December 30, 2015

The Length of a Year

As I sit here and think about the past year....it all feels unreal. So much of me is still waiting for a person to pop out and shout just kidding! You were just having a bad dream! Then I will wake up....and still find myself in January of this year. Pregnant with a healthy little girl. We would welcome her into the world, wrapped all snug in our arms. David would graduate. We would move...he would begin working...and we would have our little family.


**I haven't yet shared these pictures. Our sweet and amazing family friend Ora took them the night before Adalyn passed...I want to share a few of them. We knew our time left with our sweet girl was running out. At the time...it seemed crazy to be taking pictures. Looking at them now...there are still so many emotions. I have no doubt angels were present the entire time...talking to and holding her. 

Yet....in 365 days our world has so drastically changed.

There are so many aspects of this year that come alive to haunt me in my dreams. The ultrasound we had as the doctor told me that there were many things completely wrong with our baby. Meetings with more doctors in preparing for her delivery....as they prepared us for the worst. The first meeting we had with her doctors after she was born....going in thinking it would be such a positive meeting..only to be told that there were hardly any aspects of Adalyn's brain that had formed correctly. Haunting dreams of the 38 nights spent leaving the hospital with empty arms. Reliving David going into heart failure.....watching both he and Adalyn prepare for surgery....seeing myself countless times sobbing on the floor of a hospital bathroom...scared I was going to loose both of them. Watching Adalyn seize over and over. Yet the most haunting is reliving moments of the last week and a half. Watching as the doctors failed intubation multiple times....and her breathing stop...and the monitors drop. Of bringing her home...knowing that there was nothing left we could do. Of watching her take her last breath. Knowing that I would never hold our baby alive again in this life.

2015 held many dark days. Days when it took all the strength I had to muster pray the words..."Please help us"


There are no words to describe how haunting each of those memories can be. Of the fears that are written on my heart.

But as 2015 comes to a close.....I find myself not wanting it to end. This year was heart-breaking in every possible way.....yet...I'm not ready to say good-bye to it. This year gave us Adalyn.


This year we experienced the deepest kind of love. We spent days and nights singing lullabies. We had snuggles.....we had poopy diapers. We had laughs. We had perfect toes and fingers to count. We had the cutest chubby cheeks and thighs to kiss. We had walks in the park.....and days spent laying on blankets....showing Adalyn the beauty in a little leaf....in the sun...in the sky. We were strong....the three of us. We were given a miracle. We were given time. We were taught by a beautiful little angel about what is most important in this life. She made me a mom...and taught be what a beautiful thing that is. She showed us courage......bravery....and unhinged love. She showed us strength. She gave us hope. And because of her....we have received such an outpouring of love into our lives.


I don't want 2016 to come. I don't to spend an entire year without here here in our arms. I don't want time to continue to pass. It is something that I have been wrestling with every day.

I felt the same way about Christmas, I didn't want it to come......and somehow it still came. The beginning of our Christmas morning was beautiful....we had Adalyn's stocking filled with such sweet notes and poems. We felt of her love so strongly. It was a hard day....and a solemn kind of Christmas...but it was filled with beautiful and tender moments.

I am scared of facing life without her here. In every way I long for her. So often I hear of the saying that after the storm....the clouds break and the sun begins to shine. But so often....I still feel like we are standing in the middle of the storm.....drowning in the rain. 

Somehow I have to find a way to stay afloat.....and as much as I don't want to some days....We have to find a way to live for her. To be better because of her. To always remember what she taught us and continues to teach us with her beautiful and strong spirit. As a very kind woman recently said....David and I are now "caretakers of Adalyn's legacy." I love that so much. And if sharing with the world the hope, love and courage she brought into our lives is how we can best care for her now......that is exactly what I will spend a lifetime doing.

I will share with the world that miracles happen. That strength comes in all sizes. That experiencing the love of a child is greater than any other achievement...degree...or honor in the world. That very type of love is pure and powerful.

I love you so much Addie baby. I miss you more and more each day. I don't know how to do this. How to live without you here. But I will try. I look for you in everything....for the whispers of your love.. The following is the book we got you for Christmas!

"I wanted you more than you will ever know, so I sent love to follow wherever you go..

It's as high as you wish it. It's quick as an elf. You'll never outgrow it....it stretches itself!  So climb any mountain...climb up to the sky! My love will find you....my love can fly!

Make a big splash! Go out on a limb! My love will find you. My love can swim!

It never gets lost, never fades, never ends....if you're working...

Or playing...Or sitting with friends.

You can dance til you're dizzy...paint til you're blue...

There's no place, not one, that my love can't find you. 

And if someday, you're lonely, or someday your sad, or you strike out at baseball, or think you've been bad....

just lift up your face, feel the wind in your hair. That's me, my sweet baby, my love is right there. 

In the green of the grass....in the smell of the sea....in the clouds floating by...at the top of a tree...in the sound crickets make at the end of the day....

You are loved. You are loved. You are loved, they all say. 

My love is so high, and so wide and so deep, it's always right there, even when you're asleep. 

So hold your head high and don't be afraid to march to the front of your own parade. If you're still my small babe or all the way grown, my promise to you is you're never alone. 

You're my angel, my darling, my star....and my love will find you, wherever you are."

Nancy Tillman "Wherever you are, my love will find you"



It's true sweet girl... We love you more then words could ever pen. I pray each day you always know we do. That our love will hold you....carry you...and continue to life you. I pray your love for us will do the very same thing. Stay extra close!



December 20, 2015

A Different Christmas

How does time pass when I feel it should be frozen? How do days and weeks somehow still come when my heart feels like it has stopped?

