Best and Worst

Last year, this week, we had our first ultrasound.  Because of our infertility I had an elevated sense of fear that we would lose our baby to miscarriage.  I wasn’t fully celebrating pregnancy because I was so convinced it would end tragically.  This first ultrasound would be the point I could finally let myself take a breath.  The appointment went well, the ultrasound tech was really positive and we left with the first sense of relief we had felt for a long time.  A few hours later on our way to my in-law’s we got a call from our doctor with the news of Colette’s omphalocele. 

With it came a risk of genetic abnormalities, congenital heart disease and underdeveloped lungs.  I was sitting at the table for Christmas dinner while holding my phone under the table and spiraling down into the google pit of information.  I was a wax figure that night, forming my face up into a smile and hoping it would hold. I held it together until we got in the car, and then I cried, a loud animal cry that I couldn’t control. I remember lying in bed that night and becoming so overwhelmed that I thought I would be sick, so I focused completely on breathing in and out.  With each breath I remember praying, “I need you,” until I finally fell asleep.

We went to the mountains the weekend after for Christmas with my family.  We were all trying to be positive but the fear was saturating everything.  I remember my laugh even sounded fake and felt separate from me. Internally I was spinning in chaos.  I wasn’t present in any experience because I was processing worse case scenario and begging God for mercy. At our new years party I was pasting on smiles and having pleasant conversation while my mind was living in really deep grief and fear. Not many people knew yet so everyone was celebrating our pregnancy, while its very existence was my nightmare. Each mention of it and congratulatory hug was a reminder.  It was the deepest loss looming over so recent a blossom of love.

Even thinking back on it I feel sick to my stomach.  The fear is still palatable.  Anniversaries of experiences might be the way I’m forced to process this last year.  Bit by bit I’ll feel the darkness of that particular moment again, remember the pain, grieve what was lost, review how it changed me, and maybe learn to accept it all. This day a year ago I remember feeling half alive, both numb and painfully awake.

Now looking back a year later, it was all so much harder than I could have imagined at the time.  The fear, the pamphlet the genetic counselor gave me, the encouragement to terminate, the heart diagnosis, months of begging for a miracle, watching her go after delivery, months in the hospital, x-rays, infections, kissing her goodby in the O.R., breathing machines, doctor’s worried faces, medications, the recovery, the love, the fear. 

Colette is in her room sleeping right now.  She has her chubby arm draped over her chubby cheek.  It was so hard because she was so worth it.

A year ago my perfect plans for life were shattered. I’ll never regain the blissful ignorance that life will go as planned. I think about the future differently, I live today differently, I’m darker and deeper and brighter all the same.  2017 was the worst and best year of my life. I’m writing this when I should be packing for the mountains for Christmas with my family. Colette will stare at all her cousins being crazy and loud as my family has always been.  I’ll genuinely smile.  My laugh will be mine. I’ll be present to the moment. And by the grace of God, Colette will be there with me.

So cheers to 2018

Here’s to hoping for better days ahead, to letting fear go, to celebrating each moment in the moment, and in spite of the loss that defines this life, to loving.

Candy Canes and Unknown Lanes

I thought the hospital would be this phase that would exist and then would end.  That I would come home from that unfortunate time and be who I was with a baby in tow.  Of course I never thought we would be there five months and I never thought we would almost lose her.  Except maybe I did think those things, I just blocked that out and figured I would survive it and then return to Brooke when it ended. No matter how it ended. 

Colette had a follow up appointment with her cardiologist yesterday. During the appointment I watched her laying on the bed that I laid on just nine months earlier when we got such horrible news that she had major congenital heart disease, potentially incompatible with life.  Yesterday she was just staring at the echo screen and the doctor was making light-hearted small talk and just five minutes after he started he finished by saying, “everything looks great.”  Nine months ago I sobbed in that room.  Trever and I both did, the doctor had to leave the room so we could break down and pull ourselves together enough to make it to the car.  Nine months ago I had stared at that same echo screen playing out what it would look like to lose our baby girl. I also experienced a miracle in that room when her diagnosis got reversed. “Woops, we got a bad angle.” Yesterday I looked up at the ceiling tiles I had stared at 9 months ago with all that nausea and fear swirling around. I looked up at them and I looked down at her and I held it together just long enough to make it to my car.  

Because all is well. The people around me are celebrating Colette in ways that make me weak with gratitude. No one is tired of her story.  They keep applauding her miracle and I’m humbled.  They help me celebrate.  Because the dark truth of it is that sometimes it’s hard for me to celebrate.  I’ve come out of the hospital and our whole family is different. Colette is just representative of how we’re all slowly healing and weaning off our survival drugs (her: morphine / me: a stiff upper lip). I’m learning the new me as all the strength wears off and the leftover pain settles in. I can’t figure out how to feel less afraid. I have a short fuse that once was long. I have low energy that gets me just barely to the end of the day.  With every celebration of our miracle I grieve with those who were left with tragedy. It’s weird and dark. I expected candy canes and silver lanes when the reality is that I celebrate with a remaining shadow. I suppose it’s that dark truth that life is unpredictable and I can’t unlearn that lesson.  Or it’s a delayed response to all the pain.  Or it’s the baby girl that was our NICU neighbor who is still there without a predictable end date. There is a heaviness to my being that won’t slough off.  Or maybe it’s a realism that will never go away, I have a new view of life that will always carry with it the truth of pain.

I’m learning this new part of me, discovering new scars and making peace with them. But I’m celebrating every second with her too.  Every time we sit in the backyard and she stares at the sky.  Or every walk we take and she dozes off in her stroller. Or every time we have friends over and we peacefully have dinner with her in our laps.  Every bit of it is a celebration.

You’re part of what is helping me celebrate.  Thank you for applauding and crying and sending happy emoticons and warm meals. I try and follow that secret social media protocol, not too many picture, less baby photos, don’t try so hard, etc. etc. Well I used to, and now I just post too many photos and even though I’m a bit uneven you’re helping me see the brightness in it all. Thanks for loving her. Thanks for getting excited over all my ridiculous mom posts.  It means so much, especially right now while I learn my new self.  You're our cheerleaders and I didn't realize how much we needed it. Thanks. 

Home

I’ve been silent on here for a really long time.  Silent because I had nothing to say.  I don’t have a treasure chest full of profound thoughts that have been accumulating over the time I’ve been living in the upside down.  I thought that’s how it would be.  These last couple of years have been so difficult and through it I’ve learned a lot and had so much to say along the way.  But that was the kiddie pool. It was the time where I was keeping my head above water, finding my feet after each new wave.  I didn’t realize that there would be a point where I would become overwhelmed and resort to tucking my head, pulling in my arms and legs and becoming just moving sediment in the ebb and flow of crashing waves.

I’ve had a few epiphanies.  But not really.  I’ve just been surviving. And there is nothing poetic to say about that. I have no deep thoughts about what it does to your faith to walk passed a prayer room in a children’s hospital every day and see sobbing parents as desperate as me for a miracle.  In the stinging moments when we thought we were losing her I had no beautiful and miraculous peace. I'm not sure how to make peace with seeing two friends lose a child in the five months we were scrambling to save ours. I don't know what to do with the empathy I have for God, for as greatly as we love our children it must break him to watch us suffer.  Maybe as I look back I’ll have some thoughts about it all.  But for now I’m not sure what to say, so much happened but it was all swirling and chaotic. Maybe when it all settles I'll see a little more clearly. 

