Saturday, May 28, 2011

the baby's things

Today, along with some grocery shopping, we went to Home Depot and got some plastic bins to store the baby items in.  We came home and while Ben put the groceries away I went upstairs to "start".  I snapped a few images with my crappy camera phone. 

For some reason I don't want to forget the way everything looked. 

After moving some things around and taking pictures, I started looking around for what I wanted to pack up first.

Ben was still downstairs.  I stood really still for a moment and stared at the crib.  For the first time today I was still.  I had spent so much time and energy preparing this little area of our home, and now I was about to dismantle it.  I was about to pack everything away and shove it into the back of my closet.  All these adorable things... all these bright wonderful colors that I could just stare at and stare at for days.  Colors designed to make you happy.

I crumpled to the floor slowly,  and shook with sadness and anger.  It has been 4 weeks since I gave birth... and it stings me like yesterday. 

All these things... the baby's things... each one designed to bring joy, comfort, perform a task.  Each one in quiet limbo. 

Ben could hear me crying and came upstairs to comfort me. 

"Just look at all these wonderful things.  I don't have a baby for them.  I'm so sad."

Some things sit right where we left them either in the haze of preparing for the birth or in the haze of preparing to try to create some memories with Wolfie in the NICU.  Some things are just hanging out because I arranged them there to wait for the baby.  Some things are just hanging around in limbo, still in packaging... having been intended to be opened by now under normal circumstances.

I had a good cry and with Ben's comfort and help, together we began the first part of packing things... slowly.  It isn't done yet, and I think we intend to do this slowly over the next three days. 

I've never been very attached to "stuff".  I'm surprised that all the "stuff" was able to upset me so much.  I just think it's what the things represent... what they remind me of.   Stuff is just stuff but your baby can never be replaced.  And the hopes, memories, expectancies, fantasies and dreams about your baby that are all attached to that stuff are important and hard to deal with too.  The stuff is nothing, but how it makes you feel is hard.

Even Hatchet knows this isn't just stuff.  She knows it's the baby's things. 

Part of this is a healing thing and part of it is a wounding thing.  Every day things change so much.  You'd think you'd get used to changes at some point but you never do, and every change is just as hard as the next. 

But someone you love comes and rubs you on the back until you catch your breath... and a slobbery dog licks your wet, teary cheeks and you take a deep breath... and everything will be OK. 

Slowly... slowly... everything will be OK.

Thursday, May 26, 2011

the nursery

I have a problem and I need your help...

It seems only natural that we should pack up all the baby things.  We decided that we want to keep all the baby things we have because everything we received is perfect and wonderful and we will have children some day.   Until now I've not had the motivation to pack it up.  But today I had decided that I would clean out our closets (Ben and I have separate closets which are actually very spacious and deep), and I would pray that I'd be able to store most of it in the back depths behind our hanging clothes.

Today I spent the day upstairs in our converted attic bedroom gutting my closet of clothing, shoes, linens, old purses and doo dads, organizing everything all over our bed and some on the floor, simultaneously watching Sleeping with the Enemy and other random things from our VHS collection.  Once I had purged my possessions of stuff I didn't want anymore and somewhat put some order to the chaos, Ben came home from work.

I came downstairs to discuss with him what to do next and was hit with a wave of emotion.

 You see, I had already contemplated the thought of going through all the baby things and packing it all away and I'd already imagined what it would feel like and how I would feel doing that.  I was already expecting that I might shed a tear or two, or maybe have a few big breakdowns if I slowed my packing down enough to think about the objects I was putting away... if I took the time to think about the little socks, smell the baby shampoo, read a bit of the story books... yes, if I took the time to do those things I'd certainly need to cry it out.  I can't avoid doing things because it might make me cry.  Leaving all the baby things out for Ben and I to view every time we pass through the nursery area to use our upstairs bathroom, to bump into in the middle of the night when you can barely see your way from one side of the room to the other, to stare at months from, we don't have a nursery you can shut the door to.  We don't have a separate room for a nursery... what we had was a corner of Ben's office area, which is actually in the open space of our converted attic bedroom, which you have to walk through to get to our bathroom.  No, it would not be right to have the cloth diapers, unopened bath toys and pacifiers, sweet little stuffed animals and all the adorable swaddling blankets gather dust as they watch us day in and day out pass them by.

No, it's right to pack it all away in our circumstance.  If only we had a separate room then I would just shut the door and leave it all the way it is... to wait patiently until the next baby. 

  But one little thing about this scenario which I had not imagined was what we would do next.  After all the baby things are put away, we will have an empty space.  It's a small and awkward empty space, mind you, but it will be empty nonetheless.   It's a converted attic so the walls slant in to the center of the room, so we can't hang any thing from the walls or use any furniture that's any taller than a crib or a desk. 

So here's where I need your help.  I have no idea what I should do with this space.

I don't want to just leave it empty for too long... I mean, I can only imagine that a sad, empty space (in my metaphor-loving mind) will only serve to remind me of my empty womb, my empty nest.  Sigh.

Should I just organize the space and then cover everything with sheets or something so we don't have to look at it?  That's kinda depressing, though.

We don't have any exercise equipment and we're joining a gym soon anyways so we can't really use this as a fitness area or anything.

I already have a studio downstairs all to myself for all my crafting and sewing pleasures (and some crafting and sewing frustrations too).

Ben's records and stuff have to stay downstairs because in the summer sometimes the heat is so bad that this upstairs space gets hot enough to make you sweat while you're sitting.

And, we don't really have any non-baby furniture that we don't know what to do with.

We've racked our brains trying to come up with ideas.

Not sure what to do.

Monday, May 23, 2011

nothing fits

Ben is out of town for work for the next three days so I thought I would spend most of the day out in pursuit of trying to find some clothes that could possibly fit me.

I thought for some reason it would make me feel a little better to feel cute again.  To not have to pull up the maternity jeans again.  To not actually look pregnant anymore because I'm basically still wearing all the maternity clothes I had because it's all that fits me since I gained so much weight.

