It’s About Compassion

There’s a lot of chatter about Planned Parenthood right now as another government shutdown looms.  And while the government funding doesn’t even pay for the abortions Planned Parenthood does perform, I can’t help but be drawn to the fight, as I am staunchly pro-choice in the first place despite never having had an abortion.  This is likely due to the unique perspective I see cropping up from moms like me, who’ve had wanted pregnancies end badly.  Since our voices are drowned out by the commotion, some of which is being created by people who don’t even know yet that they could be one of us one day, I’m here to share some thoughts.

I often hear people say things like, “I’m only pro-choice in the case of rape or incest, and I definitely don’t support it ever after ~12 weeks.  What kind of monster has an abortion at 20+ weeks?”  And while it’s not my personal stance, it seemed reasonable enough to me until I experienced what it’s like to carry a child long enough for him to die.

You see, the rhetoric currently being used as a fundamental platform for the conservative presidential race tries to convince us that women wake up one day at 30 weeks and just decide they don’t want to have that baby anymore.  They’d have us believe this happens often (it actually only accounts for 1% of abortions), that it’s a method used as freely as oral contraception, that it’s a flippant choice made on a whim, and that the solution is for women to just “keep their legs closed” if they don’t want a baby.

But I wanted a baby.  I wanted Benjamin.  I still want him, four years after his death.

The women who have late-term abortions are not the monsters you’ve been led to believe.  They are women who found out they have cancer halfway through their pregnancies, and if they don’t have treatments that will undoubtedly result in birth defects and possibly death to the fetus, the mother will die.  And in case it isn’t enough that the woman dies, the fetus dies too.

The mothers who have late-term abortions are women who didn’t even know they had a life-threatening condition that worsened with pregnancy until they were halfway through that pregnancy.  These conditions threaten the functionality of a person’s heart, liver, or kidneys, and friends…we need all of those to function normally.  Sometimes a pregnancy is too much on a person’s system to continue.

Then there’s the possibility of conditions that develop during pregnancy.  “But Eva, I had pre-eclampsia and my baby was premature, but survived.”  While this may be true for you, that has to do with a variety of factors that worked out in a specific way.  Not everyone’s experience is the same, and the assumption that modern medicine is foolproof is a foolish way to gamble someone else’s life.

And the final scenario (although my list here is by no means exhaustive–the rest fall under “none of your business”), our story.

We didn’t know anything was wrong at all until 33 weeks, and we didn’t know how bad it was until 37 weeks. We chose to let him come when he was ready, but that was OUR DECISION.  We also found out how bad things were when he was full term.  We were already at the finish line.

Those 10 days between learning how bad it was and his birth might as well have been years of torture. I can’t begin to describe the pain we woke up to each morning while we waited. It felt like my heart was on fire, burning me up from the inside out, but instead of consuming me, it just burned and burned and burned.  I couldn’t stop my mind from wandering and wondering how exactly it would all go.  Will he be alive when he comes out?  Will he open his eyes?  Will he be able to cry?  Will he look at me?  Will he know he is loved?  Will he wonder why he’s suffocating to death and no one is helping him?  That last question I asked myself over and over again still haunts me.

The parents who find out at 20 weeks?  They have to endure around 130 MORE days of that.  They can’t hide their pregnant bellies in a hotel room like I did.  Weeks of people asking when you’re due.  Is it a boy or a girl?  Strangers asking if you’re excited, or ready for the sleepless nights ahead, not even knowing what kind of “sleepless nights” are in store for you.  Wishing it would all be over immediately, then feeling bottomless guilt because it being over means your baby dying.

No, there are no good days.  Each day is a horrible nightmare from which you cannot wake up.  And then, with what’s left of you after months of waiting, you’re expected to grieve neatly inside the lines, which I can only imagine is much harder to do when you’ve been crawling to the finish line for four months.

I’m glad we didn’t terminate, although our options at that point in the pregnancy would have been quite limited anyway.  Instead, we waited until he was born to let him go.  We opted for comfort care, which meant no medical intervention except to relieve pain.   I wouldn’t go back and change the way we did things, even if I sometimes wish we could have found a way to save him.  For us, letting him go was about compassion.  For him, for ourselves.  He never would have left the hospital, and his hernia was so bad that he would have required ECMO, so he would have been heavily sedated at all times.  And while they might have been able to fix his hernia, they can’t fix chromosomes, and the health issues associated with his translocation were horrifying.  I know, because I spent entirely too much time those last 10 days making sure we were making the compassionate decision by researching and discussing with the doctors.

