Missing Him Looks Different Over Time

It’s been a while. So long, in fact, it took me an embarrassing amount of time to even remember how to sign into my own blog.

It’s also been a while since June 5, 2013 - the day Noah was born.

A decade. I can’t even wrap my head around it. 

...I've been feeling a little disoriented lately. 

John and I are raising babies who are growing into big kids - with big feelings. (Miles is ten days away from turning 9 and Levi is 7.) 

I’ve become completely disillusioned with the Church - a place that has been home to me my entire life. 

I left my church ministry profession, where I had spent almost my entire career. 

I stepped into a new position at a children’s hospital* where I am wildly out of my comfort zone. 

I dream of starting my own side business, but don't have one single entrepreneurial bone in my body.

And approaching this ten-year milestone has left me spiraling - not knowing what to do with myself. 

Which led me right back here. To Rainbows for Noah. My old friend. 

One of the reasons I started writing about Noah, and my experience of losing him, in the first place is because I felt helpless - like there wasn’t anything else I could do. I needed somewhere to let everything out that was roaring inside me. I needed to do something, but I didn’t know what. So, I’d write. 

And it’s why I’m writing now. 

How do you write like tomorrow won't arrive? How do you write like you need it to survive?

Missing Noah looks different over time. 

I remember in the early days after losing Noah it quite literally felt like an entire section of my body had disappeared. The loss was physical, tangible, heavy. Yet, I felt completely disconnected to my body, like I was a shell of a being. Void and vacant.

Ten years later, the ache of missing has turned more into a fondness of remembering. It's subtle, but the feeling is less like a weight and more like water running through my fingers. Hard to grasp, but surprisingly refreshing at times, and dare I say, enjoyable. For example, on a day like today, having two little boys who love a birthday party helps make for a sweet little celebration.

Without the heavy void, I've been forced these last few years to redefine what missing Noah looks like. 

I don’t miss the crushing, near-unsurvivable pain of the early years, but sometimes I do miss the tangible, raw connection with Noah and others that this intense grief brought. 

I miss the crystal clarity of my priorities and the way I protected my time during those early years.

I miss the friends who were with me in it then but aren’t with me in it now. 

I miss the way I clung to my faith like I couldn’t survive without it. 

I miss knowing exactly just what I was missing.

What does loss look like from here? It’s complicated. 

During that early time after losing Noah, I read (and reread) Dr. Jerry Sittser’s A Grace Disguised and he shared this parable regarding his catastrophic losses: 

“The sorrow I feel has not disappeared, but it has been integrated into my life as a painful part of a healthy whole. Initially, my loss was so overwhelming to me that it was the dominant emotion—sometimes the only emotion—I had. I felt like I was staring at the stump of a huge tree that had just been cut down in my backyard. That stump, which sat all alone, kept reminding me of the beloved tree that I had lost. I could think of nothing but that tree. Every time I looked out the window, all I could see was that stump. Eventually, however, I decided to do something about it. I landscaped my backyard, reclaiming it once again as my own. I decided to keep the stump there, since it was both too big and too precious to remove. Instead of getting rid of it, I worked around it. I planted shrubs, trees, flowers, and grass. I laid out a brick pathway and built two benches. Then I watched everything grow. Now, three years later, the stump remains, still reminding me of the beloved tree I lost. But the stump is surrounded by a beautiful garden of blooming flowers and growing trees and lush grass. Likewise, the sorrow I feel remains, but I have tried to create a landscape around the loss so that what was once ugly is now an integral part of a larger, lovely whole.”

I vividly remember reading this mere weeks/months after losing Noah and yearning desperately to be in that landscape of a "larger, lovely whole" someday. I could see its possibility.

It gave me hope.

So here I am, ten years later, living within that hope. A garden has grown, and continues to grow, around our stump. And not a stark stump anymore, but a stump that is green with life - a sparkling centerpiece that, when it catches your eye, you have to pause and smile. 

Our garden is less void and more promise.

Vegetable plants in varies stages of growth and maturity. Wildflowers in greens and purples and yellows and reds and oranges. Footprints of other children. Maybe some overgrowth where we've been too lazy to keep it pruned. Stones marking milestones from along the way...as well as other smaller stumps representing this decade's losses and heartbreaks.