My heart is utterly broken. It is like functioning with a giant black hole sitting next to me. Some moments, I just want to fall into that hole. To let it consume me......and get completely lost in it so I don't have to keep feeling. So often, I feel like just a shell of myself. I can complete tasks.....go through the day....run errands....but no matter what I am doing....I feel the emptiness pulling on my heart. 

I lay on the closet floor most nights.....staring up at Adalyn's clothes hanging and simply sob. I miss her. I miss absolutely everything. Some moments....I feel cheated. Cheated out of having a healthy pregnancy.....out of the excitement of preparing for her to arrive. Cheated of the moment of being the first to hold her. Cheated of getting to take her home soon after birth. Cheated out of spending this life watching her grow and develop. 

There are a lot a photos that I haven't shared yet of Adalyn...So I wanted to put some sweet ones up!


At times....I am easily irritated with myself...over little things...that spill into big things. Being flustered over misplacing something turns into frustration that I couldn't have done more. That we couldn't keep Adalyn alive....that maybe somehow I failed in some way. 

I long for Adalyn in a way that I never knew was possible. Each day I wake up....I have this sense of anticipation. Like I am waiting for a package to arrive in the mail. I wait and wait....constantly looking for that package. At the end of the day, I feel so defeated. I've realized recently it is Adalyn I am looking for....waiting to arrive. My whole soul and body feel like she should still be here....and so every day....it has the hope that she will somehow come back. 


Recently....David and I passed a stranger with a few kids running around. This stranger looked happy...but tired in some ways....and said.."Enjoy being alone while you can....after you have kids...everything gets much harder and not as fun...you have to wait til they grow."

Wham. 

I know that was likely said just out of exhaustion....but that comment has been on my mind ever since. Replaying over and over. I think so often there is something people tend to forget. 

Every part of our souls yearn to have a family for a reason. Because somehow we all know that having a child....and becoming a family is the greatest miracle to ever experience here on this earth. It is better than any weekend get away....movie.....or game can ever compare. It is beautiful and life changing. I'm not saying it isn't hard.....because David and I definitely know about hard.....but you know what? We would even trade to relive some of our hardest days with Adalyn if it meant holding her for a little longer. To have a little more time. 


Maybe we all get a little blindsided in some moments that we wish away the very thing we wanted so badly to have. I wish I could have told that stranger...that as hard as the days may be....there is nothing better. Boogery noses, temper tantrums.....long days....we wanted all of it. 

Those very things hit home for us this Christmas. If anyone knows me.....they know how much I love Christmas. The songs....the lights....the warmth....the smells....the magic of Santa. This Christmas season has been harder then words could convey. It has been different in every sense. Yet there have been some of the sweetest tender mercies.....such over-powering feelings of love. 

We have received such thoughtful cards....gifts...messages....dinners...phone calls... I have never in my life expected to be on the receiving end of such acts of love. Before Adalyn....when I would think of sending a message....bringing a dinner....or even writing a card...I felt like I was probably being somewhat of a burden to the person I was giving to. 

Being on the opposite side has showed me a new perspective on many things. Absolutely everything we have received has impacted us. In so many ways people have been our physical angels. Some how....on especially hard days....A card will show up in the mail. We will receive a message.... Or some one stops by with dinner or cookies. 

How could they ever know in those moments....how much they were needed?

Most of all....this time of year I have realized what the significance of Christmas really means in my life. I have felt such a closeness to our sweet Adalyn in so many ways. I have felt her love.....her happiness touch my heart. She continues to be such a pure....guiding light for David and I..... giving us perspective on every aspect of life. 

Oh how I miss those chubby little fingers! 


Because of a little child....born in the humblest of circumstances.....We will have our baby forever. Death will not win. As broken as I feel......as raw as our pain is..... I know there will come a day when we once more have her in our arms. When there will be no more good-byes. 

On the days when I feel that happiness in this life is gone.....when I feel angry at God.....when I feel the immense fear of loosing all I hold close..... 

I have to trust in the love I have for Adalyn. In the love she gave us. And in the birth of another...Who came into this world to become our Savior in every way. To, one day, make right every wrong we feel. 

I don't know all things. I, at times, feel like I am standing on legs made of jell-o that hasn't quite set up right.....

But I know what Adalyn brought into our lives was real....and pure....and powerful. 

She gave...and continues to give us the most precious gift that we will ever receive. 

Thank you to all who have been our angels at this time. For all you have done. We are not always the best at responding....or thanking enough. But thank you for letting us continue to share Adalyn. For letting us laugh...and cry. For this Christmas.....we hope that Adalyn's life and love will find it's way into your hearts.  For each of you to cherish the moments you have and hold to them.

Merry Chirstmas Adalyn Grace! We're so glad we sang you so many Christmas songs....I'm certain you're singing them all the time. I hope you are enjoying the lights as much as I do....though...they aren't nearly as bright as you are!  I miss you. I miss kissing your sweet cheeks...and blowing on your belly. I miss feeling the weight of you sleeping in my arms. I miss our nights together. We love you completely Addie baby. We know you are close.....and cannot wait to see you again! 

We took Adalyn to see Santa. It was definitely a tender experience...and the ladies were so kind. We have decided we don't want to miss out on her "firsts.." So pictures like this may pop up now and again. 


December 6, 2015

Grief.

It has been 3 weeks...

23 days since our sweet girl went back home. It feels like it has been much longer.

This past week, she would have turned 7 months.

In the mornings, I often don't want to get out of bed. I want to hide under my covers.....and not face another day without Adalyn. At night.... My mind is flooded with countless memories. With fears. With internal battles. I have nightmares frequently. Nightmares where I loose all that I hold most dear over and over.

Some moments, I feel like I just want to let myself fall into the dark hole of grief. To let it consume me completely. I am scared of so many things. There are so many things that scare me to relive. Many things that I still struggle and have a form of anxiety over. I miss our sweet baby. I miss her in every second. She is my missing piece. A part of me that I cannot stop longing for.