“But Eva, I know/have a child with unbalanced chromosomes, and his quality of life is so much more than you describe.”  Once again, I’m so happy it worked that way for you and your family, but the size and structure of Benjamin’s translocation was extreme.  It shocked our genetic counselor and the doctors at CHOP, whose jobs revolved around these disorders and their prognoses.  Ben’s case was not minor.

Our two living children were highly monitored and tested early to ensure we wouldn’t face something like that again.  But without the history we have, our doctors wouldn’t have known what to look for to rule out recurrence.  There would have been no need to check their chromosomes at 12 weeks or pay extra attention to make sure their organs were placed correctly.  That was how Ben slipped through–that was why we didn’t know until it was much too late.

When you seek to ban late-term abortions based on edited footage and fake stories, you are hurting families already in turmoil.  You are looking at mothers, like me, and saying we shouldn’t have an alternative to watching our children suffocate in our arms.  I already had to choose between letting him die at birth and letting him die in the NICU–there was no choice that resulted in more than that.  When a mother terminates for medical reasons, it doesn’t matter how many weeks along she is:  it’s about compassion.  Have some compassion for the compassionate mother.

One final note, before I finish.  I won’t be defending this stance.  I am happy to clarify details, but to engage in defense of the right to terminate would indicate that the opposing side has a lick of merit, and it doesn’t.  If your religious beliefs lead you to believe that abortion is wrong, that’s cool.  Don’t have one.  But until whatever deity you believe in stops causing spontaneous miscarriages and creating children for the sole purpose of letting them die while leaving heartbroken families behind, your beliefs have no place here.

BenMRI1

Advertisements

My Center

There are a few songs by Sara Bareilles that really speak to me in a sentimental way. “Send Me the Moon” is of course about Benjamin; every line describes those last days until the moment he passed with more clarity than I could hope to convey. Sometimes when it comes around on my playlist, it makes me smile. Sometimes it makes me cry. Sometimes I just skip past it.

The Light is another song of hers that has felt connected to Benjamin for me, but I couldn’t put my finger on it until just the other day. The lyrics didn’t fit from me to Benjamin, but I realized they do apply to Eddie.

The day we found out about the hernia, we were glued together under the covers for hours. Panicking. What was the right thing to do? How do we find the best care for him? Everything changed that day, and we didn’t even know how completely it had just yet. It was only the beginning.

Together, we switched into survivor mode. Calls were made, plans were finalized, our employers worked things out for us. We packed up and headed to Philadelphia, unsure of when we’d return and whether it would be two or three of us when we did.

Eddie was there for every appointment and test, just as he had been whenever humanly possible throughout the pregnancy when everything was good. He asked questions, held my hand, made sure I was always comfortable.

When Dr. Khalek delivered us the news of Ben’s translocation, she left us to process it alone. The room started spinning, and I swear I would have fallen off the bed if not for Eddie firmly holding me in place. He held me, and I held him, and together, we were once again glued together, watching our world change once again.

I remember standing in the packed elevator of the hospital on our way to the car so we could leave and wait for Ben to come. We had gotten separated by families as we stopped at each floor. Eddie was wearing his infamous “Go Ahead, Poke Me” shirt when a man, holding his child, took him up on his shirt’s offer and poked him. This happens pretty often when he wears this shirt, and while it’s usually a good icebreaker, it obviously was not a good time. I watched Eddie turn his head and give the man and his baby a half, brokenhearted smile, then look straight ahead at the elevator door again.

A couple days later, we were driving to the hotel. Eddie was singing along to “Then” by Brad Paisley, as usual.

Now you’re my whole life
Now you’re my whole world
I just can’t believe
The way I feel about you, girl
Like a river meets the sea
Stronger than it’s ever been
We’ve come so far since that day
And I thought I loved you then

He started singing the next line, “I can just see you with a baby on the way,” when he realized what he was singing and quickly turned off the radio. Not for himself, but to protect me.

He packed up and moved us from hotel to hotel as we moved around while in Philadelphia, carrying bags and pillows and nonsense up and down elevators and garages and parking lots as the final days of pregnancy pulled my hips apart. He held me every morning and each night, worked out of the hotel rooms and dropped everything when the weight of what was happening crushed me. We snuggled and floated in the pool at night, and we kissed more deeply than ever–strong, passionate, tender, caring kisses. I love you. We can do this. We are strong enough.

When my water broke, I was in a fog. He maintained direction. He packed up our things, strewn about the entire hotel room, after setting me up in the car on a pillow.

