Awareness Month

We wanted to write a post to update everyone on how things are progressing with lil' beastie.  Like so much in our life right now, we can't really talk about the positives with his growth without also talking about more tough stuff.

We knew life without Obie would always be a balance between the life we had imagined for ourselves and the life we have.  We'd never be purely happy again, because there is an Oberon-shaped hole that can never be filled.  We may laugh and smile and feel joy, but there will always be tears in the corner of our eyes or a twinge of pain in the back of our minds.

October is Pregnancy and Infant Loss Awareness Month.  Web sites we follow and communities we are in are extra active right now.  Elizabeth's parents went to the Now I Lay Me Down To Sleep Remembrance Walk in Littleton, CO, Elizabeth and her mom have been participating in the online sharing event Capture Your Grief, and lots of people lit candles for Obie on October 15 as part of the wave of light on Pregnancy and Infant Loss Remembrance Day.  This extra attention and awareness is good, but it is also emotionally draining.

Obie's Grandpa & Grandma at the NILMDTS Remembrance Walk

 

 Candles for Obie as part of the October 15 wave of light

Some of Elizabeth's Capture Your Grief posts.  You can follow her on Instagram @il0veanne

We also got the horrible news that friends and a fellow loss family lost their baby in the second trimester.  We are so sad and have cried many tears for them, but we know too well that our emotions don't even begin to reach the depth of pain this family is going through right now.  One loss is more than any family should have to deal with, and subsequent losses are a different level of cruel.

Yes, it's awareness month, but right now we feel like there might be such a thing as too aware.  We are too aware of pregnancy and infant loss.  It can be too much.  It would be so easy to disengage and just focus on our family, blocking out other tragedies, but that's not good.  Insulating ourselves from hearing about other losses doesn't make this pregnancy more safe, and it doesn't help grieving families.  We know better than most that support can be difficult to find, and we can't stop offering it when the people in our lives are hurting.

We warned you.  Tough stuff.

Lil' beastie continues to have lots of appointments.  He's getting bigger now, and Elizabeth can feel him moving around every day.  Chris feels him from the outside a lot too.  He seems to like being active after meals, at bedtime, and in the middle of the night.  This has been very reassuring for us as we are reminded he's in there, he's real.

We're trying to be good about reading or singing to him every night before bed, and we are getting more consistent.  We still miss a night here and there due to exhaustion (emotional or physical), but we'll keep trying to get better.

Elizabeth still gets weekly progesterone shots, weekly calls with the high-risk for preterm delivery nurse, regular OBGYN visits once every four weeks, and perinatalogist visits also every four weeks.  At the perinatalogist appointments we get an ultrasound and a short meeting with our doctor.  They check lil' beastie's growth and his organs.  So far, everything looks as expected.  At our last check a couple weeks ago, lil' beastie was in the 57% percentile for growth.

October 16, 2015

Physically, this has not been an eventful pregnancy (which we are thankful for).  There have been a couple days where Elizabeth doesn't feel lil' beastie move as much, but we've gone to the hospital to get checked out twice now and everything still looks good.  The most recent trip was in mid-October, where we were reassured that lil' beastie's heart is beating, he's wiggling around in there, and Elizabeth isn't leaking any fluid.

We both got our flu vaccines, and Elizabeth is scheduled to have Tdap a little later, to make sure lil' beastie is as protected as possible.

Because of the risk of preterm delivery, we've had to cut back our activity level substantially.  Elizabeth isn't supposed to be on her feet or active for more than ~30-45 minutes at a time, so no more big hikes.  She's also not supposed to wander too far from the hospital.  We're not going to be flying anymore this year, and if we go anywhere in the next couple months it will be within a reasonable drive of a hospital with a good NICU.

Hiking in Big Sur in September, no more of this for a while!

Even though things are going well with the pregnancy from a medical perspective, we are still dealing with a lot of emotional stuff.  We are starting to try to do the things we should to be ready for a newborn, but it is very hard.  We need to start visiting day care providers, thinking up names, and revisiting things we may need to purchase.  It is not exciting like it was with Oberon, instead it's more scary.  It feels wrong to be thinking about this stuff again.  It brings up a lot of emotions of missing Oberon, guilt about focusing on the lil' beastie, anxiety that we'll prepare and be left with only memories...it is hard.

