6 Months 11 days...

That's how long she lived.

Tomorrow....Camon will be 6 months and 12 days old.

I told myself I wouldn't look at what day it would be on the calendar. I told myself I wasn't going to let myself notice...But it was too late. I already knew....and all week long it has felt like a wall I was going to smack into...

In the end, I wasn't prepared for the emotions it stirred up in my heart....or for all the different reasons today would be hard.

Our beautiful friend Donalee gave this picture to us....We love it so very much! It is everything I would imagine!

As I placed Camon down for his nap today.....I figuratively attempted to put on my floaties..and open the flood gates...And because I find out my emotions best by writing....I ended up here.

So far today, I watched Camon try to chomp on everything. Watched him try so very hard to crawl. Changed both our outfits twice due to heavy amounts of spit up. Took little walks. Sat in the shade. Cleaned. Changed diapers. Played half a dozen rounds of peek-a-boo.. And made lots of ridiculous noises to make Camon laugh...

Yet...at this time with Adalyn, she was dying. We were holding on to her desperately....knowing angels were surrounding her, waiting to sweep her up into her heavenly home. That thought still haunts me in some ways. And so often these days, I find myself in Camon's room in the middle of the night....having to just feel that he is breathing. I have to physically feel that he is still here.

Maybe I'm afraid that if I'm not on guard constantly, he too will be swept back home. As I type that out...I know it sounds rather silly, I know I can't control those things. That past couple of years have shown me all too well that there is so much in life that we can't control.... But clearly, that doesn't stop me from trying...

I guess I always thought, during the time we had Adalyn, that if I just fought hard enough. If I believed enough. If I prayed enough....I would never have to say goodbye... That November morning of watching her take her last breath....everything I thought I knew....everything I thought I was....shattered. 

Camon has helped some of those shattered pieces come together again.... But those pieces are now changed. They don't fit where they used to. They are forming a new shape. The new version of who I am now...

In many ways, today was that reminder. A reminder of so many things.

It is painful to think that Camon has now physically out lived his sister..

I wish memories were tangible. I wish I could pick one up...and just for that moment...re-live it. To smell it...to feel exactly what that moment felt. I wish I could smell exactly what my clothes smelt like after giving Adalyn a bath...and holding her wet little self close before we got her all ready for bed. I wish my arms could instantly feel they way they cradled her. I wish I could feel exactly how it felt to have her hair rub my cheek...

Yesterday, Camon was so very fussy and so very tired. Normally, I just place him in his crib for naps...but he wouldn't have it. Nothing was working. My mind wanted to just say..."Sleep child! You're tired!"

Finally...I snuggled him close and bounced and bounced. Amazingly, he fell asleep. It has been quite some time since he has let me snuggle him close while he sleeps. As I watched him, my anxiety was washed to the side. I think he know how much I needed those snuggles. How much I have been missing them with Adalyn. I wanted that moment with him to become one of those tangible memories that I could replay over and over... I want to remember how his little red nose looked...and the way his fingers kept rubbing my shirt. I wanted to soak how his hair smelled like sunscreen and fruit. I wanted to memorize the flutter of his eyelashes...

I'm not sure of much these days. I still tend to question myself. I wonder if I am enough. I wonder if I have enough faith. I wonder if both our sweet babies know how very much I love them....

One thing I do know....one of many things Adalyn's life has taught me in her 6 months and 11 days...is that I will never take for granted those quiet...small...simply beautiful moments. 

Her 6 months and 11 days taught me gratitude. To be grateful for time. 

In 6 months and 11 days she taught me how to be a mother. To focus on what matters most...and let everything else wash away.

In 6 months and 11 days...I learned hard things happen. I learned what it feels like to be completely and utterly devastated. I learned that having faith doesn't mean bad things won't happen.... And when they do happen....it doesn't mean that your faith wasn't enough. I learned to honestly pray to my Heavenly Father...in anger, in humility, in love, in gratitude...and in defeat. I learned that no matter how hard I try, I am not in control of this life.

I learned that one little, pure, noble life....can change countless other lives forever.

And now?

In Camon's 6 months and 11 days....he has taught me to laugh again...and really mean it. 

In his 6 months and 11 days, he has taught my heart that it is still capable of loving so deeply. He has brought us so much joy!

During his 6 months and 11 days, I have once again faced my fears of losing David....and was again...given so many physical angels, (especially family) to carry me through.

For 6 months and 11 days, I have proudly worn the constant smell of spit up. I have been frazzled over sleepless nights.... And quiet often, I have been an anxious....worried mess...

