Grasping the Memories

It’s been just over two years since we held our first son in our arms. In those years, not a single day has passed where Aaron’s name hasn’t been spoken in our household or when he hasn’t been on our minds. We think of who he would be right now and what he would be doing. We listen to the sorrow in the voices of his big sisters as they speak of missing their little brother.  We see him carefully sketched in the sky of every single family drawing they make.  We find ourselves absentmindedly running our fingers over the treasured keepsakes that are the only tangible evidence of his brief little life.

Aaron is, was, and will always, be a part of our story and a part of our lives. These days, it has begun to feel like those around us have all but forgotten the tiny little baby who stormed into our lives, stole our hearts and was gone again just as quickly. There is this mistaken notion sometimes that grief is supposed to follow a linear path and should get easier over the course of time.  Unfortunately, this just isn’t typically the case.

Our children spent this past weekend with my parents so that Chris and I could spend some much needed time focusing on one another.  On the way to drop them off, we stopped by the cemetery to “spend some time with Baby Aaron” just as we do every time we head that direction for a holiday or family gathering. (For those that don’t know, the cemetery is just outside my hometown and is just over an hour away from where we live now.)  They love to sit in the grass and talk to Aaron while they rearrange every single trinket and keepsake that we have placed on his headstone. This weekend, they pulled up handfuls of little clovers so they could leave him bouquets of “flowers” and talked me into making a clover chain to leave for him as well.  They blew him kisses, told him they loved him and then we continued on to see my parents.

When we picked them up yesterday, we had only made it about fifteen minutes into the drive before my oldest daughter asked to go back to the cemetery before we went home.  The weather was terrible, everyone was tired and we were running behind so we reminded her that we had just been there and promised that we would go again next time. She quietly agreed but when we checked the mirror a minute later, we saw her tear-streaked little face and she gently explained that she missed Baby Aaron and really wanted to go see him again today. We pulled over so I could climb in the back to hug her and her sister. Then I tried again to explain why we couldn’t go to the cemetery today and promised that we would get down his pictures and keepsakes so we could look at everything when we got home.

So, that was what we did.  We brought down three large black and white NILMDTS photos that sit atop our entertainment center, got out the blanket that he was wrapped in at the hospital, and carried in the weighted teddy bear that we had made to match his birthweight. Then we all sat in the living room floor as the girls carefully wiped the dust from the photos and our youngest snuggled his head into the belly of the teddy bear.  We patiently answered questions that we’ve already heard a hundred times about why Baby Aaron had to die, how he got his “boo-boo,” what his head looked like, and why he had to wear a hat.  We had to carefully navigate questions from our four-year old about why she couldn’t see the pictures of Baby Aaron’s head without his hat.  I had to fight back my own tears as hers began falling when she told me that she was so sad because she couldn’t remember seeing him at the hospital. 

It tears me apart to see such innocent little people struggling so hard to comprehend something that even their parents will never begin to understand. We wonder at every turn whether we’ve handled things in the best way for them or whether we should have done everything completely differently. We fight almost daily to keep our emotions in check so that we can help them to properly process their own.

Yet, they are often the ones who end up teaching us in the process. We marvel at the wisdom and the grace that they continue to exhibit at the most surprising times. We are often left speechless at the faith they possess and the untainted trust in God that they harbor. Their simple explanations, unbridled compassion, and awe-inspiring unconditional love for their baby brother are some of the greatest blessings we have been given in this lifetime. 

In the Grass

The holidays are rough.  Nearly anyone who has ever lost someone close to them will tell you that.  What they don’t tell you is that there will be no real rhyme or reason to exactly how rough or how gentle a particular holiday might be. Sometimes you reach the end of the day and think to yourself, “Well that wasn’t nearly as bad as I expected.” Other times, you find yourself sobbing in the grass struggling to breathe. Yesterday was Easter and unfortunately, it was the latter of those two options.

I can’t, or won’t, speculate about the exact reasons why yesterday was so rough because I’m sure it was a combination of things.  This would have been Aaron’s third Easter and he would have been old enough to toddle around trying to find an egg or two in the back yard at my parents’ house.  He would have had a noisy little toy car to throw around just like his brother and my nephew were doing.  We would have been struggling to keep him from trying to eat handfuls of candy like his sisters did. And at the end of it all, we would have packed him into his car seat and hoped he fell asleep for the car ride home.

Instead, the “Easter Bunny” left a little toy car on the table with everyone else’s chocolate bunnies, candy and toys. I heard my five year old remark how nice it was that the Easter Bunny brought something for Baby Aaron too.  We opened baskets and took pictures, all the while thinking in the back of my head that I should have been trying to fit four happy little faces into the frame instead of three. We got everyone dressed and packed into the van, stopping to make sure that we had the toy car and the pinwheel for the cemetery. We spent time eating and laughing and spending time with our family. We watched as the kids had their egg hunt and I fought back silent tears as I thought of the two-year old missing from all the fun. When it was time to go, we all said our goodbyes and went our separate ways. But instead of heading home, our next stop was the cemetery…just like it is after every holiday and family get-together.

I can assure you that there is no feeling in the world quite like watching your two oldest children running across a quiet cemetery to the grave of their little brother. There really are no words to describe how it feels to watch your five year old kneel in the grass so she can play the music from her new jewelry box for her baby brother or to see your four year old bend down carefully to kiss the top of his headstone. I can not explain to you the anguish in my heart as they tenderly and purposefully rearranged each little trinket we have left for him during the last two years. And I would never want you to know exactly how it feels to watch that same four year old do a little dance in the grass beside your son’s resting place because she wants her brother to see what a good dancer she is.  I hope you never have to hear a five year old explain to her little sister that their brother’s soul is up in Heaven and his body is below the ground under “the pretty stone we got for him.” I wish she didn’t have the need to feel like she has to remind her sister about how to be careful of other people’s gravesites because “you don’t want to step on their special resting places because we wouldn’t like it if someone else stepped on Baby Aaron’s.” I wish I didn’t know how it felt to comfort those same little bodies when the tears slip from their eyes and they tell me how much they wish he was here with us instead of in Heaven. I hope you never find yourself sobbing in the grass on a sunny Easter afternoon feeling so sad, angry and frustrated at a world that no longer resembles the one you used to know not so long ago.