He held my hand while I pushed. Stroked my hair and face. He encouraged me as if everything about the delivery was normal–good job, you’re doing great, you’ve got this. Gave me strength when I struggled through those final pushes, knowing that doing so would start the clock on the end of Benjamin’s life.

He spoke to Benjamin, held his tiny little hand, tickled his foot. Hearing him seeking a reaction from his son is one of the hardest things about watching the footage we have of Ben alive.

Burned into my memory is the shade of blue his eyes were, full of tears, looking back at me, holding our son after he’d passed, before making his way to the waiting room to tell our family. So much was said without words, and despite the sadness of what happened, it was beautiful. There was a vulnerability in that moment that connected us on a deeper level than ever before.

Together, we mourned.

We had both been changed in an instant, and we got to work on getting to know each other all over again. We kissed for hours every night, because it seemed like the only thing we could do to try and heal each other’s hearts.

We once again packed and moved back across the country to Phoenix–Eddie doing almost everything as I was only a couple weeks postpartum. And he never complained. He just did it.

The results from our karyotypes came in while we were driving through Texas. It was me. My chromosomes had done this to us, to Benjamin. Guilt squeezed at my heart, even though it wasn’t my fault. I still felt like if Eddie hadn’t met me, he would have never had to go through what we’d just gone through. I still obviously wish he hadn’t, but it’s almost overwhelming when I think about how lucky I was to have him by my side with me throughout it all.

The loss of a child can easily tear people apart. In our case, not only did we stay together–we became stronger. We became better to each other and for each other. And then we became parents to Paisley, then Oliver. His strength and resolve as a father and husband has only magnified since losing Benjamin, and Paisley and Oliver have the kind of father that we created the day Ben was born.

Eddie was my rock throughout it all. Still is on the bad days. I can only hope I afforded him the same level of strength and support. Looking back, I don’t feel like I gave him the credit he deserved throughout this blog. So I wanted to fix that.

Tomorrow is his birthday. I’m so happy he was born so we could make this life together. Thank you for being my center, darling hubby. Happy Birthday.

Screen Shot 2015-01-04 at 8.51.54 PM

You can check out pics of the kids via Instagram.

“The Light”

In the morning it comes, heaven sent a hurricane
Not a trace of the sun, but I don’t even run from rain
Beating out of my chest, my heart is holding on to you
From the moment I knew
From the moment I knew

You’re the air in my breath, filling up my love-soaked lungs
Such a beautiful mess, intertwined and overrun
Nothing better than this, oh, and then the storm can come
You feel just like the sun
Just like the sun

And if you say we’ll be all right
I’m gonna trust you, babe
I’m gonna look in your eyes
And if you say we’ll be all right
I’ll follow you into the light

Never mind what I knew, nothing seems to matter now
Ooh, who I was without you, I can do without
No one knows where it ends, how it may come tumbling down
But I’m here with you now
I’m with you now

And if you say we’ll be all right
I’m gonna trust you, babe
I’m gonna look in your eyes
And if you say we’ll be all right
I’ll follow you into the light

Let the world come rush in
Come down hard, come crushing
All I need is right here beside me
I’m not enough, I swear it
But take my love and and wear it over your shoulders

And if you say we’ll be all right
I’m gonna trust you, babe
I’m gonna look in your eyes
And if you say we’ll be all right
I’ll follow you into the light

Letting it Hurt

When I was early in pregnancy with Paisley, a nurse at the doctor’s office was reviewing my history. We went over the number of pregnancies and living children, which is always kind of a tricky conversation. The information the nurse needed was whether or not I’ve had any full-term deliveries–and I had–but I didn’t have any living children. I explained our situation to her. She said, “Oh, I’m so sorry.” I immediately responded with, “It’s okay.”

“No, it’s not, honey,” she said.

I realized I’d been saying it was okay a lot at the time, as if I was trying to comfort everyone else around me. The thought of a baby dying is an uncomfortable thought no matter the circumstances, and I made it my burden to comfort others faced with thoughts of Benjamin’s death. To protect them–even perfect strangers. Even the barista at the coffee stand when I returned to work with my empty belly.
“How’s the baby?”
“He didn’t make it.”
“Oh no. Oh, I’m so sorry.”

“It’s okay.”

I still do it. It’s an automatic reaction: It’s okay. I’m okay. It had to happen, we couldn’t have stopped it, we can’t undo it. I have a good handle on it. We’re in a good place about it.

