Miles: 14 Weeks

written december 13, 2013

we just received a very, very, very generous offer. my sister-in-law's, sister-in-law's dad, (you follow?) is a radiologist and invited us to come have an ultrasound whenever we wanted. obviously we jumped at the chance and immediately contacted him to set up a time to come in. he graciously carved out time after office hours and we began to count down the days. (for a very worried, neurotic mama, the chance to see my baby's heart beating, arms waving and feet kicking was a godsend. literally.)

and yesterday was the day. i saw him. yes. "it's" a him. we're having another son.

up until the very second i saw him on that screen, i tried the best i could to keep my head and my heart separate. being pregnant, up until that moment, was 99.9% in my head. i'm pregnant. i need to take my prenatal vitamins. i'm feeling sick, i should lay down. i hung closely on the facts and rarely let my heart carry me away with emotions, because my natural response when i'm afraid of getting hurt is defending my heart. i was just too scared to let love in - love i could lose.

but when i saw him there, with his face pressed up against my womb like he was giving kisses, my heart took over a million percent. there's nothing i could do but love him. i had no choice. i was overwhelmed with love.

one of the most beautiful gifts noah gave me as his mama was enlarging my capacity for love. the entire time i was pregnant with noah of course i loved him, but it wasn't until the moment he burst into this world with those wide eyes and baby cries that my heart stretched to welcome him in a way i never even could begin to imagine. i have a mama's heart now. and i get to begin my love for this new life, noah's little brother, now.

love doesn't mean waiting to make sure everything will turn out "okay" before giving into it. love is the opposite. it's exposing your heart to the possibility of danger, without knowing the aftermath.

love is not in the business of risk-management.

because what's going to happen will happen. i cannot change or control the uncontrollable. ACD happens. stillbirths happen. suffering happens. and no matter if i "try" not to get too attached or throw myself into the vulnerable waters of love, the outcome will not change. i might as well take every single day of this pregnancy as an opportunity to be this precious one's mommy and love him. today is all i'm given.

pretty much days after we made arrangements for this special ultrasound we received a call from our midwife team saying that they'd like to refer me to a perinatologist and get a early, detailed ultrasound. (with what happened to noah and also my dangerously high blood pressure after his birth, i guess i'm considered "high risk" so they want to keep a closer eye on me and the baby.)

so we're back to the exact same clinic with the exact same radiologist to see our crazy-loved baby boy on tuesday. and my heart is bursting with anticipation to see him again.

because i'll take every nano second i am given.

"anything is possible. stay open, forever, so open it hurts, and then open up some more, until the day you die, world without end, amen." -george saunders 

Miles: 13 Weeks

written december 3, 2013.

tomorrow we'll be about 13 weeks pregnant, and we've only told a handful of people. our immediate families and a couple of close friends. when i was pregnant with noah i seemed to have been screaming our news from the rooftops the moment we saw the beautiful + on that plastic stick.

this time is different. for a lot of reasons.

it's not that we aren't excited. we are. it's just not the wildly optimistic, "oh my gosh we're pregnant and this is going to be the best ever!!!!" it looks more like the cautious and quiet hopefulness that is thankful, yet fearful. i'm trying to hold all my hopes and dreams protectively in my heart, a heart that knows all-too-well the brokenness of this world and the "worst case scenarios" that can actually happen to me.

my naivety is completely gone and it makes for a less-than-blissful pregnancy.

at 6 weeks pregnant i insisted we go to the urgent care, in the middle of the night, because i was having some weird cramping. i was worried. (more than worried.) turns out it was a cyst on my ovary (very common) that would go away in it's own time. the entire trip there and hours spent getting checked out were only because i wanted to know the baby was okay. and baby was just fine.

then at 8 weeks we went in to see our midwife and get our initial check. i cried in the waiting room because i was so scared. but all was well. our sweet midwife said that i could come in whenever i wanted to hear the heartbeat. i came in the very next week. (even though it felt like months.) i had to know the baby was okay.

as you can see i'm mildly neurotic. but i guess i have reason to be.