My heart feels like it has been crushed into tiny pieces, When I think of all that Adalyn had to suffer through, I feel sick. I can't breathe. Every part of me wishes I could have taken it from her. Sometimes, I am angry with myself that I couldn't. At times I feel like I somehow failed her. It is still too surreal to be able to wrap my mind around the problems she faced and endured. Babies are supposed to be born healthy and happy. They shouldn't have to know about pain or suffering. They are supposed to grow in their perfect, sweet innocence.

We should be singing her Christmas songs as we put her to sleep in a crib. Not at her grave. We should be picking out gifts for her first Christmas. Not her headstone.

The hot stream of my tears welling up has become an all too familiar feeling. 

This only skims the surface of our emotions as of late. But I share this because in grieving for Adalyn, I am learning some things.

This life can be painful. It can hurt in so many different ways. Our hearts go through so many trials.We often are faced with our deepest fears. This is something I am still trying to understand. There is so much suffering in this world...in each life...

I am learning what empathy means. I have been humbled and brought to tears by the love that has been poured into our lives. Even on the darkest of our days.....that love has been a ray of light for us. We cannot adequately articulate how grateful we are for the people who have reached out to us. To strangers, friends, family, neighbors, our church.... So many have simply cried with us. Because sometimes, there just are not words. I understand what it means to "mourn with those who mourn" through these people. I hear stories of what others have faced and my heart fills with compassion for them.....the broken pieces of my own heart ache for what they too have to face.
We made and decorated a tree for her grave. It turned out perfect!

I am learning the importance of reaching out. I look back on my life, on the times I have seen or heard of people facing trials. Many times, I didn't reach out....or withheld from saying anything.....assuming that my words...or my comfort might just be a burden....or that they were probably busy. Now, I see how silly that was. Each message, card, text, phone call.....it has meant so much to us. It has helped to give us hope...and comfort. The words from even strangers have been a light to us. The comfort that comes from knowing another person has prayed for us.....hoped for us....or been touched by Adalyn has continued to get us through each day.

I am learning that tears speak volumes. An amazing woman gave us a book with this quote:
"There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief, or deep contrition and of unspeakable love." -Washington Irving

I am learning that the word grief is a small word to cover thousands of different emotions. There are layers and levels of grief. It bears saddness, dark days, unimaginable hurt, fear, denial, frustration, and helplessness. But it is somehow intertwined with happiness. comfort, hope and love.

I have learned that without my husband, I could not face any of this. He amazes me every day. I am forever grateful that I got to see him be a dad. To see his love for Adalyn is one of my greatest treasures. In seeing him break down, in tears and heart break.....I see only strength.

I wonder every day how we can do this. I question myself. I can go from being okay one moment, to a flood of tears the next.

Yet somehow....a new day continues to come.

We have been able to keep busy with a handful of different projects. Some things we have in the works to keep Adalyn's memory alive....and to share the miracle that she continues to be for us. Some things we are working on we will share. And some will be kept a secret....as we do things for others in attempts to share what Adalyn has given in our lives.

I don't know the answers to all things. I feel like I don't know much anymore these days. As much as I ache to, I cannot answer the "why" for the reason we had to say good-bye to our sweet girl.

All I know is that God loves us...with a love that we don't always comprehend. He weeps with us. He will send us tender mercies even in our darkest hours. During our hardest nights, we have felt the closeness of Adalyn. His love will always find us.

He loves me. Imperfect and broken me. 

This life is truly a beautiful gift. But that does not mean we won't face the hard. 

There will come a day when no more good-byes are said. When we will have eternity with our Adalyn Grace.

I believe that with my whole heart.

I know it. Because without that knowledge, we couldn't get through this. Despair and hopelessness would win. But we have felt to our very core the depth of love. It is real. Something that pure, that powerful.....there is no way it has an ending. It is infinite. 

My sister-in-law Heather, sent me this talk. I want to share just a portion of it...it was something I needed so much to hear:

"Please do not despair when fervent prayers have been offered and priesthood blessings performed and your loved one makes no improvement or even passes from mortality. Take comfort in the knowledge that you did everything you could. Such faith, fasting, and blessing could not be in vain! That your child did not recover in spite of all that was done in her behalf can and should be the basis for peace and reassurance to all who love her! The Lord—who inspires the blessings and who hears every earnest prayer—called her home nonetheless. All the experiences of prayer, fasting, and faith may well have been more for our benefit than for her." Lance B. Wickman. (Read the full thing here)

As someone close once said to us, "We won't just survive, we will thrive." Right now, we feel like we are just surviving. But we have to trust...that somehow....as scared as I may be....good days will come.

I wish there was a better way to individually thank so many of you who have reached out to us. To let you know what it has meant to us. Thank you for letting us share our story. For opening your hearts to a beautiful, incredible little girl. For letting us talk about Adalyn.  We will talk about her for the rest of our lives, she is a part of our lives....and we are forever grateful for the memories that we have with her.

Here is to you Addie baby. I am so proud of you, every day. I am amazed at the person you are. I am amazed at the love you brought us. I miss you deeply....but I am in awe of the miracle you are. Each day, I try to be as brave as you.


I absolutely love this video!

This is how I see you Adalyn, happy, full of love, and beautiful

November 26, 2015

A Day To Be Thankful.....Even With a Broken Heart.

My sweet Adalyn....

How has it only been a week and six days since you passed away? It already feels like a lifetime. Each day feels like a year. My head is still swimming. My heart longs for you so deeply.

I see you in everything. I listen to your song over and over and stare at your pictures. I walk in to the closet and see your clothes and my breath catches in my throat. I still haven't been able to wash the last jammies you wore. Or your towel in the bathroom.