I have always fought so hard to find the grace and the beauty in Aaron’s short little life…sometimes I win that fight and sometimes I don’t. I have tried so hard to keep this space one of healing and encouragement, but that also means being honest in times when I don’t feel like being honest.  This is one of those times because honestly, I’m having a hard time finding the grace and the beauty right now.  I’m sure it will return one of these days but for right now, the truth is that I am angry and bitter and hurting. And sometimes, I think we have to remind ourselves that this is okay too.  

Struggling Back to the Shore

It is said that grief often creeps up on us when we least expect it and takes us by surprise. I've described it before as being like a wave where one minute you seem to be on solid ground, then all of a sudden it comes crashing down on you leaving you drowning, scared and disoriented. You could be standing on the shore just watching the small waves roll by for months or even years, then without warning you're under water once again and struggling to breathe as though this time was the first time all over again.

 Tonight, I am so far underwater I can't even see the sky. I haven't cried about Aaron in months...I have certainly teared up here and then but haven't had the urge or the need to break out in the kind of tears that seemed to flow so frequently in the beginning. It isn't that I've been ignoring my feelings - I still talk about him often and think about him almost constantly, but I truly felt that I had reached a place of peace, rest and stability.

 My trigger tonight was something so simple and so beautiful...a friend had shared the story of a woman whose family had been given a bag of toys for their little boys from a stranger in a parking lot. They noticed that the bag had a tag attached and when they read it, they saw the story of a little boy who had died and that day would have been his third birthday. The note simply asked for this family's little boys to enjoy those toys since the little boy in heaven wouldn't be able to.

 What started out as a small sentimental tear in the corner of my eye quickly turned to the kind of all out gasping, full body sobs that seem to be specially reserved for the kind of pain that can only come from the death of a loved one. It was a release that I hadn't even known I needed and for which I was certainly not prepared. I know with all my heart that I miss my little boy every single day, but that all-consuming sense of loss and mourning is usually carefully tucked away and guarded.

 So, I find myself once again struggling to breathe...struggling to bring my head above water and plant myself as firmly as I can in the ever-shifting sand beneath my feet. I'm not nearly as terrified of the drowning as I once was because I know that, in time, I'll find myself upright again and standing tall enough to face the next wave when it comes.

 And that, I believe, is the whole reason that I felt compelled to share this...if you are drowning or struggling to find your way back to your feet, don't lose heart and don't give up. Sometimes it takes a little longer than others but as long as you keep pushing and trying, you're going to get there - this is a part of the process. Reach out for help and accept it if you need it. And if, right now you find yourself standing firmly on the shore watching the waves, enjoy the reprieve and don't let yourself feel guilty for the break.

A Witness to Grace

Today, our little guy would have been 17 months old. He'd be walking and babbling and melting our hearts just like his siblings. Our lives would be immeasurably different.

 Instead, I am struck daily by the fact that I will never hold or see or smell that beautiful little boy again. Sometimes, it registers and passes quickly. Other days, it knocks me to my knees and leaves me with a tear-streaked face and an aching heart.

Yesterday was one of those that left me struggling to catch my breath. I'm really not even sure why it hit me so much harder than usual, but I literally had a few moments where I just could not get it under control. My oldest is a very observant young lady and she noticed immediately that I was upset. This isn't the first time it's happened for any of us and we've always used the tears as an opportunity to discuss how much we miss Baby Aaron and to talk about how it is okay to be sad.  Usually, both of the girls will respond with "I know Mommy, I miss him too."

This time, however, Tori decided that she wanted to do something more.  She immediately set to work drawing a picture and said the following to me:

"Mommy, I know you're sad about Baby Aaron today, so I'll draw a picture of you with him!!"

  "Look Mommy!! He's all wrapped up 'cause you just got him from the hospital! And he's all better because God found a way to fix him. Do you like it??"

For a moment, I was simply speechless.

Then her sister chimed in,

"Look Mommy!!  I made this one for you!  I used lots of purple because I know it's your favorite!!"

It was at that moment that I realized, "This. This is the reason that we made sure that the girls got to meet their brother.  This is why they got to hold him, kiss him, hug him and love him. This is why we don't try to hide our grief. This right here."

They know that he was real and loved and cherished.  He exists for them in no less real a way as our rainbow baby does. They continue to grow and learn and amaze me in ways that I could never have imagined.

As much as I hate the fact that our children are so well acquainted with grief and death, I feel so completely blessed to be witness to the grace with which they handle it.

Happy Birthday Son

Today was Aaron's first birthday - our little guy would have been turning one today.  We should be planning the last steps for a first birthday party for this weekend.  We should have been gathered around our kitchen table tonight so the girls could sing "Happy Birthday" to their little brother.  I should be sketching exactly what I want his big birthday cake and cupcakes to look like.

Instead, we went to Hobby Lobby so we could all pick out something to take to the cemetery.  We went to the party store to pick out balloons so the girls could "send a balloon to Baby Aaron in heaven." I stayed up late last night making a little Noah's Ark cake for just the four of us. We drove an hour and a half to the cemetery where we ate cake in the back of the van and picked up the pieces of the tiny angel statue that had shattered in the cold weather.  We watched as the girls carefully picked just the perfect spots for their pinwheels and rearranged the froggy statues for the hundredth time.

We spent the entire day acutely aware of the fact that this day wasn't the way it was supposed to be.  A first birthday is supposed to be about celebrating the completion of your little one's first year on Earth.  It's supposed to be a day where parents get to plan this cute little party for a baby who will never remember it but is thrilled at the opportunity to eat way too much sugar. 

For someone who has lost a child, it is instead a day where we spend the entire day wondering who our baby would be right now, wanting to know what milestone he would have just achieved and pondering what his personality might have been like.  It is one more day where we face the reality that our child is no longer with us.

On a day like today, the greatest presents aren't what you might expect on a normal 'first birthday.'  The most precious treasure is for someone to simply acknowledge that our baby existed.  It's a text from a friend  to let me know she's been thinking of Aaron.  It's a Facebook status by another mommy who knows just how I feel today.  It's a family member who checks in to ask how we're doing and let us know we're in their thoughts.  It's the toy fire truck and the "Happy Birthday" balloon left on Aaron's grave.