Eventually it becomes more about comforting my own heart. It’s okay because these two amazing children wouldn’t be here if he hadn’t died. I’m okay because we have an awesome support system of amazing people who saw us through it–and we do.

But each September, I try to make a conscious effort to let it hurt. I don’t hold back. I talk about him almost too much and whisper his name more often when I’m alone. I relive those weeks between his diagnosis and birth. How scared we were, for him and ourselves. Scared for the future. Scared of learning that this was a genetic abnormality that could happen again (which turned out to be the case). Scared that we would never have another child (thankfully not the case). SO scared that we would never feel happiness without guilt again (also not the case). I have never felt an emotion more visceral and consuming than the loss of his brand new life, and the weight of that emotion has a permanent home in my heart.

Whenever I speak with other loss moms, or any grieving person really, my first piece of advice is to let it hurt. You cannot properly grieve without giving way to the pain, not only at first, but throughout the process. It not only strengthens you–it also puts the rest of your life in perspective.

September belongs to Benjamin. It always will. Thank you for missing him with me–always, but especially in September.

Happy third birthday to the little boy who changed everything.

Screen Shot 2014-09-15 at 4.37.15 PM

Poppy

The man with whom Benjamin shared a middle name passed away on April 30, 2014.  He was my grandfather, and as such, the great-grandfather of my children.  He was 84 years old.

We knew his health was declining.  He wasted away pretty rapidly.  One week he was still walking me to my car and waving as I drove away. (I always tried to commit those moments to memory, because eventually it would be the last time he would be able to–I just wouldn’t know it at the time.)  The next week, he couldn’t get up from his chair.  I’d hug him, startled by the prominent outline of his shoulder blades.  The strongest man in my life was disappearing before my eyes.

He knew his health was declining too.  He was impressively aware of this given his Alzheimer’s status.  A few months prior, several family members were in town at once.  The kitchen was full of all of us getting dinner on the table, my uncle offering to help Poppy to the table.  He declined, saying he just wanted to watch us.  He wanted to watch this family he’d created 

Poppy treasured getting to know Paisley, and she immediately knew he loved her.  When he was no longer able to get out of bed, Paisley would go and find him when we’d visit.  She wanted to see Poppy.

In his final weeks, it was inspirational to see how at peace he was with his life, despite the pain he was in at the time.  He gave his all every single day of his life to those he loved.  He spoke often about how much happiness being able to see new life–Paisley and Oliver–as his was coming to an end.  He and I got to talk alone for a bit one of those days, and he said to me–I’ll never forget:  “Those beautiful children–they are all that matters in this life.  Nothing else adds up to anything at all in the end.  You were the light of my life, dear.  It has been my honor to watch you grow into the beautiful woman and wonderful mother you are today.”  

When my grandmother called with the news, I sat on the floor and cried.  I cried for her, the woman losing the love of her life a year (almost to the day!) after losing her sister to breast cancer.  I cried for my children–neither of whom will remember knowing him.  I cried for my husband and myself, as we had lost one of the most supportive and uplifting people in our lives, someone who was always there to cheer us on.  It was a privilege to have him on my team in life.  But I didn’t cry for him, because he did what he came here to do.  He spent 84 years living and loving.  He isn’t gone, and he never will be.  I am who I am because of him, he had a massive influence on my husband in the 10 years he knew him, and so my children will be raised by two people who will carry on his way.  

I don’t know where we go after this–whether it’s somewhere, everywhere, or no where.  But I do know that in his final weeks, Poppy made sure to convey that it was all about the love you leave behind.  I also know that wherever we go after this, he’s with my baby boy.

Image

He’s Here!

This post is about eight weeks late, but we’ve been busy settling into our family of four.  

Oliver made his debut on April 6th at 12:00:00 AM exactly.  Healthy, handsome (born with his grandfather’s studly cleft chin and his daddy’s dimples), and hefty at 9 pounds 3 ounces and 21 inches long.  

He is so very sweet.  Rolled over at two days, started socially smiling at just four weeks, giggled today, and has slept through the night since day two!  Paisley loves–LOVES–being a big sister.  She pats his head, rubs his hair, gives him kisses, tickles his toes, tries to take him from us like she’s an adult who just wants to hold him for a few minutes.  When he fusses, she takes his hand and says, “Iss okay, iss okay.”  I was so nervous in the weeks leading up to his arrival that she would not take the change in household dynamic well, but she has blown us away with her kind and gentle way with him.  Not an ounce of jealousy as of yet.  

