Imperfection.

When we were discharged from the NICU with Adalyn last May, we were given a POLST form....and asked to spend time together thinking about it. If you know what a POLST form is, your stomach is already cringing at the thought... It is a form that no parent should ever have to think about for their child..

It stands for Physician's Order for Life-Sustaining Treatment. It is given to those with often terminal conditions....as a type of Advanced Directive....to help first responders, doctors and nurses all know your wishes.

I love seeing all of those perfect arm rolls!

Once we were home, I took that form and ripped it up. I didn't even want to think about it. At that time, we kept Adalyn at a "full code" meaning, we wanted to do all we could to keep her. We were going to fight for her....every step of the way. 

At this time last year, we were at Primary Children's once more for appointments....when that form was once more placed in front of us. Adalyn's condition was getting worse....her seizures were becoming life-threatening at the rate they were progressing. The medicines she was on and had gone through...weren't working. Her little lungs, for some reason that confounded everyone....continued to decline.

Once more...we said we would think about it. In my mind....I wanted to push out the thought completely. How could I ever sign that?? I couldn't even let myself go there. I wasn't done fighting.

Little did we know, our time with our sweet girl was already ticking down. And within a month and a half....we would have to re-visit this form.... The time was coming when we would realize our fight for Adalyn needed to be different...

As October and November draw near....I want to hide. To somehow run backwards fast enough to stop these months from coming. 

Those months were beautiful....sacred...and so very tender. Yet...they were also incredibly hard, devastating....and heart breaking

I'm scared of re-living those days. Scared of the year mark that will come in November. 

As I have thought about all our emotions...I have had a few thoughts. I think, all too often, there is a stereo-type among us. A feeling that we all need to put on our happy faces....that we shouldn't admit to have a hard time....to being vulnerable...to having faults..or to being afraid. When we do...others often feel the need to "fix you" to make you happy and perfect once more.

Throughout this past year.....and in thinking of the days to come....I think more and more of all the imperfections I have. I fall apart quite frequently. I'm anxious. I'm often scared. Some moments trigger PTSD from events of last year. I feel the breaks in my heart. I feel unsure of myself...and the person in the mirror seems so foreign to me. At times I feel lost...and my yearning to hold Adalyn once more...to breathe in her sweet smell feels overpowering.

There are no words to take those feelings away. No sudden change that will take away that grief....or change what we went through.

And honestly....I wouldn't want anyone to.

Conference weekend last October will forever hold one of my favorite views! 

Adalyn's entire life.....and even in the months since she has been gone....I have felt the greatest depths of gratitude. I have felt greater empathy for those around me. I have found the beauty in the small and simple. I see the more clearly the good. I have loved intensely. I sit in the shower at times...and stare at my growing belly and see what a true miracle this little life already is...

The days we are walking through have been the darkest I have ever walked...yet I have been acutely aware of the beautiful lights we have been sent. Acutely aware of the prayers on our behalf. Acutely aware of the incredible people we have in our lives.

I say these things because I think there is something beautiful about imperfection....and it shouldn't be shameful.

I think to have true joy, we will have a fullness of sorrow. A fullness of grief. A fullness of pain.... Because experiencing those things, shows us the absolute miracle of light. It shows the comfort in friends and family...Most of all...it shows us the power of love. Joy doesn't mean we never experience dark days. I think it's rather the opposite. It means we've walked through the dark days... and we've received our scars. The pain of those days doesn't disappear. Instead, it is all apart of who we have become...but the love we've gained through those dark days is far greater, deeper and more beautiful than before. Maybe joy is knowing and trusting that there will come a day when God heals our hearts perfectly. 

I think I now understand what it means to "Mourn with those that mourn"  It isn't about trying to say words to take away another's pain. It isn't about "fixing" anyone. It's simply being present. Holding a hand. Crying with them. Reminding them that they are loved.

It's admitting that some things we face are absolutely, undeniably hard.... Admitting it's okay to have a hard time. It's okay.. (as the amazing author Brene Brown would say)...To have the courage to be vulnerable.

I am completely imperfect.  I miss Adalyn more than my words could ever convey. I question myself so very often...wondering if she knew in each and every moment how much she was wanted....and deeply loved. I still pray for strength to get through each day.