Sharing

I don't post as often anymore but I do still write from time to time.  Many of those things are written in such a dark place that I'm just not as comfortable sharing them.  But yesterday, I had an experience that was so touching I felt that I just had to share.

I almost always go to the same small post office when I mail the packages for Aaron's Angel Arms.  It is the closest to our house and the ladies that work there are simply fantastic.  They recognize me, chat kindly and nearly always have a smile.  In the course of the last ten months or so, I have literally mailed hundreds of packages through their hands. 

Yesterday, one of the ladies asked me about what I was mailing (it's been briefly mentioned when filling out customs forms, but I've never really elaborated).  This time, however, the office was empty and I was given the opportunity to tell her about Aaron and about the items that I've sent out around the world in his memory.  She was visibly moved and said that she would have to share her story with me some time.

As her computer slowed to a near halt, she then began to tell me about her only child that was born nearly forty years ago, but unfortunately her machine quit altogether, the office began to fill up and we didn't get to finish talking.  I am truly looking forward to another quiet moment in the post office when she and I will get to talk more about her own journey down this road. 

I have said it before, and will likely say it again, but sometimes I am simply speechless when confronted by the sheer number of parents who have had to go through the loss of a child.  It is one of those things that makes people so uncomfortable that many parents are terrified to mention their own loss because they simply don't know how others will react.  The fact is that every single person reading this knows at least one person, and probably more, who has had to deal with the death of a child - whether it be a miscarriage, a stillbirth, an infant loss or the death of an older child. Though each loss presents itself a little differently, they are all devastating.

It is easy to underestimate how much it means to one of us when you simply give us the opportunity to mention our deceased child.  I have made it a point to include Aaron whenever I feel the need to do so; though I do not always choose to include him when someone asks how many children I have (I often simply say "I have two little girls at home.").  He will always be our third child, but because the question is often so casually asked, I don't feel like having to explain.  Other times, when I feel like the conversation warrants it, I will include him...what strikes me is that I am nearly always met with a parent who has their own story of loss that they seem relieved to be able to share.  I am always glad to listen and allow that parent to let their own child live out loud in that moment - do you do the same?

All we ask is that you listen intently to what we would like to share.  We don't need you to fix anything or offer the perfect words of healing.  We don't need you to fidget or change the subject.  If we have chosen to share the memory of our child with you, it was a conscious choice.  Just choose to be present and remember our little one with us in that moment. 

Tiny Little Shoulders

I have been reading through the dozens of posts that are sitting in "draft" right now and realized that I never came back to share the story of our anatomy ultrasound.  Obviously, things went well and we are now just four weeks from our due date but it seemed a story worth sharing.
~ ~ ~
Thankfully, everything went wonderfully and we got some extremely clear pictures so there is really no doubt that we will be welcoming another little boy into our family soon.  Provided that all goes well in the weeks to come, there should be no reason for us to have to visit the specialist again.

While we were there, the ultrasound tech asked the girls if they thought they were getting a little sister or a little brother...despite the fact that they have both said "boy" several times throughout the pregnancy, they both enthusiastically indicated that they wanted a little sister.  Much to their dismay, the picture paused on the screen overhead told a different story.  To our surprise, Tori stomped her little foot and reacted pretty strongly to the news.  Thankfully, it was short-lived but she was visibly displeased for the rest of the ultrasound.  We were a little puzzled because it was pretty out-of-character behavior for her, but she was at least quiet for the rest of the appointment.

We stopped at the restroom on the way out of the hospital - Tori came with me while Abby decided to stay with Daddy.  That gave me a quiet moment to ask her about why she was so upset with the news that we would be getting another baby boy...there was nothing that could have prepared me adequately for her response.  When most parents ask that question, they expect any number of answers ranging from "I don't like boys" to "I want someone to play dress up!"

What I discovered in that quiet restroom with my nearly tearful four year old was that she had become convinced that "all little brothers go to Heaven" and that this new development meant that our baby wouldn't get to stay with us this time either. I think I literally felt a piece of me die inside when I realized the magnitude of the grief and anxiety that the tiny little person in front of me was shouldering.  What on Earth was I supposed to do with that?

The only thing I could do was to pull her close, hug her tight, tell her that this little baby was as healthy as he could be right now and that we would do everything we could to get to bring him home.

Notice anything about those words? I couldn't bring myself to promise her that this baby would be okay. I couldn't offer reassurances that we would get to bring a baby home this time.  I can't tell my little girl that everything is going to be all right.  I want to believe that all of those things are true and I wish with all my heart that I could make those promises, but the best that we have to offer is that we will try.

Ten Months

Today, Aaron would have been ten months old.  As I sit here and cry, I find myself wishing that I had the time to devote to some writing today...as my soul is overloaded with things that need to be said.  Unfortunately, I can only steal a moment away to share just a few thoughts.

My four-year-old caught me sniffling at the computer this morning as I was looking at pictures of Aaron and deciding which one to share with Facebook on what should have been his 'ten-month' birthday.  And, of course, she asked why I was crying.  As we've done each time before, I just let her know that Mommy missed Baby Aaron but that I would be okay in a few minutes.  She placed her hand lovingly aside my face and said, "And God doesn't mind if you're sad about Baby Aaron?  Because He understands." 

I suppose He probably does, but I find myself struggling to understand.  I find myself hoping against hope that I could find the innocence and the acceptance that our children seem to share so readily just when we need it most.  The faith of a child really is something to be admired. 

Changed

You hear a lot of parents in the babyloss community who talk about the friendships and family relationships that they've lost since the death of their child.  Sometimes it happens because there is a big confrontation where hateful words are exchanged and irreparable damage is done.  Sometimes it just happens slowly because phone calls and visits taper off and the relationship quietly fades away.

We often hear that we have "changed" or we are "different."  Of course we are.  It would be foolish to think that we wouldn't be.  What others don't seem to realize is the depth of the ways in which we have changed and become different people.

In some ways, we learn to appreciate things more.  We truly understand what a blessing it is to be given each day and strive to make those moments count.  We work to cherish the relationships and the love that we are fortunate enough to have.  We do all of this because we have come to realize that the life we are living today could be altered in the blink of eye.