Where do we go from here?  We try to take it one day at a time.  On days when we feel up to it, we try to plan or take care of the things we should.  On days we don't feel up to it, we just snuggle, or cry, or watch mindless TV to distract ourselves.  We don't have our Type A personalities every day anymore, and for now that's OK.  Maybe forever.  And if it is forever, that's OK too.

Separation of Church and Grief

If you know us, you probably know we're both atheist.  We were both raised in pretty typical North American Christian belief systems (Catholic for Chris and Methodist for Elizabeth), but in adulthood we both stopped believing.  It wasn't because anything traumatic happened to make us "lose our faith," it just happened as a result of questioning the world around us and applying critical thinking to all our beliefs (religious, moral, etc. - no sacred cows).

Being an open atheist in the United States is not nearly as scary as in many other places in the world, but it's also not commonly accepted.  People assume something happened to make us "turn away" or they think we'll "come back" someday.  We didn't and we won't.  We're not mad at the Christian god (or any other gods).  We just don't think they're real.  It's more than a bit patronizing when people refuse to accept this about us.

The impact organized religion has on the world is far-reaching and complex, and this post isn't really meant to get into any of that.  For now, we just want to talk about how atheism impacts our grieving process.

We wouldn't say being atheist makes grieving more or less difficult, but it certainly makes it different.  We'd never judge what bereaved parents (or others) go through with regards to religious beliefs, but these sorts of differences can make connecting hard.  It's so ingrained in our culture to offer prayers and talk of heaven when loved ones pass away.  This brings comfort to many, but not to us.  If anything, it makes us shut down emotionally and we can't connect.

Prayers
Most of the time, offers of prayers come from a place of love.  But to a person who doesn't believe in a god or gods, it can be perceived quite differently.  Some people go so far as to say they pray we'll find god.  That comes across as aggressive and completely unsupportive.  It's better to just say you're thinking of us or of Obie.  People who remember this (especially religious people) truly make us feel loved and supported, because they are taking time to offer us the support we need rather than the support they habitually give.

Heaven, Hell, and Purgatory
We almost titled this section just "Heaven," but to us they are inextricably linked as concepts.  In some ways, I think we have an easier time with grieving because we aren't worried about where Obie's "soul" resides.  No part of us believes he's in purgatory with other unbaptized babies.  Just like no part of us believes any of our departed loved ones are burning in eternal hellfire.  Oberon is simply gone.  At rest.  Neither his soul nor his body exist anymore, similar to before he existed.  The one difference is his impact on our lives continues.  We loved him intensely for his whole life, and we will try to honor his memory for the rest of ours.

On the other hand, religious people can fall back on the idea of reuniting with loved ones when they themselves die.  This is a nice thought, and it's one we don't get to have.  When people talk about imagining their loved ones (and sometimes even Obie) running around playing in heaven, we withdraw.  It's similar to fantasizing about Obie having a life totally out of step with the one he had.  It may be nice to think about, but it isn't real and ultimately doesn't bring us true comfort.

It's Just Us
A lot of grief affirmations have to do with leaning on god or trusting god's plan.  We don't believe there is a plan, other than the one we make.  We didn't do anything to deserve Obie's medical problems, and we weren't meant to learn some cosmic lesson.  We can only move forward from here, knowing what we know and accepting what we don't.  By the same token, we don't have a supernatural being to rely on to make things OK.  We have to make things OK.  By telling our loved ones what we need, by supporting each other, by taking the steps we're ready to take, and by accepting it when we're not ready.  No one is going to save us, and there's no guarantee that what we want to happen will happen in the future.  We have to decide whether to move forward in spite of that.  It's scary, not knowing what will happen, but ultimately we think it's better.  We know there's only so much we can control, but we should do the best we can with what we have.  We won't wait around and hope things will work out, because there's no universal power taking care of us.  It's on us.