But for 6 months and 11 days... I have be so completely grateful for a little boy named Camon, who loves me without restraint.

I am realizing more and more....that we never know what life will hold. So it is up to us to hold to what matters most to our hearts. I never imagined living life after losing Adalyn. Much less...having another child...

If you have made it this far in reading, I apologize if none of this has made sense.... I guess, as emotional as I have been today...I have realized I would do it all again. A part of me will always wish it were different...I will always wish she were still here.... But even if it couldn't be different, I wouldn't give back one day.

Marrying and loving David has changed me. Adalyn changed me. Our friends and family changed me. The kindness that has been poured into our lives has changed me. Camon has changed me...

I hope....that someday...my life can reflect my utter gratitude for those changes.

To you, my sweet Addie baby, I've been finding so many pennies these days. I like to believe they are your reminders that you are near. We have been taking Camon swimming lately, he sure loves it sweet girl! I think you would have enjoyed the water too. Especially with your love of baths.You are carried, my darling, each and every day in my heart. 

I love you always!

XO,

Mommy

"She's Sick.."

November 4, 2015

I had gone to bed at 5am that morning. Adalyn couldn't sleep more then 45 minute stretches by this point. So one of us was always with her.

That night she had been so calm, even through her seizures. Her breathing, for her, seemed normal. Her saturations were good. Some moments now, I try to filter through that entire night, thinking maybe somehow I missed something... That somehow... I should have been able to change the course of events...

Around 9am, David's hand touched my shoulder. He whispered, "Amanda, I think she's sick. She has a fever. Her breathing is labored."

Those words still ring in my head at times. 

My eyes popped right open. Mentally putting on my fighting gear. At that moment, it didn't even cross my mind that later that day we would be life-flighted to Primary Children's. In my mind, I thought we would get through this like every other sickness she had.

We gave her tylenol....and she calmed down.

By 12pm...we were in her pediatrician's office. When you have a special needs child, there is never a delay when you say you need to come in. Her pediatrician was amazing, and right away sent us for a Chest X-Ray.

What I remember most about that day is how brave our sweet girl was. She wasn't fussy. She didn't cry. In fact, she was so incredibly calm.

Within 15 minutes, we had the results. You would think by then, I would have known it wasn't good news. Her doctor told us we needed to get over to the hospital immediately. Her lungs were completely whited out..... Meaning....there was almost no room for oxygen to move in and out. Breathing is sort of a non-negotiable.

Even at this point, both David and I were oblivious to how seriously sick she was. This is odd...because we both have a medical background. We know how serious it is to have those type of results.... I guess in those moments...we were just prepared to fight whatever it was we were facing. Whatever we were up against, we were going to win the battle. 

In my mind, this would just be another quick hospital stay...we would get her all better....and be back home before the end of the week.

By 3pm...we were at the hospital. We didn't even have to check in...they had been notified we were coming. And right away took us to a room. We laid her on the hospital bed....and before we knew it...our world started spinning. 

*Here is a few things you need to know. St. George, as wonderful as it is....is not equipped to handle pediatrics in a critical situation. They aren't set up for Pediatric Intensive Care Unit....We hope someday, they will be. Even so....we are forever grateful for what they did for our girl.

For the next 2 hours....they attempted to get an IV in...and failed over and over. They needed blood cultures, and to start medicine. She was poked more times then I can count. David and I held her perfect little fingers. Whispering over and over that she was the bravest girl we knew. Even through all that..... She didn't cry.  She would squeeze our fingers and cringe with each poke. We stood close by. Rubbing her sweet arms and legs.

At this point. I started panicking. More and more people were flooding into the room. Her blood results came back and showed her CO2 levels way over double what they should be. Meaning, her body was becoming dangerously toxic.

Life flight was dispatched...but would take over an hour to arrive.

They attempted a CPAP machine, but didn't have the right size for her. With her numbers continually increasing, they had to get her intubated. Immediately....

David and I moved to the foot of her bed...and watched them attempt 3 separate times to get the breathing tube in. Failing each time. Her oxygen would drop close to 0.....and they would need to bag her back to breathing once more. Something that still creeps into my nightmares.

It was then my heart began to feel like glass. And the blows it was sustaining....were shattering. 

By nothing short of a miracle...Adalyn didn't seize that entire time. Almost as if....amid the all the chaos...Angels were carrying her. 

I stepped outside her room and couldn't fully breathe. Her room had over 20 people attending to her. Carts were surrounding the room...drawers haphazardly pulled out...

By 8pm...Life Flight finally arrived. They had got her stable by this point...and hooked up to the ventilator. They loaded her up into the ambulance...and off to the airport we went.