But that’s all for another day because today I went for a walk. Colette is home and it has been the biggest relief of my life. She's cute and chubby and mellow and I love not having to say goodbye. The leaves in my neighborhood have all turned and are starting to decorate the sidewalk with autumn colors. Colette was sleeping peacefully in her stroller and the sun was just warm enough to make the cool breeze comforting. I’m typically a futuristic person, until I learned that life doesn’t play out the way you plan it to.  So I’m getting better at appreciating the moment without the fear or hope of what tomorrow will be.  And today the weather was truly perfect.  As are Colette’s blue eyes and chubby cheeks. I woke up in the morning and pulled her out of her bassinet and into bed.  I made dinner while she napped in her room. We’re all starting to heal a little bit and it sort of feels like I’m coming back to life. Maybe there will be things to say later, but for now I just wanted to say, thank you. There was a lot of darkness in the last five months but a spot of brightness was the kindness of the people around us. So, thank you, it made a difference. 

Cole, Piglette, Coco, Peach, Nuggie

We're surviving, if you’re wondering.  So much has changed and my life looks really different than it did just two months ago.  I love being outside and being active but now I sit in a chair all day inside a fluorescently lit room.  I love travelling and going new places but for now I have the exact same routine every single day.  I love my friends but I’m currently alone the majority of the time.  I like my work and I just quit last week, which I sobbed over for a day straight while dramatically uttering - who am I?

But that’s nonsense really because Colette will be ok and some people would kill to sit in a comfy chair all day and binge watch Glee.  Yes, Glee.  Trever threatens me often with angry words over the fact that our daughter might like musicals due to this recent addiction.  But, DGAF.  So what if her favorite childhood movie is Newsies.  People who like Newsies are really. cool. people.

As far as a medical update, it has been drama.  Post surgery, Colette started eating and got to about half of where she needed to be to go home when she suddenly stopped tolerating her food.  So they did a contrast study with an x-ray and found that once again her stomach is kinked and there is no food passing through.  So surgery again.  But first they have to wait for her bowels to completely heal from her last surgery, which would put us back in the O.R. in about a month.  So for now we wait.

Every time things start going well, in my head I subconsciously move out of the hospital and prep for coming home, only to hit another block in the road and find that my fragile, flickering light at the end of the tunnel has just tragically gone out.  So I have to re-adjust myself and settle back into hospital life.  It usually takes about a day and involves a lot of crying.  You should know my lane of emotional homeostasis is very narrow.  All of this crying is very distressing. 

But also, she’s growing up and getting so cute.  She coos and smiles and holds her head up like a champ.  She has a super mellow personality and doesn’t really fuss much.  She has strong eye contact and has inherited my big eyes and thus a resting shocked face. In her photos people comment, “the Brooke look”.  For the rest of her life people will think she is perpetually surprised and for the rest of her life she will probably feel perpetually mellow. 

I’m trying hard not to miss it.  I think constantly - I can’t wait until Christmas because we should be home by then and this will all be over.  But then she’ll be six months old and her little baby phase will be over.  I don’t want to spend those few precious moments wishing I was somewhere else.  So I’m settling back into the hospital way of life. 

We’ll be ok and that's my update for now.

P.S. this is a light-hearted post.  I also have majorly depressing thoughts due to daily walks through the lobby of a children’s hospital, but I’ll save those for later and it might do you good to avoid them. 

Cheers.

Summer

Kids are going back to school now.  I’ve missed the summer.  It’s a weird feeling to have an entire season pass you by and feel as though you have been stagnant the whole time. I feel like I’ve gone away to live in a bubble and social media has allowed me to peak into the life I would be living were I not in such a bubble.  We haven’t seen our friends in 7 weeks and I’ve left the city of Orange only twice.  I come home and sleep and then head back to the hospital where I feel trapped and yet it’s the only place I want to be.  I feel so deeply alone and yet the idea of seeing people sounds really exhausting.  So for now our friends and family support us through prayer, text messages and baskets of food that keep showing up. 

My nephew was in a NICU for a bit and my sister’s nurse said to her - even though there is no clear end date, today we are one day closer to it. This helps me.  You know if you’ve ever done distance running what hitting the wall feels like?  Well the only way passed that is a choice to change your mental focus.  You have to stop thinking about the finish line because that’s what is so overwhelming, you have to focus completely on the next step and that’s it.  One more step.  Then after a while you’ll start calming down, breathing more rhythmically, your muscles will stop panicking and eventually you’ll look up again and settle back into the pattern of the race.

I’ve hit the wall so many times.  It’s the first time in my life where I’ve thought to myself - I don’t think I can do this, I don’t know how to keep going. But I’ve gotten pretty good at calming myself down just enough to make one more day bearable, and so we keep going and we’re starting to look up a bit. 

Colette is doing better and has healed from surgery and her infection.  I knew it was bad in the moment when she was so sick but looking back I can’t even believe how bad it actually was. It’s a black hole of chaos and grief and I can’t even remember much of it.  The feelings come back to me though, when I see the few pictures we have of her during that time and I can hardly believe we all pulled through. 

Days are brighter now though. She is starting to eat again and for the most part keeping everything down.  Today she takes 8cc’s every three hours…we go home when she gets to 40cc’s.  One step at a time.

When we almost lost her, surviving the NICU got put in perspective.  I’ll spend all the time we need to in the that sterile room because we are starting to the see the flicker of what might be the light at the end of this crazy long tunnel. 

I need a nap.  And also a lot of sunshine and fresh air. And also potentially some therapy.

Thank you for all the continued love, support and prayers - it is what’s getting us through.   

Also please forgive my writing...my mind is spaghetti.

Colette

Hello. Sorry about the radio silence.

I figured I would give a little update but I don’t know where to begin. Everything is in contrast.  I feel like I’ve lived a million lives since July 4th and yet also like it’s been one long day.  My world has shrunken down into a tiny NICU room and at the same time has expanded beyond what I could have previously imagined. The NICU is so much harder than I thought it would be but only because Colette is so much more to me than I thought she could be. This explosion has left me wordless and incapable of processing at the speed in which I'm experiencing things.  

But I'll do my best to give a update.  The short version is that we had a scheduled C-section for July 6th.  In between a pool party and a BBQ on July 4th Trever and I went home to take a nap which lead to a quick check-up at the hospital where I suddenly started contracting.  They planned to monitor me overnight and sent Trever home to get our things and in the 30 minutes he was gone I had progressed so far that we were being wheeled into the O.R. just minutes after he returned.  At 11:45 on July 4th Colette arrived. 

I don’t know how to say what it felt like to hear her cry or see her perfect face. Nobody tells you how utterly terrifying it is to love someone that much.  Nobody tells you what it’s like to watch your spouse love someone the same fierce way that you do.  Nobody tells you that all your other silly dreams pale to colorless when she arrives.  Or maybe they do and I just didn’t have a way to hear it. 

As far as a medical update we’re still in the NICU.  For the first couple of days they were just monitoring her heart.  By the end of the first week she was scheduled for heart surgery.  I was at home comatose with grief when the cardiologist called to say surgery was cancelled.  They decided to re-evaluate her scans with 6 other cardiologists and when they did the majority of cardiologists thought she would be fine without surgery.  So they took her off the medication that would reveal if her heart would be ok and as it turns out, it was.  We were also told her pulmonary veins were in the wrong place and a scan revealed they weren’t.  Oh and her lungs work great which can be a really big problem with baby’s who have Omphalocele. I would like to say this in a more dramatic way so you can understand the relief it was to have such a miraculous turn of events but I don’t have the words.

Then about a week ago she started getting sick with a fever.  They couldn't identify the infection and they had her on antibiotics but nothing was working.  They started getting concerned that antibiotics weren't reaching the infection which meant blood wasn't reaching the infection which meant she likely had dead bowel.  I was sat down in a conference room with the surgeon who told me he was very worried about Colette.  He said he was stuck in a bad place between not operating and having her get more sick from infection which would ultimately claim her life, or to open her up and potentially not be able to close her up because the majority of her bowels are only covered with a thin membrane which is hard to sew up.  We opted for surgery and she was in the O.R. within an hour.  