I'm not implying that our imperfections should rule and control our lives. Nor do I want to stay feeling the way I do forever. I want to be better. For Adalyn...for David...and for our growing little boy...but I'm trying to remind myself to be patient with where I am now...

Maybe sometimes....imperfect is exactly what we need to be. 

I think maybe....it is those very imperfections that help us to find God...to feel Him near. To feel His hands of comfort holding our tender hearts.  

To you my sweet Addie Grace....goodness how the days feel so long without you! As fall creeps in..so do the fears on my heart I had last year at this time. The fear of losing you still haunts me...even as we are slowly coming up on the year mark of you being gone.

I've had so many moments where I've felt you so powerfully...almost as if I could close my eyes and feel you in my arms...Yet I'm realizing that it's like trying to hold the rays of the sun....or grasp the breeze...I simply can't...as much as I want to in every way.  I have to just let myself soak up the feeling of your closeness....Knowing you are never far.  Trusting in the day I will get to hold you again. I imagine you spending time with your little brother....I'm certain he loves you so much! Last week...on an evening when Daddy and I were especially missing you...we went to the cemetery and read books to you and your brother. It was good for our hearts.

Last week...on an evening when Daddy and I were especially missing you...we went to the cemetery and read books to you and your brother. It was good for our hearts. 

I am ever grateful for your beautiful life and light my darling. We have so many projects in the works for both you and your brother...I'm hoping they all come together soon! Please stay extra close to us as these next two months come. I need you so very much.

I love you Adalyn, always and completely.

XOXO
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

Risks Worth Taking.

David and I have held onto a specific little secret for quite sometime. 

After losing Adalyn, we were certain we weren't going to have anymore children. Having Adalyn was the greatest gift in the world.....but watching her go through such hard things.....and having to say good-bye was something that I knew I couldn't bear to go through once more.

However, as it would be..... Adalyn must have had plans for another sibling. 

I am 22 weeks along, and we will be welcoming him into our lives this November! 

Becoming pregnant once again has been an emotional whirlwind in and of itself. The pieces of my fragile heart feel like they are barely held together. 

I have had so many fears....and it is still difficult for me to articulate those feelings into words. The news of a baby.... I have always felt is worthy of being shouted from rooftops. Babies are the most incredible miracles.

But how do you let your heart be excited....when it is so afraid of what could go wrong? When it is so afraid of worst case scenario...because...well....the worst case scenario happened? 

So it became our secret. With each ultrasound I have had....David has held my hand as we have cried through each one. Seeing this sweet little baby move...has made our hearts burst with gratitude, and long for our little Adalyn. Somehow, what may be a simple ultrasound to most.....is something that reminds us each and every time that miracles are real. That love is so powerful. Yet....the most vulnerable thing in the world.

As we anticipated the ultrasound that would tell us if our little boy had similar issues as Adalyn....or possible heart defects....I felt like a basket of emotions. We found out just over a week ago, that both his brain...and his little heart are looking perfect. I still don't have words for my gratitude!

Yet....my heart still has a whole other realm of emotions.

When we found out we were pregnant with Adalyn, with a sweet little girl....I couldn't wait to prepare for her sweet arrival! All too soon...we were told that the changes were slim of her surviving birth... So we never did the typical things to "prepare" for a baby. We never shopped for clothes. Picked out cribs. Decorated a nursery. We didn't know what to plan for. So instead, we put all our focus on praying for her each and every day.

I know that is a silly thing to confess..but I say that because my heart is still afraid to prepare for a baby. As if the moment I let myself....something will go wrong...

The other part of my heart still longs  for Adalyn. I think it always will. To long for her to be here as we prepare for her little brother. To see how loving she would be with him...to watch the two of them bounce around together is a site I long to see.

The thing is.....I could go on and on about the things that scare me. About all of my fears and worries...and thoughts that run across my mind... But I'm not going to do that.

Love is a risk. To love someone....to place a part of your heart and soul into their hands...is the greatest risk. It leaves you vulnerable and susceptible to heart break. 

Loving another person means there will be nights and days of worry. It means there will be tears. It means you will forever sacrifice all of yourself for someone else.

But is also means you will experience something that is far greater and more beautiful than anything the world can offer. Love is a piece of heaven....that you get to feel every day... It is being able to feel just a small piece of the presence of God I think. Loving David...and Adalyn has changed my world. Each and every day I am so grateful for them...for the person they have helped me to become. For the piece of their heart I carry with me.