By 9pm....we were wheels up in the air. The dark of the night seemed to match my fear of what was to come. David and I could hardly exchanged words...mostly just utterly panicked looks. Tight hand squeezes. And tear filled eyes.

I stared at Adalyn that entire flight. Somehow trying to will myself to wake up.

By 11pm...we were taken to the PICU at Primary Children's. Once more, a team was already waiting for us. Right as we got there, David and I were pulled aside by two doctors. They told us because of her history...there were no guarantees she would make it through the night. No guarantee that she could recover from this...

I wanted to throw up.. I couldn't even find the words to respond. It felt like there was no air to breathe in the room. I was waiting for someone to say the words "Just kidding, false alarm!"

But those words were never said.

After midnight, Adalyn was all set up in her room. All was calm. She was sedated pretty heavily...and for once...able to sleep somewhat peacefully. David went to try to sleep for an hour in the parent sleep rooms..

I sat next to her bed....watching the mechanical rise and fall of her chest on the vent. Soaking the side of her bed with my hot tears. I laid my head next to hers and held her hand. I kept telling her I wasn't ready for this. I wanted her to know how much I needed her. How much we still needed time....

The next morning, her neurologist came to see us. Right as she walked in, she wrapped me in a hug...and once again...I sobbed. Again...we had to begin discussing what this all meant....This event didn't necessarily happen because of a sickness alone. Her seizures caused her to aspirate.. until the point that her lungs collapsed. Which was why it was onset so suddenly.  They could get her lungs cleared....but for some reason...her lungs were not in great shape to begin with. They were too stiff. And not exchanging oxygen well. Neurologically...even not taking into account her seizures...it would be uncertain if her body could return from this. Add her progressive, unstoppable seizures...and the outlook continued to darken..

At this point...her seizures had returned. Sedation...and 3 separate rescue medicines weren't even stopping them completely.

We would be there for the next 6 days... though honestly...in felt like one giant....long...horrific day. 

David and I would take turns every so often, sleeping for 1-2 hours. Yet without fail...we would have nightmares the moment we fell asleep. Nightmares of losing our Adalyn...

Waking up did nothing to remove those nightmares. 

It's odd the things the mind remembers... I remember frequently people commenting the fact I was wearing sandals with it being winter. We lived in St. George....and a life-flight trip wasn't exactly a planned part of our day. I remember the hum of her machines. I remember the smell of the  bed we had to sleep on. I remember the yellow subway tile in the parent showers. I remember how quickly it seemed that our "troops" assembled. Our incredible family dropped everything  at a moments notice to support us. Our friends were amazing... We were flooded with messages of comfort and prayers. Even people we hardly knew dropped off baskets of snacks and packages.

For the rest of my life, I will never forget that...I will never forget how it felt to be on the receiving end of the goodness of so many. 

I remember sitting in the bathroom, pleading with God to let me wake up.... to let this just be a dream. Pleading with Him for more time. I needed years and years more to love on her. 

I remember aching to hold her. Wanting to wrap her in my arms and pretend the world around us didn't exsist. Instead..having to settle for just rubbing her head, arms and legs...holding her sweet fingers.

I remember them telling us....that absolute best case scenario...we would have up to 3 weeks. 

I remember the moments Adalyn would wake up....look at us...and instantly wash us both over with the calmest of feelings. How was it possible that a girl so small....so fragile...could be the one to remind us to have courage? To remind us of her love with such simple hand squeezes? How could it be that she was the one to hold our hearts together, when our world felt like crumbling?

Honestly.... I have never been more afraid in my life than I was those days. In fact....a year later...I'm still scared of those days.  I still feel like I can't fully breathe when I think of them.

In reflecting of that day....I feel so overwhelmingly proud of Adalyn. She was the calm in the middle of the hurricane. I feel so humbled and grateful that I get to be her mom....so grateful for all the things her beautiful, perfect, soul teaches me. I'm beyond convinced she is among the bravest and most graceful souls to ever live. Her middle name Grace couldn't be more fitting for her. She fought the hardest of battles...yet did so with so much grace.

I couldn't prepare for what was to come. Neither of us could. Yet....somehow...in the middle of our deepest darkness...Her light remained constant. Her goodness remained so pure. Her love...remained so full.

Even today, that hasn't changed one bit. 

Changed.

Right from the moment I found out I was pregnant with Adalyn.....my heart was filled with such adoration and excitement. It was thrilling to imagine that a beautiful little life was growing. A little life that would be ours....a life that would change every part of our day....make life a little messier and chaotic.. but a life that would turn our lives into something even more beautiful. 