A Rainbow Amidst the Storm

...and yes, we're feeling everything you could possibly think that we're feeling. excitement, worry, hope, expectation, impatience, wonder, terror. all at once, every minute.

around the same time we started going down the road of adoption (early last fall) we had another big decision to make... would we try to get pregnant again? there are still a lot of unanswered questions regarding the condition that took noah's life (alveolar capillary dysplasia) and we are unable to know whether or not noah contracted ACD genetically from one of us or if it was a random, awful fluke. so clearly getting pregnant again would be risky, as there is a chance future biological children could also have ACD. and frankly, with our naivety and rose colored glasses completely gone, we know all too well that there are absolutely no guarantees. for anything. we've seen too much.

but we were willing to press forward, and stuff our fear in a sack, because of love.

the only thing we really knew is that we wanted more children. we didn't care how they came into our family, through adoption or biologically, so we decided to proceed boldly down both roads, hoping those roads would lead to more children somehow, some way.

then a few short weeks later we got a positive pregnancy test. and a few short weeks after that we were home study ready for adoption, or "paper pregnant" as our social worker calls it.

double rainbows on the horizon.

you may have noticed that we are due in june. and if you know much about our noah, you know he was born in june. and what's more, these brothers have due dates one day apart. isn't that just the craziest? noah was due on june 10th (born june 5th) and mr. miles is due june 11th (his daddy's birthday).

i feel like i'm kind of in a twilight zone.

i've been writing a bit throughout the early weeks of my pregnancy and will share those posts on the blog soon. my heart is feeling many things, but the stand out is clearly love. i already love this little miles man fiercely.

i also hope to share a bit of what it is like to grieve the loss of life in the midst of celebrating a new life. grieving and celebrating are two very contrasting emotions that i'm trying to join together every minute, allowing both to belong in my heart-space at once.

one of my biggest fears in letting the world in on our news of this precious rainbow baby is that somehow noah and isaac will get "lost in the excitement." that family and friends will focus so much on the up-and-coming goodness, that our first two boys could get forgotten. "oh, that's so wonderful that john and mccayla are pregnant! now they can go back to being happy. all is well again, thank goodness." um, this is the fattest lie. please don't ever think that. we are still hurting because noah is still not here. we are still heartbroken because isaac never came home with us, and never will. nothing will ever fix that pain or make it all better.

miles is not a band aid. he is a brilliantly new, unique and wonderful life, all his own.

hear us on this. we are not looking to replace noah or isaac. they are irreplaceable.

the only difference is that there is now a physical glimpse of hope and redemption, and he's kicking me with joy right this minute. miles the miracle.

as our family expands we commit to including noah and isaac all along the way because they will always be our first and second born sons who have a very special place in our family. in families where there are two living children, and then a third child comes along, no one stops talking about the first two, or completely ignores them at christmas. so what's the diff?

so thank you for committing with us on remembering all our boys, as we welcome our beloved #3.

and thank you for joining us in our excitement and joy (and terror and worry).

miles is not the "happy ending" to our tragic story, he's an integral chapter in this crazy, thrilling, joyous, wild, heartbreaking, beautiful journey of life that is still being written. and as his rainbow life, with it's brilliant colors full of light, intersects with ours, we couldn't be prouder to be his parents and watch him grow into the man he was created to be. what a miracle.

miracle miles, we can't wait to meet you. 

In some circles, babies born to families after the loss of a child are referred to as "Rainbow Babies." The idea is that the baby is like a rainbow after a storm. "Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with its aftermath. What it means is that something beautiful and full of light has appeared in the midst of the darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope.
                                                                      ---  Definition Source

Let's Beat the $H!T out of ACD

= a public service announcement / shameless plug / letter from my heart to yours =

the fatal condition that took noah's life was Alveolar Capillary Dysplasia, or ACD. right now there have only been about 200 cases worldwide reported which makes ACD a "rare disorder." not much is known about this disease, but thankfully there is research being done. 

NORD, or National Organization for Rare Disorders, is a 501c3 organization dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them, like the Alveolar Capillary Dysplasia Association, which we are a part of. 

NORD is committed to the identification, treatment, and cure of rare disorders through education, advocacy, research and service. one way they do this is through their Research Grant Program which provides seed money in small grants to academic scientists studying new treatments or diagnostics for rare diseases. 

it's almost that time of year that NORD issues the request for proposals for new research projects. in order to be included, the Alveolar Capillary Dysplasia Restricted Research Fund must have $33,500 by march 1st. as of december 31st, the fund totaled $17,840. so we're about half way there!

research through the NORD's grant process does two things: 1) the request for proposal publicizes ACD in the medical community, and 2) research brings us closer to non-invasive diagnostics, more information, treatment, and a cure. research is greatly needed and we invite you to be a part of it.

it is super easy to make a tax deductible donation to the ACD restricted fund at NORD. just click on this link and be sure to choose Alveolar Capillary Dysplasia (ACD) from the "Research Fund" pull down menu. 