More Thoughts On A Grand Plan
With this subsequent pregnancy, things are going well and we are hopeful.  But we don't believe that we "deserve" this baby or that now it's the "right time."  It was the right time for us when Oberon came into our lives.  We didn't lose Obie for a reason, we didn't get pregnant again because it was the "right time", and no matter what happens with this pregnancy - it isn't a "grand plan."  It is what it is, and we'll have to do our best whatever happens.  Families who go through multiple losses do not have bad timing.  Families who go through no losses are not more deserving or more ready.  Sometimes, bad things happen.  Sometimes it's a direct result of action taken or the environment, and sometimes it's random and out of anyone's control.

Since so much of the support for the grieving is tied up with religion, we thought it was important to share a few secular resources we have found.  Online groups are easier to find than real life ones, and that can be both a benefit and a challenge.

• Compassionate Friends - This group has no official religious affiliation.  Of course, it is a meeting of local bereaved parents and siblings, so there are people from all faiths and no faith.  Each chapter will depend on the people in it.
• Grief Beyond Belief - This is a specifically faith-free support group.  They have a public facebook page, and also a private group for the grieving to have a safe space.  This is one of the only places we have found where no one offers default prayers or the common religious-inspired tropes discussed above.
• Baby Loss Support for Agnostic and Atheist Moms - This private facebook group was recommended by members of the Grief Beyond Belief group.  It's definitely got a different tone, as the members often post memes and not everything is grief related.

We hope these resources may help others, like us, who grieve without religion.

McWay Falls in Big Sur, California

The Rainbow Connection

A rainbow baby is a baby born after a miscarriage, stillbirth, or infant loss.  We had never heard the term before Obie.  The first time someone said it to us was when the Now I Lay Me Down To Sleep photographer was at our house.  She said we could reach out to her if we had a rainbow baby, and we had to ask her what she meant.

It's important to remember that in this metaphor, Obie is not the storm.  Losing him was.  Obie brought sunshine into our lives from the very beginning.  He changed the way we see the world.  Losing him cast a gray cloud over everything, and at times it felt like we'd never see the sun again.  It's weird to talk about a storm as a metaphor for losing Oberon, because we both kind of like thunderstorms.  The soothing rain and thunder, the exciting lightning.  We were thrilled that it rained when Obie was home once, so he could hear the rain.  But in this case, a storm isn't something to enjoy.  It's something to weather.

After a storm, we hope for a rainbow.  A rainbow doesn't erase the storm that came before, and certainly doesn't erase the sunshine that came before that.  What it is, is a sign of hope for the future.

A rainbow from our Kaua'i honeymoon in September, 2012.

We know a rainbow baby won't replace Obie, but we also know that we are ready to be parents to a living child.  With that in mind, we want to cautiously announce that we are expecting our rainbow baby.

In Chicago, July, 2015.

It feels like putting some pressure on this baby by calling it our rainbow baby.  But at some point, we need to start being a little bit optimistic.  We aren't necessarily thinking about the future with lil' beastie very much, but we also aren't constantly expecting everything to go wrong.

Pregnancy after a loss is hard.  In addition to the physical symptoms, there are exhausting emotions.  We are trying to find a balance between grieving and remembering Obie, and preparing for the lil' beastie.  No matter when we got pregnant again, we knew we would be missing Obie every day, so it didn't make sense to us to wait any longer than the doctors made us.

We recently got back home from a trip to Michigan.  It was nice to see many of our family and friends that we haven't seen in months (or years).  One of the most important things we did was attend the Giving for Obie event at the Tilted Kilt in Sterling Heights.  Elizabeth's parents worked with the restaurant to set up the event, and a percentage of the bills from our attendees went to Obie's favorite charities.  It felt good to honor Obie in this way and to visit with the people who could make it out.  There were close family members, extended family members, old friends, new friends, and friends of friends.  It's amazing and comforting to have this kind of support for our precious son.  All in all, the event raised over $2,000 including the bill percentage, an extra donation from the Tilted Kilt, extra donations from some attendees, donations from people who couldn't make it, and some matching from Elizabeth's parents.  It makes us proud and happy to be sending this money along to help families like ours.

