A Place in the Family

i was nervous about announcing this pregnancy just like my last pregnancy with miles, and essentially for the same reason - that people would forget noah and his place in our family would be lost.

and it didn't take long for my fears to be realized. on the day we told our immediate family we heard, "how do you feel about #2?" and "yeah, you don't care as much about not eating deli meat with the second, huh?"

these comments were very painful to hear. it's like a little shock to my heart. if noah were here no one would EVER say something like that. i've been pregnant THREE TIMES. hello!!!! is noah's entire existence erased from your memory?

but it also frightened me because i sort of expected these types of comments from distant friends and acquaintances, but hearing them from close family? it made me brace myself for what was to come when our announcement went "public."

however i don't blame them, or anyone who says something like that to us. it's understandable because sometimes our brains are just dumb, and we have a momentary lapse of smarts. i trust that those nearest and dearest to us love and remember noah deeply.

i also can't blame them, because my brain is just as dumb.

months and months ago i made a comment to a dear friend of mine, on national sibling day, something about "happy only child awareness day." it was a joke. and we have made only child comments to each other a million times, for as long as i've known her. i know she identifies with being an only child, but she isn't one. before i knew her, she lost her brother when she was young. i pretty immediately realized my horrific mistake in telling her, "happy only child awareness day" on national sibling day when she had LOST HER BROTHER. i felt so embarrassed and ashamed. i should have known better. especially me, of all people, should have known better. i preach loss sensitivity to anyone who will listen, and here i was....

momentary lapse of smarts.

i know it's hard. we see miles. we don't see noah.
miles will basically always be the oldest, but noah is the big brother.

and where does baby isaac fit in? that's a really tough one for us. and, just so you know, in case you're wondering, we consider baby isaac a part of our family, but it's tricky sometimes to call him our son. just being honest. and we're still trying to figure it out. however, if he's included as one of our children from another person (like say, in a card or conversation), we are honored and don't find it odd or alarming.

it's damn confusing. i know.

so there's grace all around.

however, we're doing our best to keep both noah and baby isaac's place in our family special and sacred. they will never lose their spots.

...

i'm realizing, again, for the millionth time, how jealous i am of families who don't have to deal with all this confusion because they have very straight forward birth orders. it makes my heart hurt for us.

heavy sigh.

i'm also very aware of how jealous i am of people (me being one of them when i was pregnant with noah) who get to go into their "big, 20 week ultrasound" with the only care in world being, "boy?!?! or girl?!?!?! bahaaaaaaa! i can't wait to know!!"

our anatomy scan is in a couple days and although this pregnancy compared to miles' is drastically less fearful, i find myself increasingly anxious leading up to this ultrasound.

i wish i could just be lighthearted and excitedly wonder about whether baby is a boy or girl. and have that be my only worry in the world. but i frankly don't really care.

what i care about is four chambers in the heart. a growing brain. and everything else the baby is supposed to have.

and although there's no way to know from an ultrasound whether baby has the condition that took noah's life, i know all too well there are so many other things that could.

but, and here i go into the positive self-talk, i trust that no matter what happens - it is well. we've been through the worst life could throw at us and we're still standing, still choosing to press forward in our quest for love and family and babies. who knows what the future holds, but i do know that because of what we've experienced in the past, the future holds hope that we'll be okay.

and to the third sweet one to live in my tummy, we love you. we do. no matter what. girl...boy...kitten...whatever...you're ours.

and you've now got your special place in our family. forever and ever.

A Toast to Love

john and i attended a wedding this last weekend. on our anniversary.

and it was awesome.

it probably went down as one of our all-time favorite weddings we have ever attended.

one of the sweetest moments that made my heart swell to capacity was when the two best men (the groom's brothers) gave a toast together. it was everything an amazing toast should be. engaging, hysterical, a bit humiliating to the groom, and a love displayed authentically in ways we rarely see.

i remember thinking, if i were their parents i would be unbelievably proud. brothers who genuinely love and respect each other, stick up for each other, and can express their admiration of each other to each other. it was a beautiful thing to watch.

and then my heart ached a little.

at the end of night, my heart ached again, as i realized for the millionth time, how much of a profound impact noah has on my every day, every waking moment of, life.

the groom got up to thank everyone for coming and said, "we realize this is the only time in our lives where all of the people we love will be together in one room. and that is so special."

he's right. that is so, so special. and i would have said the same thing on our wedding day. but he's wrong. at least, in our experience.

we had a baby that died. and noah's memorial service where we celebrated his life was in the same room where john and i said our marriage vows and celebrated the beginning of our life together. and it was eerie, and weird, and mind-blowing, and out-of-body because the room was filled with almost all of the same people who were at our wedding. the circumstance was obviously different, but the love felt the same. the reason all these people in our world were brought back together was just another side of the same coin.