ACD makes me unbelievably angry. losing my son for such an insane reason as one little messed up chromosome makes me so angry ... there are no words. i'm paralyzed with an anger that has nowhere to go.

there's not much i can do, as a mother, for a son wrongfully in heaven - to make it right. but i can do this. i can, with my dollars and cents, scream at ACD to "GET THE HELL OUT OF HERE!"

obviously all of this is incredibly personal to me and way, way more than just asking for money.

thank you for reading this ridiculously long post.

thank you for loving our boy and honoring him by saving the lives of others.

with eagerness to beat the $H!T out of ACD...

xx
noah's mama

A Mother's Heart

we celebrated my mother's **th birthday a couple days ago. i love her.

i've always known she was the best mother on earth, but i've seen sides of her this last year that are more brilliantly beautiful than ever. i recognize her mother-love in ways i've never known before. i think it's because i am a mother now too. and i understand.

well, sort of. i'm just scratching the surface of understanding.

on the morning that baby isaac passed away, she was the first person i called.
we cried. but mostly i cried and she comforted.

then an hour or so later i saw her make a comment on facebook that sort of worried me, because i have never seen her write something like it before. it was basically, "thank you for the support you all have shown to our family.... but right now i need some time and space. so no calls please."

obviously i called immediately.

and when she picked up the phone i heard something i don't hear very often from my mother. weeping.

my mother has been through a lot of heartbreaking things in her life, but i always find her to be steady and strong. especially around, and for, me. so to catch her in this private moment kind of startled me.

my initial feeling was deep sorrow. here's this amazing woman who would make the best grandma in the entire world and she has to watch as friend after friend embrace grandchild after grandchild, as her arms are empty. it's ridiculously unfair. my heart ached for her. she didn't deserve this. she deserves a million grandchildren to spoil and love and force to play baseball in the backyard on the 4th of july.

as these thoughts were going through my mind, she was able to muster these words through her sobs that flooded my heart... "i just want you to be happy."

she wasn't thinking about herself and her loss. in that moment, she was mourning her daughter's loss. never in my life did i feel more loved, or understand love's true meaning, then at that moment.

a mother's heart. always thinking of her child's well-being, health and happiness before herself.

i am a better mother because of you, mama. you have been my best teacher for what it means to sacrificially and selflessly love...and this makes me a better human being because of you, too.

Common Thread

this entire post could consist of seven words.

i love our support group.

the end.

our counselor, who we see through the journey program at seattle children's hospital, referred us to this group last fall. five couples who have lost an infant, two loving facilitators, one therapy dog. (he's actually a legit service dog for one of the members, but consoles us all. sometimes he comes and rests his head on my knee when i cry. i love him.)

we meet every other wednesday and last night was our first meeting after the long break for the holidays. so it had been four weeks since we had been together. and i missed them.

i also was a bit nervous to share our recent, heavy news of losing baby isaac. not because of what i was afraid their reactions would be, i knew they'd be supportive (good thing, because they are a support group), i was nervous because talking about it means that it actually happened. and sometimes i'd rather not talk about it because then it almost feels like maybe my life hasn't crashed into a million pieces.

denial is a lovely place to be when your heart is broken.

but being honest is so freeing. and healing. after we shared isaac's story, i literally felt like ten pounds was lifted off my shoulders.

they cried with us. swore (a lot) with us. and reminded us that in this hell, which feels like the most isolating place in the universe, there are others. and in our new reality, we are not alone. i say, and hear, at least half a dozen times per meeting something like, "you know, because..." or "i'm sure you understand" or just heads nodding furiously when you are explaining how you feel or something you did while grieving. 

don't we all just yearn for ten empathetic heads to nod with us, as we go through this messy and confusing life? 

affirming that whatever we're feeling is "normal." 
letting us know it's okay, we are allowed to act a little insane sometimes. 
being so beautifully empowering.

and hearing words from someone else's story that just makes complete sense and knowing i'm not the only one who feels or experiences what i do. oh, man. it's like taking my wounded and tired heart, wrapping it in a blanket, and giving it a loving squeeze. 

i hate, hate, hate the reason that brought us all together, and the common thread of pain in each of our lives, but that same thread also holds understanding and support that cannot be found anywhere else. can't have the understanding without the pain, it's the same thread. and for that, i'm grateful. and devastated.

