In Honor.

It came. As much as I didn't want it to....as much as I was afraid for it to come.....

The month of May still came. 

David and I both have so many emotions that we're still learning to work through. There are so many things that changed last May. Everything I held dear in my world suddenly was dangling by a thread last May. There were many moments that broke me. So many moments that changed me...And moments where I felt so full of love and gratitude that we were given such a beautiful little angel....Moments I felt so grateful to have my husband for another day.

But I'm not going to write that post yet. Maybe next week.

(These two pictures make my heart smile...taken last May...when She had SO much tape. First picture...is her frustrated face at just finishing "cares" and getting touched by cold stethoscopes...the second is moments later...when she happily realized David was holding her.) 

Last weekend we made the drive up to Primary Children's. They were having a tribute to honor the children that passed away last year. 

I didn't think we could go. We have avoided the drive up the I-15 ever since losing Adalyn. We have avoided downtown Salt Lake. We have avoided many things.

I'll be honest here....the past weekend was incredibly hard. I had a hard time simply keeping myself together. All of my emotions felt so raw...vulnerable...and right on the surface.

We would stay with David's sweet sister Aimee each time Adalyn had doctor appointments in Salt Lake.... As we took our things down to their basement.....memories flooded my mind. My heart utterly longed for our Adalyn.  Yet...that night...as we went to bed....I realized I was so thankful to stay in a comforting place that we had stayed with Adalyn. To have sweet memories of her there.

The next day, we went to the tribute ceremony.

I don't have the words to describe my feelings. To describe how much my heart ached. To describe how easily I fell apart and the emotions that flooded my heart. I can't fully  describe how much we ached to see pictures of other sweet little angels... And know of the decisions and heart breaks their parents went through too..

Instead...I want to share bits and pieces of things that touched my heart...

First of all....Absence does NOT have the ability to take away love. 

Second....often times...when things become broken...people try to hide those very breaks. If a picture frame is broken on a corner...or a seam is coming out of a shirt...we each do what we can to hide those flaws. Japanese potters have a different philosophy. If a pot they are making breaks...they don't throw it away...or try to paint over the cracks...Instead, they fill the cracks with gold. Making the break visible for all to see. Visible.....yet valuable. The breaks in the bowl become an aspect of beauty. Creating something even better.

Third.... It is easy to wonder where God is in all of this. To wonder where He is in the middle of tragedy. One speaker began quoting another woman...who said she has come to realize...God is not the tragedy. God isn't the accident. God is love. He is the love in the person that showed up at our door with food. The love in the people who have cried with us. The love of the stranger who asked to see all of my pictures on my phone of Adalyn. He is in the love of the people who felt like sending us a tender card. His is the love that comforts, that carries....that brings hope in the midst of darkness. 

As the slide show of all the children popped up....I sobbed when I saw Adalyn's beautiful picture on the screen. I felt so honored to be her mom. So honored to have been given the chance to know first hand of pure and perfect love. So honored to be wearing a name tag that had her name on it... And still so desperate for time to pass quickly to hold our perfect angel in my arms once more. 

At the end of the ceremony....they released 100 live doves. It was beautiful. 

I realize each day that this is lifelong journey of heart ache. Yet I am slowly realizing it is also journey with the deepest of beauty, love and learning. Though, that doesn't mean it will be easy. I still feel like I'm doing my best just to tread water. This life is a gift. A beautiful gift. And if we keep our eyes open....if we look..... I like to think that we might just have the chance to be a part of something that is greater than ourselves.

So thank you, my darling Adalyn,....for helping me have the courage to walk through the doors of Primary Children's once more. I wanted to avoid it forever. You change lives each day sweet girl. Especially mine and Daddy's. You remind me of who I want to be. Some moments, I feel so desperate in my longing for you....and my heart feels lost. I wonder who I am...and if I am strong enough to face another day.  I was reminded over the weekend....that I will never be too lost. For I have your love as my brightest guide. You are loved Addie baby. You are remembered. You are always missed...

Uncle Hyram drew this picture on scratch board for my birthday. We love it so very much!

.