Here are some of our favorite photos of both of them lately.  You’ll notice they’re a little light with Paisley; she’s a busy kid, and she doesn’t ham it up like she used to.  😉  She is ALWAYS doing stuff.

I have a few posts planned, so check back soon!  I just wanted to get this uploaded for those not on Facebook since traffic has spiked since his due date.  

ImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImageImage

There Will Be Bad Days

Important to watch.  Transcript below, but the video is soothing and the author’s voice hypnotic.  Watching the video also forces you to slow down and absorb every word from this incredible message.

I’m currently coming out of a bad day that managed to stretch itself over the course of a few months.  I’ve lost count of how many times I’ve closed my eyes and listened to this poem.  It helps a little more every time.

http://www.youtube.com/watch?v=V7OGY1Jxp3o

Instructions for a Bad Day by Shane Koyczan

“There will be bad days. Be calm. Loosen your grip, opening each palm slowly now. Let go. Be confident. Know that now is only a moment, and that if today is as bad as it gets, understand that by tomorrow, today will have ended. Be gracious. Accept each extended hand offered, to pull you back from the somewhere you cannot escape. Be diligent. Scrape the gray sky clean. Realize every dark cloud is a smoke screen meant to blind us from the truth, and the truth is whether we see them or not – the sun and moon are still there and always there is light. Be forthright. Despite your instinct to say “it’s alright, I’m okay” – be honest. Say how you feel without fear or guilt, without remorse or complexity. Be lucid in your explanation, be sterling in your oppose. If you think for one second no one knows what you’ve been going through, be accepting of the fact that you are wrong, that the long drawn and heavy breaths of despair have at times been felt by everyone – that pain is part of the human condition and that alone makes you a legion. We hungry underdogs, we risers with dawn, we dismissers of odds, we pressers of on – we will station ourselves to the calm. We will hold ourselves to the steady, be ready player one. Life is going to come at you armed with hard times and tough choices, your voice is your weapon, your thoughts ammunition – there are no free extra men, be aware that as the instant now passes, it exists now as then. So be a mirror reflecting yourself back, and remembering the times when you thought all of this was too hard and you’d never make it through. Remember the times you could have pressed quit – but you hit continue. Be forgiving. Living with the burden of anger is not living. Giving your focus to wrath will leave your entire self absent of what you need. Love and hate are beasts, and the one that grows is the one you feed. Be persistent. Be the weed growing through the cracks in the cement: beautiful – because it doesn’t know it’s not supposed to grow there. Be resolute. Declare what you accept as true in a way that envisions the resolve with which you accept it. If you are having a good day, be considerate. A simple smile could be the first-aid kit that someone has been looking for. If you believe with absolute honesty that you are doing everything you can – do more. There will be bad days, times when the world weighs on you for so long it leaves you looking for an easy way out. There will be moments when the drought of joy seems unending. Instances spent pretending that everything is alright when it clearly is not, check your blind spot. See that love is still there, be patient. Every nightmare has a beginning, but every bad day has an end. Ignore what others have called you. I am calling you friend. Make us comprehend the urgency of your crisis. Silence left to its own devices, breed’s silence. So speak and be heard. One word after the next, express yourself and put your life in the context – if you find that no one is listening, be loud. Make noise. Stand in poise and be open. Hope in these situations is not enough and you will need someone to lean on. In the unlikely event that you have no one, look again. Everyone is blessed with the ability to listen. The deaf will hear you with their eyes. The blind will see you with their hands. Let your heart fill their newsstands, Let them read all about it. Admit to the bad days, the impossible nights. Listen to the insights of those who have been there, but come back. They will tell you; you can stack misery, you can pack disappear, you can even wear your sorrow – but come tomorrow you must change your clothes. Everyone knows pain. We are not meant to carry it forever. We were never meant to hold it so closely, so be certain in the belief that what pain belongs to now will belong soon to then. That when someone asks you how was your day, realize that for some of us – it’s the only way we know how to say, be calm. Loosen your grip, opening each palm, slowly now – let go.”

The Dresser

It’s silly, but somehow the dresser has become the official beginning for preparing for a baby for us.  I didn’t really get why this was so important until last night, wondering what it was about this single piece of furniture that makes it feel official.  Of course it has felt real for a while now, but the actual act of preparing is different. 

Benjamin’s room was going to be an owls-in-the-woods theme, and I searched for a very specific type of used dresser.  I wanted one with character and imperfections and just a certain stain of wood.  I mostly searched on Craigslist, but it seemed dressers were a very hot item in Charlottesville.  It didn’t matter how quickly I responded to a listing; it was always gone within an hour.