So in the moments that my mind becomes crippled with my fears...I think of that.

Love is a risk, but it is worth taking every single time. Love is the squeeze of David's hand in mine, reminding me we can do this. Love is the light in Adalyn's smile. And love is what we feel for our little boy.

July 20th. The day I finally caught a picture of that brilliant smile.

And I wouldn't change any of those things for the world. Without love, life loses it's beauty. It's vibrancy..  Love is the good that is intertwined in all the little moments in our lives. Adalyn's entire life will forever be a testament to that truth. Her love is  one of the most beautiful things I have ever held.

We know that pregnancy....and bringing this little boy into our world will be emotionally hard.  But we also have felt so strongly of the love that Adalyn has for her little brother. I know she is going to be so very close to us.....and I look forward to seeing all of the ways that she is there for her sweet little brother.

As always, my sweet girl. I'll end with a note to you. Each time I feel your brother move, I feel so blessed...it is like a constant reminder of what a miracle life is. It also makes me so grateful that I was able to feel those same things with you. I promise that Daddy and I will learn to open our hearts completely again. We will be certain to give your little brother all of the love we have! I have no doubt that he is pretty special, he is your brother after all. My thoughts are with you always my darling. We love you so very much!

With Pioneer day tomorrow, I felt it very fitting to share this picture from last Pioneer day. Cutest little Pioneer I've ever seen!

The Undercurrent.

So often my heart reflects back to the days, nights, and weeks this time of year last year...

We had been home for a whole month with Adalyn the beginning of last July. We were learning, along with Adalyn, the best way to handle her feeding tube, oxygen machine, pulse oximeter, suction machine...and medicines.

Her blessing day....July 5th. So perfect.

There were so many many moments when I thought this couldn't all be real. That one day we would wake up, and Adalyn would be seizure free...that all of the other concerns would fade away. David and I rotated the night in 3 hour blocks at that time..That way, we would both get times of sleeping for three hours straight. One of us would get up, begin her feeds....and often simply hold her. Seizures made it hard for long stretches of sleep... At the time, she was seizing about once every 3-4 hours...which seemed like so much. Little could we know how much those awful things would progress.

I can't quite describe the feeling of waking up to hearing her monitor alarming....she would stop breathing for a short time during her seizures..causing her oxygen to dip down low...and then bounce back.

We had her sleeping in the same room as us. So many nights...I found myself simply just staring at her... Watching the color changing night light dance across her sweet face. So often I just rubbed her sweet head...trying to figure out what her plans were for us. Some of those nights are ones too close to my heart to share publicly...

So many times, even in those early months with her...I found myself breaking down....fearing so deeply that our time with her was going to be limited. Sometimes I thought that if I just starred at her long enough....watching her drift back to sleep in my arms...that I could freeze that moment and live in it forever. That I could just forever soak up the peace of watching her eyes flutter closed...feeling the comforting squeeze of her finger..and her breath on my chest..knowing she was safe in my arms... Knowing that my husband was sleeping peacefully on the other side of the room.  There was nothing in the world that my heart wanted more.

Views my heart misses. 

I've  felt myself really struggling as time continues. So many things send me into a panic these days. Never had I known what true anxiety was until the past year.. Now...I know well the creeping feeling of my chest tightening... my heart racing...my thoughts bursting....and my fears completely engulfing me.

I feel afraid of so many things these days. Some of them silly. For example,  I feel like I give myself a pep talk to go out to get groceries. Large social gatherings are hard for me....Something that never used to be. To meet with people, or strangers...and just have small talk seems so foreign to me. It is hard for me to have normal small talk...when everything in my heart doesn't feel normal anymore.

And then there other fears...deeper fears that always seems so close to the surface. The ones that like to play out in my nightmares. One of them hit close to home recently. We learned last month that David's pacemaker battery would need to be changed. For David, this is a pretty routine surgery that he has to have about every 5 years. His heart has to be paced all the time...and unfortunately...batteries don't last forever.

When the lab called to schedule the surgery...for the second week in July (this coming week..)I felt those fearful tears once more burn the surface of my eyes. Of course it would be on the 13th...a day I dread each passing month. My mind wanted to scream...."Why does everything have to feel so hard!" Imagining going back up to Primary's....sitting in a surgery waiting room once more....just felt like one more brick added to my backpack that already was too heavy. 