It’s a messy, wild-beauty of a garden. 

And taking a moment today, on what would have been his tenth birthday, to rest on his stump (let’s call it Noah’s Sitting Place) - I look around this garden in awe and wonder and pride and gratitude…

But oh how I wish I could’ve seen the tree grow. 

*The hospital I am currently working at just happens to be Seattle Children’s Hospital - the place Noah spent the majority of his earthly life. I knew I’d find myself there one day.

You (Don't) Deserve This

a year ago today, july 3, we found out i was pregnant with levi. 

what a surprise. a beautiful surprise.

nothing in our lives seemed to come easy. until that day.

i had been feeling sick for a couple weeks but assumed it was because i was weaning miles off breastfeeding. was that a thing?

i finally ended up asking my doctor. she said that maybe...i should take a pregnancy test.

could i be?

i was. and literally my first words to john after taking the test...

that was easy!!

since even before day one, levi's life was a demonstration of pure grace. 

without even trying. without timing. without waiting. without stressing. 

so this is how it is for so many people. 

and then. a week-ish later. john was out of town on business and i started bleeding. like a lot.

i wept alone all night in the bathroom. 

of course. back to reality. the reality that nothing ever comes that easy. not for us. we lose. again. of course.

i ended up going to the urgent care a few days later. there was indeed a babe in there. (!) still a heart a'beatin'. but they didn't have encouraging news. a miscarriage could be likely. we'd just have to wait and see. 

i kept bleeding. i lost all hope and assumed the worst. 

yet. still that little heart kept a'beatin'. 

and a'beatin'. and a'beatin'. 

until february 25th when we got to meet the life that continually reminded us...

there's more to our story. pain, loss and stress aren't the only themes. there's grace. so much grace. 

our littlest levi. who's name means unifier. 

grace is the glue that holds it all together. Everything. grace is what holds me together.

over the last couple of years, with the arrivals of miles and levi, some people have said, after everything you've been through, you deserve this.

of course we didn't deserve what happened with noah. not even the worst person on earth deserves losing a child. but we also don't deserve a healthy miles. or a sweet levi. they're gifts. period.

what freedom it is knowing the ultimate outcome of my life doesn't all fall on me. no amount of controlling. no needing to constantly try my very best. no striving to be good enough.

i live in a world based on grace, not what i do or don't deserve. and that's a very good thing.

Go There People

june 10th, 2013 was noah's due date. it's also his aunt laura's birthday.

these two have much in common.

and i want to say the old cliche that people say after going through a hard time,

it really showed us who our friends were 

because that is true.
but there's so much more to it than that.

very early on when noah got sick it became starkly clear who we'd be able to draw strength from because they were drawn to pain. and not in an ambulance-chaser-looky-loo type way. but in the sincerest way i can mean it.

my counselor calls these types of people the ones who go there.

some people, we have learned, dodge the deep stuff because they just aren't built (seemingly) to "do pain." to which we've had to say, "peace out." pain is who we are. and unfortunately some of these people were close friends, and even family.

go there people are the people doing life the way it was intended.
making sacrifices for what's good, true and right. putting themselves out there in hopes that somehow they can use their life to make this world we live in better.

do whatever you can to be a go there person. it might not be the easy way. the comfortable way. or the way that's known, or makes sense. but it's the way that truly matters. because really. what else is there?

i question whether there's really even a reason to be alive other than to be a go there person.

if all people said at my memorial service was that i did a good job saving money, played a great tennis game and knew a lot of trivia. that would make me sick. (if you know me at all, i don't think we have to worry about a few of those ever being said about me...)

the ultimate go there person is the One and Only J.C. (He "went there" and entered into this mess to be with us.) so i'm going to look to him to give me ideas how go there-ing is done.

so maybe He can help me be this person...

her life was lived open, consistently welcoming the wounded warriors into her heart and home.
she kept no record of wrongs, but lived out forgiveness by showing up no matter what.
she was drawn to the broken, she didn't hold back out of fear.
love always won, in her heart, home and community.

noah's aunt laura is a go there person. and she inspires me, along with my dearest noah, to be a go there person too.