(apparently grateful and devastated can also live on the same, common thread. what a wacky world... i love/hate it.)

What Does Grief Look Like?

on a typical day, grief looks like a hot mess.

after taking a myers-briggs personality test a year or so ago, i noticed that one of the ways they say my personality type (E/INFJ) deals with stress is to marathon-watch their favorite tv show.

this is what that looks like.

i find i'm doing a lot of the same things i did in the weeks following noah's death. like my body and spirit went into autopilot this week and just knew what to do.

i know i need my space and have a hard time, generally, keeping my energy up with people around all the time. but i have found a life-giving force from our unbelievably amazing community.

a dear friend came over on sunday afternoon to be with me while john was at work. we painted our nails. (correction: she painted my nails. i didn't do anything.)

someone filled our house with food before we came home from louisiana. this might be one of the single, most practical and helpful acts of love. (and it's no secret who you are, because you picked out all our favorites. hashtag twin-tuition.)

a couple we have found a deep sense of love and care from these last few months as we have been welcomed into their home about twice a month, to eat yummy dessert and share our hearts together, came over pretty immediately to show they cared and sit with us as we processed. (and brought cookies.)

three of our pastors have contacted us repeatedly with their words of encouragement, support and anger. (hearing words like "i am yelling at God for you" from your senior pastor is strangely one of the most comforting things. we don't need cliche poem-like words, we need others joining us in our grief. what love.)

my husband. constant and kind.

grief, oddly enough, sometimes looks a lot like love.

i need alone time, yes, but i need others more. i need my community to help lift my head out of the mess, to remind me that there is a big world out there still turning, even when my world has stopped.

i'm sort of in a holding pattern right now. i don't really have plans after i'm done writing this post, let alone when i'll go back to work or if i'll go back to work. i don't even know what's for dinner tomorrow. (but i don't have to know, thank goodness, because it's just going to show up on our doorstep. what a gift.)

there's no end date to grief, but i'm allowing as much time as my mind and heart need. they've seen and felt things in this lifetime that no human should have to, and then two times over.

they are stronger than i thought possible, but still, i will proceed gently.

Baby Boy Isaac, our Cajun Cutie

a week ago today we met our darling cajun cutie, a second son, noah's little brother.

in adoption land sometimes things happen really quickly, and we were prepared for that. about a week and a half ago we got a call about an adoption situation - an expectant mother due january 8th. with an adoption facilitator, we spoke to her on the phone the next day and later on that same day we found out she had chosen us to raise her soon-to-be born baby boy. about four days after that we got a call that she was having an emergency c-section that day. we were on a plane to louisiana that night.

we had only been paper pregnant for about three months, but we've had a heart to be parents our whole lives. we were scared and unsure, but we were ready.

before we even got on the plane we knew he had some respiratory issues that presented pretty immediately after birth, but we weren't sure of the severity. (respiratory issues are the number one reason a baby gets admitted into the NICU. quite common and almost always blows over in a couple days.) but the minute we arrived to the hospital about 18 hours later, we knew it was serious. we know NICUs and as we followed the nurse to the very back room, past room after room with multiple crying babies per one nurse, we entered a big, dark room with one tiny baby, hooked up to a very large machine.

he was beautiful.

the nurse called him "feisty."
we called him a fighter.

he had incredibly dark, curly hair and sideburns like noah.

he was a wiggily-wally and loved to hold hands.

his feet were the size of his entire calf.

he kept his left hand pretty consistently up at his face and whenever the nurses would try to cover his eyes to keep him from getting too stimulated he'd push it off.

feisty.

i loved him the moment i saw him and it only grew the three days we spent with him, and still today.

his health became more and more fragile as the hours went on. we started to hear the words "mortality", "extremely sick", "50/50 chance of survival"... and we were thrown into the same nightmare we lived through seven months ago. i'm still in shock.

adoption was our saving grace. adoption was our guarantee for another child.
if we can't bring another child into our home through adoption and there's a risk of future biological children having the same condition noah had, then what? my hopes and dreams of becoming a mother to a healthy child with a long life seemed to be slipping through my fingertips. i was absolutely rocked. our shaky, broken world became even more shaky and broken.