  Buttons that Elizabeth's mom made for the Giving for Obie event, plus some of Obie's Bees that were given to us.

Another special thing we got to do was take fancy family photos with Obie's aunt.  These are the first pictures of our family of four - Chris, Elizabeth, Obie bear, and lil' beastie.

Our attempt at a family feet picture.

 The four of us, photos by Sandra Joanne Photography.

Sometimes it can be overwhelming to talk directly about Oberon and how we're feeling.  This is especially true when we are with the people in our lives we are closest to.  Oberon should be with us, and with these people, and it hurts so much that he isn't there.  Just because we aren't talking about him, doesn't mean we don't miss him.  It just means we can't take on the direct emotions at that moment, and maybe it means we can't take on someone else's grief right now.  That's one of the reasons the support groups we've been going to have been helpful for us.  Everyone in these groups is grieving a lost child, and that means we understand each other in way other people can't.  It doesn't mean we don't appreciate hearing when our loved ones think of Oberon, or how he has impacted their lives.  It just means maybe it's too much to talk about face to face.

We really do appreciate the support we've been getting from friends and family through this grieving process.  There are some really bad days and some better days.  Every day we miss Obie.  Every time someone brings up Obie to us it brings us a little comfort, even if it brings tears too.  He is our son and we love him all the time.


Some more information about this pregnancy for those who want to know:

When did you find out about lil' beastie?
May 16th, 2015.  Although we didn't know it at the time, Elizabeth has been pregnant for the last two Mother's Days.  We knew it both times for Father's Day.

Hiking Mission Peak in Milpitas, CA.

When is the due date?
January 18th, 2016.  Elizabeth is 21 weeks along.


What are the doctors doing differently this time?
Not a lot.  They don't really know what caused Obie's brain development issues, so it's a lot of watchful waiting.  They are checking lil' beastie's brain carefully at every ultrasound visit.  We visit the perinatologist (high risk doc) at least every four weeks.  Just like we did with Obie.  We have the same doctors this time around, and they are all very willing to see us for extra visits whenever we need some reassurance.

Because Obie was born preterm, Elizabeth is getting weekly progesterone injections.  Chris even had to give her one when they were in Michigan (he did great),


What tests has lil' beastie had so far?

• We've finished the California Prenatal Screening Program, and lil' beastie's results are all screen negative.  That means the risk of conditions like open neural tube defects, Down Syndrome, trisomy 18, and Smith-Lemli-Opitz Syndrome are low enough that no additional diagnostic tests are indicated.  This is the same result that Obie had.
• A few weeks ago we had the second trimester anatomy scan.  This is where they found Obie's omphalocele.  They didn't find any abnormalities when scanning lil' beastie.  They looked closely at the brain, heart, and tummy.  Even so, the ultrasound technician and our perinatologist will keep close watch at future visits.  
• We had an amniocentesis at the same appointment as the second trimester anatomy scan.  The results also came back with no abnormalities.  Lil' beastie has the usual number of chromosomes (none extra, none missing).  This confirms no Down Syndrome, trisomy 18, or trisomy 13.  This does not rule out other genetic conditions caused by mutations.  This is the same result we got with Oberon.  In fact, the follow up testing done on Oberon's blood didn't find any genetic cause for his Beckwith-Wiedemann Syndrome.
• One test we declined was the fetal MRI.  This test can show a clearer picture of the baby's brain.  After discussing it with our perinatologist, we decided against getting this test for now.  Ordinarily, an abnormality would need to be found on an ultrasound (or an inconclusive finding) to trigger a fetal MRI.  The only reason we were talking about it at all was because of Oberon's brain development issues.  It's possible that his issues developed later in the pregnancy, so we are going to monitor it closely on ultrasound, and only if we get some indication that something is abnormal will we consider a more intense diagnostic test like a fetal MRI.    
• There aren't any more big tests on the horizon (except the gestational diabetes test for Elizabeth), just checking in on lil' beastie at least every month.

What kind of symptoms is Elizabeth having?