I still have this belly.  If you didn't know me you'd probably assume I was about 4 or 5 months pregnant.  The maternity stuff I have to wear certainly isn't helping that.  I've been a plethora of sizes in my life but I honestly can't recall weighing this much or being this big.  I'm not ashamed of my body, but my body is making it hard for me to find clothing that fits the way I want it to.  And that is making it really hard for me to feel pretty right now.  And the depressive nature of all of this, and the reminder of having to wear maternity clothing is certainly adding another layer to my grief.  And every day I feel less and less like the rainbow sherbet I always imagine I am, and more and more like boring vanilla... not even good vanilla... like the cheap stuff with horrible ice crystals stuck to it and a terrible freezer taste, but you deal with it anyways because it's all you've got... that boring vanilla.  I don't care so much about being fat... fat can be exercised away.  But the thought of being (of looking) boring makes me feel ill.

My pursuit today was long and fruitless.  I spent the entire day trying stuff on.  Sweating like a pig in H&M (seriously, what is up with that place being like a sauna?), being sorely disappointed in Old Navy, finding absolutely nothing at all my favorite thrift stores, having a hard time of it in Target, and then finally being brought to tears in a smelly dressing room in Ross.  I found a pair of jeans at a thrift store for three bucks that probably won't fit me for another month or so because of the belly, and two regular old t-shirts at Target to replace the maternity ones that are useless now that I've slobbered oily salad dressing on them. 


I am tired of this.  A really deep and sad kind of tired that reaches back into my teenage history.  I didn't have the answer to it then, and I still don't.  All I know is that it's a million times harder now that I'm also dealing with losing Wolfie.  I know that life is forever changed for me, but I was once the girl with blue hair.  I was once a force to be reckoned with sporting knee-high Dr. Martens and a fist full of ideas.  I was once a bad-ass mamma jamma... and you could tell with just one glance.  Even then I drove my parents crazy with my pursuit to express my true self outwardly, and I guess now the fight lives on.   But some days I get tired of fighting... and I cry for a while in a dressing room.

Ben and I plan to join a gym really soon.  We both know that it will help us to have healthy minds if we are pursuing healthy bodies as well.   I look forward to eating healthier and hopefully going back to my pre-pregnancy size or maybe better.  But I'm not the kind of girl who likes to wait to buy pretty clothes for when the "goal" is reached.  I want to feel pretty NOW.  There's no reason to wait for it.  I can feel pretty now and then when the weight is gone I can feel pretty then too.  May as well be greedy about it and have pretty clothes no matter what because for me feeling pretty and loving on myself and pampering my outside helps me to feel even better on the inside... and when I feel good on the inside I'm more likely to stick to an exercise or healthy eating plan. 

But when you spend all day trying to find some "pretty" that fits and you don't find it... well... that's a major let down. 

I left Ross after pulling myself together and decided to head home.  I got in the car and when I started it up a Fleet Foxes song came on right at the beginning of the song.  It's this song off their new album and it (for some reason) reminds me of Wolfie. 

I like to think that things happen for a reason and I was meant to hear that song in it's entirety on my drive home after feeling so low.   It made me reflect on what happened today a little deeper, and it put my mind at ease just a little bit.  The lyrics mix with thoughts of my baby boy and when the song changes at the end my mind is high up in the clouds, wandering through the future when I get to see him again. 

And then, pretty dresses and dressing room mirrors seem so far away.  A left-over belly and a hopeless day of retail torture seem easier to endure. 

What are all these small issues, anyways, compared to the big things? 

And nothing fits me.

Wednesday, May 18, 2011

all the what ifs

Right now the hardest part of this journey is dealing with the "what ifs" that attack my thoughts and memories like cruel predators. 

I do find myself daydreaming all the time about everything that's happened... going all the way back to the day we learned we were pregnant.  I guess I can't help that I want to go back to a time when everything was laced with such happiness and promise.  Where everyday I was just so filled with excitement, bursting with pride for all the things that were happening to me and my body, joyfully anticipating a whole new life ahead of me, seriously enjoying every minute (yes, even enjoying the labor).  Unfortunately though, each thought of remembrance that I indulge in cannot end without me thinking of a way to fix it all... thinking of alternative choices that I could have made, or wondering "what if" I had done this or "what if" I had done that... would Wolfie have lived?

I have these thoughts most often just as soon as I wake up.  In the morning, as my eyes are slowly adjusting to the sunlight coming into our bedroom, my brain is soaking in seratonin, and if I've had particularly good dreams, probably a little oxytocin too.  Good thoughts creep to the surface with the sunrise.  Birds are chirping outside our window, and I am half asleep... and I can't help but think of the most precious thing in the world.  It's a new day, I feel so refreshed, and I want to immerse my every thought in the memories of Wolfie.  But even just a few minutes of dancing sweetly in memories with Wolf, of holding him, or feeling him kick me while I was pregnant, of his smell, or his sweet little pink lips or chubby knees... as my brain wakes up... as my eyes come into focus on the room around me... I am reminded of the cruel reality.  "But wait!" my mind yells... "I want to stay here, I want to be with him, I want to have him," and my mind starts to try to find ways to mend the circumstances.  My mind looks for things that could have been done differently.  And like a sad, wounded bird my mind flaps around on the ground, going nowhere and injuring itself further instead of resting or holding still to mend itself.  I don't know why it does this... but it does.  I'm sure I'm not the only one in the world whose mind does this. 

I want to list a few of these here.  I'm doing this because I know some others who may have been through this or may go through this might somehow find relief that they are not the only ones with thoughts like these...