happy birthday, TSIL.
happy due date, sweet son.

our boy, june 10th, 2013

Hope Hopscotching

it's quite fascinating. i realized today that for the last week-ish my emotions have kind of paralleled the emotions i was having that correlating date three years ago. like i really am re-living the whole experience. still present and aware of what's going on here and now obviously, but memories flood back of where i was when, inevitability bringing my emotions along with them. but in most cases my emotions don't even need to recall a cognitive memory to feel how i was feeling, my body just knows. it's automatic... the "going there."

here's an example to make my point. the last couple of days i've felt extra heavy (see yesterday's or the day before yesterday's post as to why that might be the case). but today i had a pretty good day. now there could be a number of reasons for this. (i don't know. like maybe a best friend babysitting my children for a couple hours?)... but in reflecting on what was happening on june 9, 2013 it sort of makes sense.

on this day our roller coaster ride sort of leveled out. like the part on splash mountain where you're just slowly cruising around watching the country bears dance.

noah was on his second day of ECMO and doing pretty much everything his care team were hoping he would do. oxygen sats were high. great urine output. he was the definition of stabilized.

it allowed us a moment to take a breath. to establish some type of routine. to regain that itty bitty ounce of control we thought we still had.

with each and every small victory thoughts like, "maybe he'll really be okay" would enter back into our minds. we'd hold a little extra confidence.

i remember coming in noah's room one time and the nurse was high-as-a-kite-excited that she suctioned a huge glob of phlegm out of noah's lungs. and because my hope for anything good was so sensitive, i latched on to that like it was his salvation. i literally remember all day thinking, "does this mean he'll get better? was that the issue all along?" 

sweet, clueless mccayla.

my heart tried so desperately to believe what it wanted to believe.

these small wins were of course wins. but the game wasn't over, we just happened to earn a couple runs that inning.

and if we could hardly keep straight what the hell was going on for ourselves, how were we expected to give updates to our out-of-town family? or respond to the loving text asking how's noah doing? ...not to mention how and what to share with the great masses on social media. looking back on it we had no way of truly communicating to anybody with any sort of accuracy what was happening or how noah was doing. or how we were doing. 

we could be speaking with someone in a pocket of time where we got a bit of good news from the doctor, so we were feeling good, leaving our loved one perhaps with the wrong impression. maybe, like us, they could, if just for a moment, forget or deny how unbelievably serious noah's condition really was. 

because no matter what wins happened that day, the facts were still facts. he still was on life support. they still didn't know for sure what was causing him to be so sick. he still was the most critically ill patient in the NICU at that time. (or so i was told by one of our nurses.)

but as i continue to process more of what happened those 13 days i go back and forth between being upset that we were given (or chose to embrace) false hope (because it feels like lies) and being grateful that there was hope at all, in whatever quantity, for whatever reason.

because hope saves. it saved, and continues to save, us.

over and over and over and over again we would get an email or visit or prayer that would carry us to the next moment. we survived those days in the hospital, like literally survived... i'm not trying to be dramatic... by hopscotching on hope. one to the next to the next. 

and i'm telling you, those dashes of hope almost always came at the exact moment we needed them most. i wish i could remember more specifics right now, but trust me on it.

i'll try to lace future posts with these hope lifelines because they were just that - lifelines. and an essential piece of noah's story because they were the undeniable ways God was present to us during that time. 

the rainbows that declared the promise, 

i will never leave you nor forsake you.

A Living Hell with Heaven Breakthroughs

the shame and guilt are heavy in this post.  i thought about skipping parts but i must honor our truth. and perhaps someone else sees themselves in the decisions we made. and that will make it worth it to share. but it's a source of great pain for me.

after noah got settled into his room at seattle children's and we had some time with him, we went home. 

we went fucking home. 

how did we even do that? we actually left him there. this really goes to show how much we were in shock and completely bewildered. because knowing what i know now, i never would have left. 

john and i actually just talked about this a bit at noah's place on his birthday. it comes up now and then. we don't understand how we could have driven home. but like with everything in life, we do what know is best with the information we have at the time. and looking back we remember doctors and nurses encouraging us to get some rest at home, as it could be a long haul. they assured us they would call us with any change and we were only a 30 minute drive away. 