the beginning of a marriage is so hopeful. the start of an amazing, wonderful life. we'll have lots of kids. we'll grow old together. a happily ever after. i don't want to say we're all a little naive at the very beginning. but, yeah, maybe a little naive. (as probably it should be!)

had i been able to, i surely would have written a different story for john and i. a marriage without so much tragedy and heart-break. less fear. less stress. and for god sake's, less loss. to be perfectly honest, i look at some other people's marriages and think, how in the world did they get it so easy? obviously i don't know what goes on behind closed doors, but from the outside, some people's lot in life seems pretty damn good.

but our story is ours. only ours. and i'm proud of us. because of the hell we've been through, and still find ourselves in, we're becoming stronger. i can feel it. and as we persevere, we choose to keep loving, even when it looks ugly. there is still joy. thank god. there is still joy.

we're different people now than the wee ones we married five years ago, but that's okay. because we're still together. we are growing and changing together. and accepting the other however they come (at least trying to). and there isn't one moment in any day that i don't take the john butler i married or the john butler of today for granted. because i know all too very well that life is frighteningly fragile and we are not guaranteed any tomorrows, i will say yes to john butler for as many tomorrows as i'm given.

and as insane as this sounds, sometimes i'm grateful for what we've been through because we have seen things and experienced things in our marriage that others don't even get to scratch the surface of. an intimacy that can't be duplicated any other way, but through huddling together on an island of sorrow only we know.

to sum it up so perfectly only in the way she can, the following were words written and spoken by one of our dearest on the night of our wedding.

and with my blinders off and my nativity shot, i say:

so be it.

Miracle Miles Wasn't The First

on june 18, 2013 we realized we didn't get the miracle we were all hoping and praying for.

noah died. he was not healed of his fatal disease.

every single moment during those 12 days noah was so, so sick, i wanted so badly to believe that he would recover, would get to come home, would become a living testimony of the wonderful, amazing and powerful God we prayed to. i specifically remember one time in prayer weeping the words, "....heal noah, and we'll give You all the glory." with every shred of faith i could muster, i poured my soul out to God. repeatedly. i begged. i pleaded. i surrendered. i believed.

i had hope. maybe too much.

the miracle, as i imagined, didn't come.

like any other relationship in my life, when i'm hurt by someone i shut down. i shy away. i close them off. i'm afraid of getting hurt again. so obviously when The Biggest, Most Important Relationship of My Entire Life and Being seemingly turns away, doesn't intervene, and allows for the greatest disappointment i will ever know - my darling, {desperately long awaited, all i've ever wanted} boy's death ... it shattered me.

it is for this reason, to this day, i sort of avoid God. He's there. i know. i just don't look at Him straight in the eye. or speak to Him directly, let alone ask for anything. too risky. i've already presented my most sacred petition and was met with, from where i stood, silence.

but last night something beautiful happened. i prayed for someone i love very much who is hurting. i still wasn't able to ask God to change her circumstances or give her this or that or whatever. but i just was silent for awhile. still, in His presence. listening for what He had to say. for her. for me...

and i felt love. i felt peace. and in a war-torn, mess of a heart - that's a miracle.

miracles are so tricky. there is so much more i don't understand than what i do.

as i go through this confusing faith journey with a God i love but am not really on speaking terms with, i have become more and more convinced that prayer isn't about asking as much as it is about simply receiving what has already been given.

and what i know for sure, (and don't quote me on this, i'm a bible school drop out) is that a miracle is so much more than an answered prayer - a glorious, praise God, Hallelujah(!) moment. i mean, it is that. however, i have come to understand, and know firsthand, that a miracle is whenever God shows up and answers a prayer i didn't even know i had, or wanted. because He's pure goodness. pure Love.

when i was pregnant with miles he acquired the nickname, "miracle miles." and while i 100% agree and have completely embraced that truth, i never forget he wasn't the first.

it would have been easy to say noah's life was a miracle had he been healed from ACD and were still with us today. but it would be impossible for me to deny the millions of miracles that have occurred because noah lived at all.

relationships, two specifically in our immediate family, that were filled with (speaking for myself) misunderstandings, bitterness and brokenness, completely restored. healed to a point of no recognition. pure miracle.

countless stories of people who's lives are changing and faiths deepened.

a greater clarity (like the type of clarity i know and feel down to my bones) of what friendship and love of others LOOKS like, in action. because it was shown to us.

the pure fact i'm still alive and not bitter beyond recognition. 