I walked in to Harmons yesterday and had a small anxiety attack. I've never had one of those before.... But I felt like I couldn't breathe fully. Like the world was closing in. The last time I had been in there was to fill one of your prescriptions.

Your funeral was so beautiful.  Your casket was amazing. It is still surreal to use those words. I know you were with us that day. You got us through. I felt like I was on auto-pilot the whole time. You have touched so many hearts. Daddy and I have been carried by the thoughtful acts of family...friends...and even strangers. The past two weeks have been more humbling than I could have ever imagine. Each day since your funeral has been harder and harder as the reality of you passing away sets in.

Your casket was beautiful. The owners of Figs Caskets in Orderville handmade it for you. 

Uncle Hyram made the designs with your hands and feet that were engraved onto it.



I think Daddy and I could fill up an ocean with the tears we've cried. We miss you immensely. I have been sleeping with your blanket. So does your Dad. Some nights, we put your boppy on the floor in the living room where you would lay....and snuggle close next to it. I miss holding you. I miss bathing you. I miss staying up with you all night. I miss rubbing your soft hair and playing with your curls. I miss the way it felt to have you close.

Without you here...everything feels so empty. I can be in a room full of people, yet my whole soul still longs for you. You will forever be my missing piece. So many times a day I think.. "How can I do this? How can life still be going on with you gone? How does the world continue? " It feels like the whole world should have stopped.

There are so many things that scare me baby girl. Some memories that are hard to relive.

All of the kids released a balloon. I loved seeing how excited they were....I'm sure you loved it too!


Mornings and nights are the hardest for me Addie baby. In the afternoons, I can function okay. I can even, for some moments, be a little numb to all of my emotions. I pray so much throughout the day to feel you close by.....and am so grateful to have felt you.

Today  is Thanksgiving. I can't believe it sweet girl. How could the holidays come without you? Today is hard. So hard....but because of you....I have so much to be grateful for.

You brought so much love into our lives.
You taught us to be better people.
You helped us learn how truly important each moment is.
You reminded us that life is a beautiful gift...each day is how we use that gift.
You gave us hope.
You taught us the reality that God lives. That He is in the details of our lives.
You brought some of the most incredible people into our lives.
You helped me fall even more in love with your Daddy.

Seeing so many little families around makes my eyes well up....because of what you taught me. You made me realize what a beautiful thing it is to be needed and loved by a child. There is nothing greater. There is nothing more precious to hold then a little hand.



I could go on and on about the reasons I am so grateful for you Adalyn, You gave me so much in the 6 months and 11 days we had you here. I have no doubt I will continue to learn from you.

I hope you never forget how deeply you are loved. I pray for you every day.....that you will stay close by....that you can know how much you meant to us......and for us to always remember the lessons you taught us. I believe prayer is eternal sweet girl. And I know you can feel it too.

Missing you feels like a giant nail has pierced my heart.....and every few hours that nail gets hit with a hammer. The pain of missing you takes my breath away.....and reverberates into every part of my soul.


I don't want anyone to forget the memory of you. So I will continue to write. I will continue to share your story. To share all the good you brought....and the lessons you taught. Your story is one of hope...strength...endurance...and powerful love. Your mark on the world will continue.

So here is to you,  Addie baby. Thank you for who you were.....who you are......and the impact have on us. We will very slowly re-learn who we are with how much we have changed this past year.. I know this holiday season is going to be incredibly hard...Christmas is my favorite time of year... I wanted to be able to watch you in all of your "firsts." However......even knowing this will be the hardest Christmas we have ever experienced.....I know it will also be the most beautiful....the most spiritual. I will see you in all the good. The lights. The smells. The songs. The warmth. The hope. In celebrating the birth of our Savior.
Look closely. 

Your Daddy and I long for you.....We will spend a lifetime longing for you. We love you more than words can describe.


Happy Thanksgiving Adalyn Grace. You will forever be the reason I am grateful for all that I have. Our lives are so blessed. Thank you for helping me to see the good.

Your life showed me that no matter what we are facing....hope follows. Gratitude can be found in the hardest of moments. It is a ray of light in a dark tunnel.


Stay close to me baby, I need you in every moment.  




November 16, 2015

Ready or Not

I don't even know where to begin. My heart feels like it is lost....and searching for it's missing piece.

The past three days have been some of the longest days of my life....It seems like it has been a year.

So much has changed since my last blog post, so much has happened in a mere week and a half. I feel like my world has been turned upside down and then given a huge shake.

As always....I work through things best by writing. I feel like I need to write. I have to. I have to share with the world how strong my baby was. I have to share with them her fight....and why she is ever our miracle....ever our hope...ever our light. So, buckle in my friends....for the past week of our lives.

The week prior to Adalyn getting sick...we threw her a half-birthday party!

Last Wednesday, David woke me up to tell me that he thought Adalyn was getting sick. Immediately my heart sank.....but I tried not to be too worried. We had battled colds before. Her heart rate had been between 180-200 all morning. She was sounding labored to breathe....and she had spiked a fever. We were scheduled for a well child check that day... So we just called our pediatrician and asked to come in a little early. Little did we know at the time, how bad Adalyn really was.

At our appointment, our doctor sent her for a chest X-ray just to be safe. The results were bad. Very bad. Quite frankly....the worst they could be. Adalyn's lungs were completely whited out. Meaning there was absolutely no room for air. In fact...her lungs were so filled, that they almost looked like bone on the X-ray. We rushed to the hospital to be admitted....still not fully comprehending how sick our sweet baby really was.

