Circumstances do not define us

Today is the 11^th day that we have been in Hawaii.  It’s been raining for the last two days, and we have taken that as an excellent opportunity to stay put.  Don’t get me wrong.  Hawaii is amazing.  It’s beautiful, warm, full of beaches, and has endless fresh fruit.  What more could a girl ask for?  Well, I can think of one thing, off the top of my head, but it’s pointless to even go there.  So I won’t.

Sitting here with time on my hands has given me a chance to reflect on and process through some aspects of everything we have encountered over the last…year?

Life has been go, go, go, for almost an entire year.  We got pregnant mid-August, found out in September, and as soon as October 1^st rolled around, hello all-freaking-day-and-night “morning sickness.”  I was absolutely miserable, and working crazy hours between my job as a surgery tech and Young life, and if I wasn’t on the go, I was laying on the couch trying not to die.  By the end of December, I final started to feel slightly human again.  Then January 4^th rolled around, and everything about our life changed.  Between still working and trying not to absolutely fall apart, life continued to be go, go, go.  Then Ayden was born, and the craziness intensified.  There was her birth, then planning her Celebration Picnic, and even though neither of us were working for several weeks, we continued to be busy and constantly exhausted.  We went to Vegas for a wedding (um, SO exhausting…not to mention our flight got canceled and we got stranded there for significantly longer than we originally anticipated), and left for Hawaii a few days later.  When we got to Hawaii, we wanted to see everything, and continued on our go, go, go mentality.  Being on the go keeps us distracted, keeps our minds occupied, helps create new memories, etc.  But now, suddenly, we have had two entire, consecutive days with no agenda, no yard to mow, no house projects to do, no dogs to take care of, no errands to run, nothing to do, and we can simply sit and rest.

Even in this very moment, at the epitome of my gratefulness for time to do nothing, I can’t help but fight guilt for doing nothing for two entire days, while in Hawaii.  Especially as our trip will come to an end in a few days.  Shouldn’t we be taking advantage of every possible moment while we are here, cramming as much sight-seeing, beach-lounging, fruit-eating in as we possibly can?  It was such a gift and blessing for so many people to contribute to send us on this trip, shouldn’t we honor that by doing something rather than sitting on the couch and doing nothing for two days?

Sometimes, I think I have a problem.  I have a problem coming up with absurd expectations that others must hold over me.  Why on God’s green earth, should I be concerned with anyone else’s expectations about how I spend my time in Hawaii?  ESPECIALLY considering the reasons we were sent here?  Not to mention that these “expectations” others must have of my trip are completely made up.  I don’t even know if anyone else has expectations for how we spend our time here.  That’s all in my head, as far as I know.  And if anyone DOES have expectations, to heck with them.  I think it is acceptable for me and Nathan to spend these 16 wonderful days doing whatever we feel like.  To do whatever we need.  To focus on nothing but ourselves and each other. 

Why is that so hard to do?

Maybe it’s hard to do, because when there is nothing to do, nothing to hear, and nothing to say, we are forced to become aware of how we are feeling.  It’s harder to ignore something when there is nothing else to focus on.  That’s why we cover our ears and yell “lalalalalalalalalalalala” when we don’t want to hear something.  If we want to ignore what is being said to us, we aren’t going to continue to look the person in the eye, hear their words, and try to just magically think of purple elephants rather than the reality of their words.  We are going to cover up their words with something else, to drown them out.  We will make it impossible to face what we fear they are saying.

I have had plenty of moments, even hours or days, in the past year, where I don’t run from my thoughts or feelings.  I’ve taken time to embrace things as they come, process things, talk/cry/scream/etc.  Shouldn’t it be time I don’t have to do that anymore?  Shouldn’t it be about time I am able to just breathe and not have to worry about when the next wave of despair will hit?

Well, that would be nice.

But unfortunately, that’s not our reality right now.  And to be honest, it might not ever be.

The truth is, even in Hawaii, with perfect weather, beautiful beaches, fresh fruit, no worries or responsibilities from home, even under the best possible set of circumstances, we are still in the middle of a very recent loss, and our hearts are still very raw.

We have been having an amazing time here.  I would have no problem staying here for many more than 16 days.  There are very few things I miss about home…a select group of people, and my dogs.  Other than that, I don’t miss the responsibilities and realities we have left in Washington.  But even if we created the perfect group of people to be in this perfect place with us, the reality is, life here will never be perfect because Ayden is not here with us.

The reality is, we live in a very broken world, and it will never be perfect.

I do believe in Heaven, and that our baby girl is with Jesus, and that one day we will all be together.  But in the meantime, no matter how good life gets, it will never be perfect, it will never be as it was intended to be.  And that really sucks.