we actually never spent the night at the hospital with him. my mom stayed over more times than us. the decisions whether to stay or go that entire time he was in the hospital were excruciating. when we were there we felt in the way in his tiny room with huge machines. and when we were home all we wanted was to be with noah. we never could win. but either way, nothing would have changed anything. 

but back to that first night after we went home. we had been asleep for a couple hours when our phones rang. we shot up like a heart attack. the news wasn't good. we had better get back to the hospital quick.

we raced in the car. john said a prayer.

moments later, while we were driving, we got another call. his oxygen sats were actually stabilizing for no known reason. (john and i exchanged glances. WTF?)

but by the time we arrived to the hospital, on the early, early morning of june 8th, his oxygen levels were dramatically dropping again. there was crazy hustle and bustle all around his room. the head doctor was on the phone getting second opinions on what to do. all we could do was watch the chaos through the glass of noah's door. helpless. 

i was frantically texting anyone i could find in my phone to pray. we were desperate. 

the decision was made that he needed to go on a lung bypass called ECMO. life support. the machine would essentially do the work for his lungs, so they could take a break. (his lungs were not working. and he wouldn't survive without it.)

he immediately went into surgery to have two ginormous catheters inserted into the side of his neck where his main arteries were, among other intense things i couldn't even fathom. 

and we waited in the hospital starbucks. all the worse case scenarios flooding our minds.   

there was no denying it. this was fucking serious. (sorry i'm being an 'ol cuss. no other words seem strong enough.)

at last we heard he was out of surgery and it had gone well. 

now the hellish waiting game. all we could do was wait and see if he could stay strong and eventually ween off the bypass machine.

the next ten days were ... i don't know how to describe it using words. but what i can tell you is that my chest feels like an elephant is sitting on it as i recall the memories. and i'm terribly distracted with my PTSD looking at the machine above my head in the picture above. see those little purple numbers in the far right corner? those were his oxygen levels, and they were a matter of life and death. we watched them obsessively.

for the first few days he was on the ECMO he seemed to sort of settle down. stabilize. rest. we began to find a rhythm.

small victories. devastating blows backwards. divine interventions and lifeline-type support from our loved ones. we were living everyday in a hell that caught glimpses of heaven.

and rainbows. so many rainbows.

see you tomorrow.

More of the Story

i can't believe i haven't written on the blog since october.

well. i'm back. 

truth is i've never left. i'm still here. always will be. because noah won't be. and as long as i am living my firstborn baby's huge void will be felt. 

even when i'm holding another baby. oddly enough, those might even be the times when the void is most palpable. in the quiet of the night, feeding his baby brother. 

the last few days, for noah's 3rd birthday, i've re-posted noah's birth story that i wrote a couple years ago. it's been sweet to revisit those tender, miraculous moments. the best of moments. 

i've realized however the story sort of stops just before it really begins. i'm not entirely sure why. maybe i wanted to end on a good note, stay positive. maybe i didn't have the courage to play back the nightmare. maybe i wanted to selfishly keep noah as perfect as possible, and shelter his memory from the ugliness. 

i'd like to take you on a journey i'm finally ready to share. to show you glimpses of the horror (and sometimes miracle-type comfort along with it) we endured those days he was sick. not to shock you. not to make you feel bad for us. not to make you sad. but to honor noah and the strength he endured and the peace he taught us through it. and to remind us all of what's real.

i need this to fully grieve - to go there, the dark corners where it's scary and uncomfortable. and remember what happened (to the best of my ability). because in doing so, i'm remembering him and keeping him alive.

so i will (try to) embrace it all.

it'd be a hell of a lot easier to take a vacation. but i can't do that. this is life. i choose not to escape, because that would mean, for me, escaping noah. and that's not an option.

i'll pick up the story right where i left off, the very end of our perfect day. it was the night of june 6th. we were exhausted. i remember standing in our dark room bouncing noah and trying to help him to sleep. my thought in that moment was, "well. here they are. the sleepless nights. so they begin." 

around this time a nurse walked in to check on us. as she was leaving she offhandedly mentioned that they have a nursery where they could watch him while we slept, and would bring him back to be fed. i hesitated, looked at john, then decided we might as well take advantage getting some sleep while we were there.