For the first two hours being at Dixie Regional Hospital, they struggled over and over to try and draw blood cultures from Adalyn....they needed to see what bacteria she had caught. Her adorable chubbiness meant it was really hard for them to find a vein for a blood draw or an IV. She was poked over and over. After two hours of no success...and just making Adalyn more upset....they had to act fast. Her CO2 levels had climbed to 108. Just to compare....a normal, healthy level is 45. Her CO2 levels were making her blood too acidic....and since her lungs were too full, she was unable to clear any CO2.  The body cannot function when it becomes too acidic. The just of this meaning Adalyn was an incredibly sick little girl. Life threateningly sick. They were leaning to pneumonia. However....just to look at her, you would never tell. She had calmed down and was sleeping.

They called the life flight team....and while they were waiting for the team to arrive they had to intubate her. Meaning placing a breathing tube in and having a ventilator breathe for her to open up her lungs and start getting rid of all the excess CO2. The first 3 times they intubated her ....it failed. She turned blue....then gray.....and her saturations dropped to 0. David and I stood at the edge of the bed....trying to grasp if this was real life....if we were really watching our baby die.... They were able to bag her back each time...and finally on the 4th try....were able to get the tube in and hook up a ventilator to start breathing for her. It was like watching a horror movie....but we couldn't look away.

We felt sick. Stepping out of Adalyn's room was surreal... we had been so caught up in being right next to Adalyn that we hadn't noticed the chaos around us. In her room was the neonatologist, the anesthesiologist, the NICU nurse practitioner, the lab nurses, the respiratory therapist, the life flight nurse and her pediatrician. Outside her room was a crash cart...and another cart with drawers open and supplies out....

I vaguely remember a nurse handing us sandwiches and giving us hugs.

The life flight team loaded us up in an ambulance, took us to the St. George airport. Those two nurses were incredible...and were such a tender mercy. We flew to Salt Lake, then took another ambulance to Primary Children's. Adalyn was so brave....in a matter of hours...she had been poked....prodded...poked some more....had an IV placed... sedated and intubated. She just continued to hold on to our fingers. I felt more helpless then ever. This wasn't supposed to be happening. We weren't supposed to go to Primary Children's like this. We were supposed to go the following week to start the Ketogenic diet. Not because she was sick.



As we left St. George....we realized our first miracle. Adalyn hadn't seized for the 3 hours that we were at Dixie Hospital. That hadn't happened in forever.

Right as we were taken into the PICU....the doctors pulled David and I aside and told us the chances were very low of Adalyn surviving this.....of ever being able to remove her breathing tube. When we heard this, I felt like I had been hit in the gut with a spiked bat. How could that even be possible? They asked us to start thinking about what we wanted for her....and to begin thinking about comfort care. My mind felt like exploding. All along we knew that Adalyn's life would be cut short. But it wasn't supposed to be this short. It wasn't supposed to happen now. We still needed years to love on her!

Yet there we were. By this time it was about 1 am...David went to sleep for a couple hours in a sleep room. I sat next to Adalyn....helplessly holding her little finger and cried. I sat and stared at the rhythmic rise and fall of the vent breathing for her....trying to comprehend an ounce of what had happened that day. This was my perfect, sweet, loving baby. As I sat there, yet another doctor came in to tell me the chances of Adalyn surviving was slim. Through that night.... Adalyn was given two sedatives....morphine...and a dose of ativan (a rescue seizure medicine), and was still having mild seizure twitches about once an hour.

I remember at one point just standing in the bathroom....sobbing....trying not to hyperventilate and keep breathing. There were times when I literally pinched myself thinking....this cannot be real. This has to be a nightmare. I would shout in my mind....please wake up...please wake up....wake up!

But it wasn't a dream. It wasn't even a nightmare. It was really happening. 



The next day came and with it....more terrible news. Adalyn did have pneumonia. And there was a small infection. But it wasn't because of a bacteria....or because of a sickness she had caught. They called it an aspiration pneumonia. Meaning that Adalyn had been aspirating her own secretions into her lungs. Because she had been seizing so much, she wasn't swallowing very well....so those secretions would go into her lungs. At her baseline, Adalyn doesn't breathe very deeply, or cough very deeply....so those secretions had the perfect environment to grow into something nasty. She became sick so quickly because her lungs had begun collapsing on themselves. Her body wasn't perfusing well...(meaning not enough oxygenated blood was going out to her body).

All of that combined had put Adalyn into respiratory failure. Because of the nature of Adalyn's syndrome.....this was the worst thing that could happen. 

They were suctioning her frequently. Which is awful to watch. Horrible. Terrible. A breathing tube is like have a straw in your lungs. Your body cannot swallow because the tube is there. To get the secretions out of her lungs they had to suction. Suctioning through that straw is awful. Each time Adalyn would start coughing so hard...but it was a silent cough...because the tube was down her throat.

My heart broke to watch silent tears stream down her face.....and be able to do nothing. To whisper in her ear we were trying to help her.

Each time she would begin coming out of sedation...she would start seizing harder. We had some beautiful moments though...when Adalyn would wake up....and squeeze on of our fingers...and look at us with her all knowing, loving gaze. I felt so often like she was saying "It's okay mom. I'm still here."

Again we were told that Adalyn wasn't going to start breathing on her own. She was relying too heavily on the ventilator. David and I were taking 2 hour sleeping shifts....Neither one of us able to stay away for very long. The body does incredible things on adrenaline and no sleep.

Saturday.....an amazing thing happened. They did a breathing trial....meaning they turned off the ventilator to see if Adalyn would breath on her own...and our little trooper did! She wore out quickly...but she did it for about an hour. We were both so proud of her.

However....by this point David and I knew. Her doctors had talked to us countless times. Even if Adalyn was able to have her breathing tube removed.....the chances of her surviving much longer were very small. We had been warned about this very thing since she was born. Her lungs were failing. No one knows why her lungs have progressively gotten worse throughout her life...but here we were. The severity of her brain structure and her failing lungs made for a terrible combo.

Her lungs could get her better...but not by much, this would happen again and again. More quickly. Her lungs couldn't stay open....sickness or not...they would continue to collapse.