( As you may have realized, I process things the best through analogies....so bear with me on this one.)

Right now, we are in Spokane, Washington. David has a conference for work for a few days, and I tagged along. I was walking next to the Spokane River yesterday. It looked so peaceful. So calm. Yet...there were signs everywhere that said "Stay out, stay alive." Signifying there was a strong undercurrent...and up ahead, there were falls. 

When I got to the falls..I stood there simply watching for almost an hour. So many thoughts running through my mind. It was enchanting almost...seeing the power, intensity and current of the water. Something that appeared so calm on the surface just minutes before, was actually anything but calm. I felt so similar to the river in that moment. How..often on the surface I seem calm.... But deep in my heart is a intense current of emotions. Fear, grief, longing,worry, anxiety, frustration, distrust, emptiness. All of these feelings swirling around together. Creating a powerful current of their own.

This picture doesn't even do it justice. So beautiful. 

I think, at times, we all have an "undercurrent." Our deepest emotions that lie right beneath the facade of calm we place. I think so often we feel that to show or have these deep emotions isn't okay....or that we shouldn't show them. Yet, as I looked at those falls...there was something so beautiful about the way the water simply flowed...force and all..and just kept going.

As of late my own "undercurrent" has felt like it is pulling me under. Making me feel that I don't have the strength left to swim anymore.

In so many of these moments...I pull up a picture of Adalyn. I see the strength in her little eye. Her bravery. Her courage. Her faith. Her love. And I take one more step.

Of her many gifts....she has always been able to bring hope and strength into our lives.

I am realizing that there are many things that will take time to work through. I hold to the hope that there will come a time when I don't panic so often. When I don't awake at night from another nightmare. When my fears will be hushed. I am realizing I have the greatest force swirling around in my "undercurrent".......Adalyn's love. I know that her love will slowly help to change my "undercurrent." It will change those dark emotions to hope, light, love and trust.

Sometimes, in listening to some people...I have felt like I must not have enough faith. If I had faith, I would be happy. I would be fine with the trials we are going through. I wouldn't feel like such a mess inside. But I am realizing that having faith doesn't mean you are "okay" with what you are going through. Having faith doesn't mean that you have to be happy with what you have lost. Having faith doesn't mean you are never worried, or afraid, or feel lost.... I think faith means that you find the courage to keep taking one more step. No matter how broken or clumsy that step may be...holding to the hope that Christ never breaks His promises.

I think I am learning that it is okay to let myself feel...that I can't listen to what others may say I should be feeling. This is our journey. Our walk. Our road. And though it has been filled with many bumps, steep climbs...and sheer drops....it has also been one filled with the deepest of love. Guided by graceful hands.

I am slowly learning to trust God again with the pieces of my heart. This has been one of the hardest parts for me to learn again. Trust is one I struggle with. I am learning still....that He loves me individually. That somehow....He will help me to carry my backpack of bricks.

I've shared this before....but it has been one I am continually reminding myself of:

2 Timothy 1:7
For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.

Each and every day of my life I will be grateful for the gift of time. I will be grateful for the nights of little to no sleep...For they gave me the chance to watch Adalyn drift off to sleep...and as things became harder...they gave me time to give her comfort and love. I will be grateful for summer evenings...For they gave us time to spend laying on the grass with her. I will be grateful for explosive diapers...for they brought laughter....and gave me a chance to change the cutest little bum. I will be grateful days spent at home, not always showered, with my hair often a mess...and in my pj's....for those were days I got to spend playing with our little Angel. Singing her nursery rhymes, reading books, helping her learn to grasp toys..and simply swaying in the living room. I will be grateful that David wasn't working then....for I got to witness the absolute pure love he has for Adalyn. Time to see the care and love he took in every moment with her.

Slowly I will learn to become encompassed by the good I have. To be encompassed by the love, hope and light that Adalyn knew so very well.

Fourth of July last year

I love you my sweet darling. Oh how my heart utterly longs for you! How I wish I had got to dress you all up for the 4th....and watch your face as you saw all the bright fireworks. So often I feel you near....I know Daddy does too. I had a hard time walking past the giant red wagon slide here...and the little carousal..My heart still longs to do so many of those little things. As I walked around...I looked for you in the beautiful purple flowers. In the silly ducks swimming on the water...In the cool, beautiful air...and the bright green trees. I often find myself talking out loud to you. We pray for you each day...that you always know how special and loved you are.....Part of me feels that you are praying for us too Addie Grace.