What if I had chosen to induce my labor earlier?
What if I had paid better attention to my diet and not gained so much weight?  Would I have been able to deliver him quicker if I was in better shape?
What if I had agreed to the cervical sweep earlier instead of delaying it a few days?
What if I had pushed harder while I was in the tub?  Would I have been able to deliver him quicker if I had somehow focused better?
What about that time I missed the bottom step on our porch and landed hard on my feet, jolting all my bones and muscles?  Did this have something to do with it?
What about all the painful walking I did to try to induce my labor the week before I went in to be induced?  I was told that Wolfie was already low in my pelvis, so did all the walking and birth-ball bouncing pinch his cord somehow?
What about the fact that when I received the cervadil to ripen my cervix on the first night of the induction, and I was made to lay somewhat on my back (slightly reclined) for a good while- did this put Wolfie in a bad position that caused this?  I've been told that laying on your back is bad because it could restrict blood flow.
What if I had waited longer to deliver naturally without induction?  This might have led to a c-section or a traumatic birth... but would it have saved his life?
What if I had gone to a chiropractor like so many had suggested to me? 
What if I had been drinking the red raspberry leaf tea for the duration of my whole pregnancy instead of just the last week?
What if I had done a better job of taking my prenatal vitamins?
What if I had not taken the castor oil?  Or taken more of it?
What if I had done a better job of getting us into a birthing class?  Would the extra knowledge somehow have helped?
What if I had done a better job of doing prenatal yoga?  Would I have been able to open up my pelvis more?  Would this have helped?
What about my pelvic girdle pain?  Did this have anything to do with it?  What if I had done more to help with that pain?

...and many more...

But perhaps the most painful of all the "what ifs"... because for some reason it cuts me to the core... and I don't believe in it, I really don't but trust me... if you were me, if you were in my shoes right now you would hear this too:

What if you had not insisted on a natural or low intervention birth?

Because behind this "what if" is a little evil voice... a tiny little devil... so faint you can barely hear him... he says, "your decision to do this naturally, your decision to go with low intervention... your decision killed your baby".

I see myself in an uncomfortable OBGYN's office.  I see myself laboring with an epidural, my feet up in stirrups, scared out of my mind.  I see myself, being wheeled to the OR with a blank, nervous stare across my face - like that hispanic lady I saw on her way there when Ben and I were headed to the NICU for the first time.  I see all of that... and sometimes in the fantasy I see me holding my baby hours later, selfishly crying because I didn't get the birth I thought I would.  Lamenting that I didn't receive the natural oxytocin benefits.  Dropping a few tears... but ultimately not having a care in the world because Wolfie is there.  And other times I see all of that... and I still see the same outcome.  I see a blur of nurses filling a room, only this time it is an operating room.   I still don't see my baby.  I still don't get to really hold him.  The opposite extreme didn't save him.  In another fantasy I have a home birth.  Same thing with two different outcomes... either Wolfie lives because things were different or he still goes to heaven because that was God's intention all along, no matter how hard I tried or didn't try.

I goes without saying that all of these things are hurdles I will have to jump if I get pregnant again.

Ultimately I come back to earth and stop and be still for a while because I know that God is in control.  Like all of you I do my best not to listen to or entertain those little devil voices.  I have them, I acknowledge that they are there but I do not act on them, and I seriously work very hard not to dwell in them.  But they do come up.  Living this out is not just a daily challenge... you hear, "pick up your cross daily".  Well, I'm reaching for it just about every 5 or 10 minutes these days...because my life was already so drenched in Wolfie, I'm not sure my thoughts of him will ever dry up.  

Somewhere there is a peace out there for me... probably through some counseling, or maybe with just some time and lots of prayer.  The peace will help me see that I did do my best.  It will help me move on from the "what ifs".  It will help me to daydream about the memories I wish to cherish without ending in a nightmare of "what ifs".

I have a lot of work ahead of me, I can tell.  But I am so glad that I am willing to keep working at it. 

My mother says I should have been a lawyer because I'm utterly relentless.  She also says my Native American name should have been Rides a Dead Horse, because I hate the thought of giving up.  I am thanking God for that.


Monday, May 16, 2011


This past weekend was spent with friends and their amazing family in the mountains of North Carolina.  For several days my mind danced with green moss, good conversation, tall trees, adorable kids, charming mountain streams, fellowship with food and a nice change of pace.  I thank God for such amazing people in the world.

While we were there I realized that the grief travels with me.  Although, it was lightened and made easier by comforting friends and scenery, it is a weight I will bear forever.  How heavy it feels depends on so much (or maybe it's nothing at all?) at any given moment.


Today is Monday and we just got back to our house from picking up our son from the Cremation Society.  When Ben handed the little wooden box to me to hold on our ride home he said, "It's a lot heavier than I thought it would be."  I agreed.

A few moments later in the car he touched my leg because I had gotten quiet.  I told him I was just thinking about Wolfie.  A few more minutes later I choked up and through the lump in my throat I was barely able to utter, "I hate death so much."  "What's that honey?" Ben asked.  I took a deep breath.  "I just hate death so much.  I hate everything about it.  There's nothing there to make me feel better.  I don't want to picture our baby rotting in a casket and I don't want to picture him in a pile of ashes."

Sometimes on these little rants I feel like such a whiner.  There's a little old lady in my brain (like a little old lady from the Great Depression who's been through much more than me) who yells back at me, "Quit yer bitchin'.  You're so blessed.  There are so many others in the world who suffer more than you."  But it just makes me feel so much better to complain.  Thank God my husband is so good at giving me a sense of validation and helping me to feel like it's OK and everything I do is totally normal.

We turned onto our street and as the car moved me I felt the weight of Wolfie's little wooden urn in my hands again.  We had never actually picked up or held this box we chose while it was empty, but I assume that most of what I felt must be his weight and not the wood.  I dropped a few more tears because the weight felt good.  A bittersweet good because although I wanted to hold him, I desperately wanted to hold him the regular way... the normal way... both of us alive.

After a few seconds Ben said, "But his heart isn't in there... or his eyes."  This unexpectedly brought a little smile to my face.  The thought which brought on the smile was like some weird camera shot going from an extreme micro-close-up of a tiny human heart pumping blood, zooming out to show a little baby's chest rising and falling, zooming out to show a little girl being held by a loving mommy and daddy, zooming out to show the hospital building they were in, zooming out to show the neighborhood, the city, the world... and then dropping back down suddenly in one swooping quick zoom to the top of our car bouncing into the driveway... me balancing the box in my two hands and barely breaking one tiny smile.  It made me feel better.

With heavy hearts... heavy hearts...

As we pulled up to the house and Ben put the car in park, I took another deep breath.  Every moment feels like an important one.