Rock bottom is when an anthesthesiologist tells you to kiss your daughter goodbye and you walk out of the pre-op room with nothing to do but wait. One big blur and a few hours later the surgeon came and told us she made it through the surgery and all her bowels were healthy.  He was able to re-position her bowels to help with food tolerance and the found the infection which was the omphalocele covering itself and then he was able to close her back up. We walked out the waiting room to find our families waiting for us and we all sobbed and breathed a huge sigh of relief.  They started her on new antiobiotics and all of her levels are finally dropping showing the infection is finally going away. 

The grace of God has been so apparent that my underserving soul can hardly understand it.  And yet I’m asking for more. Our big hurdles are to keep her infection numbers dropping, to get her to drain the fluid she is retaining from surgery, then re-starting feeds which we're hoping we have better luck with post-surgery.  Once we're in the clear and she's eating she can come home and we won’t have surgery on her abdomen for quite a while. Prayers welcomed. 

We get little updates from friends every once in a while about the amount of people praying for us and just about every day baskets of food, warm meals, tiny dresses and stuffed animals show up at our door.  When I get my head above water I'll thank you all individually.  But know that every prayer and every act of love and support means so much more to us than we could express.  Thank you. 

Inches of Growth

Five or six months ago Trever and I had dinner with our friend Kathleen.  It was right in the middle of receiving all of the worst news about Colette and we were kind of spinning and emotional.  The future was extremely unknown and the encouragement from everyone was to trust God because we would find our peace there.  Of course there was no peace in that moment as most grievers know, straight out of the gate is reserved for the roller coaster of anger, grief, confusion, questioning and the like. 

I remember I was trying to fix it all.  Doing my best to put all my emotions in order and find helpful answers to my questions.  Christians in the sunny bright of the day were doing their best to get me to a place of peace with all their encouragement. It was like someone put me in dark room and from the other side of the door people were telling me that I should be able to see light so long as I looked hard enough, because they themselves were seeing the light perfectly fine. So I was grasping for clarity and progressing in no way accept to wear myself out even further. 

So, back to Kathleen.  Trever and I were processing all that was happening and I remember that she really accepted that we had all these questions and that in fact she was not interested in, or capable of, answering them for us.  She understood the truth that these answers would only come by way of a Divine gift. So, she told us to write our prayers and questions down, to accept our incapacity to find answers to our great questions about God and instead ask him to answer them.  Essentially throw our hands in the air and in a ‘no vote’ for me, ask for intervention. 

I did it. I wrote my prayers down and forgot about it until a couple of weeks ago when I opened it up and read it.  I had this bizarre connection to the words because they made so much sense to me.  I remember clearly being in the place I was when I wrote those prayers but I don’t think I realized how far I had come since then. It was like I stood against the doorframe and realized that somehow I had grown two inches since the last pencil hash mark and I had no idea it had happened. Here’s a little excerpt:

I haven’t prayed because I don’t know what to say, and probably partly because the only control I have is giving you the cold shoulder for what has happened.  I feel like a fool for ever believing you intervene and I feel like a fool for thinking this baby was a miracle. I feel like a fool because I let the pregnancy help me with my unbelief and I shouted it from the rooftops, when in fact just a layer below lie the truth of doubt and confusion that was exposed by the searing affect of pain. I’ve been told to allow you to bring a wisdom and understanding that I can’t gain on my own.  It’s a risky game but I suppose it’s all I’ve got. 

And then I go on in even less articulate ways to hash through my questions. Pleasant isn’t it?

There is a chapter in Mere Christianity about faith.  C.S. Lewis starts out by telling the reader that if they’re not in the place where this chapter makes sense then to just pass it by.  The reason being that one can only truly understand some questions and concepts of faith when one is on the other side of them.  When we have accepted our bankruptcy and understand that we cannot conjure up answers to questions or brainiac our way to faith, it’s then that we are open in a different way to new forms of understanding.   Suffering is one such way of exposing our bankruptcy so that all we have is to open our hands and beg for meaning.

I was talking to my friend Nick about this because I remember meeting with him days after all the horrible doctors appointments.  I was badgering him with questions for how to get through everything.  I needed a formula so I asked him for books and he laughed and said, “there’s nothing I can give you that will get you through this.” So I asked him how he got through his own suffering because maybe that would give me answers. He responded but not in a very satisfying way, he sort of just said he did.  He talked a little about the peace that he came to but it was in another language for all it meant to me.

It wasn't until I read these prayers and reflected on who I am now that I finally understand Nick and Kathleen’s silence.  I understand that there was nothing they could say.  I understand that there is no formula.  I understand I was incapable of understanding. I understand that if they had tried to explain whatever process they have been through it would have been incomprehensible in any real meaningful way, because I could only learn through the release and through the receiving of understanding via nothing but the grace of God. As C.S. Lewis says, “All this trying leads up to the vital moment which you turn to God and say, ‘You must do this, I can’t.’ It is the change from being confident about our own efforts to the state in which we despair of doing anything for ourselves and leave it to God.” We typically only get here because we are forced to, but it creates in us a desperation that we would never choose and yet it's the only thing that finally allows us to grow. 

I’ve grown a few inches, but of course the truth is I’m quite happy with my current height. I don't want to learn anything in the coming weeks through pain, I want bailed out.  I would like to stay at my height for a good long while. I’m grateful for how far I’ve come but would like to take a break.  I had really bad growing pains when I was little.  I hated them. I will always hate them. But I suppose it's the only way I stopped having the stature of a child.  

Wait, Hurry Up

How is this life what it is? I can’t handle the movement of it.  I remember the minute before I walked down the aisle at my wedding and wanting so desperately to take the moment in and yet knowing full well that I just couldn’t.  There was no way to fully understand, embrace and experience the change that was happening.   I wanted to feel every little thing, the leaving of one chapter for another.  I felt like I was straining to open my eyes really widely to stare intently at the turning of the page so that I realized it and was aware for every second of the turning.

But we can’t soak it in completely.  The page turns at its own pace with a ticking movement and then once it's turned we can’t go back really, except to remember. We have to let go to move forward.  And so it seems I’m moving into a new chapter and cannot for the life of me figure out how to soak in these last weeks.  Trever and I have been married for almost nine years and it’s all we know.  It sounds so silly but it’s blowing my mind that we’ll be a family of 3 in just a two weeks. TWO WEEKS! It has been just us, travelling when we wanted, late nights when we wanted, only the two of us to plan for, deep sleeping, young, married, a family of 2.  People try and tell us the changes and feelings we’ll experience but no one can know them until they know them. This is for almost anything in life, no one can tell you what it’s like up ahead until you know. So I sit here with a blurry future certain of nothing but change, thrilled for what's ahead but slightly sad for what we're leaving behind.   

I’m not the type to dwell in the past and I tend to like change, it’s just that I know how significant this is and I sort of wish I could slow it all down so I had time to process it.  I want to etch it in stone the feelings of pregnancy, to encapsulate this season of life so that I remember every bit of it and be sure that I have felt the whole thing while it’s happening. I’m afraid to let it become a memory.  I hope I loved every second of this decade of life, I hope I soaked it in while I had it.

But then who really cares, because I’ll get so see what her face looks like and if she has long fingers like me, or green eyes like Trever.  This vacillation is where my mind can spend hours -  toggling between thoughts of what will be different, what we’re letting go of and thoughts of what we’re stepping into, what we’ll become and who she’ll be. Of course in any new chapter I never wished to go back, so I know once I'm there I'll be nothing but thrilled.  But today I just feel the intensity of the movement.  

My sister Hayley texted me and asked me if I’m in the phase where I cry all the time.  I wasn’t really but I’m suddenly very raw, I feel every single thing, like all my nerves are fired up on all cylinders.  So I’m assuming the tears are around the corner.  Tears over change, tears over excitement, tears over fear, tears because I’m hot and need a nap, tears because I’m turning 30, tears because going out to dinner will feel like a treat, but mostly tears because we cannot wait for this new person that will become, in an instant, an inseparable part of who we are.