Two days ago, Nathan and I had the best day we have had since, well, since this crazy journey started.  We were relaxed, we enjoyed our time together, and we talked.  We had great conversation all day long, which was very meaningful to us.  We talked about our relationship, and how great it is, and how we can make it even better.  We talked about our future, what adopting our future children would be like, and what it will look like when we are ready to take that step.  We talked about a lot of things, very deep and personal things, and by the end of the day we were absolutely exhausted, but we were very at peace.  They were conversations we didn’t know we needed to have, but were so grateful we did have them.  It felt like a step forward in our grieving process.  It felt like progress, and that felt very hopeful.  It felt as if things could be easier from here on out.

But then we woke up the next day.  At one moment, I felt great.  And the very next moment, my thought process went like this: Someone asked me for my address, it must be for their baby shower invitations.  Baby showers.  The last time I went to a baby shower I had a massive meltdown because it was a giant reminder of everything that was about to be ripped away from me, and it took me three days to even begin to somewhat recover.  I hate baby showers.  Baby showers.  Someday I will have a baby shower for a baby I am going to adopt, and that is a very exciting thought.  Bringing home a baby.  Holding my own child.  Introducing my child to friends and family.  Does it get any happier than that?  I can’t wait for that.  The thought of that makes me unbelievably happy, and I can’t wait for that day.  I should have had that day.  I should have had all of that.  I was supposed to have all of that.  I should have a baby right now.  I should be raising my child.  I’m not raising my child.  I don’t have my child.  I will never hold Ayden again. 

That thought process took about 8 seconds, and then I was immediately flooded with the devastating reality that everything I at one moment was looking forward to, was something I should have already had, and it was something that I have indeed lost. 

It took about 8 seconds to go from thinking about what would be the happiest moment, to a puddle of tears because that day feels like it will never come, and I’ll never be ready for that day because it was already taken away from me.

I’m going to have a lot of moments like that throughout the remainder of my life.  Moments that come very suddenly and overwhelm me without warning.  I will continue to find healing.  But wounds leave scars, and they stay with you forever, no matter how at peace you eventually come to be, regarding what has happened. 

Even in paradise (Hawaii), I cannot escape what has happened.  No perfect set of circumstances can magically sweep away the pain of losing Ayden. 

There is something about this trip that has allowed us to have our highest highs, and our lowest lows.  Taking extensive time away from any possible distractions, responsibilities, worries, etc., has allowed us to experience great joy, but also great sorrow.  It’s allowed time for some deep soul searching.  It’s helped us heal, even though that forces us to feel new parts of the loss that we didn’t know we would have to feel.  Nathan and I were talking the other day, about how the last year, particularly the last seven months, were the hardest, darkest, despairing moments.  But we have also had the most beautiful, meaningful, special, miraculous moments. 

We have come to realize that there is nothing we can do to prevent the moments of anger, confusion, hurt, and loss.  Those will always come, no matter what.  And unfortunately, they seem to come in the moments we least expect.  But we have also come to realize that even when those moments come, we will stand back up again, and we will keep moving forward.

The other day we went on an off-roading adventure, to a secluded beach.  The tide was crazy high and intense when we finally made it to the beach, so we didn’t stay for long as getting in the water would have been very dangerous (the big island of Hawaii has the most drownings each year in the entire US…we didn’t want to add to that statistic).  We stopped briefly at the house again before heading off to a different beach.  I had gotten pretty sunburned a few days prior (yes, I had been wearing sunscreen...), but I thought I was in the safe zone.  It had been three days, and no skin had started peeling.  I had just turned very, very dark, and I loved it.  But when I walked back into the house, I noticed something weird on my skin.  And then I freaked out.  My skin had decided to blister.  It was disgusting.  I’ll spare you the details of the fluid filled little blisters all over me...because it is quite disgusting. 

I jumped in the shower in attempt to get some of the now very dead skin off.  This is how my thought process proceeded: 

I was supposed to be in the safe-zone.  I should have recovered, had a beautiful tan, and been able to go and enjoy more sunshine and beaches.  But no, nothing can go according to “supposed to be.” 

Just like being 20 weeks pregnant. 

That means you are out of the “danger zone” and everything should be fine. 

If you make it to twenty weeks it is smooth sailing from there.  We thought we were in the safe zone, we were so happy.  We found out we were having a baby girl, and we were happier than we had ever been.  Everything was fine and perfect.  And then everything came crashing down.  Life suddenly became covered in blisters, and it felt like someone peeled the skin off of our souls.  Stupid sunburn.  Stupid life.