....for these and the millions of other seen and unseen, known or never known reasons - noah's life was a miracle and his legacy continues to be a miracle. 

a miracle, no matter how grand or how slight, is but a glimpse. a peek into heaven. a reminder that this world, with all it's pain, retirement plans, and superficial bullshit, is not all there is. there is so much more. beyond what we could ever possibly know right now, on this side.  

so God, this is my humble prayer: show up. and may i be brave enough to have the eyes to see where.

"miracles are your memorial,

the promise of wonders to come"

-greater than all, hillsong

Just Doesn't Feel Right

there are some things about grief, and how it manifests itself in my life, that i don't even notice until it's brought to my attention.

i had the "ah-ha!" moment in support group a few weeks ago. one of the other mothers in our group mentioned offhandedly that she hasn't really worn any color since her baby girl died. i hadn't even noticed. but it was true. every time i saw her, she was wearing black or gray. and you know what she said about it?

it wasn't really a conscious decision that i made, 
wearing color just didn't feel right.

hearing that, i may have very well gasped. like so many other times in our support group, i heard words only heard in my heart coming from her.

up until very recently, i hadn't really listened to music at all since noah died.

when i drove in the car, the radio stayed off. silence.

i had no idea of any new albums being released, let alone make any sort of effort to get my hands on them. completely out of touch in that whole, entire scene.

i don't even really know where i would find my iPod.

leading worship. listening to worship music. what was once a huge part of my life and my identity. gone.

this was not a conscience thing. i never said to myself. i'm just not going to listen to music anymore. that's that. it wasn't like deciding to become a vegetarian. i had no reasons or justifications. i obviously didn't even really notice it was happening.

music just didn't feel right. almost offensive even.
maybe i felt just too vulnerable. like salt on an open wound.

grief is so weird. it changes you. changes you in ways that most of time you don't understand.

as i've been thinking about it... like, what in the world? why did she stop wearing color? why did i stop listening to music? i'm pretty sure it comes down to how we experience life's beauty. for whatever reason. and how we are physically unable to, in certain ways, when we are literally heartbroken. i guess our souls make decisions for us sometimes when we're trying to survive.

simply said - it's just not as easy to experience joy now. at least not in the ways it once was experienced, before our worlds were shaken off their axis. and in the places where sweetness and light naturally show up in life (ie. color or music) - grief does what it does. and smothers joy wherever it can.

i still have joy. it's just different. it looks different. feels way different.

because i'm different.

when a woman buries her child, 

everything she does is colored by that experience.

there's a hole in her soul that changes who she is.

-iyanla vanzant

***

lately, by some miracle, music has quietly, without fanfare, crept back onto the scene.

sufjan stevens' carrie & lowell,
mumford and sons' wilder mind,
bethel's we will not be shaken...

they're speaking my language.

dark. often mysterious. with rays of hope.

as is my soul.

The Delicate Balance: Heartbreak and Hearthope

i think about blogging everyday. there's so much i'm feeling and churning around in my little brain that i could write and write and write and never run out of content.

but it's like i lost my voice. i don't know how else to describe it. 

i've gone hoarse screaming for the last two years. trying to communicate, in any way that makes sense, what a broken heart looks like, feels like. 

it's exhausting. so i went silent.

i also went silent because i bought the lie that people don't care anymore. the drama chasers and sob story enthusiasts are all but gone, on to the next tragedy. our story isn't as exciting anymore. our "happy ending" came so ... 

booooorrrriiinnnngggggg. 

but i refuse to let that lie linger or feed it in any way by going silent. because, my friends, i must give voice to our experience and remember why i started writing publically in the first place.

it is my desire that this blog, these simple words on a computer screen, will somehow bring healing, comfort and hope to each person who stumbles upon them... and i pray to me too.

maybe i'll post everyday. maybe i won't. but what is for sure is that i will share my heart. my questions. my joy. my confusion. my pain. and my Jesus. i would love for you to join me as we journey through this mess of loss ... it may not always be pretty, but it is real. (first post, 7/16/13)

here's the reality - the last couple months have been the absolute hardest for me since immediately losing noah. we're talking panic attacks, deep depression, weeping, unkindness to my husband, and unbelievable fear and stress. there are a variety of circumstances that heightened these emotions... (an arrival of a brand new niece, managing family expectations, dealing with disappointment when he's seemingly forgotten, seeing people who were pregnant when i was pregnant with noah welcoming their second baby...all these each blog posts of their own), but they are all rooted in the same truth: 

i miss noah and i want my other life back.

i grieve that i'll never get to say, my family is complete. 

i'll never get over how hard it is to hear, can we get a picture with the whole family? no. no, we can never. because my whole family is not here.