Wednesday, May 11, 2011

Never the Same Again

Since last I wrote two things have become perfectly clear to Ben and I.

First, it's hard to recognize and acknowledge what your mind or body even needs when you're grieving... and second, things will never be the same again.

When I stand or sit for too long since the birth, things start to hurt.  I'm never sure what I need to do.  I've never been the kind of person who naps in the middle of the day.  Napping always makes me feel groggy... it will ruin a perfectly good day for me if I fall asleep before I'm ready to really sleep for 8 hours or so.  But the other day, I allowed myself to be horizontal on the couch for a little while and it was what my body needed.  It wasn't standing or sitting.  Darnit, body... why couldn't you tell me that a few days ago when I was getting frustrated with the uncomfortableness of it all!

All the pains and stuff that I feel physically just remind me of what's not there, of what we've been through.  A nice little bodily reminder to help me keep those emotional hurts right on the surface of my mind.  I'm not allowed to bury it.  I'm not allowed to swallow my emotional pain because my physical aches and new body all point giant neon arrows at it.  This isn't such a bad thing, though.  I'm glad I can't do that.  Being "present" for the whole process (a process which I suppose actually never ends) keeps me in a healthy frame of mind.  However, I think the human emotion-scape was meant to mentally "check out" every now and then.  It's funny to say this, and perhaps some of you who've walked through extreme grief may relate, but in the last few days we've had to force ourselves to "check out" at times... via watching actual TV (catching up on some episodes of The Office) or playing an arcade game on the Xbox.  A quick trip to Publix for a change of scenery and a bag of grapes.  We have to really listen hard to try to detect what our minds and bodies need right now.  Me personally, being full of drama and definitely full of swirling hormones and all kinds of emotion right now, I have the tendency to want to lay or sit quietly somewhere and just think... just think...think until I cry.  Which is perfectly fine and I wouldn't feel guilty for doing it or anything but if I literally did that all day I'd be pretty miserable... and I don't think Wolfie wants me and Ben to be miserable.  And I don't think Ben wants me to be miserable, and I certainly don't want him to be. 

Food tastes different because we treasure it.  Music sounds different because the vibrations and the lyrics have become more poignant.  Friends become more precious than gold.  A sunny day is a reason to thank the Lord. 

Today I did a load of laundry.  It was my first since everything happened.  Mom came to our house while I was still in the hospital and washed everything for us then but even a week later we needed to wash some things.  As I was bending over transferring things from the washer to the dryer, I got the urge to cry.  I had done so much laundry in anticipation of Wolfgang's arrival.  I washed all his cloth diapers, washed all his clothes... washed all my clothes, everything.  I had prepared my mind to be doing one or two loads of laundry per day by now what with the cloth diapering that I desperately wanted to make happen.  Our sad, wet clumps of clothing going into the dryer.  Mostly dark colors like black, gray and brown.   I wanted those clumps to be mostly baby blue and light green. I wanted to see some prefolds stuck to the inside wall of my washing machine from the spin cycle.  I wanted to have to reach really far in to the bottom of the washer drum to fetch one teeny tiny grey sock that was halfway wedged under the agitator.  I hadn't expected this.  I hadn't expected that my laundry would make me sad.

So, you see, even doing laundry is forever changed.  The sadness will wax and wain, surely.  But, I'll never forget.  How much more so are all the important things in my life changed now.  I haven't even begun to get back to my work, my sewing.  I can't imagine the wave of things that will change there. 

We thought we were on this road.  We saw it straight ahead.  We saw a little baby Wolfie, breastfeeding, late night wakings, daddy cuddle time, frustrations with carseats, giggles and smiles... all the myriads of things you expect to come with your first child.

But the road split off.  An eternal exit ramp.  We are getting farther and farther away from that other road we were on.  There are no brakes, no reverse... we're not even driving this thing anyway.  We're on a new road now.  Nothing will ever be the same.

Sunday, May 8, 2011

Mother's Day

Today it is Mother's Day.  Our baby boy, Wolfgang, went to be in heaven at just 5 days old last Thursday.  We held his memorial service yesterday. 

I still feel compelled to write.

Since the birth of Wolfie things were a blur of hope, doctors, crying, wheelchairs, hugging and holding on to one another, beeping and chiming monitors going off all over the NICU, despair, nurses, taking in the sights/feel/smell/warmth of our son, finding it uncomfortable to neither sit nor stand as I heal, anger, spending time with family members, guilt, reading all the amazing prayers and support from our friends, and thankfulness.

The body.

Sometimes in the quiet when we were at home, when my heart had settled from the chaos of the day and the enjoyment of spending time with our precious one at the hospital, I would lament and cry because... and I'm not sure I can ever do this feeling any real justice... well, I would literally feel like every cell in my body knew that a baby was supposed to be there... in my arms, within arms reach.   Even my pinky toe would sort-of emotional ache.  The kind of strange physical thing you might hear about when someone has an organ transplant from another person and then suddenly has new urges or new cravings (as if their tissue carried with it life experiences)... that kind of ache.  It's in all my tissues.  My body says, "Something is missing here" and it cries out uncontrollably.

Still though, I feel my body healing.  The last week has felt like three.  I have to remind myself that only a week has passed.  I think I'm healing very well for it only being a week.  The birth was hard, he was a big boy.  I pulled all my neck muscles and experienced a full-body soreness I haven't felt since the day after I started an intense fitness bootcamp.  But every day gets a little better, and every day I can count more physical blessings. 

The mind.

God is good.  I am so crazy blessed with good friends, good family, a loving and caring man of God for a husband.  Without these, my mind would suffer.  There is a big difference between suffering and pain.  I am not suffering.