I didn’t anticipate a sunburn being a trigger for everything we’ve been through.  But apparently it was.  So I stood in the shower, sobbing, because my sunburn in that moment just reminded me of the injustice of our circumstances.  Nathan and I have been trying so hard to focus on positivity.  Even when life sucks, think of something positive.  Unfortunately for me, being really tan was the positive thing I had been focusing on during this trip.  I know that seems superficial, and quite ridiculous.  But I kept thinking that even if we didn’t do a ton of sight-seeing, at least I got a great tan.  Even if we didn’t meet the imaginary expectations of everyone else, at least I got a great tan.  This trip has been very meaningful and amazing for Nathan and I, but that isn’t something you can really show to the people who sent us here.  So again, in my ridiculous, irrational thought process, I figured even if no one can understand our trip, at least they can see I got a great tan, so it’s like evidence that we went to Hawaii and had a great time.  I KNOW.  Completely irrational, but that’s what was going through my mind.

But now my beautiful tan was peeling off of my body, and I looked like a Leper.  Farewell positive thing to think about.

On top of that, it was another reminder that my body has been completely ransacked throughout the last seven months.  The health complications during pregnancy, going through birth and recovery, and the still lingering health issues I won’t go into.  My body has been completely destroyed.

And I have nothing to show for it.

That last thought sent me over the edge.  My arms are empty, I have no child to show for everything we’ve been through.

I have nothing to show for it.

So all of this was running through my head, while I’m still sobbing in the shower, and while Nathan helped scrape all of the dead skin off of my back. 

Not the prettiest picture.

It wasn’t the prettiest moment.  But sometimes, our lives just simply aren’t the prettiest pictures filled with pretty moments.  Sometimes our lives really are puddles of tears and piles of dead skin that has literally been scraped off our body. 

Our day had started out jut fine.  All was going well, and then SHA-BAM.  Meltdown.  But we put ourselves back together.  We took our moment of despair, faced components of our grief that needed to be faced, took a deep breath, and stood up. 

We managed to salvage the day, and ended up having a really great rest of the afternoon and evening.  We continued to have great conversation, got out of the house, relaxed, and downright enjoyed ourselves.  That’s our reality right now.  We can’t prevent the meltdowns.  But we don’t have to let them define our day.  We don’t have to let them ruin or define us. 

The meltdowns will always happen, because I really, really miss my baby girl, and I always will.  But I will always stand up and keep going, because I really, really love my baby girl.  And I really, really love my husband.  And I really, really love our Jesus.

So, once again, love wins.  Love doesn’t mean we avoid pain.  Love means that we keep going even though we are in pain.  And love means we will continue to have joy, continue to laugh, continue to live.  Love always wins.

Despair

What is the most terrifying word you know?  A word that you avoid at all cost because of what it means or implies?  A word that cuts you to your core, or elicits emotions you do everything within your power to avoid at all cost?

For me, that word is Despair.

"The complete absence or loss of all hope."

The word Despair is like a gut punch to me.  It cuts me to the core of my being.  It immediately causes anxiety, and a flood of memories and emotions that would be easier to burry deep within.  It literally makes me nauseous.  It takes me to a place where I have felt like there was so much pain, that there was no hope.

We don't like to think about despair.  We don't like to think about the things that cause despair.  We don't ever want to feel despair.  Things of this world that cause despair are so gut-wrenching and horrific that acknowledging them is essentially acknowledging the utmost evil and un-justness of this world.

As you are reading this, I can only assume that there are currently despairing images and circumstances flooding your mind.  Perhaps they are personal memories, things that have happened to you, things you have done.  Perhaps they are things that have been done to those close to you.  Perhaps they are more general concepts such as starvation, child soldiers, or human trafficking.  Chances are, all of us, at one time or another, have felt despair.  If you have not yet experienced despair, I pray that you continue to be shielded from the horrors of this world, and I fear that it is only a matter of time before your unfortunate embrace.

Once you have experienced despair, you begin to recognize it in others.  Strangers, even.  It becomes a familiar sight.  You begin to see it more and more, until it becomes harder and harder to not see it constantly enveloping the world around you.  You become more and more aware and can soon find it difficult to escape.

So many of us experience a loss of or complete absence of hope, and find ourselves in circumstances in which we feel we will never escape it.  Despair becomes our best friend, our new way of life.  We invite it with us everywhere, until it becomes our shadow, and escaping it no longer seems like an option.  And when we feel we have no other option, we hide in the shadows of despair and fear that if we ever come out, if we ever look for a way to get ride of the darkness we now live in, we will just be despaired time and time again.  So we stop looking for the light.  

We curl up in the shadows and refuse to venture out, because we fear that if our hearts take one more despairing blow, it will end us.

We live in a cruel, unjust, despairing world. 

BUT.

We do not have to be controlled by despair.

We do not have to let despair become our reality.

Despair does not have to be permanent.  Despair does not have to rule the way we live.  Despair does not have to win.