in processing with my support group and others who have experienced infant loss, i'm learning how seriously God-awful approaching the two year anniversary is. and let me tell you, from my experience (and that's the only one i can speak from) it. was. hard.

but now i'm in it. we're here. noah's special days. the 13 days he was alive on this earth were two years ago right now. june 5th - june 18th 
#13daysofrainbows

and it's still hard. memories of those beautiful, perfect first 24 hours he was healthy and the hellish 12 days that followed. pure hell in its truest form. 

but of course there was beauty too in each one of those 13 days of 2013. because noah.

that delicate balance of heartbreak and hearthope reminds me of yesterday. 

yesterday we celebrated miles' first birthday. (his real birthday is tomorrow, but yesterday was saturday. so..) 

there was family. there was swimming. there was cake. there was joy. it was a sweet time.

however, as i cried on the shoulder of my ever-patient husband that night. i realized again...

even when i'm happy, i'm sad. 

everything i have reminds me of everything i don't. and everything i don't have reminds me of what i do. all the time. 

here's just one small way that translates into my daily life.

for miles' party i made one of these blackboard poster things:

it's made with metallic markers drawn on a poster board. a poster board that i had had in an area we keep a lot of noah's special things. it had already been purposed for something else two years ago and it wasn't until a few days ago when i put it in my kitchen window to display, that i was outside and caught the other side.

seeing it, my heart literally lept out of my chest. there was my sweet noah boy, almost life-sized and right there in front of me. (for those of you who attended noah's memorial service, you'll remember it was one of the pictures displayed.) 

and did you notice another precious little boy in the picture? in the window reflection?

when i had grabbed my phone to take a picture of this noah moment, miles ran across the shot behind me, right as the picture took.

it made me smile.

i see noah everywhere. and everywhere i see miles.

this one picture so amazingly represents my simultaneous heartbreak and hearthope that i feel every day, but especially today on the eve of miles' first birthday.

miles is here. and we got him for an entire year. (and i can only hope for a hundred more.) he's filled with joy, wonder, curiosity and love. i literally cannot contain my thankfulness that he's getting older and i get to witness it up close.

however, in the same breath, noah is not here. he will forever be a tiny, tiny baby who lost the chance to grow older. we'll never know how he would've been as a toddler or a big brother or a son. we only can imagine. every year that passes will be another year we didn't get. and that pain is deep. 

i have a one year old and a would-have-been two year old.

so i will never understand when someone is actually sad to see their baby grow up. my sweet baby is growing up! *sad face* 

or what completely messes me up is when someone actually says about their child, stop growing up! 

now, i get it. i understand the sentiment. our children are dear to us and a preschool graduation can really open the water works on that. i really do get it.

but for christ's sake, isn't growing up the whole point?!

i already know what it feels like to have babies who will never grow up. and trust me, forever babies are not that great in reality.

so, miles. my birthday wish for you:

keep growing. 

grow strong and healthy. 

continue to be that joy and light spreader that you are. 

and your mama and daddy will cherish every stage of life you have, only excited for the next.

you go, dude. keep having birthdays. we're cheering you on all the way, everyday.
happy birthday, miles.

and always. happy birthday, noah.

I Love You, Wonky Head

before noah was born a dear friend gave us this book as a gift.

it is a super cute book about a little boy who imagines up various scenarios (mama, what if i were a big, scary ape?) and his mother patiently and creatively reassures him that she would care for him no matter what (or who) he was.

we had no idea how special it would come to be.

pretty immediately when noah was admitted into intensive care at seattle children's he was given tons of fluids, which made him extremely puffy. we wanted so badly to talk to him, for him to hear our voices, but we ran out of things to say pretty quick. we also had jelly-brains and coming up with any collection of words that made a lick of sense was rare. reading became an avenue to communicate with our boy. and i love you, stinky face was one of the stories noah heard as he slept.

sometimes i changed the words to i love you, wonky head.

after reading it at noah's place when we put him to rest there, the book was put away and i had no intention of reading it again. it felt like noah's special story. or maybe it was just because i was afraid i'd get too emotional if i read it again. 

then a few months ago i realized those were kind of stupid reasons and i really wanted to share it with miles. it's a sweet story and miles deserves to hear it too. 

so now miles is hearing the same i love you, stinky face story (multi-daily). and as i read it i'm always reminded of noah. it's a tender, albeit small, thing these brothers can share.

the story is also my mantra for how i want our children to know love and acceptance. 

"but mama, but mama, i didn't get accepted to college. will you still love me then?" no question. 

"but mama, i don't want to be in choir or play football." fine with me. i'll look forward to supporting you in whatever you decide to try.