P.S. I keep having irrational delivery fear in the middle of the night, although it's not because of what you would think.  It's things like...people always say, 'pack your hospital bag'.  What's a hospital bag? What do people bring? I don't have a bag? Why doesn't anyone tell you what's in the hospital bag? Are there secret mother things that should be in said bag? Should I set a bag out with chapstick and a hair tie? I don't know. If someone could enlighten me that would be great for my REM cycle. 

P.S.S. Someone say a prayer for Trever for obvious reasons, most notably paragraph five in this post. Also, the father's day card I gave him read, "Let the great adventure begin."  T minus 14 days until the adventure. Woah, let's do this.

Even Keel

I heard a reading the other day which encouraged the Christian to contemplate whether they could truly desire God’s will over their own blessings.  It’s such an interesting encouragement to make for a couple of reasons.  The first is, of course, the general assumption that a blessing is to be lucky or to have good fortune. This mindset is reinforced by facebook blurbs such as, “I’m not lucky, I’m blessed #childofgod.”  I actually saw this post and of course my brain exploded when I read it.  It’s such an American Christian way of talking about God’s work in our lives.  I wonder if you could get those words out in front of a tortured Chinese Christian, I wouldn’t recommend trying.  Blessings can only truly be understood in light of the greater purpose of this life, otherwise we will have a terrible misunderstanding and attribute only our good fortune to God and have quite a confused soul when tragedy inevitably comes our way.

The second is the difficulty of such a task.  I think about the way I pray for Colette and wondered momentarily if I was capable of praying for some greater purpose to be accomplished, even if that meant suffering for my unborn daughter.  The answer is I’m not, all I can truly desire is her healing. I suppose Jesus prayed for the task of crucifixion to be taken from him.  If he could have had it another way he begs for that to be so.  Maybe that means we're allowed, or even made, to pray that we are spared life's pain.

Yesterday we went to St. Joseph’s hospital, where we will be delivering, to have a tour of the unit and have a medical conference.  It was all quite overwhelming, even looking at the operating room Trever and I were both a little faint…so that should make D-day pretty interesting. Like who catches who?  After the tour we sat in a waiting room allowing the blood to make its way back into our brains and discussed the horrible lighting that is itself 90% of why people want to faint in hospitals, the other 10% is the smells and the beeping. 

We were then called into a conference room not knowing what to expect and found ourselves at the head of an enormous table surrounded by 15 or so hospital staff.  There sat the chief of general surgery, cardiac surgeon, Labor and Delivery charge nurse, NICU director, and a lot of other people I can’t remember.  We were not expecting this! They went around discussing their part of the birthing, NICU, transfer, testing, surgery process with kindness and reference to Colette by name.  It was simultaneously comforting and terrifying. Comforting that they take this so serious and that we are in very good hands.  Terrifying because her condition actually deserves all of this.

They didn’t give us a ton of new information for what to expect after she’s here because basically they don’t know enough until they see her to make any educated guesses.  But one of the doctors came up to me and said, “I’m going to be your realist.  Expect a slow long process and then if it’s shorter you’ll be relieved. This is far better to clinging to expectations of a speedy and easy process and finding yourself disappointed for every day that it drags on.”

So I got home and climbed in bed with a new reality check and slept for two hours.  I knew that moment was coming, I had become far too positive over the course of the last couple of months and knew something needed to bring me back down to reality.  This was it.

I was asked the other day about my range of emotions as we get closer to delivery – I said 85% excitement and 15% fear, anxiety, stress and general light-headedness (per the florescent lighting in my future).  Also nobody asked me this, but I would like the world to know my back hurts and I weigh more than my husband, who by the way has returned from Italy and with tornadic (derivative of tornado which spell check tells me is not a word) energy has put our house together and made it home.  People come over and assume I have good taste because I have clearly decorated my house so well and I nod my head until they ask me, “who painted that?”  I usually respond with my name for the piece, “oh the blueberry donut? Not sure.”  It breaks Trever’s heart, his little color obsessed heart. 

Opposites attract as they say, but I digress. At this point we’re one month out from meeting Colette.  I want it to come quickly and I want time to slow down too.  I want her to be healed quickly and preparing my heart for the long journey that awaits.  I want to make almond milk in my new kitchen and I also want to take a nap.  I am very even keel these days.

Finally, I wanted to thank you for all your kind responses to my maternity photos.  It meant a lot to have so many people celebrating with me. Thank you! 

Au Revoir. 

A Peaceful Second

I use this app that compiles a one second video from every day into what is now a several minute video full of my life.  It’s probably really boring to an outsider, but to me each second represents a flood of memories and it makes me really nostalgic and grateful. It also makes me kind of stressed out because I can literally watch my life passing by.  There are so many lives I wish I could live, like why am I not a farmer? But that’s a rant for another time.

I was watching the video the other day for the first time in a while and there are certain clips that represent some of our darkest moments this year.  There is a hardly noticeable clip of a beach view in Laguna, but I remember the day so vividly.  Trever and I had received some really horrible news the week before and we had pretty much stayed home all week.  Saturday came along and we still didn’t want to see people but we wanted to get out so we went to Laguna with puffy eyes and had lunch on the water.  I remember exactly how it all felt.  I was so raw, all the callouses has been ripped off and I was so alive to pain and grief and God in some bizarre ways. The pain was so acute, the fear overwhelming, our unknowable future taunting, and yet somehow in the middle of it there was peace.  There was a connection to hope I had never before experienced.  There was a proper view of life and what mattered that I wish I could bottle. There were parts of how I felt that I wish I didn’t have to let go of. 

But of course we settle in, and when we were once positive we would never feel normal again we do.  Human nature is to crawl back to that homeostasis for survival, but sometimes that normalcy is numbing. It makes us complacent. We forget what we learned in the darkness. We forget what matters. Where the veil between us and the divine was thin in tragedy, we find it once again thick and elusive in the mundane. Our longing for the hope of the eternal fades to the background because life feels ok.  

I feel this way.  Right now I dream a lot about having a kitchen and less dust and more homemade coffee.  The day-to-day has captured me and I can remember clearly what occupied my mind just months ago.  This is not to say I don’t think often of Colette and melt into a puddle of fear begging for mercy on an hourly basis, but in general my mind has compartmentalized leaving extra room for mostly the mundane.  Now all those spiritual practices that were once part of survival have again become disciplines, choices made because they should be made. Now that my happiness feels within grasp I want it more than anything.  I think I want it more than the hope that once held me up, well the hope that still does hold me up whether I remember it or not.

Maybe this is human nature that we’re made to find balance and peace. It seems it’s how we survive and yet the flip side is we lose our souls to it, we so easily lose our purpose to complacency and new kitchens. But maybe it’s ok that I rest in this moment of peace seeing as how we're just SIX WEEKS away from meeting baby girl and all that will come with that. I don’t know.    

Things to notice in my video– First, anytime my brother-in-law Tyler is in the video he’s flipping me off, which could either be representative of a contentious relationship between the two of us or his general bad attitude regarding documentation in the form of videos.  Second, Trever at one point is wearing a facemask, this is actually a regular occurrence post turning thirty. Third, my friend Jessie can complete entire sentences in a one second clip, she believes this is a skill, we just think it’s very loud.  Lastly, my cats are very fat; we would appreciate if you would hold off on the judgment as we are currently working very hard on getting them a legitimate diagnosis so as to alleviate us from our responsibility for their obesity.  If you know a shady vet hook it up!

Also our kitchen is done today.  We all need a good happy cry over this! Pictures to come.

Recognition

I keep thinking I have nothing to write about but I think it has more to do with the fact that I don’t have space to sit and think. But we’re all bored of hearing about the moving saga so I’ll let that one lie until I can show you before and after photos.