Despair can sneak up quickly - a fleeting thought about a particular subject can trigger another thought, a memory, a feeling, and suddenly we find ourselves back in that moment of utter hopelessness.  In the current stage of my life, I find myself in these moments frequently.  Seeing a picture on Facebook of my friends playing happily with their children elicits joy, and then quickly converts to despair, dark thoughts of things that have been taken away from me, worries of things I will never have.  It is like someone takes a knife to the core of my being, and then whispers lies about my circumstances and my future.  The despair does not typically stay for long.  But the attacks are frequent, and they are strong, and they are powerful.

For me, despair is when I text a friend about how excited I am that her little boy who has special physical needs was able to go to a public pool with the rest of the family, and with no warning I find myself curled up in a puddle of my own tears, because I will never get to take my daughter to the pool.  Despair is when I am snuggling my nephew, and loving every minute of it, and all of the sudden I can literally hardly breathe, because I am suddenly so aware of the fact I will never hold my baby girl again.  Despair is sometimes waking up I the morning after a full night's sleep, deeply sorrowed, longing to have gotten up countless times in the middle of the night to take care of my child.  For me, despair is constant reminders of what has been unjustly torn from my life, knowing that as long as I am here on this earth, I will have a void because my daughter is simply no longer here.

I do not live in a state of constant despair.  That does not mean I do not have to constantly (or at least it feels constant) fight despair.  Some days are better than others.  Some days are significantly worse than others.  A recent tragedy and loss being so recent, it feels as if despair is currently more present and prominent, and hopefully it will gradually decrease its prominence in my life.

Here's the thing about despair...

Despair is a feeling.  It does not have to be our reality.  But we have to choose to actively fight against it, in order to keep it from becoming our reality.  And fighting despair is exhausting, and sucks balls (I'm sorry for the people I just offended by saying "sucks balls"...before you get too offended, find a more accurate and less inappropriate term, and get back to me).

How do you fight against despair?  I use truth to fight against despair.  Okay, I usually have a meltdown, get really angry about the cruelty of my circumstances, and then use truth to fight against it.  It's hard, okay? And I fully believe in embracing everything as you feel it, as long as you don't choose to live permanently in those feelings.  Feel the emotions as they come.  Don't hide from them.  Accept them, embrace them, and then choose to take one step forward.

Use truth to disarm the lies that despair tries so desperately to convince us of.

I think perhaps the biggest lie of despair, is that despair is our new reality, and there is no way to escape.  If we believe there is no way out, we will stop searching.  We will stop fighting.  This is the biggest disservice we could ever due to ourselves under despairing circumstances.

Don't tell me I don't know what I'm talking about.  Don't tell me I don't know the feelings of despair.  Don't tell me I don't understand how hard it is to fight despair.

I know despair.  I know the gut-wrenching, knife-stabbing, my heart has been ripped out, chewed up, spit on the ground and then stomped on, how am I ever going to find a way to stand up, how is it possible to hurt this much, will this pain ever go away, utter agony of despair.  And I know that I choose joy, and joy will win, no matter how big of a battering ram despair brings in in the fight to knock down the walls of my heart.

Our circumstances will shape us, and we can choose to let them shape us into something beautiful, or something that is utterly broken.  We fight despair with choices.  When I see a picture of smiling children, I choose to be happy that someone was so blessed with a beautiful family, and I choose not to be resentful.  When I go to the movies, I choose to enjoy it with whoever I am there with, and not dwell on the fact that I will never take my daughter to the theater.  When I wake up each morning, no matter how aware I am that my arms are empty, and no matter how god-awful painful the ache in my heart is, I will choose to embrace and love everyone around me, and not live in a state of constant anger because I will not hold my daughter ever again.  I choose to accept the love from those around me, even though the most natural reaction is to push them away because life simply hurts too much.  I choose to keep loving deeply, even though I lost someone I loved most deeply.  It is not worth hiding from love and joy, simply to avoid the potential of feeling loss and despair. Yes, at times I feel despair.  I feel it and I move away from it.  I do not let despair become my reality.

Choose love, even though it can be the most painful choice.  Choose to keep moving, even if you don't know how you will manage to take one more step.  Embrace laughter, even when the things of this world try to take away your joy.  Choosing joy and love is hard.  It sometimes feels impossible.  Sometimes it feels like it won't be worth it.  It can be painful, difficult, time consuming, draining, frustrating, and unnatural.

But it is worth it.

Love and joy defeat despair.  Always.