We finally found one.  We had just moved into a new place with a third bedroom for him, and it marked the beginning of getting his nursery ready.  I had arranged his unpackaged diapers and clothes–detagged, washed, and folded–in the drawers.  A candle that smelled like apple pie (his favorite) sat on top, and I’d burn it for a little bit each day as we worked on the other parts of his room so it would smell nice for him.

When we returned to Charlottesville after losing Benjamin, his bedroom door stayed shut for a little while.  But we had to start packing and getting ready to move back to Arizona, and while we saved his crib and his things, the dresser had to go.  So I listed it on Craigslist. 

I remember listening to Eddie talk to the guy who responded to our ad.  I could hear him on the other end, and I could almost see the lump forming in Eddie’s throat as the man proudly announced that the dresser would be for their new baby’s room.  He waited for a congratulatory response, but after a long pause, Eddie just said, “Well, we’ll be up for a while.  So whenever you want to come get it.” 

He was there within an hour with a friend and ended up buying both of our dressers and our sectional.  His friend’s curiosity eventually got the best of him when he saw a nearly-finished nursery, but no baby and no pregnant belly.  He asked if we were having a baby too, but the man who was buying the furniture had managed to put it together himself and hushed his buddy. 

Eddie just told him things didn’t work out.  I gave them the diapers.  And they left with Ben’s dresser.  It was the first thing of his we let go.

Maybe even the only thing?

So the dresser has become sort of symbolic.  It doesn’t seem as silly to me as I reflect on the history.  If you remember, we customized Paisley’s dresser with canvas fabric patterned with dandelion puffs.  It’s really the centerpiece of her room, I think.

And now we have Oliver’s. 

Image

Christmas Eve Rambling

I try not to compare levels of grief.  It’s not healthy in either direction, and it certainly doesn’t result in healing progress.  But sometimes I think about all the people I’ve met who’ve lost their children after spending days, weeks, months, even years with their children before having to say goodbye, for whatever reason. 

And I hurt for them. 

Benjamin is missing in a lot of ways, but all of those ways are only imagined.  We were so excited that he was due right before all the holidays, and we imagined how wonderful it would be to have that first year with him.  Starting with Halloween. 

His Halloween costume–an owl “sleep” sack–is hanging in the back of Paisley’s closet.  I’ve thought about giving it away or lending it to someone, but it stays in the closet, having never been worn, the tags still attached, collecting dust. 

Benjamin would have been adorable in it.  But it’s a costume that he never touched, never wore, doesn’t smell like him.  It doesn’t even hang in a closet full of his clothes.  It makes me hurt for the parents who have had to pack away their child’s worn clothes–ones attached to memories and moments and events that actually took place. 

I think about how it feels at Thanksgiving.  Benjamin would have sat right there, across from his sister.  But it stops there.  I’m not looking at a vacant seat he used to fill.  I don’t have to remind myself–ever–to set one less place at the table.  Not at regular meals and not on Thanksgiving.  I don’t think of how it used to be, just how it could have been.  Again, I feel that aching pain for the parents who are counting one less plate for the table than they did the year before, or the year before that, or the year before that.

Christmas is here.  I count off how old he would have been–something I do pretty regularly.  Two years and three months by now.  And think about what he’d be like.  What kinds of gifts would we have given him?  Would he start to “get” Christmas this year, just a little bit?  What would he look like now?  What would he be like?  Oh, how I wish he could be here in the morning.  It would have been his third Christmas. 

But he won’t be there, and the light that is Paisley will undoubtedly chase that shadow away.  It probably won’t even hurt in the morning–it will just be that familiar ache I always feel, one that can only be described as always feeling a little bit hungry or a little bit thirsty or both. 

Maybe even better described by the way some of my pregnancy cravings with Oliver are going these days.  There’s something I want, and I want it BAD, but I can’t quite figure out what it is.  The difference being that I know exactly what it is, but I also know I can never have it. 

Just to digress a little bit more, this continues to be a perfectly boring and normal pregnancy–just the way we like it.  We’re about 25 weeks now, and he’s kicking away as I type.