I won't pretend, however, that everything is completely kosher in my mind.  We all have dark voices inside that like to try to sway our nerve.  In these days mine sometimes try to ease their greasy fingers into the door, to open it wider, to make me hear or think that some part of this was my fault.  To make me think there was something I could have done differently to save my son.  Some other choice I could have made.  Some other way I could have been.  Who of you wouldn't trade in anything... anything in the world... to keep your child?  No birth plan, c-section scar, terrible birth experience, amount of pain,  embarrassment... nothing... nothing would have kept me from choosing to have him.  I don't care about any of that stuff because I would have gladly given it all up to save him.   And then my mind is put to ease, I am reminded that no matter what I do, or have done, it isn't up to me.  God's will is most powerful.  I did the very best I could do.  I guess I did more than some expectant mothers would do.  Last night, in a conversation, I was reminded of all the women who are so careless with their pregnancies.  Who don't value the gift they've been given.  Who drink heavily or don't eat well.  Who smoke crack or otherwise consciously choose put their precious baby in danger.  Some of them still have beautiful, healthy babies.  It isn't fair.  But it isn't up to me.

Dear friends, don't worry.  Ben and I are sure to seek some grief counseling.  I am told that guilt is a perfectly normal emotion to experience during the loss of a child.  It's just my mind trying to find a way out, a place of blame, a resting place so it can stop churning, stop seeking.  I don't honestly blame myself, but at times I do feel weak... I guess it's to be expected... and that's Ok as far as I'm concerned.

The spirit.

During the memorial service we took communion.  Ben and I received first and then sat down.  I was in a slight daze.  I gazed at Wolfie's pictures on his little shrine and thought hard about his little soul.  For a while at the hospital I imagined it hovering above his body, listening to us sing to him and read to him.  Feeling every kiss and touch.  There in the middle of the service, I felt him somehow high above me, but reaching down, like a little thread draping down... or reaching through... neatly weaving little stitches in the middle of my soul.  Sewing us together forever.  I leaned in closer to my husband's shoulder, and I also felt the stitches connecting me to him tug a bit tighter, pulled by an Almighty hand...all the seams becoming stronger.       

Our friends in the communion line kept coming... and coming... and coming.  Just when I thought, "Surely the line must be getting to the end," it kept coming still.   I hadn't really looked behind myself to assess just how many people were there for Wolfie... for us.  We had entered the sanctuary earlier but the measure of everyone's support for us in that moment had yet to hit me until the fog of my mind had lifted just enough to absorb it.  The love... the support... the outpouring of everyone's heart... my God... we felt it all.  We feel it all.  It wraps us in blessed comfort such that I have never experienced before.  Everyone remarked at how "strong" we were being.  No... we were being strengthened... by all of you.  Every prayer, every thought, every kind word, every hug,  we breathe it all in.  They have nourished our souls.

The road.

One day at a time right now.  I cannot tell what life holds for us now.  We sit and listen to records, we talk, we eat, we sleep, we spend time with loved ones.  For now, that's about all we can do.  Eventually we will celebrate, we will indulge, we will venture out, we will dance, we will not feel the sting of loss as incredibly sharp as it grabs us now.

I'll leave you with a quote I'm stealing from another friend's blog... because I feel that it completely describes... well...  everything.

"We do not have to die to arrive at the gates of Heaven.  In fact, we have to be truly alive.  The practice is to touch life deeply so that the Kingdom of God becomes a reality."

-THICH NHAT HANH (from Living Buddha, Living Christ)


Ben's Thank You

A couple days ago, I had a thought that I would like to thank everyone specifically for all the things that they’ve done for us this past week. I’ve realized pretty quickly that this would be impossible. Instead I’m afraid a little mass thank you is going to have to suffice. Thank you to everyone who sent us notes, messages, emails, texts; who donated their time, their resources, their money; who prayed, thought about or sent us there well wishes or said nice things about us. We’re not sure how Brooke and I ended up with such amazing friends and family, but to say we’re both very grateful doesn’t begin to scratch the surface.

Yesterday was Wolfie’s memorial service. Many of you were there and many came from really far away just to support us. The Advent crew did such an amazing job with the service. I’m not sure we expected to feel so much comfort and closure from it, but we do.

Today, things get a little more real. We’re both not sure how the next week will be, but we’re not naïve enough to think the healing process is over. In actuality, it’s just beginning. But that doesn’t mean we’re not hopeful about the future.

Brooke was talking on the phone with one of her best friends the other day, and she said something that has really stuck with me. She said that everyone has been praying for a miracle, but who’s to say a miracle didn’t happen? Maybe it just wasn’t the kind of miracle we expected.

Unlike adults, legally establishing brain death in infants is difficult. Red tape, among other things, can make donating organs of newborns pretty tricky. In all honesty, I still don’t understand the details of why this is the case. When we realized that Wolfie wasn’t going to make it, being able to donate his organs became very important to us. Brooke and I could both be described as being a bit “granola” at times, and have been known to reuse or repurpose things that others were throwing away. Undoubtedly, this is a value we would have instilled in Wolfie at a young age as well. We know if he had been able to grow up, organ donation would have been important to him, as it’s important to us.

Even with our vocal support of wanting to be able to do this, Wolfie’s doctors warned us that there weren’t any guarantees that they’d be able to use more than his corneas, and maybe his heart valves. Brooke and I promised ourselves that even if we were only able to donate his corneas, we wouldn’t be disappointed, as the gift of sight is a great gift to be able to give.

On our last day with Wolfie, on Thursday, the doctors were able to declare that Wolfie was completely brain dead. Because of this, Wolfie was given an opportunity to potentially donate some of his organs. They still had a to draw blood and do a lot of tests, and we were told they would let us know what they were able use.

Late Friday evening, I spoke with the woman from Life Link (organ donation folks). She told us that Wolfie’s blood type and tissue compatibility made it slightly difficult to find matches for some of his organs. However, we were overjoyed to hear Wolfie’s heart was matched with a one month old. Maybe there will be a miracle somewhere in all this after all.

Tuesday, May 3, 2011

A small step back for now, the birth story.

For those who would like to read about the birth...   I am writing it now because writing it all down is very comforting to me.  And I am sharing it with the world because I believe our story may one day be a comfort to someone else.

