i'm not skilled to understand

I am not skilled to understand

What God hath willed, what God hath planned;

I only know at His right hand

  Stands One who is my Savior

i've been having a hard time lately reconciling God's perfect and powerful sovereignty (that He has complete control over the entire universe) with the fact that noah died, and God seemingly did nothing to stop it. 

and considering i barely have enough space in my distracted-cloudy-what day is it-brain to remember my lunch or construct a coherent sentence, this is probably the best time to ponder a few theological questions that have been asked for thousands of years by the smartest minds ever. ha.

but it's literally driving me crazy. how could a God who holds the world in His hand, the world HE created out of dust mind you, not intervene and heal little noah butler's lungs? or better yet, made sure noah didn't have the rare disease in the first place? c'mon, God. it's not that hard. 

all my life i have believed in a God who heals, who performs miracles. He gave a blind man sight, turned water into wine and conquered death on a cross, after entering our world of sin. He's a God who intervenes.

surely, my God is ABLE. 

so it's not that God couldn't heal or save noah, it's that He didn't.

and this is where my thoughts on the matter dead end. because how can that be? isn't God loving? what happened to God IS Love? because, in my mind, not saving noah from death doesn't seem very loving. in fact, quite the opposite. 

we prayed desperately for noah all throughout the pregnancy, for his protection and health. so did we just not pray hard enough or in the right way? how does God 'decide' who gets a miraculous healing and who doesn't? who gets a healthy baby and who doesn't? and why?

i realize i'm asking a lot more questions than coming up with answers. #sorrynotsorry

but here's what i do know, and what i base my weary life on...

the God of the universe, Who holds the keys to the secrets of history and time, loves me. 

that in itself is hard to fathom. but what Jesus did on the cross proves it.

He loves me not because of what i did or didn't do. how i prayed, or if at all.

but by grace. 

i don't understand it, but i accept it.

i may never know, this side of eternity, why noah died. Lord knows, i don't understand it. but, with shaking hands and tear soaked eyes, i accept it. 

i trust You, God, so i trust You with noah.

 

so it's probably best that i'm not skilled to understand the workings and wondrous mysteries of God. because if i were able to, i wouldn't want to put my trust in a God that small anyway. 

Noah Bear

lately i've been grieving the loss of noah for more than just me and my husband. obviously there is a huge hole in our hearts and our own family, but i'm realizing we aren't the only ones missing out on noah being here. he's not only a son, but a grandson, a nephew, a cousin, a church member, a buddy.

he's also a cous-twin.

my husband has a twin brother. and his twin brother's wife and i were pregnant at the same time. (we also both started dating around the same time and got married within a few months of each other, too. what can you say... they're twins.)

we also were both having boys. their sweet nash was born 3 months before noah and his mommy and me were super excited for them to meet, dress alike and obviously become best buddies.

my husband's parents have their 40th wedding anniversary this summer and 'us kids' had planned for months that we would take them away for the weekend to celebrate. and last weekend was that weekend.

i had spent many months building up in my mind how wonderful and exciting it would be to have noah with us on that weekend... to be the newest member of the family for everyone to get to know, and especially to hang with his buddy nash.

it just so happened that the day before we were to leave for the weekend, my husband and i went to our first support group. every person there had lost a baby. i hate the reasons that brought us all together to that meeting, but i'm thankful for the encouragement we can give each other. knowing you're not alone is a powerful healer. anyway, near the end of the meeting i offhandedly shared that i was a little nervous about going on a family weekend that was happening the next day. noah was supposed to be there and i knew i would probably be a wreck.

our support group suggested we bring a stuffed animal that represented noah and it could be sort of a "stand in" for family pictures and such. this brought me so much comfort and i'm not really sure why, it's a little silly logically, but, to me, it's a physical reminder that noah is a part of our family and there is a special space for him.

we immediately knew the little guy who would join us that weekend to stand in noah's place. while noah was in the hospital, his sweet nurses suggested that we bring in some stuffed animals for him to cuddle with. and this was one of his buddies who was keeping him company 24/7.

so during our family weekend, this happened...

