A Note from Ayden's Daddy

By Nathan Hutson, Ayden's Daddy

 

How does one express the worst thing that’s ever happened? How do I put to paper what has transpired, the emotions that will forever evade my ability to articulate? I will do my best, but know that the depths of feeling I have for the last nine months of my life is something that I will never be able to fully transcribe into words of any kind or language.

This is the first time and the last time I will write in this blog, not because I don’t find it important, this blog and the message that my wife and my dear Ayden have spread with this blog has come to mean something far greater than any of us. The message of love and joy, sadness and grief, courage and hope, are ones that I dearly hope will find their way into the hearts of all that need that message. I haven’t written in this blog because I’m tired, and I feel old.  My life hasn’t been easy, from birth I’ve faced a share of trouble and pain, doubtless less then some, but also doubtless more than most, and when I heard the news about my beloved daughter, it broke me.

I surprise myself with those words, but they are true. I am pugnacious by nature, and those that know me and know my history know that I don’t give up. 28 years of pain, and I never broke. I may have been bent double at times, and barely able to move forward, but by the grace of God and the stubborn nature he bestowed on me I was never broken.

As I sat in the doctor’s office, with a new found and growing love in my heart for a beautiful little girl, and as I heard the fateful words that haunt my dreams, I broke. Something inside me snapped, and all I can remember is screaming in my mind. I just wanted to scream, to rage, to break the world apart with in my anger and heartbreak! I wanted to quit, why me, why now? Has God not punished me enough? Is it not enough for life to beat me down, but now for pain to be visited upon those I hold most dearly? There was a space of time while I wailed and screamed in my mind, I can’t tell you how long, but I saw my wife’s face, saw her pain, and I made a decision. That decision took time, how much I don’t know, seconds? More or less, and it brings shame to my heart even now knowing I did not get off my ass sooner to wrap my wife in my arms, but a decision had to be made. I may be broken, but I would literally go to hell before that stopped me from being there for my wife and daughter. They were my life. I scraped the bottom of my soul for the dregs of courage and strength that remained, and I made the decision to do everything in my power to love them, care for them, laugh and love with them, cry and smile with them. And even heal for them.

So you see, I had little left to give to others. After picking up the pieces of my heart, I gave to my wife and daughter, to a few family and friends, and that’s all I had. But as the months continued, and we created memories sweet and bitter, a miracle happened. Joy, real joy entered into my life, my little girl has taught me so much these last nine months, and much of it was about joy, and having the heart of an innocent child. And about not letting your life pass you by. She taught me to live in the moment, without fear, to not let words of love go unsaid, to not give with reserve, and to not be afraid of change, of our future, and the many mysteries it holds. I knew these lessons, but they did not hold the same meaning, the same weight until my Little Fire stole my heart.

The road ahead is unknown to me. And like everyone I do not know what the future holds for me, what love and joy, pain and sadness, laughter, kindness is in store for me, but I do know this. I am healing, my wife is healing. And I will not let my Ayden, my Little Fire’s lessons be wasted. I will live my life to its fullest, I will love and laugh, cry and smile as much as I can. I will live everyday in an effort to be worthy of the amazingly beautiful and graceful women that God has blessed me with. And though I may be broken, I am not done.

 

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

-Thomas Dylan

Be strong and courageous. Do not be afraid, for the Lord your God will be with you wherever you go.

Joshua 1:9

 

 

Meeting Ayden - Part 2

We got to the hospital in record time.  The ride was uncomfortable, but simultaneously peaceful.  I had always been a littler nervous (or a lot nervous) about how I would react when I knew it was time to meet our baby girl,  When I knew it was also time to say goodbye to our baby girl.  Would labor freak me out?  Would I panic?  Was I going to be able to do what was about to be expected of me?  Would I have an emotional breakdown?  Could I handle it?  We parked, and began the long walk from the car to the labor and delivery ward.  My sister was already there waiting for us.  She had also already called and talked to the charge nurse, explaining our situation so that we would not have to, not even once, explain that our daughter had anencephaly.  The walk from the car was very slow, and I told Nathan I absolutely refuse to waddle.  I will maintain my dignity to the bitter end, no matter how bad it hurts.  Then there were two flights of stairs we had to go down.  Seriously?  Who thought this through?  Obviously not someone in labor. 