I just want to preface all of this next post by saying that I feel unsure as to how some of you may take our updates.  I'm sure at some point sharing in the grief becomes difficult, and certainly our intentions are not to make anyone feel drained or dragged.  But inherently, our updates are almost in a way personally cathartic for both me and Ben.  We discussed it and agreed that we each seem to feel so much better after taking a little bit of time to jot down our feelings, or the events that have transpired.  We are each (in our own unique ways) very expressive people.  We don't ever usually hold in any kind of feeling for very long… and we have always felt that communication is key.  Some of these things may be hard for some of you who know us well to hear or stomach.  Or maybe some of you find a place of insight or comfort to see and hear about how we are getting on.  Either way, I personally feel that if my words could be of any good in this world, I'd rather they be out there for anyone and everyone who wants to share in them. 

So, Ok, this is the story of the birth itself.  For 9 months the idea of the "birth" was really important to me.  I need a way to express it.  I need to get it out.  I need to purge the story from my head so I can move past it and begin the process of walking in all the new changes that have happened in just the few days since.  I am writing this post on Tuesday.  I gave birth just before the sunrise last Saturday.

Where to begin?  It seems a bit silly to talk about my birth experience at this point in time.  But I know that other families may be dealing with the same questions, the same issues… and may want to hear a bit more detail, or hear the timeline of the events leading up to the moments of tragedy and sadness.  Perhaps then, for them and for myself as well, a better understanding of the whole story, and not just all the sad bits, can make this process seem whole.  I consider this to be just one small piece of the whole story, the whole blog.  I cannot stand on it's own.  It is only one small part of this journey.   

From previous posts here on my blog you can read all about the fears and thoughts that lead up to the time I went in to the hospital for my gentle induction to begin.  Just a little before 5pm on Thursday last week, Ben and I packed our bags, loaded up the car and with many butterflies in my stomach I walked out of the house.  When we arrived I was comforted by how slowly things seemed to move at the hospital.  It felt better to me that I wasn't be rushed anywhere to do anything… especially since I found the whole situation of artificially inducing the labor to be a bit scary.  I went through a basic check-in and they took my BP and got me on an IV drip of fluids.  Around 9 or 10 (I think, these details are a bit fuzzy) I was given Cervadil… which is just a little insert thing that goes next to my cervix to "ripen" it.  I was to basically just to go to sleep with that in all night and they would check me in the morning to see if I had dilated any more.  Ben and I tried to get some sleep.  I was seriously so nervous with anticipation but not nearly as much as the day leading up to actually getting to the hospital.  I was given an Ambien, a little sleeping aid which I'd never taken before.  I was nervous to take it as I didn't want to feel drugged out ever, but after waking up wide awake at 5am that morning I remarked to myself in the quiet, dark labor and delivery room that a couple glasses of red wine would have done me better.  I woke my sweet Ben, unfortunately because I wasn't really supposed to get up and move around so he had to hand me things.  We ended up watching the royal wedding on TV.  

In the morning they checked and I was around 4cm dilated.  Time for the Pitocin.  I felt very secure after discussing with my amazing midwife, Amy, that this Pitocin induction would really feel like a natural onset of labor… and not the horror stories you tend to read about a lot on the internet or see on scary shows on TV.  They started me at 2 units (which seriously, feels like nothing), and then bumped it up by 2 every hour, but not to exceed 6 units.   So after 3 hours I was at 6 units (must have been about 12 noon on Friday at this point) and they would just leave me at 6 until my contractions were intense enough to take me off of it and see if my own body could supply the contractions itself.  For the record, most inductions actually start out at 6 units and increase by 2 every half-hour until sometimes reach anywhere between 16-20 units.  Oh man, I can tell you that after about 5 or 6 hours of just hovering at 6 units, I could NEVER have handled anything more than that without an epidural.  From around 3 or 4 in the afternoon until about 8 or 9pm on Friday my contractions gradually built and built.  Nearly 12 hours of going from "oh, that might have been a contraction but I'm not sure it kinda felt like a little period cramp"… to  "mmmmmmmmmmaaaaaaaaaaaaaaaoooooooooohhhhh ohhhhhhh ohhhhh ohhhh   ughhhhhh!!!!". 

Around 10 or 11pm on Friday, I think, they stopped the Pitocin and monitored me for a while to see what would happen.  After about an hour of monitoring, with my contractions still continuing to grow, they removed the IV and I was able to get in the shower for a bit.  While the warm water was nice on my skin and all, I was finding it hard to stand even then as my legs were literally quivering with exhaustion.  In the shower is when I began a little ritual of shaking my open palm (kinda like waving at someone) but using it to kinda tap or hit things gently.  Along with vocalizing my pain with long, drawn out moans and low, primal utterances (some of which were downright child-like, as if part of my experiences from all my times of life were all being mustered up to the surface to help me cope) I was somehow able to endure each one. 

After the shower, the water birthing tub was prepared and I was able to get in.  I want to point out here that I was CONSTANTLY monitored.  They were poking and prodding my belly from all directions between each and every contraction (seriously like every 3 minutes… for HOURS) to listen to his heart rate and make sure that all was OK.  Ben mentioned later that the monitoring (in the moment) was almost annoying.  Sometimes they would press my belly so hard with a sensor that it would bring on the next contraction… no rest for me!  But we are SO GLAD for this persistence.  I think it was this attention to detail that really helped us all to understand later that the situation with Wolfie now is one that we were never able to avoid, that we all did the best we could and that every single precaution was taken to prevent any negative outcomes.  There will be no doubt in my mind that both Wolfie and I received the absolute best medical care and attention during the labor that anyone could ever expect.

Around 1am, while I was in the tub, I began to feel an uncontrollable reflex in my stomach during a contraction.  I'm sorry to be graphic (as if I haven't been graphic already) but the only thing I can relate it to is the muscle-reflex you feel in your abdomen when you vomit uncontrollably…. only it was pushing everything down and not up.   I was in the tub for a total of 4 hours (the maximum allowed) before I got back out.  But in the tub is when "transition" really began.  Active pushing began about an hour after I got into the tub.  Unfortunately at the same time, I began to feel my contractions wear down.  Each contraction began to feel more like an urge to push, but I really didn't feel my uterus helping me out.  So, needless to say, this made the pushing *really* hard.  I remember during one of my resting times (like a few minutes between a couple contractions) thinking a bit on all those diaphragm exercises I did in college and highschool for theatre and wondering if perhaps they could be helping me now. 