Back to my Christmas Eve ramblings…

We miss him, but he’s not missing, if that makes any sense.  Our grief is not compounded by memories outside of the night he was born.  Tonight, I’m thinking of those who will notice one less excited voice in the morning, one less pair of feet running down the hall, one less person at breakfast, one less phone call from wherever they lived.  Whether this is your first Christmas without them or your 20th, be gentle with yourselves.  Breathe deeply.  Talk about it if it helps.  Know that you are strong.  Even though you didn’t ask for this pain, even though you have no choice but to be strong, you are

 

Screen Shot 2013-12-24 at 11.49.08 PM

(Please note that WordPress now puts ads on posts at random. I am *not* collecting ad revenue.)

Oliver, Darling

A post on the beautiful Lights for Benjamin event is forthcoming, but for now, we want to let you in on some very exciting news!

We are expecting a healthy baby boy!  The results from the CVS came in today.  They took two weeks–twice as long as Paisley’s. Eddie and I woke up with a horrible feeling in the pit of our stomachs this morning as we were concerned it was taking so long because something was very wrong.  

I’ve chewed my bottom lip raw, have barely eaten the last few days (although the major food aversions played a part in that), and slept horribly last night.  I had dreams of every possible outcome, except the good one.  I dreamed he inherited my balanced translocation–not ideal, but still okay.  I dreamed he had Benjamin’s unbalanced translocation.  I dreamed he inherited my balanced translocation AND had a new, random unbalanced translocation.  I dreamed they told us it would be another week until the results were in.  And I woke up after every dream, tossing and turning all night long.  

We learned last week that he was a boy when the preliminary results came in.  I started thinking about a nursery, looking up baby boy clothes, and imagining Paisley as a big sister to a little brother.  She loves babies, and I know she’ll love him.  Her word of the week is “baby,” and she says it with the sweetest voice.  She babbles and points to my belly, right where he is.  Intuition is real, you guys.

Then I feared that all this planning for a boy was making it too real.  I was afraid it would only hurt more if things went bad.  I was terrified of the choice we’d have to make if that happened.  I felt horrible for risking it, but a friend reminded me this morning that if we hadn’t been strong enough to take a risk, Paisley wouldn’t exist.  How very true.

I sought balanced translocation support groups on Facebook and found a few.  I asked for tips on getting through the wait.  Everyone there knew what we were going through and said the only relief is knowing.  By the beginning of this week, I was slowly falling apart.  It only got worse when the lab told our perinatologist there would be a delay in the results.  Thursday, they said.  I actually got sick when they told us that.

We weren’t even this nervous when we were waiting for Paisley’s results, but I suspect we were still very much in shock over the loss of Ben.  This time, we felt every ounce of worry.  My stomach hasn’t been in such tight knots since we were waiting for Ben to arrive.  

A boy.  We get to look forward to bringing home a healthy boy.  

Oliver Benjamin Santeford, we can’t wait to meet you this Spring.  Just breathe, baby boy.

Image

 

Photo credit

Grief — Stages or Shades?

My husband laughs at me, because I’ll be on the verge of falling asleep and remember something from earlier in that day that I mean to look into.  So I’ll grab my phone and Google away.  I’m always curious, always researching, always wanting to know how something works or how it came to be.

When we got the amnio results revealing Benjamin’s unbalanced translocation, I spent the days following researching all about how it happens, what risks are associated with different translocations, and how likely it was that one of us would be a balanced translocation carrier.  I pored over the information, because the only thing I could do at that point was try to understand what was happening.  I had to make sense of it.

I also tried to understand the grief we were already facing and would soon experience.  What would it feel like?  What was the normal process?  Having limited experience in grief previously, it was somewhat of an unknown, which meant I had to know more about it. 

The five stages of grief came up several times.  Most of us know them:  denial (and isolation), anger, bargaining, depression, and acceptance.  Pretty straightforward.  Not everyone experiences them in the same order, but what I gathered was that I could expect to experience all of these compartmentalized stages and eventually arrive at acceptance. 

Acceptance.  If I can just get to the point of acceptance, it’ll still hurt, but it’ll be a scar and no longer an open wound. 

I immediately checked off denial and isolation.  We had holed ourselves up in a hotel in Philadelphia, escaping only to treat ourselves to one of the frozen yogurt shops on every corner.  We met with my uncle for breakfast once, and he made us laugh and forget for a few minutes.  (I later learned that after he left, he felt so sad about our situation that he walked from Philadelphia all the way home to Oaklyn, NJ.  The pain temporarily relieved from our shoulders went directly to his, and I can’t help but be amazed at the sadness and beauty of that.)

We always returned to our room and stared at the ceiling, begging for sleep to take over so we could forget again.