Just normal pregnancy stuff.  She has some digestive issues, sleep disruption, and exhaustion, but nothing too bad.  She's not having as much low back pain as she had with Oberon.  We are still able to hike, but we have to take it a little easier and make sure we have some shade.

She's also not feeling a lot of movement yet.  She has an anterior placenta which makes it a little harder to feel, but the flutters have started.  Hopefully Chris can feel lil' beastie soon!

Do you know the sex? 
Yes, and now so do you.

It's another boy!

Obie has his bees, does lil' beastie have something like that?
Yes, he has his dragonflies.

One of lil' beastie's dragonflies.  Sandra Joanne Photography.

How can I stay up to date on the lil' beastie?
You can follow Our Little Beastie Blog by entering your e-mail address on the upper right of this page.  We'll start posting a little more often about both Oberon and lil' beastie.

Elizabeth also has a weekly Bump Day Blog over at Pregnancy After Loss Support.  These posts are generally about the emotional journey of being pregnant after a loss.

Ashes

What do you do with your son's ashes?  This is a terrifying question, and we didn't have an answer for some time.  We knew that we wanted to have Oberon's body cremated, but keeping the ashes in an urn in our home seemed terrible.  Interring them at a cemetery also felt wrong.  Spreading the ashes seemed like the best thing for us, but where and how took some time to determine.

California has some oddly restrictive laws about spreading remains, so the easiest thing to do is pay for a company to spread the ashes either at sea or by plane.  The funeral home offered information on some of these services.  We have no particular attachment to the ocean, so that didn't make sense to us.  We did briefly considered a service that would spread the ashes from a plane over somewhere like Monterrey Bay or Lake Tahoe.  We probably gave the most thought to Lake Tahoe, since Obie had been there while Elizabeth was pregnant, but the connection seemed like a stretch, and ultimately didn't seem right either.  Eventually, we decided that we wanted to scatter the ashes ourselves somewhere in nature.

We found out that it is legal to scatter ashes on public lands in CA, as long as you get the right permission.  Most national parks and forests allow this, hiking in Yosemite or in the Tahoe National Forest wasn't a realistic option in January, so finding somewhere that we could visit in any season became important to us.  Although we had never really looked into it before, there is a bounty of public parks and open space preserves right in the Bay area.  With a little looking, Chris found Uvas Canyon County Park in the Santa Cruz mountains just a little south of San Jose.

View from Uvas Canyon County Park.

The park has a number of spring fed waterfalls which flow year round (even with the drought).  There is also a waterfall loop which goes to many of the park's waterfalls, and is considered by many to be the best waterfall hike for families in the Bay Area.  The trail has a bit of a grade to it, but nothing too strenuous.  We remember seeing people, and families, along the trails, but at no time did we feel crowded, which was important for us.  We arbitrarily decided on Superbowl Sunday, but also hoped the timing would keep some crowds away while we hiked.  Chris obtaining the permit from Santa Clara County, and we set out.  The drive to the park goes south out of San Jose, then winds up into the eastern slope of Santa Cruz Mountains.  The road leading to the park goes through Sveadal, a small private Swedish American community directly outside the park's entrance.

There isn't really anything that can prepare you for going on a hike to spread your son's ashes in nature.  We didn't have a specific ceremony or remembrance in mind.  We didn't have a plan, but really, how could we?  Without anything specific in mind, we just started hiking up the waterfall loop carrying our good camera, a set of our favorite wallet-sized Obie pictures, and his ashes to scatter.

The first of many trails we took.

The loop has a steady grade up to first of the waterfalls, Black Rock Falls.  At this point, we decided that we wanted to spread Obie's ashes throughout the park as we hiked the trails.  Taking turns along the way, we scattered a little bit whenever the surroundings spoke to us.  We decided to take pictures of the area with the pictures of Obie in the foreground and the park in the background.  We continued past the waterfall loop and hiked to the top of Knobcone Point.  We then hiked to Basin Falls and Upper Falls before deciding to continue on the Contour Trail which tracks back along the canyon wall.

Obie's pictures in Uvas Canyon.