We could trach her....but if we did we would also have to sedate pretty heavily much of the time...because nothing else helps the seizures...Essentially she would become totally reliant on life support.

We couldn't do either. We were at the worst crossroads in the world. It was like asking if we wanted to jump into a vat of lava.....or a pit full of knives. When she was first born, we were told that the best case scenario for Adalyn would be only a few years...and that is if we were able to control her seizures....and if her respiratory system didn't become a problem. Even when they had first told us this....we didn't want to believe it. Well....we had hit the perfect storm. Adalyn's quality of life before this episode had been declining fast. Her seizures had taken so much away from her....she was almost constantly seizing. Getting her back to her baseline would mean she was still suffering. Putting her on a trach and sedating her all the time sounded terrible..But having to say good-bye to her sounded the worst. 

How could we say good-bye to our baby?

On Sunday.....Adalyn had another breathing trial....and did amazing. Amazing for her that is. She was breathing without the vent for the whole day! We had decided that day....after many prayers....tears....more prayers...and several break downs, that we would remove her breathing tube that evening and see what happened. If things went wrong, we would not intervene. We would opt for comfort care. If things went well.....we would go home on hospice and enjoy the weeks we had left with her. I could never fathom us reaching this point. We had fought so hard for her...we never wanted to accept that she would leave us. In fact....I wanted to kick...scream and throw a fit that it wasn't fair. Yet, here we were. Even our best case scenario....if all the doctors were wrong...things would still be incredibly rough and still declining for her. There was no magic medicine to fix her brain structure.

The doctors told us that they didn't feel removing the tube would go well. They didn't think Adalyn would be strong enough. That evening, our family all came....we sang her songs, and all prayed together....it was beautiful....and it was time to remove her tube. David and I stood by her side...they pulled her tube and immediately placed on the nasal cannula....but it wasn't helping. Adalyn's saturations were dropping fast. And her heart rate started to plummet. I started sobbing. This couldn't be it. It had felt like the right thing to do. We felt we would have a little more time!


She turned blue, again. And gray, again. And then....miraculously.....started gasping again. Her numbers began coming back up. She was a fighter! She had her own plans...and going at that moment was not in them.

That night, because the tube was removed.....we were able to hold her. It was the most incredible feeling ever. After not getting to hold her for days.....we just wanted to soak up everything about her in our arms. It was perfect. Holding her close and just squeezing her tight without having to worry about all of the tubes. The whole night we kept waiting for her seizures to come back in full force...but they didn't.. Another miracle. In fact....Adalyn hardly had any seizures from the time we left the hospital through her passing away. She had a few mild ones every couple hours...but they were so small. It was an incredible tender mercy.


The next day....we didn't know what to expect....We wanted to take her home....but we were afraid of the 6 hour drive home. We had a meeting with all of her doctors....her amazing neurologist....and our favorite people from Rainbow Kids, Surreal doesn't even begin to describe the feeling I had. Walking into that room with a room full of doctors....and sitting on the couch felt like something out of a movie....when they have horrible news to tell you. Everyone has sad looks on their faces. Everyone already knew we had chosen to opt for comfort care.

Elisa...oh how we love her! Adalyn definitely liked her even more without her stethoscope. 

I had always thought that when things came to this point with Adalyn....that when we had to start discussing end of life care.....that I would be angry. That I would be mad at everyone.....Mad at God...

But as we sat there.....something completely different happened. They told us they had arranged to fly us back home. (Folks....this doesn't usually happen). They knew our drive would be long. And wanted to help. They each went around discussing what they felt would happen the next few weeks...and the severity of Adalyn's case. They expressed so frequently their admiration for David and I. They told us repeatedly that Adalyn truly is a miracle for surviving this long.

In that moment....all I could feel was an overwhelming sense of gratitude. I sobbed. I felt so grateful for these people. For their sacrifices for my baby. For her neurologist....and helping us to always try for more time...to try to find something to help her. I felt so grateful for Adalyn....to be her mom. To have witnessed a miracle grow before my eyes. I cannot describe the peace I felt. I knew God was in charge. That He was helping to prepare my heart.

That evening a wonderful  music therapist came to her room to ask us a lot of questions about Adalyn and how we felt about her. She then went and took everything we said and put it into a lullaby for her. A song that I have since listened to hundreds of times. I wish I could play it on every radio station in the world.. You can listen to it by clicking here

Tuesday morning.....our life flight nurses came to check in. They were the same nurses that flew us the first time....and we had fallen in love with them! When they came, they had brought an outfit for Adalyn, so she could "Go home in style." It was beautiful. My heart was so touched that they would go so above and beyond because they had felt such love for our sweet baby.

Best life flight nurses ever. They treated Adalyn like a princess!

Her doctors and neurologist came to bid us good-bye..... My heart was touched even more to see the tears in their eyes as we prepared to go.

I cannot tell you the words to describe my emotions of leaving the hospital.... Of loading my little girl on the plane.....knowing we would be taking her home to watch her pass away. Surreal doesn't even begin to cover it.


It wasn't supposed to happen like this. You are only supposed to leave the hospital when your baby is healthy and going to be okay. Adalyn was so sweet....once she was changed into some comfy clothes....unhooked from monitors....and all bundled up...she zonked right out. She seemed more than happy to go home. Adalyn has always felt wise beyond years....and in those moments....she seemed to know far more about what was going on than I did.
This picture captures my heart. Flying through the storm....and the sun finally broke through to shine on her sweet face. 

I was trying to hold myself together minute by minute. I was trying to keep breathing.

As the plane took off....we drove through some pretty dark storm clouds for most of the flight.....then suddenly....we were on top of the clouds. The sky was so blue.... The clouds below looked like an endless sea of beautiful white blankets. And yet again....I sobbed. All of my emotions were barely held together by a thin dam. A dam that frequently broke.