"Moving On" Versus Healing

Nathan and I have gotten into a habit of checking in with each other every night before we go to bed.  As soon as we close the bedroom door, we enter our “safe zone” where we can say anything, talk about anything, let our guards down, and get real.  We’ve started doing this because we’ve gotten better and better at pretending everything is okay, even in front of each other.  Sometimes we fake it through the day, just to make it through the day.  I went through a period of feeling really guilty about this.  I felt guilty for faking it, in front of Nathan, in front of our friends.  It felt like I was betraying myself, my baby girl, and everyone around me by pretending I was okay.  I expressed these guilty feelings to a good friend, and she told me exactly what I needed to hear.  She told me I’m not being fake, I’m surviving.  I’m learning how to function again.  I’m learning how to put one foot in front of the other, and make it through the day.  It’s survival, it isn’t faking it.  She was right.  If I acted how I felt on the inside, I would never make it out of bed.  It’s okay to survive. 

Checking in with each other every night helps Nathan and I understand how the other person is doing.  It helps us process the day, identify good moments, and talk through the bad moments.  It has been four weeks and two days since Ayden was born.  That is really hard for me to wrap my mind around.  Some days it feels like she was born yesterday.  Some days it is hard for me to believe that this is our story – this happened to us.  We are still living it out, and it doesn’t even feel real.  And some days it is a mix of so many things I don’t know what it feels like.  For so long, every day got harder and harder.  This was absolutely terrifying to me, because I kept thinking “this was the worst, hardest day yet.  How long can it keep getting worse?  What will ten days from now feel like?  How on earth am I going to survive this?” 

Then the day came, the first day since Ayden was born, that I did not have a meltdown.  Now, this doesn’t mean I wasn’t missing her, longing for her, and utterly broken that she isn’t with us.  It simply means I made it through the day without bursting into tears at any point.  When Nathan and I checked in with each other at the end of that particular day, I had so many confusing emotions regarding the fact that I hadn’t had a meltdown.  I’d heard about this day and read about this day.  The first day you don’t cry after you lose a child.  It comes eventually, and everyone reacts to it differently.  There was a very, very small amount of relief.  Part of me was relieved, because it felt like maybe, just maybe, things would start to get easier.  And then there was guilt.  So much guilt.  Guilt that I was already moving on, that I was moving on too quickly, that this meant I wasn’t thinking enough about Ayden throughout the day, that I was already starting to forget her. 

Guilt is a monster.  An evil monster that can quickly overcome you, and destroy you.

I knew in my mind that I should not be feeling guilty for having not had a meltdown that day.  Knowing in your mind, and feeling in your heart are two very different things.  I knew I shouldn’t feel guilty, but I felt so, so guilty.  This is so common for anyone who has lost a child, to experience this guilt, and to feel they are betraying their lost child somehow.  I felt this way the first time I didn’t have a meltdown after her initial diagnosis, but for some reason the guilt wasn’t quite as strong, because I knew she was still with me and I should focus on the moments I still had with her.  I knew that the real pain was still yet to come.  

Then I started to feel angry that I felt guilty. I felt angry because I knew how many other mothers in situations like mine were feeling guilty as well, and how it was so wrong that any of us should feel guilt.  No one should ever feel guilty for having a day with no tears.  It wasn’t even a good day, it was just a tearless day.  There is absolutely no reason to feel guilty for that.  So why do I?

Here’s what I told Nathan, as I processed through this guilt and anger.  I hope that if nothing else, this helps you understand what a mother (and/or father) is going through during a time of loss, so you can better be there for them during that time. 

Losing a child is hard enough, without the guilt of feeling like you are moving on.  One of the biggest fears a mother who has lost a child can have, is that her child will be forgotten.  Forgotten by friends and family, and most of all, by herself.  I’m not saying this is rational.  I’m saying this is a reality.  Biggest fear = child being forgotten.

A tearless day does not mean a painless day.  However, despite how painful, a tearless day convinces a mother that she is moving on.  “Moving on” are two words that are horrifying, terrifying, hated, and fear-instilling in times like this.  Moving on suggest leaving something behind.  It means moving beyond something, forgetting, and continuing on with life. 

Parents who lose children do not move on.  It may appear that we do, but we absolutely, do not.

There is a big difference between moving on, and healing.
 

I never want to “move on” from Ayden.  I do not want to move on from having her, from losing her, from knowing her, from loving her.  I do not ever want to move on.  And I won’t.  There won’t be a day in my life where I don’t think of her, miss your, wish I still had her.  I will never move on.

But I do want to heal.

Sometimes, it’s hard to distinguish between moving on and healing.  We convince ourselves that if we heal, it means we are moving on.  That is a lie, that so many of us fall into, and that we should never, ever believe.  Healing is necessary, healing is important in order to continue to live.  Healing is vital.  And healing is not the same as moving on.

Healing means we have accepted our circumstances, despite the fact that we will never be okay with them.  Healing means we allow ourselves to feel, but we do not choose to live in a constant state of despair.  Healing means we learn to live again, but we never forget.  Healing doesn’t mean we will never experience side effect or pain of what we have gone through.  Healing doesn’t mean there aren’t scars.  Healing doesn’t mean we won’t feel anymore. 