We have just returned from the alternate universe that is vacation.  It was perfectly timed and it was absolute bliss.  We went to Ojai, Santa Barabara and Los Olivos.  We napped every day, stared off in the distance for long periods of time, I read a little, we swam a little, we picnicked at my favorite winery in Los Olivos, we ate dinner at 9pm, and we binged watched really bad TV.  I mean, what else is vacation for?

Then within twenty-four hours we left Los Olivos and the zen of the golden hills, came home and started working on the house, went to Hoag hospital to see my newest nephew Rory come into the world and woke up at 6am for a garage sale.  Rory is absolutely perfect and no matter how many of my sister’s births I witness (we’re not Mormon) I will never get over what a miracle the whole thing is.  

As a side, 6am is apparently not early enough for the garage sale types.  People should sleep later on Saturdays, it bothers me that they don’t.  But it doesn’t matter anymore because we have decided garage sales are not worth it for the Hoehne’s. Neither Trever or I are in sales for good reason, we sold a washer/dryer set for $15, a BBQ for $10, and after we got bored of it all we just put a big free sign up and went inside.  We ultimately got what we wanted though, big annoying things that were taking up space went away.

Then! On Sunday we went to my sister Brittany’s church to see Crosby, her youngest of four, get dedicated (really though we’re not Mormon, we have brown hair).  You expect to go to your own church and have everyone tell you how much they’re praying for you and your family.  You don’t expect to go to your sister’s church and have people you have never met know you and your unborn daughter by name and tell you that they’re praying for you every day.  It was really humbling.

It was also Mother’s Day that day. I felt so celebrated for my mother-to-be status and yet with each reference to the norms of mothering I thought about the abnormal.  For the mothers that have been lost, for the empty wombs. I think about them not to pity them or pity myself but because the validation in recognition can bring ease. The pain should be noted in the midst of the good because there always is pain in the midst, as that’s the reality of our world.  I celebrate perfect babies being born all around me with real and full joy because it’s really good news. But of course the grief is there. Abnormality is cruel isn’t it?

The funny thing is in the afternoon I had a conversation with my brother-in-law’s sister who had high-risk pregnancies and births.  We talked about the abnormal and it took away the loneliness of grief. It was all I needed, to laugh about the normal mom’s who lose their minds over a medication they don’t want to take or not being able to breastfeed for three years. I hope I’m that person for someone one day, the normalizing comforter.  In a weird way we’re lucky when we get to be that person for someone.  It puts to use our pain, which is the best thing we can ever make of it.  Then at least it has a purpose. 

Also I got a new doctor.  One of the first things he did was ask Colette's name and called her by it the entire appointment.  He validated her humanity and it was everything I needed from him.  Hallelujah for that. 

That's All for Now

It’s been rather quiet over here on my blog.  I am not cooking so no fun recipes and I have no time to read or think much so I don’t have any particularly interesting thoughts to share. But we moved people! We Moved! Some really generous friends came over and helped us lug our life six blocks from our old place to our new one.  We loaded up pretty much everything into our back bedroom and our garage so all we have is a bed.  But I made it very cozy so at least there’s that.  All of our kitchen appliances are currently in our dining room as the kitchen is down to the studs.  The cats are losing their minds and so are we a little bit, but we woke up this morning and wandered around our tiny space dreaming about what it would be.  And the really lovely news is that our kitchen will be done in just two weeks thanks to our magician contractor and his team. We’ll be sure to take good before and after photos.

In other news, we had a meeting with our cardiac surgeon today.  He said there’s only a 50/50 chance the heart condition Colette has been diagnosed with even exists.  Apparently it’s hard to see aortic arches. If the condition is present it’s a very common and uncomplicated surgery and they might even be able to go through an incision in her back.  He was very unconcerned and we left a meeting with a doctor feeling buoyant, which is a new experience.

I feel lighter recently and excited to meet her.  I feel hopeful that’s we’ll all make it through this with some scars but a ton of strength.  By the grace of God we are seeing miracles happen in her tiny body and we are getting through it all with peace and an unexpected joy.

Sometimes I have moments of sadness when I remember that this isn’t normal.  I walked into target and saw a cute little baby outfit and thought how bizarre it was that I haven’t bought anything for her.  I remember that my celebration is tentative, that it almost makes me sad to have joy because it reminds me that I might have to let go.  But we’re celebrating in ways that don’t feel overwhelming.  My sisters, my mom and I did a spa day and Glen Ivey for a mini celebration.  Some friends are taking me to a fun lunch at Pelican Hill. I was in a team meeting at work and all my co-workers stood around me and prayed for me and I sobbed because I suppose I believe in prayer. The amount of people that reach out to me and remind me they are praying daily for Colette could make me sob in this café I’m sitting in. Our people are celebrating joyfully with us in just the ways we need them to and they are very tangibly a source of strength in moments of weakness. For all of this I am so grateful. 

This is all to say that in the chaos we’re quite irrationally ok.

That’s all for now, more to come. 

Meth Lab Therapy

I’m pretty sure Trever and I are on the verge of snapping.  We are STILL not moved.  Yes it’s a tragedy, but we decided that it makes more sense to bite the bullet and get our kitchen done before Colette arrives.  You know dust and chaos and hammers aren’t always conducive to newborn life.  Because of this we are waiting until the demo is done before we move which means we’re still a week out which means we will be living amongst boxes for another week.  Another weeeeek.     Also our loft complex is currently painting the outside of our place so there are large plastic sheets covering all of our windows adding a dungeon/meth-lab effect to boxes and half painted walls.  It’s very pleasant.  I told Trever I feel home sick, like I’m traveling but I’m not. 

Yesterday I had to let a guy into our place to look at the fire sprinklers and he kind of creeped me out so I left the front door open.  After he left I went upstairs and noticed our cat Grey was not in her usual place of sloth and I started looking for her.  I slowly started panicking as I checked all the usual fluffly comfort spots she’s drawn to for hours of hibernation and she was nowhere to be found.  The panic got worse and I thought, well this is it, this is what breaks us, our fat cat runs away and we snap. 

I opened the front door and she was eating a plant outside.  She can’t resist eating no matter what it is. She gags down these long pieces of grass and they cannot taste good, but she’s committed so at least there’s that. So we haven’t snapped.  Our fat Grey cat is happy and sleeping and we’re marching along.

We currently have two chairs in our living room.  They are kind of in the middle of the room next to the pile of boxes and they’re facing each other like a therapist’s office, if therapists met in meth labs.  Trever and I sat down and looked at each other after a meal of frozen burritos and finally had a second to catch up. 

I’m reading a book called The Benedict Option by Rod Dreher and it’s messing with me. He’s essentially making the argument that the society that caused St. Benedict to create a new Monastic order is very similar to the cultural space we are in now.  He’s not saying we should all be monks, but rather that there comes a time when culture is so in contrast with a Christian way of life that to live fully into our religious convictions there is an element of removal that must happen.  He says, “we will hardly be normal, but we should never have tried to be.” 

Trever and I were talking about this book, about how we want to live our lives, about choosing now what matters and how we want to be as a family. I was saying how the most depraved part of myself wants Trever to be successful for his sake and for mine, so we can travel the world together and spend the summers in Paris and have all these cultural experiences.  That’s what I really want, I want to be rich and pretty and in Paris.

But then of course life throws a few curve balls and we start figuring out what matters in life. We are forced to remember why we’re here and what give us hope.  Suddenly we are becoming conscious about every choice, rather than letting our life float along to an undecided future.  For the first time we’re starting at our destination and working backwards.