With that knowledge also comes an intense fear.  It becomes a near-constant companion and one that we may not even be aware that we carry around sometimes.
  - I find it in the moments when I am watching my children sleep or in the breaths that catch the smell of their shampoo...without warning, I find myself terrified to walk out of their room or to let go of them because the fear of losing them too overwhelms me.
  - It attacks me when I come across a photo of a friend's baby on Facebook.  I have become so used to the idea that "babies die" that my first thought now when I see a sleeping infant is "Oh God. What happened??"  Images of smiling, happy newborns actually catch me a little off-guard because that is no longer the norm for my haunted mind.
  - I have to swallow the panic sometimes when my husband takes the girls for an outing while I nap because my mind starts racing with the thoughts of what my life would be without the three of them.

So, if you want to know why we are different or why we look so tired and haunted...it is because we are.  

Walk Your Own Path

For what it's worth, I actually wrote this post about a month ago when I had been reflecting on a few recent events...when I came back today, I found that it was still something heavy on my heart and I felt like it needed shared. 

I know that I have examined the topic of bitterness a few times and have always been glad to find that it isn't something with which I have had a terribly difficult struggle. I am human, so therefore I certainly have those brief moments where I simply can not help but think "She got to have a perfectly healthy baby and I had to bury mine??" Thank God those are few and far between.

For the majority of the time, I am genuinely happy and excited for others when I find out that they are expecting a baby.  I am thrilled when they get to experience a pregnancy journey free from the agony of losing a child.  While I wish that Aaron's pregnancy and birth had been free from sorrow, I would never begrudge anyone else that experience.  In fact, I pray that no one should have to find that kind of pain in their lives.

Lately I have seen so much bitterness and anger seeping from others in my life who have lost a child or lost multiple children and it has been weighing heavily on my heart.  I understand that "hurting people hurt" but I do not accept that as an excuse.  I firmly believe that you have two choices when faced with such a deep and crippling grief, because no matter what you do, you can not escape a change of epic proportions.

You can choose to let that grief consume you and let it proceed to fill every corner of your life.  You can choose to shut down and allow yourself to cease functioning in a world outside of your own.  You can choose to believe that your life completely ended in the moment when your loss occurred.

Or

You can choose to take ahold of the grief and make a decision to say that it will not define you.  You can choose to stand up and find a way to fit the "new you" back into the world that will continue to exist whether you choose to accept it or not.  You can acknowledge the fact that the life you used to know may have ended, but find strength in knowing that there is a new life you can create for yourself.

I believe that you will find days when it isn't possible to be in control of the grief or when it simply isn't possible to reach inside and find that kind of strength...but I also believe that if you don't wake up and try again the next day, you are condemning yourself to misery.

None of us asked for the pains we've been given.  Sometimes, we simply are not in control of the things that life lays at our feet.  And we may not always be in control of our reactions to what we are given.  I do, however, think we absolutely have to strive every day to try to regain control.

Stop wasting precious energy resenting those around you who get to walk what appears to be a sunnier path and start figuring out how to navigate the path that has been set before you.

One Year

It has been one whole year since we received the initial shock of Aaron's diagnosis.  It was October 9, 2012. It was supposed to be the day we found out whether we were having a girl or a boy (although as it turns out, we still got a surprise on that one at delivery). It was supposed to be the day that we got to see perfect little ultrasound pictures of our baby so we could share them with friends and family.  It wasn't supposed to devastate our whole world. But it did.

A year ago, the girls were staying at our house with my parents.  They knew that Mommy and Daddy were upset but we hadn't even had time yet to process the news for ourselves, so there was no way we could have possibly tried to explain anything to them.  We stayed about thirty minutes away in a hotel room just trying to make sense of everything that had happened in the last twelve hours...an entire year later and there are still days where I'm not sure that we've made sense of anything.

I know that I have been guilty lately of long absences from writing anything and that isn't because I think of Aaron any less often or because I don't have things rolling around in my head that I should really be putting down.  My absences are more because of this unbelievable fatigue that has settled over our house in the months since his death...although I know that it is therapeutic to sit down and put words to the thoughts, it's tough to make a choice between sneaking into bed a little earlier or stealing a few minutes at the computer - sometimes it isn't even a choice, we barely make it to bed before we both just give up for the day and collapse.

I know that as parents who work full-time jobs, it isn't such a strange thing to be so tired...and if it was just the physical exhaustion of too-little sleep, I think it would be a lot more manageable.  Actually, I think I would welcome that sort of physical exhaustion.  Where we stand right now is with that painful combination of mental fatigue coupled with the normal physical exhaustion. 

Shortly after Aaron's diagnosis, I would spend hours looking through other blogs and often found many of those parents suffered the same sudden absences in their writing several months after the deaths of their little ones...I naively thought that maybe this was because that was the point at which things really started to turn around and the therapy of writing wasn't quite so necessary.  Now, I'm beginning to wonder if it is more because they found themselves at the intersection of fatigue, grief, depression and life.

It's just another step of the journey and although it is proving to be pretty unpleasant, I find myself more and more convinced that it's a pretty normal one.  We are learning to live in a reality where few people speak of our son and when we dare to do so, their discomfort is nearly palpable. We are still struggling to manage our grief and our loss in a world that feels as though we should be healing and "moving on."  It probably looks a lot like our lives have "returned to normal" but the simple truth is that we still have no idea what that is supposed to mean. 

Little by little, I trust that life will continue to smooth itself out and we will continue to get better at balancing everything.  There are days here and there where I am hopeful and it seems like we're really succeeding at that task...I can only hope they find their way more frequently into our lives. 

100 Posts...6 months...Who Am I?

I wrote this one on 9/1/13, two weeks after Aaron would have been six months old.  I started sobbing about halfway through and as soon as I finished, I walked away and haven't been back in almost three weeks.  Those three weeks haven't gone nearly as well as I had hoped they would, but we're working on it.  

Once again, it's been longer than I would've liked since I last sat down to write.

Two weeks ago, Aaron would have been six months old. I had every intention of sitting down that day to write something...I didn't do it.  We celebrated his day, of course, but no words came to me when I tried to think about what to write.

On one hand, the pain of not having a six-month old to cuddle and kiss and snuggle was even more present than usual.  There were certainly moments that day where all I could think about was how I was supposed to be holding my son.  There were other moments where I realized just how much I wanted his sisters to be playing with their baby brother instead of devising new ways to torment one another.  Still, there were more moments where I caught myself just staring.