My midwife, Amy, and doula, Que, were fantastic in coaching me through everything.  I had no idea what to expect but I never felt scared, never felt alone, never felt abandoned.  I felt safe and secure in what was happening to me.

When I had to get out of the tub, the thought occurred to me that this might lead to a c-section.  In that moment I was completely OK with that.  I think at that point I'd already been in active labor for about 6 or 7 hours and had been pushing for 3 or 4.  But, I got on the bed, had a few pushes again sans-pitocin.  Amy re-started the Pit again for me though in the very last hours because things just really needed to progress faster. .  I tried several positions on the bed… whatever it takes.  But I eventually settled with the position that most "natural enthusiasts" regard to be the worst for delivery.  I was on my back, slightly reclined up, with Que and a kind but perfectly confident nurse holding my legs back with knees to my armpits.   Ben had one hand on the nurses side (I think I strangled his fingers), and Que had the other hand with her free hand.   At this point in the labor i was so exhausted that I needed to focus all my energy on my abdomen (and not standing or squatting with my legs, or trying to hold myself up by my arms or anything).  Amy also re-assured me that from what she could tell, this position might actually be better for my pelvis and where Wolfie was in relation to everything.  I had always felt that my belly fell a little bit more "forward" than other pregnant ladies, probably creating a bad angle for pushing.  The baby was slowly making his way down, with every good push I could feel it.  I was doing it.  He was going to be here soon

"soon" felt like forever, though.  And I actually think it was.  It seemed like for about 3 hours it was "soon".  My eyes were watering with all the strain.  Every now and then I could feel a nice cold washcloth across my brow.  The nurse holding my leg asked at some point if I'd like her to hold a mirror so I could see what was going on.  During the pregnancy I thought for sure I'd want to see, but in that moment I couldn't bear another distraction.  Seeing it wouldn't help me push any harder.  I needed to reach deep into myself, and shut my eyes.  I needed to feel my way through, not see my way through.  The strain was incredible.  Determination had long been established here, and now I was reaching into areas of my strength and psyche for the nerve, the last straws of power that I could muster to push harder, hold it longer, keep it coming.  With every great push I thought to myself "surely, this is the hardest you can do" but seconds later I found another place deep within myself, my body, my mind to find a way to go longer or push harder or focus better.   Finally at 6:31 I pushed with all the might and strength I had left (which is really what I'd already been doing for about 4 hours), and my sweet Wolfie was born into the world.  I think in the few seconds after he left my body I said "I did it!"  Clarity washed over at me and I could see my husband and Que in a blur of sweat and tears.  They were both smiling and talking to me… I think they were remarking at how big Wolfie was, that he had a head of fuzzy hair, what a beautiful baby he was.  i think I could hear Ben telling me how proud he was of me. 

At the moment I was rejoicing.  There was no reason to do otherwise.  I could hear Amy at my feet saying "come on baby, come on baby".  I knew she was trying to get him to cry.  He wasn't breathing on his own yet.  I knew enough of births that babies sometimes need a few seconds.  But seconds went on.  In the blink of an eye, Amy cut the cord with lightning-fast precision and took him over to the little crib in the room.  I never saw him.  The two nurses who were also assisting in the birth surrounded the crib with Amy.  Again, I could hear Amy exclaim, "Come on baby.  Come on baby."  I could hear a lot of rustling noise, some suctioning, a pumping noise.  I could not see my baby.  I looked for Que and Ben's faces… for a while Ben and Que were both calm, reassuring.  I think someone said at some point that Wolfie would be handed to me in just a second. 

That second went on forever.  The next time I looked for my husbands face, I could see a twinge of fear… a blink of worry.  

Monday, May 2, 2011

Ben's second update on our son, Wolfie.

Again, as i said last update, thank you so much for all your kind words, prayers and support. I'd take a long time to list all the people we'd like to thank, but suffice it to say, the love coming in has been overwhelming. Brooke and I are both blessed with so many amazing friends and family. Also, again, i want to apologize for not returning texts or phone calls or emails. I still actually have voicemails i haven't even listened to yet, but i'll get to them at some point, i promise.

The past couple days have been eventful. Yesterday (Sunday), Brooke was well enough to get checked out of the hospital (Atlanta Medical Center). After we swung by the house briefly (to feed Hatchet and let her out), we went straight to Northside Hospital to be with Wolfie for the day. I had gotten to hang out with him a lot on Saturday, but Brooke had only gotten to see him for about 5 minutes before they helicoptered him to Northside.

We didn't get any new information yesterday, but we did get a lot of support from our friends and families, who made sure we were eating and taking care of ourselves. Spending time with Wolfie was hard, but also really nice. We didn't want to leave him, but neither Brooke nor I had slept in our own beds since Wednesday night, and there was nothing we could do for Wolfie at the moment, as he couldn't be moved or held because of the cooling treatment. These things considered, combined with my parents (Wolfie is their first grandchild) hanging out with him each evening late into the night, we decided to go home and try and recouperate and get a proper night's sleep, which neither of us had gotten yet.

I was so emotionally and physically drained from the past several days, that i was able to fall asleep almost the second my head hit the pillow. Brooke had a little bit of a harder time getting sleep, but every time she woke up she visualized Wolfie telling her that it was okay and that she needed to rest, and this helped her a lot.

On Sunday, our good friend who is an Anglican priest, Fr. Dale Brown, came by and blessed and prayed for Wolfie. Obviously, he would have come to the hospital for us anyways, but because his wife, Que, was our backup doula and was there for the whole labor and delivery, she was able to keep him updated and he was able to get to Northside the very next day. Before he left, he offered to baptize Wolfie whenever we wanted, should we feel we'd like to do that. This appealled to Brooke and I a great deal, and we decided that night to do it the next day, Monday (today).