We never want to miss God’s blessings revealed in goodness.  Things like the cardiologist now saying Colette's heart is more of a suspicion and less a diagnosis so surgery may not be necessary, or that her omphalacele is a bit smaller than previously thought, hallelujah times a million for every tiny miracle along the way.  And yet we never want to forget his blessing through pain.  His presence in difficult seasons is a blessing unfathomable, something that changes us and gives us a faith we are otherwise incapable of. Trever and I sat in our chaotic dark living room like we were in a bizarre therapeutic session and cried.  We cried because, well partly because we’re stressed, but really because we could have missed it.  We could have just summered in Paris and missed the whole point. It would have been fun, and yet I wonder if we would have eventually come to regret not actually living for something bigger.

God saved us from ourselves I suppose.  What a bizarre gift, something good sprouted in us from a pile of rubble. The blessing is in the miracles and yet it’s in the pain just the same, it’s the grace of God to remind us who we are. So that's where we're at, we're remembering what's written into our DNA, we're connecting with the very breath that gives us life, we're becoming conscious again.  Turns out I don't want to slip back into the mindlessness of pleasure, I really want us to stay awake.  

Meaning

I took a grief counseling class the other day for continuing education.  In an odd way it was a bizarre sort of comfort to be in a class like that.  The educator took a survey during the class to see the number of people who have experienced significant losses and the percentages were far higher than one would have thought.  On the other hand it is rather depressing to spend a day in a room of therapists telling stories of clients who have crumbled under grief. It’s unfortunate that I couldn’t have a glass of wine post saddest class ever.

Viktor Frankl said that despair was suffering minus meaning, and so a large portion of working through grief and experiencing healing is finding that meaning.  In this class however, when we got into the details and stories of how clients found meaning the bottom dropped out.  Things that gave meaning to people seemed to me hollow and almost illusory, methods for coping connected to very little reality.  How do you make peace and find meaning out of nothing but the pain of this life?  The room was in awe of a story of a woman whose father had died and so after he was gone she wrote letters to herself from him and mended their broken relationship. If it works for coping, fine, but it’s thin at best.

Humans have a capacity to construct their own reality and so after loss this can be done as a means of coping, the truth of something is a secondary matter to finding what works. The only substantial meaning making to me however, needed to be connected to more, not just because it works for survival but because it's the only thing that makes sense of it all - and that's faith. Of course the argument could be made that religion itself is a coping mechanism that is constructed to create meaning out of nothing, but then we’re all believing in something I suppose, believing in nothing is a belief just the same.

There were large swaths of my life that I could have gone without my religious beliefs.  They helped me make good moral choices in life but it didn’t necessarily offer any true worldview shifts, encourage radical life change or provide a source of comfort that was beyond what any other non-religious American might experience.   But I’m different now, and there I was in a class on grief and the only possibility for meaning to me was faith.  Faith seems like child’s play until grief forces the issue of meaning and suddenly it is everything else that seems like child’s play.  The only proper source of comfort becomes – there must be more. It’s in our DNA to find meaning, weaved there within the foundational human capacity to reason. And so we have to find it, which I think reveals the truth that it’s there. 

I think about Syria a lot recently.  Every time I pray or begin to pity myself I think of the lives lost in this evil civil war.  I force myself to look at the photos depicting the ravages that have flattened cities and taken countless lives and left its survivors hollowed out from grief. I heard a very OC woman the other day talking about how we can’t just give ourselves to the needs around us because then we would just be empty.  She was making an argument for boundaries, which is fine, and yet I wonder if empty is what we’re meant to be. I don’t mean non-sustainable, dysfunctional or codependent empty, I mean actually giving our lives to the broken among us.  Our boundaries are so locked in we think posting on social media is action. We think churches are for creating well-funded institutions that serve to pat upper-class believers on the back. We think the chief goal of community is to create a safety huddle. We think we’re here to make our lives lovely.

I know this is all depressing, but I think when we look at the actual pain in this life we are forced to feel the weight of the world’s reality, and Lord help us it should move us into action.  It should force the issue of meaning both beyond this life and within it.  What’s our role?  They say the church is hemorrhaging young people and we blame the institution for not being compelling, or being too this or too that. I wonder if instead we shut our rambling mouths and took on the responsibility of living lives of wisdom and action.  Hipness would stop defining our relevance and compelling lives would instead be the draw.

We should make ourselves deal with this, we should connect with the pain around us, we should look at the photos of those in Africa trying to survive a famine.  We should let it get us down as we see an old man in his bombed out apartment in Syria smoking a pipe and listening to old records. I’m writing to myself here because this issue nags me all the time.  I’m moving at a sloths pace towards action and not because I’m supposed to but because I have to. 

I think we can and should let pain change us, we can allow it to move us.  We can engage the darkness for the sake of participating in shedding light. We can do it all in an effort to partner with God in changing the world, all the while waiting for and believing in restoration, all because it’s the meaning of life.

Because isn’t it? 

Reprocussions for the Things

Trever and I close escrow tomorrow.  I forgot how stressful it can be buying a house.  All the loan documents and paperwork is nightmarish for both Trever and my personalities.  Then of course the moving bit has its own unsettling effect.  I woke up in the middle of the night last night and did yoga in my kitchen, which is the only open space in my house, just to ease some tension of living in the aftermath of an explosion of things! We have too many things. I ended up waking up this morning and cleaning my house, which felt like wiping a bit of mud off a pig.  I pushed boxes into corners and made my kitchen and bedroom the safe zones.  I mopped the floors and cleaned the bathrooms, all of which had cycled out of control once the first frame came off the wall, and then I took a nap. 

I need naps recently.  I missed the tired portion of first trimester pregnancy and so I felt like I bypassed the fatigue and pregnancy wouldn’t get me down.  I know all the mothers are internally patronizing me for my adorable ignorance, because of course I now feel like I returned from another time zone only yesterday and just cannot beat this jet lag.  I’ll be in a meeting around 3:00 and could literally close my eyes mid sentence and likely fall quickly asleep.  I have to avoid people with calming and slow voices during that part of my day.

This fatigue however, could also be due to our current diet.  We went to Trader Joes this weekend and bought a bunch of frozen no cook meals for the week in anticipation of the chaos and a boxed up kitchen.  On Monday night I heard the beep of my microwave, peeled back the plastic cover from a plastic plate full of Veggie Korma and placed it in front of Trever.  My granola self looked upon what I had become that night and shamed me for my decisions.  Trever on the other hand was rather happy, like so happy that he told me I was going to have a hard time convincing him to go back to eating the way we normally do. He's noted that lucky for us these frozen sodium packets are low in calories which is an added benefit to death by preservatives.  You see, it might be important to know Trever is kind of ironic by nature.  I was talking to my friend Kayla about this, how right in the center of all his good taste, fashion industry work, fine art degree and general hipness, he’s still from Hemet and would honestly prefer Del Taco and PBR to a client meeting at Nobu. Truth is though, this is actually one of my favorite things about him, shitty towns make good people, sucks the life right out of any pretentiousness.

So, I ate my sodium rich indian food and was grateful in the middle of the craziest season of life we’ve had to date.  Houses are just houses and in the midst of chaos we kind of have to laugh at all that’s happening.  I clutch my round belly in gratitude for a tiny life that has already changed me in ways I could never have understood before.  I pray for her incessantly and can’t wait to make her a home that’s simply walls and a garden but really a place that she’ll feel loved.

I know she already is so loved.  My friends and family have been so kind and gracious and grieved and celebrated with us like she was their own. And to all of you who have been following along with me, I wanted to say thank you for your love.  The grace with which you have responded to me, my writing, and my family has overwhelmed me.  Your continual offerings of encouragement and prayer has been an honest source of support for Trever and I.  It’s been a difficult season and yet there has been comfort knowing the amount of people who have been crying over, praying for and celebrating Colette.  It’s humbling to be the recipient of your love.  So thank you, with all of my heart, thank you. 

And that's a wrap, off to the boxes again. 