turns out this one tiny decision saved his life that day and allowed him to survive many more days with us. had he stayed in our dark room while we half slept, we would have missed it.

not sure how long it was after he went with the nurse (maybe a couple hours) that i was (calmly) woken up by someone telling me they noticed noah's lips and hands were turning blue so he was getting some extra oxygen. she said something like i shouldn't worry and to go back to sleep. 

and can you believe i did? i can't. but i had no reasons to fear. i also was half asleep and didn't really understand what she was saying. and she was so effing calm. so i was too. (this was one of many times john and i took the lead from health professionals on how we should be feeling, because we hadn't a clue what to feel or do... so we, for better or worse, trusted them.)

then in the early morning of june 7th we were woken up and told noah was still on oxygen. we both were led straight to see him... in the NICU. 

i had no idea he was there. i mean, looking back...duh. he was on oxygen for christ's sake. but my mind couldn't hold that information apparently. (again. the first of many times this would happen. my brain just couldn't keep up with it all.)

we walked into his room.



he had a mask fully covering his face and tubes and IVs everywhere. my baby. my boy. my heart.

i went numb. doctors and nurses spoke to us but i couldn't hear them, i didn't understand. how could i process it all? it was too much. 

i actually had the thought, "so we're not all going home today?"

sweet, naive little mccayla. sweet, clueless mccayla. sweet mama just hanging on by a thread to survive the weight of what was happening.

these were the first moments when the reality we knew, the previous reality where our world was complete with noah and we were in a state of pure bliss, began to ever so slowly unravel into a murky, dark, confusing realm where nothing made sense.

worst of all, the doctors had no real answers. it seemed like every time they would say, "we think it's this, so we're going to try that." again and again "this" wasn't it and it's "that" didn't help him. 

he was needing more and more support. more oxygen. more IVs. our boy disappeared in a sea of monitor beeps and cords.

i have a very clear memory (not too many of these from those days)...of sitting in the bathroom a couple doors down from his room with my hands shoved over my ears, wailing because i could hear his screams as they tried putting an IV into his foot. and i could do nothing to save him. my skin felt like it was intruding upon my body but i couldn't escape. i felt his screams inside me, like his pain was mine.

the horror was all around. 

at one point during the day we were told his heart was working harder than it should be. and just to hear his heart mentioned at all took us to another level of fear. 

i saw my rock-steady john break down and cry for the first time ever, that i had seen. the other times were sweet tears. out of joy - at our wedding and noah being born. so this was serious. 

near the end of the day they had done all they could do at the Overlake NICU and decided to transport him to Seattle Children's. it just kept getting worse and worse. we were spinning out of control.

it took quite awhile for the transport team to ready all of the machines and oxygen and monitors needed for a tiny, two day old baby. and then, all at once, there he went, into the ambulance. we watched our heart drive away. (following closely behind with our car.)

all throughout the day we received so much encouragement (mostly through facebook or texts) from people sharing their NICU stories or different health struggles they had with their babies and it gave us so much hope.

i also noticed another couple in the Overlake NICU coming in to visit their baby, like it was an everyday, normal thing. maybe this wasn't so bad?

the dance. the roller coaster.

down. up. 

better. worse.

hoping for the best and positive thinking would stop and stay for a bit. but fear...fear would linger. like a offensive smell that just wouldn't go away. always there. paralyzing. nausea inducing. 

the minute we walked into the Seattle Children's NICU we were greeted by the medical director who, point blank, said its one of three things: (1) it's only pulmonary hypertension, very common and treatable with some sort of gas (those weren't his words. but i don't remember 90% of what was said to me in that hospital); (2) a more serious lung and/or heart issue that might require him going on a bypass machine called ECMO, but again treatable with time, or (3) a 2% chance it could be a fatal, non-curable disease called ACD. 

noah was on ECMO by the next morning.

our roller coaster continued. but it seemed to be plummeting down.

for the next week or so, i will be sharing some of our experiences from his 13 days, and that wild ride we took with the little boy who fought at every turn to survive, to show us love as colorful as a rainbow.

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.