As Brooke is still recovering, she still moves pretty slowly and was given a lot of orders from the nurses that required a lot of time. Because of this, something as simple as getting ready to go to the hospital to see Wolfie takes time. We did get to Northside in the late morning, though, just in time to see the pediatric neurologist. The neurologist had been able to monitor Wolfie's EEG activity remotely for 24 hours, and was about give him his first in-person exam. We stayed for his exam, and then the nuerologist asked us if we wanted to talk there next to Wolfie or in a private conference room. Brooke and I both realized that if he was giving us the option of talking in a private conference room, we should take him up on it, as things probably weren't too good.

Our assumption was correct. Wolfie's main doctor at Northside had told me on Saturday, after he was admitted and started on the cooling, that his case of HIE was a 9 out of 10, with 10 being the most severe. The neurologist told us that based on his EEG's and exam he had just give him, Wolfie's case was more like a 10 out of 10. The previous plan of treatment was for Wolfie to be cooled for 72 hours, and then warmed and given an MRI. The neurologist told us, however, he didn't need the MRI to be able to tell that Wolfie's brain was damaged beyond hope. The brain steam specifically was not doing any hint of it's instinctual functions, like breathing, gag reflex, and pupils responding to light.

The neurologist told us that he respected whatever we'd like to do, but medical science had exhausted it's resources, and we should probably start thinking about letting Wolfie pass on. He even offered to cut Wolfie's cooling period shorter so that we could let him pass on sooner. Needless to say, Brooke and I have cried a lot today. I'm not entirely familiar with the how grief usually works, but most of today has been crying interspersed with robotic acceptance.

Not long after receiving the news, Fr. Dale came to do Wolfie's baptism. It was a really nice little ceremony, and i got to record video of it as well. We brought an icon and a rosary my aunt made for me for Wolfie's baptismal sacramentals, and they are still hanging out at his bedside now. Dale did a great job, and we're very thankful he was able to come and do this for us.

After the baptism, we met with Wolfie's main doctor to wrap our minds around what he had told us earlier today. We obviously don't want to drag out Wolfie's situation when there is no hope for recovery, but at the same time it's obviously hard to let go of hope.

Even though we know waiting for him to be warmed up and waiting for the MRI results isn't going to change Wolfie's prognosis, we're going to wait for them anyways. Since our only hope at this point is quite a big miracle, this is our way of giving God a few days to decide if that's going to happen. Some of you may find this a bit silly and irrational, or some of you may think we're being narrowminded about what God can do. The bottom line is we're doing the best we know how, and we feel this decision will give us the most peace.

All that being said, we're still making preparations for Wolfie's passing, and the things that need to be taken care of afterwards.

People looking at our situation are likely to be counting their blessings at this point, but we're counting ours as well. While we're devastated that this happened to Wolfie, we are grateful for the days we've had and will have with him. Some parents never get the chance to say goodbye to their children, but we have and will. Even more, though he's not yet 3 days old, he's received love and well wishes and had more people thinking and praying for him than we can ever imagine.

In a strange way, we're also reassured by all the doctor's we've talked to who have told us that there was nothing we could have done to prevent this happening to Wolfie. It was out of our hands, and we're grateful we don't have to think about "what if" situations and other unhealthy guilt.

I would say, "I'll keep you all updated" but i can't promise i will after this post. However, I do feel comfortable saying that Brooke and I will be okay, and at some point in the future, we'll be out and about and among you again.

We love you all, and even if he can't say it, Wolfie loves you all too.

An update from Ben, just a few hours after I delivered Wolfie.

First off, i want to say thank you to everyone for all the well wishes and prayers. I apologize if i haven't been returning texts, phone calls or other messages. It's just been a crazy few days.

Wolfgang "Wolfie" Roy Helfen was born his morning at 6:30am. His mom, being the great warrior she is, spent all evening yesterday and early this morning pushing out our 9lbs and 11oz boy. Her strength blew me away, and i'm proud of her more than words can express. Throughout the pregnancy and throughout labor, Wolfie moved around A LOT and always had a great, strong heartbeat. Unfortunately, when he finally came out this morning he wasn't breathing and it was clear there was something wrong. The main concerns were about his brain. They worked on him in the room briefly and then took him to the NICU there at Atlanta Medical Center. Then they (very quickly) decided to air lift him to Northside Hospital to the NICU there, so that he could undergo a special treatment (not available at Atlanta Medical) to see if they could help his brain.

As it was a whirlwind first few hours of life, we're still putting together a lot of details, but here's what we know now: Wolfie had/has something called HIE, or Hypoxic-Ischemic Encephalopathy. We're not sure how long he had it in the womb or how it happened, as he always seemed super healthy and there was nothing during labor to cause anyone to think otherwise. The way it was explained to us was that the acid level in his blood was very high. Because of this there was issue of how much oxygen was in Wolfie's blood, and more specifically how little oxygen was getting to his brain. The bottom line is he sustained a pretty heavy amount of brain damage. The result of this brain damage has been seizures and erradic breathing, among other complications.

The reason he was rushed to Northside is because they have really good NICU department there and they have a prodecure they can do that has been shown to have some success in certain cases of HIE, as long as it's done very quickly after birth. Basically, what they do is lower the body temperature to about 92º. This slows down his whole body, but especially his brain. Slowing down his brain when he is this young, in some case, can help give the brain a chance to fix itself and repair some of the damage. He is on this treatment now, and will be for a total of 72 hours. Afterwards, they'll warm him up and see if there's been any improvement.

We're told Wolfie's case of HIE was quite severe, so the chances of this treatment working are smaller, but there is a possibility that he could regain a lot of function of his brain and get away with only minor learning disabilities.

We're taking things day by day, but today we're just thankful he's alive. I got to spend a lot of time today with him, but Brooke is still recovering in the hospital and has only gotten to see him for 5 minutes or so, before he was transfered. When we check out of the hospital tomorrow, we'll get to go spend the whole day with Wolfie at Northside, and we're very excited about it.

We'll try to keep everyone updated, but in the meantime, thanks again for all the thoughts and prayers, we feel very blessed by them.

Also, one random side note: Wolfie is TOTALLY like the boss of the NICU. He is seriously like 3 and 4 times larger than all the other babies, he's like a giant. :)