Mercy

I’ve never being great about reading the Bible but recently I’ve been reading the Psalms all the time. For most of my life I read the Bible because I was supposed to and I felt guilty if I didn’t.  Then later in life I did it for intellectual and academic purposes.  Now here I am and reading the Bible feels like breath.  The Psalms give me words for parts of me that I hardly know how to articulate.  They give me prayers when I’m speechless.  They help me grieve when I’m tied up in knots. They offer solidarity in the full range of emotions.  They’re a bit of clarity in the chaos.  

It appears I have learned something in all of this pain.  I look back at who I was in early pregnancy before everything went south.  I had just found a newer and deeper sense of faith after a year of intensive spiritual practice and study.  I had chosen to believe. Then we got our baby’s diagnosis and I saw my minds ideas for the thin beliefs that they were.  I got mad at God for a while, I wrestled with the notion of his goodness, muttered wordless painful prayers, sustained the shattering of the delusions I had about my future, and then finally at some point, belief found me.  I was suddenly believing in a very deep part of my soul, it was something that felt profound, something that felt given to me, and something that felt unaffected by life’s cliffs.

I’ve been doing a lot of work to understand God’s involvement in our world, his intervention if there is any, and his goodness and power related to pain and suffering.  In the middle of it all and in my darkest place I had a perspective shift that I wrote about earlier which released me from figuring it all out.  I have found some clarity in the bigger picture of God’s sovereignty, but I have stopped trying to find out the minutia of how it plays out today.

I heard this quote from David Bentley Hart, who wrote an essay in the aftermath of the 2004 Tsunami. 

…of a child dying an agonizing death from diphtheria, of a young mother ravaged by cancer, of tens of thousands of Asians swallowed in an instant by the sea, of millions murdered in death camps and gulags and forced famines…Our faith is in a God who has come to rescue His creation from the absurdity of sin and the emptiness of death, and so we are permitted to hate these things with a perfect hatred…As for comfort, when we seek it, I can imagine none greater than the happy knowledge that when I see the death of a child, I do not see the face of God, but the face of His enemy.  It is a faith that has set us free from optimism, and taught us hope instead. 

That last line of Hart’s quote – It is a faith that has set us free from optimism, and taught us hope instead – it’s all my inarticulate thoughts encompassed. 

We are released, potentially via pain, from the clenching of our fingers around this life.  We no longer need to fight for the perfection of our tomorrows, which will undoubtedly fail us. And once we finally and truly see this, it has the effect of offering a hope that is unaltered by circumstances.  It frees us into joy, and moves us from wishful thinking about our future and into an unshakable hope that exists beyond this life.  But first, we must be pealed back from our optimism, we must have our expectations shattered, and that shattering changes us. We no longer have the luxury and the delusion of the plans we make, so that even when life gets a little easier, our scars will forever remind us that we wait for something more.  Another’s pain we no longer objectify while thinking how grateful we are that at least it’s not us, and instead their pain reminds of what has always been true - that it keeps hurting until the day we’re rescued and then suddenly it’s somehow worth it. 

I was laying on yet another ultrasound table staring up at those ugly square ceiling tiles.  We were doing a follow-up cardiac ultrasound and they were meant to be confirming Colette’s diagnosis of DORV and looking to see if there was another heart condition our doctor was concerned about.  This second condition would mean immediate surgery and likely working with Stanford’s cardiac surgeons due to the complexity of the issues.  Earlier that day I was at breakfast with my Dad in the morning and when Trever picked me up to head to the appointment he had a song blaring from before he got out of his car.  He turned it down but it was a blast of a chorus that says, “for endless days we will sing your praise, Oh Lord, Oh Lord our God.”  I hardly noticed it until I was staring at the tiles waiting for our results and singing the song in my head over and over. 

It was representative of a heart change in me that was given to me and nothing I earned.  I sang it waiting for a doctor to tell me that my daughter would have low chances of survival. I sang it anyways.  I sang it without contingency of a miracle.  I sang it until the doctor interrupted us to finally give us the news, which is a moment we have learned to deeply dread. Then the doctor told us that he had misdiagnosed her and that the first condition was no longer present, and neither was the second, and that she had a narrowing of an artery that may require surgery but is significantly less concerning.

And so what do you say? I weep in gratitude and find myself wordless.  

But certainly God has heard; He has given heed to the voice of my prayer.  Blessed be God.  Who has not turned away my prayer nor his lovingkindess from me.

A Mere Breath

We had an echocardiogram for Colette yesterday.  The doctor told us it would take between 20 and 40 minutes and 40 minutes later when he was still silently staring at the ultrasound monitor I figured it wasn’t great news.  He came back from reviewing the results and said, “you’re baby has congenitive heart disease.”  I don’t remember what else he said except that he kept drawing on this large illustration of a heart.  He said the condition isn’t life threatening and she’ll have a normal life expectancy but then our other doctor, who is likely the most depressing person I have ever met, told us her prognosis isn’t good have both omphalacele and this heart condition.  This doctor is a big advocate for termination so he really likes to lay it on thick.

I spent some time researching and am hoping to move up to CHLA for her treatment as it's much higher in ranking than CHOC.  I found a woman online whose child has the same combination of diagnosis.  Unfortunately her daughter didn’t make it because she was also born early.  I sobbed when she told me. I sob all the time right now.  Then I met another woman whose child has the same combination and just brought her six-month old home from the hospital.  She sent me photos. When I imagine our future I have two narratives playing out in my head.  One where we’re in the hospital a lot and one where we’re home alone.

We fell into our routine of grief.  We sobbed in the office, drove home in a daze, sobbed in the living room, then I went sleep with the TV on and Trever did something productive. We both cancelled all our plans and I thought about quitting my job, moving away, and finding any way to escape life.  Then I remembered the pattern.  Yesterday is the worst, it’s all a blur and shocked grief.  Today we wake up with headaches and puffy eyes, stay home most of the day, cry less, go out to dinner and start to let it settle in.  Then I’ll slowly need the TV on less, we’ll probably see people in a couple of days, we’ll start re-entering life and we’ll start accepting what is. It does get better, I know the pattern and now I know how to ride the wave.  But this time I’m holding her with an open hand, not because I want to but because life has pried my fingers flat. As for that part of it, I’m not sure it follows the pattern. I don’t know if one can make peace with the looming potential of losing your baby, I’m not sure that pain will ever dull.

I met with an former professor of mine this week.  He has been through so much suffering in his life and I needed some perspective.  It was an interesting meeting because I left really encouraged and yet looking back he didn’t say a single encouraging thing about this life.  He has what they call, an eternal perspective.  I think it’s what we’re meant to have, and I wonder if we only are truly capable of one when life becomes too painful to cling to. He genuinely finds hope alone in the belief that the pain of this life will be unworthy to be compared to the joys of the eternal.  He’s banking his life on that, that restoration will make the pain of today no longer worthy to be noticed. 

He didn’t encourage me with talk of miracles (although we keep praying), he encouraged me by agreeing that life is hard and then you die.  And yet true hope cannot be squashed, because although we pray for miracles today, our true peace and belief and promises lie in the hope of what is to come, that whether we live or die we are the Lords.

Because, surely every man at his best is a mere breath, so we have hope only in what is to come, and yet pray for mercy today. 

The Soundtrack

I read this article the other day from a prominent Christian author who, within a span of a few months, had divorced her husband, come out as a lesbian and had her partner move into her home with her children.  I’ve done a lot of studying on the issue of homosexuality and Christianity, but it’s not the issue I really want to write about. 

What was most interesting to me was her strong rhetoric about being 'your true self', which is what she feels she is doing.  There was so much positive encouragement for her on social media, as this was the brave thing to do in the eyes of her readers, and it was. But that was what intrigued me, unrelated to her sexual orientation I was most interested in the bravery theme. I haven't got the foggiest idea what it must be like to be this woman so I'm not making a value judgement about her choices - you do you - ya know?  But it's always interesting to review our culture's narrative and direction. 