We found numerous spots along the trail that spoke to us, but one of the most striking as a grove of white trees the stretched over the trail like a tunnel to walk through.

White tree tunnel (the camera is not tilted).

Not being ready to leave, we kept hiking into Alec Canyon past Manzanita Point.  Eventually, we hiked to the Old Logging Camp where we walked under a giant yellow-flowering tree, and finally to Triple Falls.  All along, we took pictures of Obie's pictures anywhere that seemed right.  I don't think anyone really noticed what we were doing, but we didn't really care if they had.  There were lots of tears, lots of embracing each other, and lots of remembering how much we missed our little Obie.  The entire experience was, and still seems, completely surreal.

Manzanita Point.

Before this post, we had not shared any of the details of the hike we took to scatter Obie's ashes.  We also haven't been back to Uvas Canyon since the hike.  This isn't because we don't want to share, but mostly because we haven't been ready to talk about it before now.  We picked Uvas Canyon because it is somewhere we can go back to visit any time of year and also somewhere we can take friends and family in the future.  We will go back, but not yet, we aren't ready.

Yellow flower.

If you follow us on social media, it has to be pretty hard not to notice that we have taken to hiking this year.  We have made a point of trying to hike every weekend that we are able.  There isn't a specific link back to Obie, but the first hike we took was in Uvas Canyon for Obie.  Since then, we have taken to it as a way to be good to our bodies and our minds.  We didn't know it at the time, but the hiking trips constantly bring us around more of Obie's yellow flowers and more of Obie's bees than we would ever get to see otherwise.  

 

Choices

We started writing this post when Elizabeth was pregnant with Obie.  While it didn't end up being something we had time to finish and publish during the pregnancy, we still think it's important to share.

While we waited for beastie's prognosis information, a lot of scenarios ran through our heads.  What if the little guy had a condition with a life expectancy of less than a month, and that life would be filled with surgeries, oxygen tubes, poking and prodding?  What if he had a condition with a longer life expectancy, but no possibility of ever being able to take care of himself?  What if no matter what the life expectancy was in length, it was guaranteed to be filled with physical suffering?

After the amnio and array testing results, we didn't think the prognosis was so serious, but for a few weeks in the second trimester it all felt possible.

If the diagnosis was something more serious at that point, we can't tell you what we would have done.  No one can make that decision until it's placed in front of them.  So why are we bothering to bring it up?  Because everyone should have the choice.

Elizabeth is lucky that she lives in California, where there are not unconstitutional bans on abortion.  If she lived in Alabama, Arkansas, Indiana, Kansas, Louisiana, Nebraska, North Carolina, North Dakota, Oklahoma, or Texas, there would have been no options.  Access to abortions in these states is severely limited at or around 20 weeks, which is right about where we were when they found beastie's omphalocele.  As we waited for more information on beastie's condition, even more states would have imposed additional restrictions.

It was bad enough waiting for the results of beastie's early tests.  The sympathy for women who live in states with limited or no options was overwhelming.  Every woman and every family needs to make their own decisions, and it is not the place of lawmakers to insert themselves into that conversation.  The thought of being forced to continue a pregnancy that was guaranteed to result in suffering for the fetus and the family is horrifying to Elizabeth.  She couldn't imagine bringing a baby into the world simply to suffer, and emotionally the depression of having to take a pregnancy to term with such a cloud of sadness was impossible to imagine.  

Some people will take every pregnancy to its natural course, regardless of medical information.  That's their choice.  Others find it more compassionate for the fetus and the family to end a pregnancy with found medical issues (this is called "Termination for Medical Reasons" or TFMR).  Still others have more reasons why bringing a baby into the world is not a good choice for them at that time.  It isn't our place to judge or to dictate.  It's our place to be compassionate and supportive of the women in our lives and the choices they make.