But more than all of that, it was on that day that it finally seemed time to start bringing myself back from wherever I have been in these last six months.  I don't mean that I have stopped grieving - that will last a lifetime. I don't mean that I am "moving on" - I have the rest of my life where I will forever remember that there is a piece of me missing.  And I don't mean that my pain has somehow magically lifted - there have been moments in the last two weeks where I still have found myself in tears.

What I mean is that I realized I wasn't being fair.  I wasn't being fair to myself, my husband, or my son...but most of all, I haven't been fair to my daughters.  They lost their little brother six months ago...everyone knows that.  What I don't think I realized was that they also lost their mother...she disappeared on the day we received Aaron's diagnosis.

I have always been very honest about the fact that I knew I would walk through this journey and emerge a different person, but I don't know that I've been honest with myself or anyone else about exactly what that looked like.

The woman who has been living my life has not been the woman I ever wanted to be.  She has been angry and moody and unpredictable.  She has been sulking and exhausted and irritable.  She has yelled at a husband who did nothing to provoke and snipped at children who did not deserve it.  She has neglected her housework in a way that left only the bare necessities accomplished.  She walked through each day and completed the tasks that most needed done but struggled to remember why she did them at all.  This woman was a shell; she was simply holding my place while I tried to figure out who the hell I was supposed to be now.

On the day that my son would have been six months old, I woke up with more energy than I'd had in nearly a year.  I washed every single dirty dish in my sink all at one time.  I sorted the crumpled laundry that was spilling over the side of the hamper.  I scrubbed the stove and the toilets and countertops.  I gave the dog a bath and I planned activities for the girls.  That week, we finally went to story time again.  I planned menus and shopping lists for the month.  We all spent time in the kitchen baking surprises for Daddy to come home to.  We started focusing on preschool practice.  We started living again.

I still miss Aaron just as much as always - I don't think that will ever change.  But I did realize just how much I've been missing myself too.

Looking Back: A Reflection on Seeing the Specialist

This post was originally written on 8/3/13. 

Seven days after our first ultrasound, we left the girls with a friend (the one person in real life who knew what was going on with us) and headed to the MFM specialist.  I'd had plenty of time to consult Dr. Google and know more about what we were facing and came prepared to talk to the doctor.

Before we met with him, we had to talk with the nurse who, of course, needed to update my medical information from the last time.  She initially appeared very confused as to why the computer was showing that I was 60 weeks pregnant - clearly I wasn't here for happy reasons last time and it isn't physically possible for me to be that pregnant.  So, I would have honestly hoped that her powers of deduction might have solved that quandary.  Nope - I needed to explain that Aaron was born in February and had died.  Following that exchange, we then got to listen to her repeat to herself THREE times as she updated information, "Okay, four pregnancies, two living children." "Four pregnancies, two living children."  "Four pregnancies, two living children."  ...My husband is an exceedingly patient man, but by the time we had heard that three times - even he was shaking his head in frustration. (She was a very sweet lady, but obviously not at all thinking about the words coming out of her mouth in front of two people who recently buried a child.) Finally we finished that step and the doctor came in.

My first question was "Why do we even need to do this ultrasound - it's going to cost us a small fortune and won't it show the same thing as the last one?" His response, in a nutshell:  "We are certified for just exactly this reason and I don't trust other people's pictures...so in order to give you my input, I have to see it."  Okay, made sense to me.  (He also added a few comical details that just reinforces what I've said all along about his bedside manner - he is simply incredible.)

For the next hour, he stayed in the room to talk with us and made us honestly feel like we were the only thing  that mattered in that time frame (impressive, given that I know that they are a very busy practice).  Within the first few minutes of the ultrasound, and while he was still sitting across the room from the screen, he was able to tell us that our baby looked perfectly normal.  He asked the ultrasound tech what she was getting as official measurements and she wasn't even close to the upper range for acceptable limits.  He took the time to explain how the nuchal translucency can be easily measured incorrectly and said that roughly 30-50% of the cases like ours are simply a result of bad positioning or honest error.  He walked us through all of our available testing options and explained what he would recommend, if we chose to do any additional testing at all (at this point, our risk returns to approximately what it would be for the general population anyway).

We will see him again in September for the usual 20 week anatomy scan.  Typically this is done in the OB's office and I was initially a little grumpy about having another expensive ultrasound done, but after time to let it all settle - I'm actually glad that we'll be having it done at their office.  You see, I made the mistake of continuing my quest for knowledge and stumbled upon the ever-growing list of things that can become apparent on ultrasound between 12-20 weeks.  This is truly one of those cases where ignorance is bliss.  I was much better off when my information was "Your baby has a perfectly shaped little head and just the right amount of fluid behind his or her neck."  I should have stopped there.

Looking Back: A Reflection on the First Ultrasound

This post was written on 8/3/13.

I'm going to cheat a little for this entry and do some reflection on the week following that first ultrasound.  I simply could not bring myself to sit down and write during that time...no matter how much I knew I needed to, the words just would not come.  And although we are now past this part of our journey, I want to put all those feelings into words before they begin to fade.

I barely slept at all the night before our first ultrasound.  Even though I knew there was nothing I could do to change the outcome of whatever was going to happen, I was nervous.  We had already made the decision that the girls would be staying with my parents that night instead of coming with us to the ultrasound (to be fair, we had not yet told anyone other than a few close friends about the pregnancy).  I could not stomach the thought of them being in the room if we were to once again receive devastating news.

I did reasonably well on the way to the doctor's office, but as we stepped off of the elevator and prepared to walk in, I just lost it.  We were a few minutes late because I stopped at the restroom in an attempt to get it together but quickly realized that with each passing moment, I could literally feel the hysteria working it's way up my throat and it wasn't going to get better with a few minutes of crying in a restroom.  We went inside and I struggled through a brief check-in.  Our favorite nurse came out to speak with us the waiting room (somehow, the receptionist had gotten the idea that I wanted to reschedule?) and I let her know that today was the day - I would be a mess whether we did it now, an hour from now or three weeks from now.