Healing means we can keep living and loving well, in spite of what we have been through, and what we still carry with us.

Losing a child rips out a part of your inner being.  It is like losing a large piece of yourself, an important piece, like your heart or your soul.  Just like any medical procedure, like open heart surgery, you can heal to the point where you can function normally in everyday life, but you are forever changed, forever altered, and forever drastically different than you were before.  A piece of who you are is missing, but you have found a way to heal in spite of that.  You will never replace that missing piece.  But you will heal.

It was so good to express all of this out loud to Nathan.  He had been feeling the same way.  It was good to reassure each other that healing is good, and it is not the same as moving on. 

If you know someone who has lost a child, please be easy on them.  Let them talk about their little one.  Understand that no amount of time will take away all the pain.  Be gracious to them, and let them feel what they need to feel, and never pressure them to move on.  Help them heal, by being affirming, loving, supporting, and kind.  Help them learn to live, but also help them by letting them remember and cherish their child.  Nathan and I have the absolute best support system in the entire world, and we are so grateful for that.  Some moms and dads are going through this completely alone, and they feel that their pain is a burden to those around them, they are lost and hurting, and they cannot see any hope.  Know that even if they look okay on the outside, they are shattered on the inside, and often times have no idea how to begin putting themselves back together.  Instead of telling them what they need, maybe ask them how you can help.

Be kind to each other.  Love each other.  It’s that simple.

 

Finding Purpose in the Pain

Every day continues to get a little bit harder, since saying goodbye to our baby girl.  We miss her more, long for her more, hurt for her more.  The emotions that come and go are unpredictable, ranging from sadness, to emptiness, to being filled with joy, to feeling numb, to being very angry, confused, all with intermittent bits of happiness and love.  It’s impossible to know what is coming next, how long the feelings will last, when the next meltdown will be.  Sometimes I go hours without feeling the devastation of her loss.  Sometimes the feeling of devastation doesn’t go away for what seems like days.  At times I want to feel better, at other times I just feel so empty that it doesn’t seem like taking a single step forward will ever be possible.  But stepping forward is possible.  And despite the thoughts that seem to contradict, stepping forward does not mean forgetting our baby girl.  It doesn’t mean loving her less. It doesn’t mean “moving on” in the sense of moving away from our deep, deep love for her.  Stepping forward means learning how to live, in the midst of the devastation we feel now that she is no longer with us.  Stepping forward means choosing to not let her death (wow, it’s even so hard to simply write the words “her death”…) harden our hearts and turn us down a bitter, angry road.  Stepping forward means remembering her, loving her, honoring her, accepting every emotion we are feeling, embracing our circumstances, and deciding to let it continue to wreck our hearts in the best possible way. 

I’ve used the phrase “wreck our hearts” quite a bit through our journey with Ayden, because it is the only way I can even remotely describe what Ayden has done to our hearts.  She really has truly wrecked them, in the most beautiful way.  In the most beautiful and painful way.  Can truly beautiful things be possible without the existence of pain?  I don’t think so.  Our appreciation, our gratitude, our perspective, our choice to live joyfully, and to love without hesitation, those things can only really be done if you have experienced their absence.  And the absence of those things is truly a painful existence.  The deeper you love, the deeper you feel, the deeper the loss, the deeper the pain.  Though that is motivation for some to remain distant, numb, and refuse to feel, in order to avoid pain at all cost, that is a painful, and sad existence.  There is no other way to put it.  It is a more painful existence than having loved and lost.  Because if you have loved, been loved, and lost, you can choose to let the love you experienced transform you.  If there is an absence of love, and only loss exists (whether it be a loss that comes from never truly having something, or a loss from having lost), only the loss can transform you, and it will not transform you for the better.  Some of life’s most painful moments have resulted in the greatest, most beautiful stories.  We are in the middle of living that out right now.  And it sucks.  It hurts.  I hate it.  But if I acknowledge those feelings, accept those feelings, and choose to take a step forward, just put one foot in front of the other, and choose to dwell on the love we have experienced rather than the despair, I can allow something beautiful to unfold.  We can’t know the full story when we are still in the midst of it.  But we can see glimpses, glimmers, rays of sunshine, moments of hope.  Small moments that cause a ripple effect of love and joy, despite the pain.