Up to this point....those were the hardest days I had ever lived.

Once we arrived back home....our life flight nurses helped to get us settled. In a matter of hours of being home....Adalyn was clearly starting to become uncomfortable. We began giving her morphine that night.

Tuesday night, David and I both alternated a 4 hour stretch of sleep. That might not seem long....but it felt incredible. We had been running on 1 1-2 hours a night all week. Adalyn was so incredibly peaceful that night...it was beautiful. I wanted to freeze that moment and simply stare at her forever. Watching the rise and fall of her chest and breathing in her smell.

Wednesday was when things took a hard turn for the worst.

When we brought Adalyn home....we thought we would have a few weeks. We thought it would take her body a while before things got bad again. As it would turn out....her lungs were worse than we thought.

Wednesday night, we thought she wouldn't make it. Her oxygen saturations were in the 40's. She was struggling to breathe....It was heart breaking.  Yet in the early hours of the morning, she had a few hours where she did okay again. David and I had pulled mats out into the living room and put her between the two of us to soak in every possible second with her. Her last few days were hard....yet incredibly beautiful. The moments she was awake...she was so clear. She was present....I have no doubt she knew exactly what was happening....and she was trying to help David and I be strong.



During the day on Thursday.....Adalyn would even slightly cough and she would turn blue and her oxygen would drop. Her secretions were thick..but they weren't the problem... Her lungs just couldn't oxygenate.

By Thursday night, Adalyn was not in good shape. Our sweet family friend Ora came to take pictures of Adalyn...she was such an incredible help for us in so many ways. We were told that as the lungs fail....the heart rate increases to try and compensate. Typically, this doesn't last very long before the heart fails too from trying to work so hard.


For Adalyn.....this lasted hours and hours.

And this is where my heart shatters. No one should ever.....ever have to watch their child die. It is the most soul wrenching......heart breaking....agonizing thing I have ever experienced....and that is an understatement.

I think I will forever be haunted by it. Adalyn's heart was so strong....so full of love....that it wasn't ready to give out....but her lungs couldn't do it. There were so many times that night when she stopped breathing. Where we said our broken good-byes.....and then she started breathing again.


At 7 am on Friday....we knew it was the real thing. Adalyn's lungs were shot. And her heart was wearing out. At 9:19 am....we were both still holding Adalyn. I whispered once more to her that she was the bravest girl in the world....and we loved her so deeply....and that I wasn't ready to let her go...but that I knew she was brave enough to let go. At 9:20 am....Adalyn opened her eyes....and lovingly looked at us one more time....then she took her last breath.

She was so valiant and pure right to her last moment. She was strong and brave...The room was filled with so much love. I had no doubts angels were present and encircled her entirely.

To say we are heart broken doesn't begin to cover it.

I miss her so immensely it hurts. I miss her in my arms. I miss her smell. I miss her sighs. I miss changing her diaper. I ache to rub her little head and kiss her cheeks. I long to feel her warm breath on my face. I feel like I can't breathe. I feel like at any moment I am going to be swallowed up by a sea of emotions.  Getting a full night of sleep means that there is no Adalyn to take care of all night. I go from feeling at peace....to sobbing. I can't go anywhere without holding on to something of hers.  I sleep with a pair of her jammies....or her blanket. I look at her pictures and long to re-live those tender moments. 

Taking care of Adalyn was the most important job in the world. Without her here....our hearts feel lost. She endured so many things in her short life....yet she was always our ray of light. I have no doubt she will continue to be.


I can't even bring myself to do the rest of our laundry....because I don't know if I can handle the day where there are no longer any of her clothes to wash.

And so here we are. Today...we picked out her casket. We bought burial plots...three of them.  We have planned out her funeral. We dressed her in a beautiful white dress....and I got to hold her once more. Feeling her body once more in my arms....my heart felt like it was on it's last stand. I am at a complete loss of words to describe that moment. My heart hasn't yet accepted that this is real. That my baby is gone. She looked so beautiful. This perfect angel.

 How can we do this? How can anyone do this?

Babies aren't supposed to die. They are supposed to be loved...and snuggled....and loved some more.

I feel scared that this is only the tip of the iceberg of our grief.

However....through our grief...we have been given some of the most beautiful miracles...we have been given such tender comfort.

So many people have reached out to us.....and have shared with us the many ways our sweet Addie has touched their hearts.

I have wondered countless times lately how such hard things can happen to people. Why there is such suffering.... and last night I had a thought. 

At times, God allows storms to happen......so we can see His had reaching to calm the storm....and send the rainbow. Adalyn was a beautiful gift sent to our lives.....to remind us all that God is mindful of us. To remind us that His miracles are real. To teach us about unconditional love.....and hope. 

John 9:1-3
1 And as Jesus passed by, he saw a man which was blind from his birth.

2 And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

3 Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him.

The works of God were truly manifest in Adalyn's life. She has brought so many people closer to God....she has helped us all to remember what is truly important in our lives. We know there will be hard days ahead.....We know the depths of grief are real...We know that right now....it doesn't always feel like things will be okay.

But we know they will be. God will be with us along this road. His comfort doesn't end....and He will be there to carry us through the moments when we don't feel we can stand any longer.

We will get through this together. My love for David has grown in more ways than I could ever imagine. He is my anchor. And....we have the most beautiful angel to be with us in every moment. Because of her we will never stop trying to be a little better each day. We will spend a lifetime learning from the lessons she taught us. 

We will be a family forever. God didn't intend for us to have endings....but rather to have eternity. We cannot wait for the day when we can hold her in our arms again.

Until then sweet girl, we will miss you in every single moment. I am forever honored and so grateful you chose us to be your parents. There is no other title in the world I would rather have.We weren't ready to let you go....Our time wasn't long enough....but you had bigger plans. The world is a much brighter place because of you! Always stay close by.