From that moment....she was on my mind every single day, even before knowing she was a little girl. From that moment...I began changing. 

When we found out she was a little girl, our hearts felt like bursting with how much we loved this child we hadn't even met yet....

Perfect capture of how much David adores her. 

Before we knew it...our world was turned upside down..and given a hard shake. 

Each and every day we prayed hard....prayed that our little girl would survive. Prayed desperately that we would have time to hold her and whisper to her every ounce of love we felt for her. Prayed that we would get to hear her cry....and see her smile. We prayed that the doctors would be wrong....that she would be able to live and thrive. We prayed ultimately...for a miracle. 

As you know.....we got our miracle. Just a different miracle then we had planned. Adalyn's life was like the brightest streak of light across our skies. She has illuminated every part of us. On my darkest days, she continues to be a light.

Since that second I knew her life was growing inside....she still has never left my mind.

I find myself rather introspective these days. Every aspect of our lives seems so surreal.

People have asked a lot how I'm feeling...and inside, I guess I don't quite know the answer. My pregnancy with Adalyn was different in every possible way from this pregnancy with her sweet brother.

With Adalyn, we were praying so fervently that she would survive. We had countless appointments....meetings...scans....and conference meetings with teams of doctors...all telling us the statistics of her surviving.

Instead of picking out her "coming home" outfit...we were having to discuss what level of medical intervention we would want in a variety of scenarios.

This pregnancy, our little boy has been growing in just the right way....and I've been completely healthy. Yet..I still have all those fears written on my heart. David and I know with certainty how there is never a true "guarantee"  with life....and what a vulnerable feeling that can be.

We never pass a certain milestone....or hit a point where you get a ticket that says "No bad will ever happen, and all your loved ones will have perfect health!" 

Instead, we are given moments. Moments with each of the people we love so deeply.

I feel like I'm on this constant emotional roller coaster these days. It's hard for me to sometimes even understand what I am feeling.

After everything we have been through...I am a completely different "me." I look the same. Sound the same...but every part of me feels different. I don't quite know yet this new version of me. The new version that has frequent break downs, is full of anxiety and fears. Sometimes, it feels uncomfortable...foreign...and hard.

However, I wouldn't go back to the old version of me for a second. I wouldn't want to go back to a life that didn't know Adalyn. 

I look each night at the pictures we took this day last year...and I feel flooded with gratitude. Adalyn radiates love and light in her pictures. I'm so grateful for each picture I have....

Yet...I can see her getting more and more tired...and I'm scared to relive the days that are ahead. My heart aches in wishing for more. More pictures. More videos. More kisses. More cuddles. More time... 

I sat down to write this post not knowing the words that would spill out. I'm not even quite sure they make sense. So...if you made it this far in reading, props to you. I knew I wanted to write something in honor of October 15....pregnancy and infant loss awareness day. 

1 in 4 parents will lose a child before the age of one. That's 25% my friends! Which also means...there a many, many hearts out there who have a part of their hearts missing. Parents with arms that ache to hold their child. A child that is still deeply loved, fiercely missed, constantly remembered...and ever prayed for. 

So as you go about your evening....take a moment to remember those beautiful, sweet babies. And take an extra moment to hold close those in your life that you love. 

To you, my sweet Adalyn...we're coming ever closer to that year mark. The day our entire world fell apart. The day my worst possible nightmare became our new reality. Some moments, I just sit and imagine how it felt to hold you close and press my lips into your soft hair...and feel you relax into my arms. I miss watching you sleep....and seeing how beautiful the tender rise and fall of your chest was to me. I miss hearing your daddy sing to you...and hearing him tell you stories. I'm slowly trying to figure out this new person I see in the mirror..You changed me sweet girl.. I guess the hard part of change is that it's never easy. It's hard and refining. But even with the the hard days, my booger filled cry sessions, and my longing for you... You have changed me in every way for the better. Your life and light continues to reach people Addie baby.

When I lay awake at night I imagine your little brother. We just about have everything ready for him to arrive, which is still hard to wrap my mind around.
I imagine the things you talk about...and the connection you have. I've been praying so hard that he will always feel of that connection. I have a feeling he will. I hope you both know in each and every moment how deeply Daddy and I love you!

Stay close my darling, always.

XO,

Mom

Fragile.

Hello my darling, 

We have now passed 9 whole months since you returned back to heaven. My heart still has a hard time comprehending how days....weeks...and months continue to pass.

Lately I've been struggling. I feel so lost Addie baby. My heart feels so very fragile. The pieces feel like they are barely being held together with a mixture of old tape and elmers glue... ready to fall apart with the slightest of impact.

