"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.