Upon reflection, if we knew the severity of Obie's problems in the second trimester, we can't say what we would have done.  We would have definitely considered TFMR, and that would have been a very sad and horrible thing to go through.  In addition to losing our beloved son, we would have likely also dealt with judgment and scrutiny from family, friends, and acquaintances.  This would clearly not have been a helpful response.  There should not be shame in terminating a pregnancy.  The choice is ultimately up to the woman whose body sustains the fetus.  Is her body ready for this pregnancy?  Is she ready to raise a living child or bring a pregnancy to term to give up the child for adoption?  Is the fetus ready for a life outside the womb?  These are all questions she can consider, and if the answer to any one of them is "no," she must do what she thinks is best.  

Finding Compassion

We knew we were in for a crappy time when we found out the extent of Obie's problems.  As we've mentioned before, when he was still alive we were mostly able to compartmentalize that and focus on our wonderful son.  After Obie passed away, we started thinking about the things the social worker and other bereaved parents had recommended that we try.  Things like therapy.

We tried couple's therapy for five or six visits.  It wasn't for us.  Not sure if it was the therapist or us, but it didn't really help.  It didn't really hurt either.  We can see how it could be helpful, depending on how you process things, and we wouldn't want to dissuade anyone from giving it a try.

Like so much else, it takes experience to truly understand this whole bereaved parent thing.  We don't expect people who haven't lost children to get it.  There's no way they could.  That's probably the main reason that a support group has helped us.  We've been attending our local chapter of Compassionate Friends since March.  Some people have been there every time, some haven't.  Some come as a couple, some by themselves.  Some are new (like us), some have lived with the loss much longer.  Some people lost young children, but most it seems lost adults.

It's scary to hear these loss stories.  It makes everything horribly real.  The first meeting was overwhelming as we heard each story for the first time.  Now we're hearing stories for the second, third, or fourth time, and while still terrible, it is less shocking.

Even if we someday have a child that doesn't have extreme health issues, that's no guarantee that we'll outlive him or her.  It's sobering.  Things we never thought about have happened to people in our community - undiagnosed congenital defects, accidental overdoses, car accidents, medical mistakes, cancers, homicides... all these things happen.  They always happened in general, on the nightly news or on the internet.  Now they've happened to people we know.  This is not a community anyone wants to join, but it's not one you can ever really leave.

Elizabeth cries at every meeting.  But in this place, no one tries to get her to stop.  This community truly understands that stifling grief helps no one.  Not everyone cries the whole meeting, but Elizabeth isn't the only one who does.

Some very strange emotions have come up during and after these meetings.  Every loss is different, and we can't truly understand what other parents are dealing with.  Even so, we have involuntary reactions and we'll often discuss some of that on the way home.  One of the strangest things we realized is we're a little bit jealous of some of these people.  It's crazy!  We're jealous that they got to raise their children into adults, or jealous that they have other living children, and sometimes just jealous that there wasn't something wrong for their child's whole life.  We know it's ludicrous to truly believe that our grief is somehow bigger or worse, but we also realize how much we would cherish those days, months, years of parenting.  Those memories.

Only a year ago, we would have responded very differently.  These stories would have brought out feelings of pity, fear, hopefully some empathy, but mostly something else.  We're not exactly sure how to put it, it's that feeling of insulation from the horrors of the world.  That reliance that those horrible things could never happen to you or your loved ones.  It would always be a comfortable distance away.

How things have changed.  How we have changed.

Original artwork by CarlyMarie.

The Thing About Strength

When something tragic happens, many people hide behind cliches.  They don't know what to say and they don't know how to feel, so they reach for groups of words they've heard before and seem meaningful.  While we know that these sentiments come from love and an effort to be supportive, they do not always come across that way.  Some of these cliches can be viewed very differently by someone who is grieving.  This post talks about one concept that comes up a lot - strength.  Please keep in mind it is how we feel.  It is honest and raw, but that is where we are at right now.  We are eternally thankful for all of the love and support we have received, but sometimes good intentions miss the mark.

"You're so strong."

"What doesn't kill you makes you stronger."
"You never know how strong you are until you have to be."
"I could never be that strong."

This lionizing of people who have experienced tragedy can be problematic for many reasons.  It is so automatic to call the bereaved "strong" that it really doesn't mean anything.  Let's break down the strong cliches one at a time.

"You're so strong."