Our cous-twin picture, Noah + Nash

luckily you can't really tell, because nash's mommy and me do a good job hiding it, but we're bawling.

i can't tell you how much this picture meant to me, in that moment.
noah was remembered.

noah is remembered.

as all noah's cousins grow up, they will learn about this amazing little boy who was alive on this earth for only 13 days but is alive and well in our memories forever. and the noah bear will help us do that.

and maybe, God willing, noah will have siblings who'll fall in love with him, too.

Soul Scream

i've always been prone to nightmares every now and then. they're usually about someone breaking into the house or me forgetting to do something really important like take a test or memorize lines for my role as belle in beauty and the beast.

once i had a nightmare where my husband was trapped in a hole or something and i couldn't help him. i woke up sweating and panicked. it would take a few seconds, but i could always calm down from even the worst nightmare - especially when i heard my husband patiently saying, "it's okay. it's just a dream."

a few nights ago i had a dream my baby died. i don't remember the specifics of the dream, but i know i let out the most gut-wrenching scream, like every bit of my being needed to escape from my body in that one scream. then i woke up. i had the same feelings i always do when i wake up from a nightmare - i was panicked and frightened - but as my husband held me saying, "it's okay. it's just a dream." i could not shake the 'nightmare' feeling. then it hit me like a semi truck. i can't shake it because i'm living it....

i'm living my worst nightmare.

i laid there and cried. it's not just a dream. my baby died. my sweet noah. i can't just wake up with relief that the nightmare is over.

when the morning finally came, i had to go on with 'business as usual.' unfortunately we weren't in the comfort of home, so i couldn't just lay in bed all day. i had to go on. i had to pretend. i had to put on the mask that everything is okay.

but it's not okay. my soul is screaming.

i realized that the gut-wrenching scream in my nightmare is the scream i feel in my soul every minute, i just don't let it out. while others are laughing, talking about the weather, getting breakfast ready, i literally want to scream, "MY BABY DIED!!!!" and stifling that scream feels like trying to keep an enormous flotation device under water. it's exhausting. it's maddening.

i want joy again. i want to be normal. i want this dark cloud lifted from my soul so i don't feel like a zombie 21 hours of the day.

i want to cook a decent meal for my husband and me. i want to giggle with children. i want to chit chat about how the mariner's are doing. but i can't.

i'm not the mccayla i once was because i have a new reality now. my baby died.

I Declare

it's all too easy to believe the lies.

i deserve to suffer. for this to have happened, i must have done something to make God mad. noah's life was a waste and i was pregnant for no reason. i didn't do enough to keep noah alive longer. i caused noah to become sick. no one cares about my pain. i'll never have another child that i love as much as i love noah.

lies. i know. but they creep into my mind like savages trying to take over. sometimes they are sneaky-like and i barely notice them and sometimes they terrorize.

i do believe that it is okay, and necessary, to go through all the feelings and emotions that loss brings. i don't want to go 'around' the loss and just pretend like everything is okay - so that means daring to ask the hard questions and allowing myself the grace to wrestle with the answers. darkness will close in, that's to be expected, but i pray it doesn't settle in and make itself comfortable.

about a week ago i had one of those moments where i felt like my soul was under attack. i couldn't get my thoughts straight and i felt overwhelmed and hopeless. so to gain some sense of control i just started writing down everything i believed, or wanted to believe. each thought came quickly and boldly...almost like it was my spirit writing, not my hand. (if that even makes sense.) and this is what i wrote...

I DECLARE...