We don't even know where to begin thanking everyone for the outpouring of support we have received. Heaven truly sends countless angels in a time of need...and so many of you have been our angels. Thank you for lifting us up.....for sharing your thoughts about Adalyn with us. For letting her story touch your hearts. Thank you for believing in us....and supporting us in so many ways. I hope someday we can somehow express what it has meant to us. Thank you for helping us to share our sweet girl with the world.


This is the last photo I took of Adalyn.....and it captures perfectly the love she fills us with.



November 1, 2015

Searching for Stars

I never knew it was possible to feel such a tidal wave of emotions all the time.

Tomorrow Adalyn will be 6 months old. 6 months longer than anyone originally thought she would live.

I have spent a lot of time thinking about the past 6 months for her. When I think of all that she has gone through....I feel my head spin. She has had to suffer through so much....and that is what I struggle with the most. I think of the countless tests and procedures she has gone through where we have had to hold her down as she cries. I think of her silent scream while she was intubated...when all we could do is rub her little head. I think of the nasty medicines she has had to be on. And of course... her seizures and spasms...every. single. day.

Her seizures and spasms have just continued to progress. There is nothing that I have ever hated more. Between her seizures and spasms....she now has hundreds a day. On a good day....she seizes every 30-60 minutes.  On a bad day...it's every 15-30 minutes. Her longest stretch of sleeping is about an hour and a half...  Her seizures now cluster. Meaning she never just has one at a time. She typically has a dozen at a time. She now has many different types of seizures. Most recently, she has started having full body "twitches" where her whole body rapidly twitches for a number of seconds. At 6 months, she is unable to move unless she is seizing. She has incredibly low muscle tone. Because of the volume of her seizures, she is exhausted all the time.

When she is awake...she is typically seizing or recovering from a seizure.

There are no words to describe how sick I feel watching her seize so frequently. How hard it is to hold her while her body jerks over and over. Day after day. To watch as silent tears ooze out of her little eyes...to see her eyes red and exhausted. It makes me want to throw up. Usually, between the hours of 2 am and 5 am are the hardest for me. At this point, it is just her and I awake. The emotions of the day weigh heavy....and it is hard to continue to take. I hold her and cry. Because there is nothing else I can do.

We know that her little body cannot endure this forever. We know that stopping her seizures from progressing is a very slim chance. We also know that if by a miracle...we are able to get her seizures under control.... because of the severity of her brain....there are other life-threatening anomalies we will have to confront.

Each day, we are faced with knowing that her life won't be very long. I hate the fact that we even have to think about that. Yet it is like a snake....that likes to slither around our feet. And I just want to stomp on that snake. To kick and scream and yell that it isn't fair.

Look at that hair! Her dad's for sure.


A year ago at this time.....I couldn't wait for this time of year. I was ecstatic to have a 6-7 month old baby by the time the holidays came around. I couldn't wait to show our sweet baby all of the best things about the holidays. To stare in her eyes are she marveled at the lights....the sounds...the smells.

One of the biggest changes for me has been the change in my prayers. For so long....I have prayed for her seizures to stop. I have prayed with all the strength I could scrape. And yet they have continued. It has been hard for me to accept. Yet now....my prayers are different.  I pray that she won't suffer. I pray that she can feel angels around her constantly...that she can know how much and how deeply she is loved. I hold to the hope that something will be able to help her.... But I pray ultimately that we can have the strength to continue to be the parents she needs. That isn't to say I am giving up on her by any means. I will always be rooting for her in every way...

Notice the blades of grass that her Grandpa Brown added for a little Hawaiian pizzazz

Adalyn has truly taught me so much in 6 months. She is the brightest light I have ever seen. She is our miracle. We will continue to be in her corner...and to love her.

She has touched our lives immensely. And with all that she goes through, she is so strong. Her body may fail her at times....but her spirit is so strong.

I cling to the beautiful moments we have with her every day. She keeps my faith going.

Some days .... like today clearly...I feel like I'm just barely holding things together. But when I think of what I wanted most out of life....to have a loving husband, to be a mother, and to have a loving family...I realize I have each of those things.

God doesn't leave us alone to face our darkest days. He sends us what we need to keep going. We may not know the "why" of all things....or if you are like us....you might not even know the "how" either.

I have realized the darkest roads often have the most beautiful, bright stars above them. 

She wasn't to happy to be in the chair right then

Some times, I get too stuck on the darkness....that I don't see the beautiful lights above me to get me through. I think the greatest display of hope we can have is to keep walking that dark road. Trusting in the light from those stars....and knowing the good we experience on the way is only a pebble compared to the good that lies ahead.

He knows the depth of the ache in my heart. He knows that I can be stubborn, angry, tired, and uncertain...but He never leaves. He keeps the pieces of my heart together when I feel they are falling apart.


He has trusted us with the beautiful, and loving little girl. Inspite of all the hard days....and all the things we have had to watch her endure....the love we have experienced because of her is greater than anything I have ever known.

The goodness in her little heart amazes me.

Here's to you sweet girl.....You continue to teach us every day. You are our whole world. We love your snuggles. Your extreme cuteness in every outfit you wear. Your chubbiness..and the irresitable urge we have to kiss those very rolls! We even love your ability to have the stinkiest toots. Watching you grow has been our greatest highlight. We love you so much!

We go up to Primary's next week to start the Ketogenic diet. I am nervous for every aspect of that trip. We will definitely be in need of your thoughts and prayers. She will have to be inpatient for 3-4 days...and if all goes well, we should be home by the weekend.

Now for your viewing enjoyment..... Here is our "Little Owl" from Halloween! 







Sigh. So cute!

Clearly we are great selfie takers!