It was the same room where we received Aaron's diagnosis and I can not even begin to describe the intense panic of walking back into that room, sitting on the table and waiting to see the images that would appear.  Even as I sit here typing, my body is nearly vibrating with the emotions that I can do nothing to quell.

She was able to point out almost immediately the baby's full, round head with two neatly defined lobes - no anencephaly.  What an amazing blessing as we got to hear that tiny heartbeat for the first time and see little arms and legs flailing around.  I struggled not to jerk around too much as I worked through the tears of joy.

Then, as she was finishing up the ultrasound, she asked if we had done any genetic testing after Aaron was born.  We had not.  She asked if we had done any yet this pregnancy.  No. Then asked if we were planning to do any. No...but what do you see that is making you ask so many questions?? She informed us that she was seeing an increased nuchal translucency, one that was nearly twice what would be considered "within normal limits." (Simple explanation is this: nuchal translucency is a measurement of the fluid present behind the neck of the baby; it is an indicator of risk for several genetic conditions including Trisomies 13,18, 21 and Turner Syndrome.  It warrants follow-up testing.)  She went to speak with the doctor and since we had an appointment with her that day anyway, she led us to the exam room and we waited to talk with her.

The information was basically what I already knew - what was seen on the ultrasound was not a definitive diagnosis but was a risk factor for a number of things.  They would be calling for a consultation within a week with the same Maternal-Fetal Medicine specialist that we saw to confirm Aaron's diagnosis.  His office called a few hours later to set up an appointment in seven days for a Level 3 ultrasound and a consultation with the specialist.

For those seven days, we lived in a kind of limbo that would be hard to describe.  Our options ranged anywhere from "Your child has another, totally-unrelated fatal birth defect" to "Your baby might be perfectly healthy without a thing in the world wrong" and everything in-between.  With Aaron, the diagnosis was definitive from that first ultrasound...there was little room for doubt.  We began grieving for him almost immediately - those were pretty clear feelings of loss.  This time, we weren't really allowed to feel anything other than terrified at the prospect of burying another child.

Looking Back: Our Pregnancy and The Girls

This post was also written on 7/15/13 - before we were ready to announce this pregnancy. 

We have had the discussion regarding, "What will we do if this happens again?" Despite all that we have been through, we would make exactly the same decision that we made with Aaron. My biggest fear here is not what it would do to me or to Chris, but what that means for our children.  We have not yet told the girls that we are having another baby, but that doesn't mean that the topic hasn't come up.

Abby started it...about a day after this new life began to exist, she climbed up on top of me on the couch and asked about the babies in my tummy.  I told her that there weren't any babies in Mommy's tummy and reminded her that Baby Aaron was in Heaven...but the kid was insistent that there was "a boy and a girl in your tummy!"  Honestly, I told Chris about it that night and we sort of dismissed it from there.  About two weeks later, on a Saturday morning as I was changing after work, Abby came running in, slapped both hands on my belly and yelled, "A boy and a girl in your tummy!! Babies in 'nere!"  At that point, it really wouldn't have been time to take a test but I thought I'd humor myself and give it a shot.  Sure enough, it was almost instantly obviously positive.  We'll know more in a few days at our ultrasound...but apparently she knew something was up. 

Then about a week ago, we had a much less enjoyable discussion with Tori.  I'm not even quite sure how the discussion came up, but I think it started because she was upset that God doesn't talk back to her when she talks to him.  That must have led into talking about Baby Aaron being in Heaven which prompted Tori to tell us that she wanted "a new brother or sister that gets to come home and stay here with us."  I think that was one of those moments where I could actually feel a little piece of me die on the inside...to hear an expression of such complete heartbreak and clarity from a four-year old is not something that I will soon forget.  We told her that we would do everything we could to have a healthy brother or sister for her sometime soon.  She got very excited and said "I want one to keep and not one in Heaven like Baby Aaron, ok?!"

I simply don't know what challenges lie ahead when it comes to this pregnancy and the girls.  I have a feeling that we are going to somehow have to balance alleviating their fears without offering them too much promise that "things will be okay."  At this point, we know better.  We have lost a child and I have talked with countless other parents who have also lost a child.  We have entered that realm where a healthy baby is no longer something that we take for granted...it is something we hope and pray for, something we wait anxiously for, but something we no longer feel is a guarantee.  We don't want to offer them promises of a healthy newborn that we are not in control of providing...we can do everything in our power to try to make that happen, but even then there is no way we can ever control for every variable.

That is the whole issue we, and the girls, are facing right now.  We have seen firsthand that even when you do everything right, you aren't guaranteed a happy outcome.  I know that Wednesday's ultrasound will help ease our mind at least a little, but it won't guarantee that everything will be okay.  No one can do that.  Please please don't try to tell me in the coming months that you are "sure everything is going to be okay."  I know that your intentions will be good, but they are empty words because you have no idea what else to say.  It's okay...neither do we. 

Looking Back: Three Days Before Our Ultrasound

This post was written on 7/15/13 - before we were ready to announce Aaron's little brother or sister. 

My intention for the last eight weeks had been to create posts and save them in draft form until I was ready to publish them.  We found out in May that we are expecting a new little one to join our family in January.  I had wanted to carefully document our experiences and feelings during these last two months so I could share them in a back-dated series once we were prepared to share that news.  Unfortunately, that hasn't happened.  Here I am, three days before our first ultrasound, and I am just now sitting down to put words to my feelings. I didn't want to wait until after the ultrasound because I'm not sure I would still be able to accurately capture all that has been going through my head after that point, so I want to do it now. (Though, by the time you are reading this we will have had the ultrasound and will have a better idea of what path we will be walking from here.)

I know there are plenty who are going to have opinions regarding our timing and say that it's been too soon since we had Aaron.  To that, I can only say that our lives apparently run on God's timing.  Given that I know my own heart and where my own fears were leading me, I have to trust that He had a hand in the timing for one reason or another. 

For the first six weeks, I didn't even want to call the doctor's office because I knew that would make it feel too real.  I know that isn't going to make any sense to anyone who hasn't been there, but in my mind...once I called the doctor, that started a countdown to the day when we would have to go in and have an ultrasound that would tell us whether this new life was one we got to keep or another where we had to say goodbye.  (Even the woman who set up my appointments was a little irritated that I had waited over a month to call in...but how do you adequately explain to someone that just making the phone call nearly sent me into a panic attack without sounding like a lunatic?)