"but mama, but mama, i'm gay." great. now, where did you want to go for lunch?

every parent has hopes for their children, and john and i are no different. jesus-following, generous, and loving to others are all values we desire in ourselves and our children. but we believe it's of utmost importance to cultivate an environment where each of our children knows without a shadow of a doubt they are loved without condition. that's on us. (and if you secretly asked any of our children which one was "the favorite" it's our hope they all would answer, "me.")

my love for each of my children is as unique as they are.

my heart breaks that i will never know the boy and man noah would've grown to be. would he get thrilled by the siren of a fire engine? would he hate mushrooms like his daddy? would he use his life to make a positive difference in the world? well, that i know. and that's a resounding YES. i'm infinitely proud of noah and love him without borders. and always will. he did no wrong in my eyes. the only thing i'm disappointed in is that he wasn't here longer. but that's not his fault. he's my boy and is perfect. forever and ever amen.

i'm eternally grateful that i get to watch miles become his own sweet-one right before my eyes. every day i learn more about who he's created to be and i'm in love. he laughs on the swings, playing the piano and when daddy throws samson's toys. when he gets excited he shakes and screams, "AHHHH!!!" he prefers to drink from adult cups. he hates the pack 'n play. he shows affection by putting his forehead on mine and closing his eyes. he is my heart. and there's nothing in the world that will ever make me love him less.

not even if he were a terrible meat-eating dinosaur.

A Single Thread in a Tapestry

a year ago today, in the early, early morning, we received a call from the hospital. the call you never want to get.

we awoke with the news:

you better get over here soon. 

it was only the fourth day we had been in alexandria, louisiana. i went to bed the night before actually feeling quite hopeful.  we had visited our cajun cutie that evening and were given miraculous news - his white blood cells were increasing at a rapid rate. for the first time since we arrived i actually felt like maybe he would get better. maybe we would be able to take him home.

no. we would not. and we knew it the moment we got that phone call.

we got ready to go in silence. there was nothing to say.
down the hotel elevator. silence.
the five minute drive to the hospital. silence.
we knew.

in the wee morning of january 6th, 2014 we entered baby boy isaac's room to a host of people gathered around his bed. his tiny, tiny five pound body laying lifeless. the nurses were doing chest compressions and providing oxygen. but he was clearly gone. 

no human is supposed to witness what we were witnessing. it was, by far, the most traumatic thing i ever had to watch, and endure.

the reason they were keeping him alive was for us and for his birth mother - to say good-bye. 

i wanted to scream, "JUST STOP!!!! LET HIM GO!!!!" 

but we waited. it was not my call to make.

it felt like forever when ms. isaac finally arrived. i recognized the look on her face immediately. complete and utter shock. insurmountable fear.  

in that moment, my mother instincts took over. for her.

i held her. i held her while she held him. i cried because she cried.

i knew the realm of pain she was feeling. a child she carried and bore. flesh of her flesh. i knew.

she had no one there with her. no shoulder to lean on. no support. we were her support. we helped her make the awful, after death decisions that no one should even remotely have to think about.

we sat with her.

and then we drove away and never returned. only keeping in touch with her via text a few times a year.

it's almost impossible for me to reconcile in my mind - why?

why us? why did she pick us? of all the couples?
why did he die? of all the babies to adopt? why him?

was it worth it?

i don't know. it's too painful to think about.

(*and you can leave your "God's plans" theories to yourself. please and thank you.)

this last month has really been the first time i've allowed myself to process what happened. when baby boy isaac died, i was pregnant with miles. and, in order to survive, in order for me not to go completely insane that TWO babies who were supposed to mine, were not with me - i had to believe miles was going to be okay. he had to be. that was one of the sweetest gifts baby isaac gave me. the gift of believing and hoping miles would be okay. i can't explain why. it's a mystery.

there was a shift in my mind that day.

baby boy isaac's short life brought many gifts, most of which i still don't even know or will ever be aware of until heaven.

what i am most proud of, however, is that hundreds of people know and love our sweet boy because john and i took the unbelievably fearful, nonsensical, yet hopeful, step out and opened our hearts and home to welcome him into our family.

and you opened your hearts up to receive him too. thank you.

because of that, a little, little babe born in a tiny town, alive for only five short days is known.

he's remembered. he's wanted. he's loved. he's part of a family.
he's part of eternal significance.

and i can't wait to see him again. big ears and all.

"a single thread in a tapestry, though its color brightly shines

can never see its purpose, in the pattern of the grand design"

Joh'Wayne Kameron Kahlil Isaac

1/2/2014 - 1/6/2014