We began the check in process, which was very quick.  They ask you, by the way, if you are having contractions.  It's a mandatory question in the check in process.  The poor guy checking us in...when he asked me that I looked at him, mid contraction, and whispered "that would be a yes."  Poor guy, he felt so bad he even had to ask the question, he apologized profusely, I promised not to hate him.  They got us back to an exam room, and we found out I was already dilated to 10cm.  Dr Calvert asked if Ayden still had good movement, which she did, and she wheeled in an ultrasound machine so we could see her kicking around one last time.  They printed out two pictures for us, one of her little heart, and one of her fists, still punching.  They didn't have to do this for us, and it meant the world to us that they did.

There are a few things I need to point out at this point.

1 - That morning, I'd had no signs of labor, I was freaking out, I'd texted Larry, and he and his church began to pray.  Miracle 1.

2 - Our doctor was already there at the hospital, waiting for us when we got there.  Through our entire pregnancy, Dr Calvert has been amazing.  She obviously treasured the life of our child.  She never questioned our decision to carry full term.  She was overly supportive, overly accommodating, and I'm pretty sure an angel sent straight from God, to us, for our little journey.  Miracle 2.

Everything progressed very quickly from there.  I'm pretty sure Dr. Calvert hand picked our delivery nurse, Wendy, who was beyond amazing (she had also been the delivery nurse when Dr. Calvert had her children...so that tells you something).  Beyond, beyond amazing.  She and Dr. Calvert looked over our birth plan, didn't question a single thing, and then asked if we had any other wishes, or if there was anything else that was important to us that they could do.  There were two things - I wanted a printout of Ayden's heartbeat, and Nathan and I had at the last minute found out we could participate in an anencephaly research study through Duke University, which would require blood samples from Nathan and I, as well as Ayden's cord blood.  I felt horrible springing this on them at the last minute (literally the last minute), but they never questioned us or acted at all like it was an inconvenience.  Part of our birth plan was that we did not wish to have Ayden's heartbeat monitored throughout labor.  I knew she only had a 25% chance of being born alive, and I did not want to know if she passed during labor.  I just wanted things to progress as naturally as possible.  Ayden's heart would stop beating when she was ready to meet Jesus, and though I was going to do everything within my power (which really isn't very much) to give her the best chance of being born alive, I knew it was out of my control and she would go out on her own terms.  Everything up to this point had been on her own terms anyway, why did I expect that to change?  We got to hear her heartbeat one last time while they made the printout for us.  It was still beating strong.  Our Little Fire was still as tough as could be.

I had done a lot of research and read a lot of stories of babies with anencephaly over the last several months.  There were a few things I found out.  One, no one really knows anything about anencephaly.  Two, there are no ways to guarantee your baby will be born alive.  Women commonly elect to have C-sections to give their babies a better chance, but there is no way to guarantee this will actually allow your baby to be born alive - natural birth provides the same likelihood.  Three, the more intervention used, the more complications can happen, and the greater the chance of no heartbeat after birth.  I'd read about women in the hospital in labor for multiple days, and their anencephalic babies were still born alive, and others who their babies were fine one day, and their heartbeat suddenly stopped the next, even though labor hadn't even started.  There are no guarantees, no simple formulas, no way to predict.  But I was going to give my baby ever chance possible, so that I could look back and have absolutely no regrets, not have to question a single decision, and be at peace with however things turned out.  There were two big things I felt very strongly about, one being that I wanted to have a natural birth, no drugs whatsoever, and two, I didn't want my water broken artificially.  I'd read that doing this could be very traumatic to the baby, and many babies passed away during that stage of birth.  I didn't want there to be anything I could look back on and wonder if I had done it differently, if she would have been born with a heartbeat.  Dr. Calvert and Wendy didn't question these decisions, for which I am very grateful. 

My water broke on its own, and things went very quickly from there.  Nathan was amazing, never left my side, and would just calmly whisper things to me like "you're doing great."  His hand was always on my shoulder, there was never a moment where he wasn't touching me.  My sister was also amazing, making sure we had everything we needed.  At some point I muttered something about it being 5,000 degrees in the delivery room, and someone offered me cold wash cloths.  I remember saying no, that I was okay, but thankfully they ignored me and gave them to me anyways, for which I was so grateful.