June 4^th was the 6 month anniversary of finding out Ayden was a girl.  It is the simultaneous anniversary of finding out she had anencephaly.  It was a very surreal moment, realizing it had already been six months, and at the same time that it had only been six months.  The morning started out rough, as has been the trend lately.  I had a massive meltdown in the shower.  That’s normal.  Sometimes I intentionally don’t take a shower because I know if I do I’ll have a meltdown.  I don’t know why, but it has become the place where emotion suddenly floods over me, overwhelms, and I lose control.  Maybe the shower is my safe place, away from distractions, and it’s where I actually let myself acknowledge what I am feeling.  But this particular shower had a pretty intense meltdown.  I was so angry.  I was so confused.  I was so broken.  I didn’t understand (well, I still don’t).  I just wanted to hold my baby girl again.  I wanted to see her again.  I wanted her to be here with me.  I didn’t want to accept the fact that she is gone.  That she is never coming back.  I was yelling at God in my head, reminding him again that I was so angry, angry that he heals some and not others.  Angry that He didn’t heal my baby.  Angry that she was ever sick in the first place.  As I stood there, sobbing, I told God that I would never understand why things happened the way they did.  But because they had happened, could He please, please just show me something that would allow me to see the plan He has for her story?  Some kind of glimpse at what good could possibly come from our circumstances?  God promises in the Bible that He works all things to the good of those who love Him.  He doesn’t say He will make all our circumstances good, that only good things will come our way.  But if we choose love in the midst of our circumstances, He can and He will use our circumstances to accomplish great things, far beyond what we can imagine. 

I had already seen plenty of evidence that God follows through on this promise throughout the last six months.  Time and time again, I’d seen God use our circumstances to accomplish things that could have been accomplished no other way.  But this particular moment, it was as if I could remember no good things, no good moments, no possible redemption. 

 

I was just a momma who had lost her little girl, and I was broken.

 

But I asked God to show me something.  Then I told Him I love Him even though I’m so mad at Him, and I trust Him even though I think it is unfair and stupid.

Then I got out of the shower and started my day.

After eating some breakfast, I decided to post on Ayden’s facebook page.  Here’s what I wrote:

“Six months ago today, we went in for our ultrasound where we found out Ayden was a baby girl. It was also the day we found out about her Anencephaly. Exactly six months ago we were in the waiting room, giddy, not being able to take our eyes off the ultrasound pictures, waiting for our follow-up appointment with zero hint that anything was wrong. By 10am everything about our lives changed. It's hard to remember anything before that day. It was such a defining moment in our lives. It was the day everything changed. Everything changed, almost in a bigger way than when we found out we were going to start a family. We made a lot of decisions, six months ago. They were the biggest and best decisions we've ever had to make. The biggest being to be grateful of our baby girl and the time we had with her, and to celebrate every single moment. We are so grateful for the memories we made with her. We are so grateful for the nine hours we had with her after she was born. We are so grateful for the love and support from everyone around us. Today we are being intentional about being grateful, despite the fact that since losing her we have experienced a pain and grief far greater than we could have ever anticipated. Today we are closing to celebrate her life, in the midst of mourning her loss, a loss far greater than anything we've ever experienced. Today we choose to not focus on the emptiness that seems to overwhelm us, but to focus on the joy and love she taught us so much about.

Life is hard. Right now it's very, very hard. We would give anything to hold our baby girl again. To see her again. To feel her again. But we choose to celebrate. To live. To love. To remember.

Don't take today for granted. Don't take a single relationship for granted. Choose love. Choose to live. Take chances. Don't regret. Move forward, even if it's only a tiny bit. Be bold. And always, always, always choose love."

I don’t really know where it came from.  Something changes inside me when I write about Ayden.  I don’t know how to explain it, but it is like suddenly the love I have for my daughter takes over, and forces me to move past the pain, beyond the anger, and focus on loving the way I would want her to be loved, and living the way I would have wanted her to live.  It causes me to somehow put myself aside, and search for something greater, to try to see the bigger picture.  It gives me a boldness and strength that I didn’t used to have.  Or, maybe I’m just a really good writer and a really good liar, and I write whatever I think you want to hear, and I do it with selfish motivation, because I want all of you to think I’m super awesome.  Just kidding.  Or am I?  Now you are questioning everything you know about me, aren’t you?

Sometimes I use humor as a defense mechanism when I feel I am being too vulnerable.  I’d apologize for that, but I’m kind of pouring my heart out here, and I don’t find it truly necessary to apologize.  Sorry.  Dangit, what am I doing?

Anyhoo…

I wrote that post and posted it to Ayden’s page.  I’m also a part of a closed Facebook group called Anencephaly Angels, for parents who have lost a baby to anencephaly, and I made a few adjustments and posted it to that page as well.  This page is meant as a support group, to connect with others who understand, because they have been there.  A place where people can post pictures of their babies, and they are called beautiful, not deformed.  A place to ask questions, a place to be there for others who are going through the same thing.  I can’t judge anyone on that page, because everyone on there is going through something horrific.  Everyone on there has lost at least one child, so many have had multiple children with anencephaly.  But the majority of the posts on that page do not offer hope.  They do not offer healing.  They are from hurting parents who have latched on to their anger and refuse to try to take a step forward.  Some women lost their child years ago, and are still unable to even be in the same room as another baby, because it just hurts too badly.  Some of them, though it has been years since their loss, still have not processed their emotions, still have not accepted their circumstances, and just dwell on the anguish and despair.  They have given themselves permission to give up.  And it breaks my heart.  I understand wanting to give up.  I understand the feelings of despair.  And it devastates me that so many have given up on life.  I was nervous to post on that page, because my post didn’t focus on the heartbreak.  It acknowledged heartbreak and brokenness, but it didn’t remain focused on those things.  I was nervous that people on that page would judge me for having hope despite our circumstances. 