...Noah's life changed the world. He matters. His birth was not in vain. 
...God's promise has not changed. He is the same yesterday, today and forever. (Hebrews 13:8)
...John and I are Noah's parents and we will be parents again.
...I am a mother. 
...The evil one has no place in my mind, heart, emotions or body. I am God's and belong to Him.
...God is good. He is faithful.
...God's mercies are new every morning.
...I did not do anything to deserve this. 
...We did all we could to save Noah. There's nothing else we could have done.
...Noah is at peace.
...There is nothing to fear. Death has been defeated. (2 Timothy 1:10)
...No negative or destructive thing will come from Noah's life.
...God will continue to work all things for good in this situation and our lives.
...Our marriage, family and friendships will only get stronger and more filled with love. 
...We will hold onto hope and trust God is present, even when He feels far.
...Anger and bitterness will not take root in my soul. 
...Noah's life will continue to bring light and love to others all our days. He will always be remembered.

there was something incredibly powerful about speaking to the lies directly. it shut them up. it reminded them, and me, Who's boss. i desperately need that reminder.... i think we all do.

i continue to go back to these declarations day after day to re-read over and over and over. because the battle is still being fought in my mind.

but even in my own battle, i find peace knowing that the ultimate battle has already been won. my God has already kicked the evil one's ass. and i stand in victory with Him today and everyday.

you do, too.

I Can't Imagine

"i can't even imagine what you are going through." ***

over the last few weeks i've heard that sentiment many times from very loving people. and though it brings a certain comfort - because they have put value to the depth of our loss - it also is a stark reminder that my husband and i are experiencing what most people "can't even imagine."

last sunday i walked into church feeling very fragile and vulnerable. immediately i saw a tiny newborn being held by his parents. oh, my sweet noah. then about 10 steps away from them i saw another newborn sleeping in a stroller. it was like getting sucker punched. bam. bam. so after only being in the building for maybe 20 minutes, i turned around, walked back to my car and drove home. the entire drive i felt the heaviest weight in my soul. the burden was almost too much to bear - literally an unbearable pain that i don't feel like a human being has the capacity to survive.

how is it possible that i'll ever get through this? it's too much.

it seems impossible that the type of pain that most people "can't even imagine" is what i endure day after day. if it can't be imagined, how am i supposed to live through it?

there was a specific moment when i remember feeling a similar weight - but it was of love, not pain.

noah had been in the hospital for about a week and my husband and i were at one of our lowest points. we felt helpless, scared and exhausted. then my amazing husband gave us some much needed perspective... would we trade this entire nightmare of hospitals, bad news, and a critically ill son for no baby at all? and we both emphatically answered, with not a second of hesitation,                                                                                                          NO (to the hell to the) WAY.

here's what i can't imagine - noah never being born. even though we have experienced absolute hell in the last month and a half, i would go through it a million times over for a little boy named noah hudson butler to be on this earth. he's worth it. he taught me that my capacity for love, as a human being, is far beyond what i ever could imagine.

i'm grateful for the unbearable pain, because it means i loved - and i continue to love very deeply.

"When you are sorrowful, look again in your heart, and you shall see that in truth you are weeping for that which has been your delight." (Khalil Gibran)

***please, please, please hear me on this... if you have ever said, "i can't imagine" to someone who is hurting, do not feel like you said the wrong thing. you did not. the wrong thing would have been to not say anything at all. you said something and you said it with love. there is no fault in that at all.
okay. glad we're clear on that :)

The Holiest of Days

"Whoever dwells in the shelter of the Most High 
will rest in the shadow of the Almighty. 

I will say of the Lord, 'He is my refuge and my fortress, my God, in whom I trust.'

'Because he loves Me,' says the Lord, 'I will rescue him; 

I will protect him, for he acknowledges my name. 

He will call on Me, and I will answer him; 

I will be with him in trouble, I will deliver him and honor him. 

With long life I will satisfy him and show him my salvation.'"