yet everything about the adoption procedures were going so smoothly. (and this was the process we were most nervous about! would the expectant mother change her mind? would the birth father all of sudden show up and demand custody? how long would we have to stay in louisiana with our baby before we were cleared to come home?) but our lawyers were honest, speedy and supportive. the adoption professionals kept in amazing communication with us. and the biggest unknown, our relationship with the birth mother, was completely blessed.

we visited her every day and from the very first moment we met, there was a mutual admiration and respect between the three of us. you could tell she loved her baby so, so much and she was genuinely excited for him to have the life she was unable to give him, by sharing him with us. (this is a complete side note, but i get so fired up when ignorant people say crap like, "how could any one ever give away their baby? i could never do that, i love my kids too much." well, you know what, idiot? she is not giving him up. she has the unbelievable courage to do what's best for her child, and make a plan for him that gives him a future and a hope. that's a sacrificial love that is rare, because it is completely selfless. and secondly, who has the right to judge any one on their choices? have they walked in her shoes? okay, sorry for that tangent. it just makes me furious.)

if only we could have brought him home, taken him to his first day of school, watched as he dribbled a basketball for the first time, seen him play with his cousins. what a life he would have had. and his birth mama would have been a part of his story the whole way.

but we all lost. we lost a life that was bright. we lost the dream of something better. we lost a son, all three of us.

"isaac" is his birth mama's last name. so on all of his paperwork, and the way he was always referred to by doctors and nurses, was baby boy isaac. we had come with another name picked out for him, but over the course of those three days, it was baby boy isaac that stuck.

isaac. God's promise to abraham. and the sacrifice a father made for a God he trusted.

i don't know where i stand with God right now. i was angry before, losing noah, but i'm in a new dimension of anger now. it's all so incredibly unfair. i don't understand. i'm pissed beyond belief and don't really have anywhere to direct it. except God.

speaking of, do not tell me or my husband that God has a perfect plan for us. you just want to simplify this tragedy and wrap it up in a nice box with a pretty bow, so as to make some sort of sense of it all and try to make us feel better. but can you honestly say that there's any way in the world that sorrow, tears and loss are part of his "perfect" plan for me, or anyone?

and another thing, it's easy to say God has a perfect plan when your life is pretty good. so don't tell us about this perfect plan, it only isolates us even more from the virtually pain-free life we aren't living.

God does not need defending right now. He is big enough and strong enough to handle our pounding fists and our confused tears. He can take our hard questions. if there's one thing i still know about my relationship with God, it's that it's authentic and real.

and if there's one more thing i know about God, it's that the love He shows us through His people is miraculous. so thank you.

Feelings: Unedited

oh my gracious god. if ever i felt like life is unfair, it's right now.

seven months after the shock and horror of spending day after day watching our precious, long-awaited newborn baby fight for his life, we are right there again - reliving a nightmare. 

helplessly watching as a fragile, tiny life struggles. hearing the endless sirens of machines. staring at a blood pressure number you once never even knew existed and now all your hopes rest on it.

out of control.

overwhelmed.

exhausted.

angry.

how is it even possible? what are the odds that this happen to us again? it's beyond unfair. everyone else, it seems, gets to take home their baby from the hospital with no issues, no stress, no heartache. 99% of parents don't even know what a NICU looks like, feels like. and this is our second round.

we feel cursed. 

just a few short days ago we believed, like everyone else, that this last minute adoption situation was our rainbow, our beauty and promise after the storm. finally, our dream of bringing a healthy baby home would be fulfilled. 

it seems so easy for everyone else. 

oops, we're pregnant.

shall we have another baby? sure, ok, that sounds fun.

and then to the hospital they go and 24-48 hours later they are home, cuddling with their newborn. 

why not us? it's so unfair. 

we were created for this. every bone in my body is built to be a mother. i've wanted this my entire life, and yet...my arms are empty.

i know we aren't the only ones who have struggled. i know it isn't easy for a lot of people. we aren't alone. but right now, it feels that way. especially being half way across the country from our family and community.

the last time we prayed for a miracle of healing, it went devastatingly unanswered. so it's unimaginably difficult to find the strength, but we're hanging on to the smallest ounce of concentrated hope we've got left, and asking, once again, for a miracle.