I got an instant comment from one mom who had lost her baby three days after we lost Ayden.  She expressed her feelings of hope and love, amidst the pain and loss, and thanked me for sharing.  She said she found comfort in the post, because she was going through the same thing, and it’s confusing having so many emotions, and it’s hard not to feel guilty having joy in the middle of a loss.  No parent should ever feel guilty for having joy during a loss, but it is so common, and so confusing.  We posted back and forth to each other for quite a while.  It was comforting to know that our story brought her even a smidge of comfort.  Suddenly there was a glimpse of a greater purpose behind our pain.  Two other individuals asked if they could share my post.  I said of course.  If even just one person is somehow benefited through our journey, it relieves our pain, just a little.  If Ayden’s story can help others, it is a form of redemption throughout our circumstances.

That day was Nathan’s first day back at work.  He works in my dad’s gun shop, located on my parent’s property, so I went with him to visit my mom while he worked.  We talked about Ayden a lot throughout the day, as we worked on projects for Ayden’s Picnic that will be happening next week.  She shared a lot about how people who have never met Nathan and I have reached out to her.  They have been following our story, and have been so grateful for the opportunity to be a part of the journey.  Maybe, somehow, one or two of the people following our story have been impacted in a way we can’t see, and it will change their life for the better, even if it means they learn to love just a little bit more.  Even if it is in a small way, our daughter’s story is impacting people in ways we can’t understand.  In ways we might never see.  It provides just a little bit of purpose for our circumstances.

The day in general felt purposeful in many ways.  But it wasn’t until we got home that the extent of Ayden’s purposefulness really hit me.  A coworker had dropped off a gift for us, and it was sitting on our coffee table when we got home.  There was a hand written, 3 page letter.  The first page was thanking us for sharing Ayden’s story.  Thanking us for being open and vulnerable, and how it has impacted others more than we will know.  The second page explained part of the reason behind the gratitude.  This individual has a one year old son, whose heart stopped during a routine CT scan.  She explained that it took the knowledge and skill of 50+ people to get her little boy through the crisis.  He is alive and well now.  He is okay.  But part of what revived him, were two of the very things that the research study Ayden is being a part of is seeking to accomplish.  Those same two things saved her baby boy’s life.  We had been told that the research study Ayden is a part of will save countless lives all over the world.  It’s nice to be told that.  But hearing of a specific instance, knowing the name of the little boy who was saved, knowing the heart of the momma who almost lost her son, makes it real.  It provided a glimpse into so much purpose behind our baby girl, and what she will help accomplish.  To hear the gratitude of a mother who doesn’t have to experience the grief we are experiencing, was so meaningful.  It meant so much.  The third page of the letter spoke of her baby girl she lost at 4 months gestation.  Little Willa Tupper.  She shared that she always feared her little Willa would be forgotten, and assured me that our Ayden would never be forgotten.  Her letter ended with “You can have confidence that Ayden’s story is going to continue.  Her story did not stop at her beautiful birth.  Ayden will be in my heart forever.”

Unless you’ve lost a child, and had the fear that someday you will be the only one that remembers her/him, you will never know how much words like that mean. 

Remember how earlier that day I asked God to show me something that would allow me to see part of His plan for our horrific circumstances?  I didn’t even realize until later that night as I was lying in bed talking to Nathan, how many things He had shown me that day, in answer to that prayer.  I have only mentioned a few of the things He showed us, but there were many more.  God is good, even when our world is everything but good.  God is faithful.  God hears our prayers.  God answers our prayers, even if they aren’t in the way we want them to be answered. 

The pain of losing Ayden did not subside that day.  But there was purpose in spite of the pain.  There was a glimpse of something greater, despite our circumstances.  There was hope behind the loss.  There was comfort alongside the pain.  I still wish with all my heart that our baby girl was still with us.  But I have accepted our circumstances.  I have accepted the fact that she has left us.  And I am choosing to seek out a greater purpose for our grief, and let her story continue to change and save lives.  I probably won’t ever know the full extent of Ayden’s purpose and impact.  But I hope I get to hear many more stories, and many more ways she has touched others.  Please continue to share any of these moments with us. 

Our baby girl had purpose.  She has purpose.  For that I am forever grateful.

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.