wife Emily to come over, and my sister Shandeigh and her husband Jake.  Jake and Shandeigh brought pizza and Jordan and Emily brought home made chicken soup.  Shandeigh brought me flowers and a giant, pink fuzzy blanket with ridiculous hearts all over it.  Just the look on her face when she came through the door told me she was so devastated by what we had found out about her niece.  They share the same middle name, Nicole.  When we told her months before what names we had picked out, she cried when she heard Ayden Nicole.  We had joked that we were scared to tell her if we found out we were having a boy, because she was so excited about the prospect of a niece that shared her name.  And how she was getting a niece, and losing a niece at the same time.  Shandeigh and I went and sat on the couch and cried in each others arms for a significant amount of time.  My sister and I didn't always get along growing up.  Okay, we hated each other for a significant portion of our upbringing.  We still didn't always get along even as adults.  But when I found out I was pregnant, something changed.  And when we found out the horrible news about Ayden, something changed again.  I can't even describe it, really, but it was like she was feeling the devastation I was feeling, while being able to put aside her hurt and just be there for me.  It was a while before I would realize how significant this was, and how much I would need this throughout the time to come. 

I don't remember a lot else about that night.  Eventually everyone left, and it was just Nathan and I again.  My little sister Rebekah lives with us, but she was on a work trip in Alaska for the week, so we had the house to ourselves.  I remember Nathan and I sitting on the couch and crying after everyone left, and eventually we went to bed. 

That was the first of many sleepless nights.