I think the past couple months have been hard for me....I have slowly began to work through some of those emotions that I've worked to avoid...or numb. Sleep has still been my nemesis. The nights I sleep best...usually means I got a couple stretches of 2-2 1/2 hours of sleep.

We made you a new wreath! I think it's perfectly fitting for you.

I still have panic attacks. More often in the evenings....especially when I'm tired. It feels like I'm in the ocean....just a few inches away from where my feet would touch the bottom. It's like I'm bobbing up and down in the water. Popping back up to gasp for air......yet I still can't fully breathe...because waves are crashing down on me.  I desperately want to bridge the gap of those few inches....to be at a place where I can stand fully...and just breathe.

I think of you in each and every moment. I wonder what bright and beautiful things you see each and every day. I wonder about the people you see.....and the good you are doing. I think of how utterly blessed I feel to get to call you mine.... I think of what you would look like now....as your dark curly hair grew longer. I think of you perfect and healthy...with your bright blue eyes and beautiful smile.

I'm scared Adalyn. Still scared of life without you here. 

You opened my heart to a whole new level of loving. You infused our lives with such powerful, tangible, and tender love. Holding you was like holding a piece of heaven. As hard as the days were, I was so much stronger with you in my arms. 

Often I hear people or strangers say, "Now you are pregnant again, you can finally move on." I know they mean well...but I disagree.

Moving on means leaving something behind. Left in the past. No longer a part of the day to day. There are moments in each of our lives.....moments that are life-changing...moments that change hearts. Those moments become a part of you. Forever entwined with your soul.  

That is exactly what you are...You are forever a part of me my darling. Carrying you in my heart every day is what makes me a better person.

There have been days this past month, when I desperately needed to feel you close. The 13th was one of those days. I dislike the 13th of each month... Do you remember how I lost the stamped footprint of your little feet? I was so broken about it. I had all but given up hope that I would find them again...

That day, I was going through the box of cards we have that we received all through last year. As I read through some of those words again, tears pour out of my eyes in a steady stream. I don't know if people will ever know how much their words have touched my aching heart....and gave me comfort....even still today. You became a light to so many sweet girl.

I opened an older envelope...and your cute little stamped feet fell into my lap. I felt you so strongly in that moment. Your own beautiful way of wrapping your arms around me....reminding me that your are still very much with me. Loving me....strengthening me. I still don't know how they got into that envelope...or into that box.

Your little brother, I think, has been practicing baby Olympics in the womb these days. Honestly, feeling him move so frequently is a comfort my fragile heart has needed. I have so many fears with this pregnancy....feeling him is almost like his sweet way of letting me know he's doing okay.

Clearly he takes after you. Already being one to give me comfort. 

Daddy carries this picture with him in his pocket on days that are hard...Clearly it is well loved. Looking at your sweet picture gives him strength and comfort I think...And reminds him he can do hard things. He loves you deeply sweet girl!

There is another thing I want to thank you for.....and let you know I'm still working on. Each and every day of your life was a reminder of how important each moment is...Of how lucky we each are to be given each day with those we love. 

Your life was a reminder of the beauty in simplicity. I think we are each so often spending our time looking forward...to the next holiday...next weekend...next appointment....that we lose sight of the here and now. We take for granted the day we are given.

This picture captures exactly when I mean. The perfect in the simple.

You gave us perspective on that...each day with you....everything else of less importance drifted away.

With you gone....I have to remind myself each day to be here. To be here in this moment. The here and now.

While I work during the week...I listen to a radio show...at the end of each show he says..."And remember, when you get home tonight, hug the ones you love."

We never know how many little moments we are given. I long for the day with my moments are once again filled with seeing you....with your Daddy....and your little brother.

I love you Addie Grace. Always and completely.  Your life reminds me that sometimes....that which is most fragile and delicate...is also capable of magnificent strength and love.

I am the luckiest woman in the world to have you for our little girl.

Stay close my darling.

XOXO

Mommy

When a Heart Breaks

I have spent so much time this past month reflecting.... Reflecting on each day of May last year. I knew this month would bring up a lot of emotions, but I wasn't prepared.

A sweet friend told me recently that during hard trials, or traumatic moments....we sort of go on auto pilot. It is a type of numbness that helps you get through the days you are facing.... A year later, my "numbness" from last May has worn off...

I shared a handful of blog posts last May...but there were many times I didn't have the heart to include everything...Times when I couldn't find the words to convey what my heart felt.. So, I'm going to go back to last year in this post. Back to many of the moments when I felt completely broken.. 