I find this 'be your true self' language to be very interesting.  It is very clearly culture’s soundtrack right now and there are elements in this way of thinking that can be truly liberating for people.  The pendulum is swinging from the days of suppression, of keep calm and carry on, of immovable moral and behavioral structures, to something meant to be more honest. So, now we are in a time where the highest thing we can do is be true to who we are. 

I see why culture prizes the true self and I applaud those who have made difficult counter-cultural decisions to be honest.  I suppose it’s an issue of defining terms though.  If we actually mean our 'true selves', the truest thing about us is the person we are meant to form and grow into, it is our best self.  But my suspicion is that when people say, “true self” what they mean is, "do what feels right," the phrases have become almost interchangeable. 

With the latter understanding of the phrase as "do what feels right," it is interesting to me how powerful this message is in religious communities.  I generally think that doing what feels right is rather simple to do.  Most of the time it’s not brave, it’s easy. And although bravery is really important, especially when instilled in children to combat all those school age expectations, but it has to be lived out in tension with other values. From my understanding of Christianity there is a belief that we are broken and made for more, if so, then I think what we should be striving for is our best self. Of course there is grace for the fact that we'll never truly arrive, and we need to be sure that our best self is formed from true heart change and not suppression and behavior modification, but I think we should all be aiming for something better, not the depravity of our basic being.  

I would imagine this 'true self' grows out of our therapeutic culture that bases all understanding of the self on feelings.  They are the dominant theme of talk therapy.  This is my field, but I was trained to think differently and after years of experience I agree with my professors.  When feelings drive decision-making we can value the easy choice over the discerning choice, our desires over true wisdom, and often times the self over the other.  This isn’t to say emotions don’t matter and that sometimes they lead us to the right decision, they do.  We need to understand our emotions, recognize them, utilize and listen to them, sometimes set them aside and sometimes work to adjust them.  But that’s just the point, we can’t always take our emotions at face value as being true wisdom, they very rarely are.

My sister and I were talking about her parenting the other day.  She teaches her kids to have self-control over their emotions.  We talked about the balance of suppression and self-control and how we can teach children to understand their emotions and yet not be solely driven by them. We can teach them self-efficacy and to embrace who they are even when it doesn’t fit the cultural square, and yet to teach them to be truly good we teach them how to change, we teach them to do what is right not just what feels right. 

I’m reading the book Bringing up Bebe by Pamela Druckerman right now. Druckerman is a journalist who moved to Paris with her husband and later had children there. After living in the country for so long she has been able to make some interesting distinctions between common parenting themes in America vs. France. It’s a great book, but what I found most interesting was how few French women she interviewed were able to articulate why they parent the way they do, even though they all carry the same strong themes.  I gather that this is the case because it's very difficult to critique the culture we are immersed in.  When we’re outsiders or foreigners themes are so clear, and yet when we’re within, our norms are unseen like the blue of the sky. It’s good for us to review the background noise sometimes, if for nothing but to stop and listen to what we are hearing. 

Tiny but Fancy

I’m working on some crib research and Trever and I are on VERY different pages concerning the nursery.  Trever prefers wildly uncomfortable and very hip looking housing products. We recently switched out our metal wire chair for a wooden chair that is so deep it necessitates 3 pillows stacked against one another in order for one’s legs to make it to the ground.  Plus as an added bonus - the edge of the chair is a cornered piece of wood that is so sharp, if the chairs current resident doesn’t understand the need for said pillows they will have a very red and painful mark at the mid-point of their calf.  The cats don’t even like it and they like sleeping inside plastic bags. But daaamn if it doesn't look good in that space. It's like a piece of art, for looking not touching. 

I should have known this registry kerfuffle was coming.  When we got married we tried to register together and it was not cute. We weren’t that little engaged couple floating around West Elm squealing over our new home together. No, no, I was walking around trying to figure out what we needed (which was everything) while Trever gave a distracting background narrative the entire time, while constantly articulating the things he was convinced we did not need - not a big fan of clutter. 

It's all deja vu related to baby paraphernalia.  We apparently need 4 grey onesies, some diapers, and a crib (read: dresser drawer pulled out with some blankets). Trever does not feel ok with a chair that rocks, unless of course it’s Eames or some other painful hard material. He would also like to buy the IKEA crib, thus the debate.  I’m pretty sure it’s made from scrap wood and likely gives splinters to any unlucky passerby, one of whom will be our newborn baby.  As a note, I have put together enough IKEA products to know what they’re like when completed, many times they need to be propped against a wall for a source of support lest they collapse like a teetering jenga tower. Yes the ones I like range from $600-$1200, and yes she will not be in it THAT long, and yes that costs more than our bed, but the gold one is just so pretty.  No I don’t manage our budget, why do you ask?

Also I’m going to betray his trust and tell you about Trever's new inventions because I'm not overly concerned about you taking the idea.  You know the soundproof blankets made out of hazardous materials that they use on the walls in sounds studios? Well the world needs a baby version of these so parents can cover themselves and our crying babies on planes and it will silence the noise, potentially via suffocation but that will be left out of the marketing copy.  Also, a one day diaper.  When a child’s diaper needs changed parent need not remove soiled material, clean and replace, they just twist off the bottom of the diaper that contains waste and it will reseal the diaper (think diaper genie directly on baby bottom).

Who knows, maybe we’ll be millionaires off this one day. Ooooh, then maybe we can buy the fancy crib.

Also if you want to follow along on my shopping escapades, you can do so on MY CURATION LINK

The Ballet

No one can tell you what life and love are like.  There are so many things that are simply notions of our minds until we experience them ourselves.  I suppose it’s the limits of empathy, we can never completely put ourselves in someone else’s place, because at some point our imaginations are limited to what they know. 

I’ve learned this about knowing grief.  There are profound experiences I understand via pain that have taught me more than I care to know.  But my capacity for empathy has expanded and thus my capacity to love has as well.   

The same is true of knowing love. Today is Valentines Day. Trever and I don’t make a thing of it, we usually celebrate later in the week when the crowds have dissipated and so have the prices. 

But 13 years ago was our first Valentines Day and our first real date, I was 16 and he picked me up at my dad’s house in Anaheim Hills wearing a suit that was likely two sizes too big. I was wearing a choker necklace representative of the circle of life, or the circle of fashion, as it were.  We had been together for close to a year at that point but because of my age, or more likely because of his (20), we had to wait to officially date. But finally on February 14th, 2004 he took me to the ballet and after we drove to the beach blaring Deathcab. 

I look back at us and what we were, and as beautiful as it was I’m amazed at the distance we’ve come, amazed at the life we’ve lived.  Somewhere along the way we learned to love, which has a lot to do with choosing. But I think more than that we became capable of love as we knew it from each other, it seems that I had to be loved to be able to love in return.

And then to motherhood. I’ve watched so many of my friends melt into puddles when they became mothers and I could not seem to attain a sense of comprehension for what looked like a loss of self from my view.  And yet now there is a scary love growing within me, a love for one who never could have loved me first. Tiny arms and legs keep kicking me all day and every time it happens I am nothing but a mother.  

I can only assume there are unknowable depths of love as we live life. I find it interesting that this one word holds so much.  Something that swirls itself in and through our beings and lives and attaches us to those around us.  As it intertwines itself and unites us to others our beings become less and less singular and more and more a piece of connection, and ultimately the connection itself is what we’re made of.

My dad wrote me a letter today.  He outlined bits of my life and like a poem ended each stanza with, “and then I loved you more.” I sobbed. I’ve always known he loved me and yet only now do I know that I never ever came close to really knowing his love. I’ve expanded a bit and can now begin to grasp a little more of what I thought I always knew.

I hope this is true of the divine, that we are incapable of understanding the depths of love One has for us. As we grow in love through friendship, family and marriage, I can only assume that by the slow growth of love over time can we come close to comprehension and even then fall extraordinarily short. 

Happy Valentines Day.