Oh yeah?  Assuming this is meant as a compliment, what exactly is being said here?  There are many times where this is appropriate and meaningful, but that only happens when someone does something to show will and determination by choice, not as a consequence of circumstance.  What happens when we feel weak?  When we don't get out of bed or don't make good decisions?  Are we not strong anymore?  This creates a dichotomy between those who handle tragedy with strength, and those who don't.  Even though it is arguably positive, it is a judgment on someone who does not need to be judged.

"What doesn't kill you makes you stronger."

This one has several forms, including "you'll be stronger because of this."  Pretty much the only context where these tropes work is motivating people through ordeals of their own choosing.  Athletic training or striving for academic excellence are times where setbacks must be weathered and will ultimately be useful in getting to the end goal.  With illness and death of loved ones, this cliche is often not true.  What doesn't kill us can leave us shells of our former selves, and we may never recover.  We very easily can become bitter, angry, and isolated.  We can lose all motivation for things that used to make us and others happy.  What doesn't kill us makes us different.  It changes our perspective, but it doesn't automatically result in a better or stronger person (whatever that means).  There is no guarantee that we'll be stronger because our child died than we would be if our son had lived and put us through the daily rigors of parenting a living child.

"You never know how strong you are until you have to be."

It sounds like some sort of call to arms that you now have this opportunity to demonstrate the universal strength you've been hiding all these years.  We do not have secret strength reserves to call on.  There isn't a secret club that doles out extra strength when bad things happen.  Sometimes we carry some strength, and sometimes we don't.  Sometimes we can be positive human beings, and sometimes we can't.  This cliche makes it sound like some kind of gift to unlock your inner strength.  Let us tell you right now that even if all the strength cliches were true and we were now some sort of amped up super-humans, we would trade it in a heartbeat to have a healthy, living baby boy back in our arms.

"I could never be that strong."

Right, because we have those super-secret reserves of strength.  What this sounds like (and probably is) is you're glad this didn't happen to you.  You are such a delicate flower that you couldn't handle it, or worse, maybe because you think you love your children more than we do.  And what, exactly?  What are the other options you think we have?  Check out early?  Believe us, every bereaved parent thinks about this.  The reality is, we will probably continue living for a while, and you probably would too.  Life would always be different, and you may struggle for days, months, or years to find true joy again.  You would probably react differently than we have, only because everyone reacts differently.  You might be what others consider strong, you might not.  We truly hope you never have to find out.

We hope this helps show some perspective on a common trope that shows up during grief.  Instead of making value judgments on people during this fragile, horrifying, difficult time, offer them support.  Offer them unconditional love.  Something as simple as "I'm sorry" or "I'm here for you" is infinitely better than assigning strength to someone who may or may not really feel that way.

We're already under enough pressure from the usual motivational fluff floating around the world these days.  "Make every day count."  "Happiness is a choice."  We fully accept that these are helpful for other people, and might someday be helpful for us.  Right now?  It's a success to get through the day.  To get through part of the day.  Please don't hold us to these ideals you have in your head about how grief-stricken parents should react.  If we have a good day or a good moment, don't assume this is the norm (it isn't).  If something we do strikes a chord with you, it's nice to let us know.  Just please be cautious to reflect on what actually happened, and try not to pressure us to be strong all the time.

It's much easier to count the times we haven't been strong.  The times we aren't truly happy for people announcing pregnancies or healthy living babies.  When we don't have empathy for those going through something objectively tough even if it's not life and death.  The days we don't have the energy to respond to family or friends.  The moments we are bitter thinking about people we thought would reach out to us, but haven't.  When we expect a lot of others, but don't have the capacity to give of ourselves.  The times we pretend to listen to people talk and count the seconds until it's socially acceptable to end the interaction.  The many days we don't want to have to pretend to live up to outside expectations (on top of everything else).

We were able to be strong for Obie when was here.  It's a comfort to us that we are confident we made the right decisions for him and his care.  But he's not here anymore, and we don't have someone to be strong for.  We have each other, and we are supporting each other.  That's all we've got right now.

By each other's side.  All the time.