Just two short days after Adalyn was born, she had her a MRI..we wanted to believe so deeply that everything would look much more hopeful. Instead, we got the opposite. I remember three separate doctors walking us into a room..and feeling immediately scared. The look on each face spoke volumes about what was to come. Adalyn's brain was not compatible with life....best case scenario...if she never were to develop seizures or other conditions...we could hope to have 3 years.

I wanted to throw up. I felt like I was hearing underwater...and not able to process what they were saying...

As they left us in the room to hold each other and cry....As broken as we felt, we made a resolve that we wouldn't believe in statistics... we would believe in Adalyn. We would take each day...and hope we all we had for a miracle.

That night, I was discharged from the hospital. We stayed at the Ronald McDonald house close to the hospital (a place that will forever hold my heart).

As time would have it...David was getting ready to graduate from Physical Therapy school. He was required to be down in Las Vegas to finish and present his research project. Every part of me hated that he had to go. We had no idea of what to expect....what was to come. Luckily, I was blessed to be surrounded by physical angels. My angel of a sister stayed with me each day David was gone. David's sweet sister Aimee visited frequently...and we had such loving friends.

We love Aunt Amber! 

We had thought we were most certainly at rock bottom. The only way to go would be up.... Or so we wanted to believe.

The first two weeks of her life....almost each day another doctor would come talk to me about what they thought Adalyn's life would look like...again going over life expectancy...scenarios..etc. Most of those visits I wanted to scream. No one should ever have those conversations about their sweet babies. I had had to hold Adalyn down countless times for different tests and procedures, and felt my heart break with each of her cries. Each day was such an emotional uphill.

Through it all, we held to Adalyn. She was the strong one. She continued to develop abilities that amazed us

David was able to come back on the weekends...he always is my comfort. In hindsight....I still kick myself for not realizing how sick he was too.... He had hardly eaten for almost two months. He didn't have an appetite. He would eat a few bites of food...and be full. He had pains in his stomach...he couldn't walk very far without being short of breath...and his color slowly turned more and more yellow.

At the time, we just told ourselves it was stress. If you could think of just about every possible major stress people face....we were facing it. I mean, not just were we facing bringing a new child into the world...she was medically fragile. David was graduating. We didn't really have a home. Or a job.

Needless to say, our eyes were blinded...and we just assumed he had ulcers. We couldn't have been more wrong. In fact...a week before we found out what was really going on with David I had said."David...you have to stay healthy. There is no way I could handle you being in the hospital too."

As the end of May came, we had started feeling more hopeful. David was done with school. Adalyn was doing amazing at eating from the bottle....we hadn't seen any signs of seizures...We were even talking about getting ready to go home...we had almost ruled out Adalyn having to have surgery for a G-tube.

I love looking at pictures of her with her special bottle. She worked so hard! 

I felt such hope that we would go home and thrive....that the three of us could beat the odds we were up against..

However...all of my hopes came crashing down in a matter of days. Those days still haunt me....still have the ability to bring up all of my helpless insecurities.

Adalyn had a swallow study to make sure she was swallowing correctly as she would eat. We weren't even worried about her not passing it. But during the test, she showed signs of aspirating her food... Meaning some of her food would go into her lungs... The tech fed her so much at once that Adalyn threw up all over... She was so upset. I wanted to grab her and run away... Again we were left feeling heart broken...she loved eating from the bottle. It was hard to take that away from her. Hard to imagine sending our sweet little girl into surgery.... We left that test in tears....only to get hit by another metaphorical train.

Quite literally by the time we got back to the NICU with Adalyn, an EEG team was there waiting for us. We had seen signs of seizures for a couple days, an EEG would confirm if they really were.... We desperately wanted to hope it wasn't. Once more, we had to hold our sweet girl as she was hooked up to dozens of wires...

Within an hour....they confirmed she was indeed having seizures. I never knew of anything I would grow to hate more than those awful things...

That night, the pharmacist came to give Adalyn her first dose of seizure meds....Ironically...that morning I had joked with her about how we were her easiest patients because Adalyn wasn't on any medicines.... Once more I sat eating my words as she cried with us...and explained what they were going to give..

We left the hospital that night feeling like our legs had been knocked out from under us...We cried and cried for our beautiful, sweet girl...Those helpless feeling had hit us heavy that night.

The very next day....David thought he should go get his "ulcers" checked out....and I went up to be with Adalyn.

I got a call from David...his first words were..."You're never going to believe this.." I laughed. Thinking it must be something simple.

His next words were that he was heading to the emergency room. 

On his way to the ER....he was able to briefly stop to see me..... at the same time Adalyn's neurologist came to talk to me about what seizures meant for Adalyn.