I will spare the majority of the details of birth, but there are a few moments I'll share, even though they may be too much information.  At one point, after I started pushing, I was in between pushes and turned to Nathan and said "dear God, I'm so sorry for some of the sounds coming out of me right now.  I swear, they are completely involuntary."  I kind of chuckled after I said that, which actually came out as a snort.  Yes.  I snorted.  With a mortified look on my face I looked down at Dr. Calvert and said "Oh dear lord, did I just snort?"  She looked at me very kindly, I could tell she was smiling behind her mask, and she just gently shook her head and said, "no honey, you didn't snort."  Thank you, Dr. Calvert, for lying to me in that moment.  It meant a lot.  There isn't a lot of dignity left during that particular stage of delivery (okay, there is absolutely no dignity left), and I very much appreciated her trying to leave me with some. 

I had checked in to the hospital at 4pm, started pushing at 6pm, and Ayden was born at 6:19pm.

I've been dragging this post out as long as possible, in order to prolong writing about what I'm about to share with you.  The hours to follow were the most precious, most beautiful moments of my and Nathan's life.  We treasure them more than I know how to put to words.  I trust these memories with you.  Please treasure them as we have.

Ayden was given to me immediately after she was born.  They quickly put her on my chest.  She was so little.  She was so perfect.  I was instantly in love, more than I had been before, which I didn't even think was possible.  Nathan and I both knew right away that her little heart was no longer beating.  I remember saying "Hi Ayden, hi baby" over and over.  Nathan came around to my other side so he could see her better.  He held me with one hand, and touched Ayden with the other.  We kept telling her hello.  We couldn't believe we were finally meeting our baby girl.  Tears were streaming down both of our faces.  They were tears that encompassed so many emotions, and so much love.  Ultimately, I think they were love tears. The amount of love we had for our baby girl was overwhelming, in such a powerful way.  In that moment, and the hours following, we were also in absolute peace.  I don't know how that is possible, during the greatest moment of loss, but we believe in a powerful God that loves beyond comprehension, and bestows peace unexplainable.  And in those moments, His presence was undeniable.

We couldn't stop looking at her.  We couldn't stop talking to her.  She had dark brown hair.  Perfect little lips.  Her hands and feet were the sweetest little things, and her finger nails were perfect.  Everything about her was perfect.  We saw her as the most beautiful baby we'd ever seen, completely flawless.  We did not see what science saw.  We saw our beautiful daughter, and she was perfect.  Absolutely perfect.  And we told her all of those things.

We gave her a bath.  We had brought little towels and wash cloths, special soap and lotion.  We dressed her in her special outfit, put a tiny little diaper on her.  A little yellow lace romper, a red sweater with elephant buttons Nathan's mom had knit for her, and a grey knit had we had ordered for her months ago.  We had her with us for two hours or so, before we brought family in to meet her.  Her grand parents met her first, then all of her aunties and uncles.  Everyone came in one or two at a time.  They all loved her and treasured her, told her she was beautiful, held her, kissed her.  Each time someone would come in, they would hug Nathan, and I would say "this is Ayden" and hold her out for them to take her.  Everyone always responded with "Hi Ayden."  My brother and his wife Mandy brought their two week old son Cole, so that we could get pictures of Cole and Ayden together.  So Cole could know he met Ayden.  There were many tears.  Many love tears.

Sharing our baby girl with her grandparents and aunties and uncles was so important to us.  They had all been there with us for Ayden's journey, and were tightly intertwined into our story.  Every time someone held her and spoke to her, it showed us how loved our baby girl was by everyone around us.  We did not feel robbed of our time with her when someone else held her.  We felt blessed that we could share these moments with others who loved her as well.

After everyone had met her, said their goodbyes and left, I realized that my sister who had been there with us the entire time had still not yet held her little niece.  She had been silently waiting, taking care of us and everyone else, and had not had her moment with Ayden yet.  I had brought with us a book that my sister had given to Ayden, The Day Jimmy's Boa Ate the Wash, so that she could read it to Ayden.  I handed Ayden to her, and she sat in a chair next to my bed and read her the book.  It was so sweet.

My parents had come back again at this point, not wanting to say a final goodbye to their granddaughter.  They stayed there with us, as Nathan held Ayden and read the final pages of The Wind in the Willows.  Ayden had heard her daddy read this book to her multiple times while she was still inside me, but I had always fallen asleep and had still never heard the end of the story.  So there we sat, the three of us, finally all hearing the end of the story together. 

My parents said their final goodbyes, and my sister left to give us some time alone with Ayden.  Up until this point, we had not been alone with her.  There was never a single moment one of us was not holding her, aside from when the nurse came in and weighed her, and Nathan stood by her little side the entire time.