I don’t think I responded to more than a few e-mails or text messages, and when my phone rang, picking it up proved to be too heavy a burden.  If only I could completely shut out the world, maybe this impending reality would just go away.  We could be pregnant forever in a hotel in Philadelphia.  But it never worked.  Without fail, we’d wake up to a tidal wave of realization.

Denial and isolation.  Check.

Anger didn’t come right away.  Bargaining took the lead on anger.  Please, let it be me.  Let me do this for him.  He can have my entire diaphragm and every last one of my chromosomes

Check.

And after he was born, even right after he died, I experienced what I thought was a form of acceptance.  My mind was in such a state of shock that, in order to protect itself, was convinced that it had accepted what just happened.  Yes, of course it was profoundly sad.  My heart was in a million pieces.  But what could be done to change it?  Nothing.  Nothing would bring him back. 

Acceptance.  Check.  We’re over halfway there.

I think anger hit when we were about halfway across the country during our move to Arizona.  I was in the car, Eddie was in the truck, and I just screamed.  I screamed until I physically couldn’t scream any longer.  I felt anger toward the doctors who missed the signs all along the way.  Anger at myself upon learning that my balanced translocation was the culprit of it all.  Anger toward a god whose existence I am still questioning.  I was in such an angry place, and I was quite content to stay there for a few days.

Anger.  Check.  ONE MORE and I’m done, right? 

Depression is a funny thing.  Funny-peculiar, I mean.  It creeps in.  It’s like trying to remember the beginning of a dream.  There’s this fogginess between the point before depression and the time you realize it’s there.  What makes it harder is that I’ve always been at least a little depressed, so I can’t even pinpoint when or how the depression that comes with grief set in.  Also, I think part of it was that I was still coming down from the shock.  The shock lulled me into this false sense of security where I thought I was okay.  Combine all of that with finding out we were expecting Paisley, which was yet another layer separating me from depression.

It slipped in, unannounced, and festered beneath the surface until we had the wonderful news that Paisley was healthy.  Once I was able to remove that stress from my plate, the depression found a weak spot took over.  It was a parasite, and I was its host. 

This stage still isn’t over.  I’m able to manage it, but it’s still there.  Especially now, as Benjamin’s second birthday approaches.

What I’m finding in these weeks is that the stages aren’t just things on a to-do list that I can check off.  Just because I’ve experienced them doesn’t mean they stay away.  Every last one of them has returned over the last two years.  And they are far from compartmentalized, as I’d previously thought.  They blend together, forming new colors of their own, all in shades of sad blue and angry red. 

The other day, a stranger asked if I had any kids.  This is usually a situation I’m able to handle pretty well–much better than I used to.  At first it felt like betrayal to say one, but I worked through that with my therapist, and the guilt subsided.  But with the way things have been lately, and thoughts of Benjamin heavier on my mind than usual, I blurted it out:  “Two.”  They asked if they were boys or girls, and I just said a boy and a girl.  They responded:  “Oh, that’s just perfect!  You must be very happy.” 

I told them I am, and left it at that.  I allowed myself to explore the idea of having both of them at home waiting for me.  Benjamin and Paisley.  It was a form of denial, maybe even a little unhealthy.  But it happened.

I had to pull over today and cry.  Just let it out.  I didn’t even recognize the sound of my own cry.  I found myself right back in that hotel room in Philadelphia, audibly begging:  Please, please, please.  Benjamin, please.  It took a while to return to the present and realize I was making zero sense. 

My point (yes, I have one) is that it’s not as straightforward as I previously thought.  There are times when I think about how quickly it all happened and how well we moved forward, and I’m really proud of us for that.  Friends and family have mentioned how amazed they were and are at our recovery.  Paisley’s timing played a huge part in all of that, and yes, I can recognize that we approached it all with pretty level heads.  But the shades of grief are still there, still always gaining on each other, and sometimes one stage slides in with a friend or two just to remind me they’re still there. 

I still think it’s normal.  It doesn’t feel that way when I’m begging my steering wheel to bring him back or when I pretend he never left.  I don’t think I’ll ever be able to fully accept something as unnatural as surviving my child, so I think I’m in a perpetual state of being on the verge of acceptance, with occasional regression to the other stages.  It sounds sad, but it’s not always sad, and maybe, in its own way, it’s a form of acceptance.  I accept that it will always hurt.  I accept that the wound will never remain closed; it will always be vulnerable to my memories and surprise visits from Denial, Anger, Bargaining, and Depression. 

 

puf222<
Photo Credit