I felt like my world was crumbling as I held her..watching David walk away.. Tearfully trying to listen to what her doctor said.. Trying not to let myself process David's news yet... Trying simply to remind myself to breathe.... As soon as her doctor left I quickly put Adalyn down, gave her a kiss...and went down to the ER.

I walked into David's room and felt my fears hit me like another train. Seeing him hooked up to everything made my heart sink... As it would turn out... David was in multiple organ failure... He had fluid backed up everywhere. His abdomen was full of fluid..and his lungs... He was in severe heart failure....his liver was failing....and his kidney's weren't in great shape...

By the time I got there...the Heart failure/transplant team had been notified. The first thing I could find to pipe out were.."Is he going to be okay?" Dr. Gloom....(how I like to refer to him...due to his bedside manner....) Said.."There is no way to know at this time. Look at him... He looks awful. Look at his color. Look at his legs... See...pitting edema...." Needless to say....he brought all my worst fears to the table.

The whole time... David was squeezing my hand trying to whisper... "I'm okay...really. I'm okay."

I felt like screaming....no....it's not okay! You're not okay. This isn't okay.... How can anything be okay?! 

Still smiling...even in the hospital. That's David for you. 

A few minutes later...I found a bathroom....and sobbed. I couldn't even find the words to pray other than "Please......please help." My world was hanging in the balance. The two people I loved more than anything were fighting for their lives....and I could do nothing for them...


In a matter of a few days, David went from being 150lbs....to a big 128 lbs. At that point, I felt like if someone had asked me where we lived....I would have honestly said the hospital...because that's where we were all staying...

The allowed David to come down to the NICU to visit Adalyn....I think each of our nurses and NICU team cried each time they saw David come down. We were quite the sight those days..

The next couple weeks....I would be carried by strength other than my own. Honestly...even a year later, I know it was not me that got myself through those days. Adalyn continued to teach me in those days about what courage was...  I still am at a loss to describe how it felt to send both my husband and my daughter into surgery a day apart. David, by a tender miracle, would make a full...and amazing recovery...(after losing almost 25 pounds of fluid)

Taken about a week after their surgeries. She loved naps with her Daddy!

Little did I know, even then...what would be in store for us as the months continued. Little could I be prepared for hardest good-bye we would ever have to say as the year came to an end.... 

I don't know if you've even made it this far in reading....I guess I needed to write all this down for myself... The thing is...those moments last May...and many after during last year....changed me. In every possible way. There are nights I still wake up in a panic..feeling like I need to see if my husband is okay... Nights when I replay memories over and over... Days when I feel okay...and then suddenly am over come with panic..

I share this because...yes, last May held dark days..but never had I felt such an outpouring of love. A love that would continue to carry us. From our nurses...who held me and cried....from incredible friends who showed up with baskets of food...hugs and comfort.....to our incredible family who never failed to show up...who always helped to carry our struggles.

Never did I realize that there would be people praying for me...for us...when I couldn't find the words to pray. Never could I have known that our absolutely perfect little girl would find a place in countless hearts....and help us to be filled with the courage to take one more step. 

No matter what the days held, our comfort was Adalyn. She loved sucking my finger much more than binkies!

There are still many things that scare me. Many things that I am re-learning about myself....and many breaks in my heart...

But one thing I know I can say in reflecting on last May....and many months follwing....is that I'm slowly learning what happens when a heart breaks. God doesn't leave us when those moments come. God stands beside us with each break. He weeps with us...and His love is one that never fails. We will have days....months...and maybe even years that break us... that seem to shatter every part of our heart... but God will never lose those pieces of our heart. He will build us into something even greater. His love will be the gold that fills each crack. Each break.

He knew how much we needed Adalyn. He knew her life wouldn't be easy....but He knew her love would be an incredible and life changing gift for everyone who had the chance to know her. Especially us. 

Last of all....in thinking of last May..I realize how precious and fragile this life is.. I truly realize the gift it is to have another day with my incredible husband....to have held our sweet little Adalyn for all her time here...to have spent nights awake with her...to simply have had time to give her baths...kiss her toes...sing her songs....go on walks... All of it.

Miracles still happen. Even if it isn't the miracle you expect...or think you want. 

So once more...here is to you, my darling Adalyn. What a life you have given us.....what love you pour into our lives. I miss you always....and see your beauty in so many things. You are and will ever be the greatest gift of our lives. 

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.  

Infinite.

Today....I am feeling so grateful.