(Psalm 91 - Noah's Life Verse)

one month ago today. june 18, 2013. what a day. it was the day we found out there was nothing more the doctors could do to help noah get better. it was also the day noah traded life support for life everlasting. and we had the privilege to be there when it happened. it was the holiest of days.

if i had only one word to describe that day it would be - joy. i know that sounds insane. (and to be honest, i probably am only a couple tweaks away from insanity at any given moment these days.)

but after 12 days of being separated from the one living under my heart for 9 months, what other word can you think of to describe this?

joy because of love. and please take note of noah's daddy's face in the background. he knew how much that moment meant to me and was so joy-filled for me. love.

watching my son, my heart, lying on that NICU table with tubes, machines, and IVs day after day, feeling like it was everything i could do not to grab him and run to where it was safe, where there wasn't pain or fear - and then, finally, he was in my arms again. joy.

obviously i wished with every fiber of my being that i was holding him because he was healthy and going home, but holding him as he was going to his ultimate home where he'll be completely healthy (like wholly redeemed type healthy) was beyond what i could fathom. it was overwhelming.

just looking at this picture again makes my heart burst.
oh, i love that boy so much.

love.

there really would not have been a more sacred way to say goodbye to our little boy. we were so blessed.

more tender moments from that "going home to heaven" day...

noah getting baptized by our beloved pastor kendy

kisses from daddy

taking care of some dry skin

on this holy day of joy we also wept....deeply. we even felt bone-chilling fear. but i truly feel like God put sort of a bubble around us during that entire day - graciously protecting us from the intense heaviness of reality. shock is a gift sometimes. it allowed us to be in the moment, to enjoy our boy. because we were essentially being introduced to him and saying goodbye all at once. we were desperate to take in every detail. his itty-bitty fingernails. the way his upper lip sort of peeked out over his lower lip. his hair that went from the top of his head to his sideburns to his eyebrow, without any break. the way he just personified peace.

but shock wears off. as time goes on, layers of the protective bubble are removed one by one and the devastating reality becomes much more apparent. it's so very frightening. every day we're living in a world without noah in it. a car seat once installed and ready is now a glaring reminder of who is not here. a vacation planned months ago with him in mind now feels empty and void - he was supposed to be there. our loss seems to slap us in the face at every turn.

in it's purest form, we just miss him.

but i find great comfort in the fact that all noah knew during his 13 days on this earth was love. he got to skip all the brokenness of this world - the heartache, the pain...  (my dear friend, chris martenson, called him a "line cutter." i love that. the rest of us are stuck in a line waiting to go where he is now... lucky boy.)

so, although i desperately want him here with us, this mama's heart finds a kind of peace knowing that he doesn't have to worry about any earthly crap.

because i would have protected him from a dodge ball in 6th grade PE if need be...

Working the Good

"JOY is the felt confidence that, in the end, all will be put to rights - God's great nevertheless. Joy is not the absence of suffering, but the constant companion of those who suffer. NEVERTHELESS, God is working ALL THINGS together for good." (Jesse Rice)

welcome to my blog.

frankly, i wish i weren't here. i wish there wasn't a blog based on the loss of my baby. my son. my noah.

i wish there didn't have to be any blog created because of the loss of anyone's baby. period.

but we're here. and i am determined that even in this awful, tragic and heartbreaking time, God is working for good. because He must. this mama's heart refuses to let her son's life-legacy be anything otherwise.

is what happened good, or even anywhere in the realm of good? hell, no. and i believe that my God feels the same way. i know He's as pissed as i am - and more so. this is not the way it's supposed to be.

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.

while noah was in the hospital i had a waking dream as i was resting. i was traveling down a freeway at high speed when, ahead of me, i saw a huge pile of crap on the road. i got really scared that i was going to hit it and crash. but as i approached the mess, instead of crashing, i hit it in such a way that i was propelled into the air. and all of a sudden i was flying - the type of flying that felt free and peaceful. then at that very instant, this verse came to my mind...

"you intended to harm me, but God intended it all for good." (genesis 50:20)

the evil one would love nothing more than for this situation to cause massive amounts of destruction in my life - for it to wreak havoc on my soul. for me to crash and burn.

but somehow, someway, my God - who is eternally good, ever faithful and wildly creative - can take a pile of crap on a highway and use even it for His glory and purposes. and as i clumsily take off flying, trying to make sense of the wreckage, i look around and take it all in. 

this is what loss looks like from here.