4lbs, 14.5 ounces, 18 inches long. 

The staff was very respectful of our time, and let us simply be, as a little family.

My little brother lives in Idaho, and was able to get off work early and make the long drive back to meet Ayden.  He pulled up to the hospital a little after 11pm, and was able to come and meet her.  After he left, it was just myself, Nathan and Ayden for the remainder of our time together. 

Because of the whole body donation, our time with Ayden was limited.  We knew this when we agreed to let her be a part of the research study.  We could have her for 9 hours after birth.  We spent 9 precious hours with our baby girl, and treasured every single second with her.  We read to her, snuggled her, talked to her.  We told her everything we wanted to tell her.  Nathan crawled into my hospital bed and the three of us snuggled there together during our last hour with her. 

At a few minutes before 3am, the nurse came in to take Ayden.  With tears streaming down my face, I told Ayden again how beautiful she was, how much I loved her, how proud I was of her, and what she meant to me.  I thanked her for everything she had taught me, and given me.  I kissed her little face.  I didn't want to stop looking at her.  I didn't want to stop holding her.  I didn't want to hand her over, to face the moment of never seeing her again.  I handed my baby girl to Nathan.  He snuggled her, said his final words to her, kissed her, and handed her to the nurse.  The nurse was very kind.  She held Ayden very close, as she carried her out of our room.  Handing her over was the hardest thing we've ever had to do.  So much harder than the decisions we'd had to make.  So much harder than labor and birth.  So much harder than everything from the last four months and 18 days we had been through since her diagnosis combined.  Only someone who has lost a child can ever know what that feels like.  There are no words for it.  No way to describe it. 

Nathan crawled back into my hospital bed, and held me as we cried.  We sat there and talked about her.  Remembering her.  Loving her.

We tried to sleep eventually.  We fell asleep a few times, to literally be woken up by the screams of other women giving birth.  We might have slept for an hour.  Nathan's mom and Aunt Anne surprised us in the morning and brought us coffee and breakfast from our favorite coffee shop.  This was a blessing greatly welcomed.  We hadn't eaten in so long, and hospital food isn't really food.  They sat their with us as we ate, and let us talk about our precious baby girl.  We love to talk about her.

The hospital was very quick to let us leave, and discharging us only took a few minutes.  Our room was packed up and loaded into our car by 9am.  

We had gotten a new nurse at 7:30 that morning, who was very sweet and kind, so compassionate about our loss.  I had spent the last several weeks leading up to Ayden's arrival, making poppies out of fabric, and attaching them to cards that have a little bit about Ayden's story on them, and explaining how we had always called Ayden Poppyseed, and how poppies had become a significant symbol for us throughout this journey.  We had given these to all of the staff at the hospital who worked with us, and I'd left a few of them in our room when we left the hospital.  We had made it part way home when we got a call from the nurse, letting us know we'd forgotten a few things in our room.  We turned around and went and got them, and she met us at the hospital entrance so that we didn't have to go back in to the hospital.  As she handed our things through the car window, she said "I found this in the gift shop, and had to get it for you."  She handed me a bright red poppy. 

She will never know how much that meant to us.  Someone who hadn't even met Ayden, who knew so little of our story, reaching out with an act of such kindness.  It was so honoring to us, that she acknowledged our baby girl in that way.  It was obvious that she had read one of the cards that we left in the room.  By the look on her face, and by her kind gesture, it was obvious that our little girl had touched her in some way.  It was just one more miracle as we drove away, one more little confirmation that our girl was loved beyond comprehension, one more thing to help us remember, to help us treasure and cherish.

We miss our baby girl.  We miss her so much.  We miss holding her, talking to her, looking at her.  We miss the way she smelled, how soft her skin was, how perfect she was.  I hate the fact that I'll never hold her again.  That I can't ever see her again.  It hurts, so very badly.  It hurts more than any pain I've ever felt.  But our baby girl is dancing in heaven right now.  She is with Jesus.  She never felt a moment of pain on this earth.  She has only ever known unconditional love. 

Ayden Nicole Hutson, you are the most beautiful thing that has ever happened to us.  Thank you, for wrecking our hearts the way you did.  We are the proudest parents, so humbled to be able to call you our child.  We eagerly await the day we see you again in heaven. 

We love you, baby.  We love you so much.

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.