So often I wish we could see the end of our story. To see the words "Happily Ever After" and know that everything turned out just right. I know that's not possible to see the end. Right now....we are merely in the middle of a chapter of our story. And as hard as this chapter may be....it is filled with so much love on each page.

I have such a deep love for our sweet girl that my heart overflows. Most days...I am not very strong. But the sweet love from her and my incredible husband gives me the strength I need to keep moving. One of the many things that amazes me about Adalyn is her capacity to love. She doesn't care one ounce about looks....or about faults....She just wants to be snuggled close...and loved. In return....she simply loves...and makes you feel so incredibly lucky to be loved in that moment.

Heart. Melted. 

I know I may sound like a broken record.....but I am amazed each day at the effect of love. Love is infinite. The effect of one act of love doesn't just stop. It ripples through countless lives. We all have a need for that pure...unhinged...all bearing love. One glimpse at any part of the world today shows that all of us need that very love in our lives to get us through. It reminds us that we are not alone. That we are enough. That we are needed. And that we have a divine purpose. My heart is so full in knowing the love from our sweet girl has rippled into countless lives. At the same time...the love we have received has rippled into our lives in giant waves.

Her new chair. It makes her look like such a big girl!

And above all the hard this week....love is what I want to fill my day today. Not the sleepless nights....or the tears....or worries....or the constant seizures.

2 Corinthians 2:14
Now thanks be unto God, which always causeth us to triumph in Christ, and maketh manifest the savour of His knowledge by us in every place.

I love this so much. It gives me comfort. I can triumph. Because Christ's hand truly is in my life in every place. Even the times I am feeling unsteady...He keeps the pieces of me together...and helps me see the miracles I do have. The love in my life is such pure evidence of that.

This picture is a huge deal. Tummy time is rare! And sometimes rather hard to do. So proud!

And for this moment...I wouldn't trade it. My doubts are pushed away. I know that someday this chapter will end..... And the words "Happily Ever After" will come.

And all will be more than okay.....because love is greater.

This past week has had it's fair share of ups and downs. Most days have their incredibly hard moments and moments of simple peace. Complete opposites? I know. So...depending on the time of day....it could be an amazing day...or the stinky pits. The increased dose of medicine has seemed to help the past week. She can sometimes go a few hours without seizing. Yet each day....things are slightly worse than the day before...and we can see that the effect of this medicine might not be permanent. If she has a bad morning....she will have a good afternoon and evening...and a bad night. If it is a good morning....she will have a bad afternoon and an okay night. Meaning she is able to fall asleep after her seizure cycles.

We have officially received our admit date for next month to start the Ketogenic diet. We will be admitted to Primary Children's the second week in November...and likely be there for at least three days. Normally.....the main energy source for the brain is glucose. Ketones are the result of the body breaking down fat for energy instead of glucose. When the body goes into ketosis....it is typically a bad thing. You may have heard of diabetic ketosis. It can often cause brain damage and other organ system problems. However...the idea with the Ketogenic diet is to purposefully put the body into a state of ketosis by feeding the body only fat. This sort of forces the brain to switch it's energy source. In many kids with frequent seizures...this sort of "reboots" the brain and for some reason, helps to stop seizures. With Adalyn... they are not sure what will happen with putting her body into ketosis since her brain itself is so abnormal. It may make things worse. The hope is that it will help her.

Thanks to my dear friend's brilliant idea...I made these! She is real, funny wise beyond years. You can read more about her family here 

Putting the body into ketosis is a very fine line. Which is why we have to be admitted to the hospital. They have to find just the right ratio. Too much....and it will cause damage. Too little and there won't be a desired effect. Once she is in ketosis.....we will have to check her pH levels multiple times a day to make sure she stays in that sweet spot. To say we are nervous for it would be a slight understatement! But right now, I'm not thinking about that.

Thank each of you so much for your prayers. For believing in us. For helping us hold to hope. We have received such beautiful things this week! From the most beautiful flowers....to such tender pictures drawn by a little girl with such a big heart. We also had an amazing visit from some of our very best friends in Vegas. They drove two hours just to spend the afternoon with us. We truly have the best friends and family. Without all of you, we wouldn't be able to continue!

We love, love  this sweet family! They have done so much for us! Not only that...but they brought Adalyn so many clothes! Their little girl loved rubbing Adalyn's head. So adorable.

It made our day to get these in the mail! Thank you so much Steve and Katie for the love of your sweet family, especially your little Lucy!

Just because flowers from the Ashmore's....We loved having these to look at all week! They are such happy flowers!

And now....I'm going to go continue snuggling with my baby girl....and maybe even smooch my husband. After all....they're what it's all about. 

I love them infinitely.