Turns out, I was exactly right.  I was initially so positive and felt so certain that we would be blessed with a healthy baby this time.  As time goes on, I become more and more convinced that we are going to have to figure out how to make it through all the agony again because we aren't going to get to keep this baby. 

When I let my mind wander and I think about having to walk into the doctor's office and into that ultrasound room, I usually have to stop myself because my chest gets tight and it takes everything I have not to completely fall apart. That day was easily the worst day of our lives...worse than the day he died, worse than the day we said good bye, worse than the funeral.  There was nothing good that happened that day - our rug was yanked out from under us with no cushion whatsoever.  When he was born, we got the joy of seeing our son for the first time.  When we said goodbye, we had the memories of the time we spent with him.  When we buried him, we had the peace of knowing he was at rest.  I remember practically every detail of what happened leading up to the words our doctor said...and as I think about going in for this next ultrasound, those are the moment that keep playing over and over in my mind.  (As a matter of fact, after just typing this paragraph, I had to get up and walk away from this entry for a little while.)

As we approach the twelve week mark, there are only four people besides the two of us that know I am pregnant.  Two are close friends that have been unbelievable pillars of support for me, one is a woman who has also been incredibly supportive since we received Aaron's diagnosis, and the other had a whole different set of reasons behind my choice to share.  We plan to share our news at some point after Wednesday's ultrasound, but this gives us a chance to make sure that we are able to process whatever we see before we are pressured to share with other family and friends. 

Announcing Our Rainbow

"The term Rainbow Baby is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope."

Here is our "Rainbow Baby" due to arrive January 31, 2014.  

It's taken fourteen weeks and two ultrasounds, but we are finally ready to share the next leg of our journey.

During the last few weeks, I have been creating a series of posts that have been hanging around in draft form detailing what these first few months have held for us.  I honestly have not yet decided whether I will choose to share those here, in Aaron's space, or whether I will create a new space for sharing this part of our journey.  Part of me believes that this next step is very much a part of Aaron's life, as he is still very much a part of ours.  The other part of me doesn't want to overwhelm the place that began for him with the story of his baby brother or sister.

I suspect that, in the end, I will choose to continue on in this space because it would be impossible to separate the story of this pregnancy from the story of our first son.  And I wouldn't want to, even if I could.

The Midnight Orange - Christopher's Story

I have so many of my own words to share and hope to do so soon, but for now I want to share a beautiful story that I recently stumbled upon.

Many of you who know me personally have seen me share the sculpture works of The Midnight Orange on Facebook and although I don't yet own any of her pieces, I find them so simply breathtaking that I couldn't help but find myself reading the story of why she began such intimate sculpting...here it is:  (Yes, it is lengthy but I promise you that it is worth every single word.)

http://themidnightorange.blogspot.com/2010/04/why-i-sculpt-child-angels.html

FRIDAY, APRIL 23, 2010

Why I Sculpt Child Angels

Christopher Brown was really little. In a class of third graders he was teeniest among all of us. He was also the most spirited. I adored him, so we fought constantly. I was a masochist for those bickerings and used to stare at the small gap between his front teeth as his mouth moved around them proving me wrong in little bursts of animation.


This is not a story about childhood love. It is not a story about friendship. Despite the presence of these things, this is pure ache and a lesson that broke my heart to learn. I will not go into sharing the details of what made Christopher a spectacular being wrapped up in the package of an 8 year old boy. I trust you find me credible and will believe this. I also ask that despite the longevity, in Chris' honor you read this.


On the first day of summer in 1990, Christopher was playing baseball with his brother, sister, and babysitter in his back yard and the ball went over the fence into a neighboring construction site. He climbed his swing set onto his father's shed, then jumped from the shed roof over the fence to get the ball. I cannot picture this in my head (either because the logistics are not clear or because my mind is protecting itself from this visual) but when Christopher jumped the fence his hand hit a latch on a crane which released two cement highway dividers. He fell and they fell on top of him. A very cherished 8 year old lost his life that day.


There was no closure. My mother felt that attending the services would be too traumatic and kept me from saying goodbye in person. I understand, but still. I agonized for years about this, even into young adulthood. So many blanks I could not fill in. I did not know where he was interned, when his birthday was. The specific day he died. Every milestone I had, I wished for him. On first days of school I would find his seat in class and then mentally spite the child who sat there. On last days of school I would be sick at the excitement around me. I'd imagine Chris's thoughts as the final bell rang and he dreamt of ponds and trails and popcorn at the drive-in, not knowing he would die by next nightfall. For years I just carried him with me. The night before my high school graduation I dreamed of him approaching through the crowd, as grown as I, and hugging me. In tears I type this.


In my second year of college I became desperate, not for closure, but for closeness to Chris and wanted so badly to connect with his family. With such a common last name they felt impossible to find. All I could do was speak of him often and hope someone connected. One day this exact thing happened, and by fate a woman scrawled an address on scrap paper and sent me away with it. I finally had a portal to his family and despite years of longing for contact, I had no idea how I could begin to express my heart to them. 


Honestly I do not recall the specific details of the sentiment that I poured into 7 handwritten pages, but my message was strong and clear. I missed Christopher, I loved him still, and I REMEMBERED. Always I remembered him. The letter I received back I held with trembling hands, but never could I have been prepared for what Christopher's mother would share with me.


She spoke of the myriad of emotions that my letter brought forth, and I expected that would be the case. She broke me down entirely when she went on to write that receiving my letter was a true miracle that had breathed new life into their son.  She shared that tragically, the loss of Christopher was so painful for others that he became rarely spoken of.


To hear that Christopher not only lost his life but also his legacy was the greatest shame imaginable. My small but bursting childhood friend had become lost to the world. Was truly buried. I cried for days. She later wrote that the greatest gift I had given them was sharing his memory with other people and allowing him to live on in this way.. Mary and I stay in touch and I am smiling this moment over the profound friendship I found in Christopher's mother.


I visit his grave when I am happy and seek to share that with him. I go there when I am hurt so I can have solitude but not be alone. My husband and I picnic with our young daughters there and they like the bells that softly chime in the fir overhanging his grave site. He is truly my forever friend, and my gift to him is ensuring that despite his life being stifled, his legacy never will be. Now you know Christopher. He was small, mighty, and magnificent. I would be beyond humbled should anyone repost his story as daily I fear that in his 8 short-lived and bittersweet years of childhood, not enough people had the chance to know his name.