I love you always!

You are so very loved by so many! 

We lit fireworks off with you, of course mine had gone out in this picture. I think you would absolutely love sparklers my darling!

7 months.

Today marks 7 whole months that we have lived without you my darling.... 7 months since I've kissed the warm bridge of your nose....and breathed in the lavender scent of your hair. 

Oh how we miss you Adalyn! Each and every day. Time passing hasn't made your absence easier to bear... But slowly Daddy and I are finding what our new "normal" is.  As we drove home today, we saw the sun breaking through some gray clouds....it's rays were so beautifully bright. We smiled thinking of you dancing around in that light. 

Here are some of the pictures I took of you this week last year! 

The past week has been rather emotional sweet girl... Daddy and I moved out of Grandma and Grandpa's basement. We know it is the right step for us.....but it was still hard. With each box I packed of your things.....my tears fell like rain. I would think of you wearing each sweet outfit I was folding. I would think of bath time as I packed up you tub and folded your towel. I breathed in the milky smell of some of your clothes that I didn't wash after you went back home to heaven....

My tears continued to pour as I folded up the last pair of jammies that you wore...that morning you slipped away.... They still sat by the sink in the kitchen. We haven't had the heart to move them for 7 whole months...Daddy and I both sat with tears as we boxed up your medicines... Oh how we had hoped so deeply some of those medicines would help you! Help to give us more time with you...

We've been scared to move. Scared to move away from the home we had with you. Scared to move to a place that was empty....a place that held no memories for us..

First time outside. Hey Cutie Baby!

The past week, I've realized something though....with each thing I packed....even though my heart utterly ached for you...I felt so grateful that we had time with you. Time to make memories. Time to feel you. Time to watch you grow. Time to sing you countless songs. Time to blow raspberries on your little belly. Time to take you on walks through the park... Time to lay on the grass and look at the sky. Time to feel the shower of love you gave us. 

Moving into a new home can't take those memories away. Those memories can continue to fill our new home too.

We spent the day hanging up pictures of you throughout our new house.... It was good for our hearts Addie baby. It felt good to talk of our sweet memories of you. To talk of your little squeals....and how so often it felt like you were carrying on such a happy little conversation with us.

We miss you so deeply my sweet Adalyn Grace. There are still many things I don't understand... And some things that will take me an entire lifetime to come to terms with... What I do know is that you have given us such beautiful memories. Your love continues to be our strength each day.

As I was driving in the car today I found myself singing Amazing Grace....one of the songs I sang to you so many of our nights together...I haven't sang much since you've been gone...Or listened to much music...but today, I wanted to sing once more to you... Some of the lyrics hit my heart..

"Through many dangers, toils and snares
I have already come,
'Tis grace has brought me safe thus far
And grace will lead me home."

"The Lord has promised good to me
His word my hope secures;
He will my shield and portion be,
As long as life endures."

You have helped us be carried so far Addie baby. You have helped us to feel of what grace is...And as hard as our days may be now....I know there will be a day when our hearts are made whole again. A day when we will be together forever...With no good-byes... When grace truly will lead us home. Each night before we go to bed, we look at the picture we took the same day last year. You are so very loved. I will forever be grateful that God gave us you.

I read a quote by President Monson recently:

"We know that there are times when we will experience heartbreaking sorrow, when we will grieve, and when we may be tested to our limits. However, such difficulties allow us to change for the better, to rebuild our lives in the way our Heavenly Father teaches us, and to become something different from what we were—better than we were, more understanding than we were, more empathetic than we were, with stronger testimonies than we had before."

We are trying to rebuild our lives remembering each thing you taught us my darling. Your little body may have been fragile...but your spirit was and continues to be the brightest and strongest light. Please help us to feel you so very strongly in our need home. We know you are never far!

I can't wait for the day that I can once more kiss the little sweet bridge of your nose.

XO

Mommy

P.S..... I thought I should share some little videos of you Addie baby!

I love your little squeaky hiccups!

This lovely gem was taken just a few days after we brought you home! Your first time outside and you slept through it. My favorite quote from Daddy.."It's a really nice temperature" Still makes me laugh. 

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.