This was a gift I could not stop giving to Chris and his family, and with it I achieved the opposite of closure. It burst open a door for me and truly inspired fire in my heart, because it was then that I saw a very clear window into the lives of bereaved parents. One of the things that stood out profoundly to me was need. The need for their children to be acknowledged, celebrated, spoken about. The need to know others remember. The need for a LEGACY.

Sculpting the ever-present bond between parents and children who touch the stars too soon is truly my heart's work and daily I startle at the extreme honor of being so blessed to be able to do this. My goal was to create something for parents to display for others which would then evoke conversation. I really wanted to be able to create some tangible way for parents to show others that it is okay to talk about their children and for my sculptures to be a “starting place”.  In my heart of hearts I pray that people see these pieces and realize that despite the overwhelming pain in losing a child, there is healing for parents to simply know people remember.


http://www.etsy.com/shop/TheMidnightOrange
https://www.facebook.com/pages/The-Midnight-Orange/105314011660

Just one of my personal favorites...

Quicksand

I know I've written a few times in the past about the ways in which our experiences since October have changed us - there are certainly many. The one that has been most on my mind lately is a change with which I cannot seem to make any kind of peace. Fear.

There are a million ways in which this new companion manifests itself. Most prevalent is the overwhelming fear that something is going to happen to the rest of my family - I am positively terrified that something horrible is going to happen to my girls, my husband, my parents, my siblings, my nieces, my nephews and the list goes on and on.  In fact, there have been weekends when Chris was supposed to take the girls out somewhere and I have literally been in tears begging him to just stay home that day because in my mind, I was certain they would never make it home if they left. God love him, he always hugs me and agrees to change plans for that day so they are relatively safe at home while I sleep. I know that it isn't a terribly rational request and I usually feel guilty for it, but at the same time I can literally feel the panic welling up in my chest in those moments and unwillingly begin to envision my life without the three of them.

Just as prominent is the unsettling feeling that we can never again expect to have a healthy "normal" pregnancy.  After the shock of receiving Aaron's diagnosis and the time that I have spent talking with other parents who have survived devastating losses, the odds of anyone ever having a healthy pregnancy seem dire, at best.  Even if we are blessed with another "healthy" pregnancy/baby, there is no doubt that I would spend nearly every moment of that pregnancy waiting for something to go horribly wrong.  At this point, I know too much - the innocence that I used to have about pregnancy is long gone and I am all too aware of the fragility and blessing in creating and sustaining life.

When I'm not in a panic about something happening to a loved one or potential loved one, I am just waiting for some expensive catastrophe with the house or the van or with one of our jobs.  In my mind, the van is a ticking time bomb just waiting for a costly repair bill, every major appliance in the house is just biding time before it quits working and needs replaced, or one of us will unexpectedly be unemployed and our finances will simply crumble.  The fact of the matter is that things do go wrong and we should probably expect them, but it's like I exist in constant waiting for the rug to be pulled out from under us again.

I am well aware that this level of anxiety, fear and apprehension is far from healthy.  It comes as no shock to me that I have trouble sleeping or that I am in an unending state of turmoil.  It is no surprise that this constant conflict is exhausting.  Unfortunately, simply knowing that many of my fears are irrational does nothing to make them any less real.  This is one of the wounds that leaves a deep scar on those whose lives have been changed in less than the blink of eye.  While some may feel it less intensely than others, there is a part of the soul that will never heal completely from that kind of life-shock.  It is actually something that I have heard others in the babyloss community mention frequently and I would suspect that it probably holds true for other sudden, life-altering events as well. 

I think that's one of the reasons that I have had such a hard time facing this particular demon.  It isn't just something that I need to "work through" or "wait out."  I'm afraid this one is going to be a lifelong change - I may get better at coping with it and I will probably learn not to let it dictate so much of our lives, but I will never again feel the blissful ignorance that comes from lack of experience. 

So I have to confess that my original intention was to end this entry above the picture, but as I was searching for a fitting image, I came across this one.  It led me to do a little reflection (which, after all, is one of the points of keeping this space) and here is where I ended up: I can still be depressed about losing our son; I can still be anxious about what may lie ahead...but I need to be more mindful of this: every moment that I spend lost in either of those is a moment where I miss the beauty in front of me.

Reach

When I came here the other day to create a post, I was shocked to see that the total pageviews had exceeded 30,000 and that the views for Aaron's birth story alone were over 1,000.  I never dreamed that so many would read the words that I have written about our sweet son.  This blog was something I started with the primary purpose of helping me begin to heal and my hope was that somewhere along the way it would help someone else too.

There are times when I am simply speechless when I realize just how many have been reached by Aaron's story and his brief life with us.  I know what an impact he has made on us, but to hear others share the ways in which he has touched them is amazing.  I have been contacted by people from all around the world who have read these words or who have seen Aaron's story posted somewhere.  Many have reached out to express condolences, others have sent prayers on our behalf and still others have been in contact to let me know that they, too, are going through a similar experience and have found strength in the words I've written.  That last group, of course, is always the most emotionally charged for me.

In the days and months following Aaron's diagnosis, I spent countless hours searching out and soaking up everything I could read that others had written about their journeys.  Something about hearing the words of others who had traveled a similar path was comforting.  I found many that were inspiring, most were heart-breaking, a number of them offered helpful tips and advice, some were full of bitterness and anger, and others conveyed a message of faith and hope. 

I have never really chosen a specific direction that I wanted for this space, but I knew that I wanted the overall feel to be one of hope and of gratefulness for the time that we were given with our son.  There have absolutely been times when I've written a piece that was angry or painful or sorrow-filled, but my goal, both in life and in my writing, has been to avoid dwelling in the pits for too long.  Most of the time, it's a goal that I achieve...sometimes it's a little tougher than others.

As we approach a time this month when our son would have been five months old, I find that the grief we feel is often just as strong as it was in the very beginning while other times it takes on a more dulled edge. I am so grateful for this space and for those who allow me to continue sharing the story of our little boy on the good days and the bad.