When they said this song at the tribute Adalyn, I swore the lyrics were written just for you... Here are parts of it...

"The wisdom in your eyes
The joy that was your smile
You felt like home, and I 
will remember."

"The song that was your voice
Gave a spirit of such peace.
You changed my world,
And I will remember."

"As the rivers will run to join the ocean
My love will keep rushing to you
Though the seasons may change....
Your memory remains"

"We remember.."

"Forever you will stay, 
Cause time can't take away
What we remember"


I miss you so deeply sweet girl. In every moment, of every day, you are the one dancing around in my mind...The one my heart is waiting to hold. Daddy and I celebrated our birthdays this past week. I couldn't help but think of our birthdays last year. In the midst of the hard days we faced.... I think that birthday will forever be my favorite...because I got to spend the whole day holding you.

Love you Addie Grace!

Last year on my birthday! 

A year ago today....Sure miss you sweet girl!

When It Rains..

Some people say when it rains it pours....

After this week....I have felt more like when it rains....it pours...then turns into a hurricane....and then it turns into a giant flash flood. 

Days have been hard. So hard. Each day has felt like a whole new and almost overpowering wave of the unexpected. 

Blow #1

At the start of this week....David and I were so hopeful for little Adalyn and her bottle feeds. She was up to a little over 50% of all of her feeds orally! She was loving eating from the bottle and getting stronger in learning how. She had a swallow study this week just to make sure that she wasn't aspirating any of her food....and to see the pathway of her swallow. 

During the study....they found that Adalyn has been aspirating some of her food. Because of this...we had to stop all oral feeds...and get things in order for a G-Tube next week. We were crushed. Not because of the G-tube....we know that the G-tube will be so much better for her than the N/G tube...she hates that and pulls it out.....We were crushed because she enjoys her bottle so much.. To take that away from her was awful. 

The nurses and OT's cried with us. They have seen how hard Adalyn has worked. How much she loves it.... 

Blow #2

With Adalyn's brain anomalies, from the beginning they have told us she is at risk of seizures. Seizures that could potentially get so severe that they cannot be controlled by medicine. We had been praying so much that she wouldn't have to go through that...

However...a few days ago, we began to notice seizure activity. She would fixate her eye,  jitter for about 15 seconds....and drop her oxygen They decided to do an EEG to see. Watching them stick all of the wires on her little head was heart breaking. Holding her while she kept screaming until she exhausted herself to sleep....knowing there was nothing we could do made us feel so incredibly helpless. Watching her sleep after...all covered in wires made us just want to take her and run away from all of this...and pretend this was all just a bad dream.

As it would turn out, she was having seizures. 

They started her on anti-seizure medicine. The first dose sedated her for a good day and a half. They say after a few weeks, she won't be so sleep from the medicine, that her body will get used to it. 

Even after the first few doses....she has still had a few seizures. They increased the medicine today in hopes to control it. 

Blow #3

This wave has felt like it will overpower me...almost more than I can feel to bear. 

David has been having really bad stomach pain the past month. We attributed it to stress....thinking it was ulcers (we could have been more wrong!) He decided to go to an Insta-Care clinic this week. For him to say that he needed to go to the doctor meant he should have gone a long time ago. 

At the clinic....they found fluid in his liver. And lungs. And abdomen. 

They sent him back up to ER at the U for more tests. As it would turn out.....David is in acute heart failure.

Those words have almost threatened to bring my world tumbling down this week. One of the valves in his heart has grown too weak to continue to work properly against the pressures....and has caused severe fluid back up all over. Because of the way his heart is.....this is mostly reversible for him. 

So....David was admitted to the hospital immediately. They want him to loose twenty pounds of fluid. It has only been one day and he as already lost ten! 

After he looses the fluid, they will go in through with a catheter and replace the valve. 

Meaning both David and Adalyn will be having surgery next week. 

I still feel like I don't even know how to begin processing one ounce of this week....or even begin to type how I feel. My heart aches in more ways then I ever could have imagined. It currently partly lies on two separate floors of the hospital. 

The NICU nurses.....our family....and friends who have been there this past week have carried me through in so many ways, They have cried with me....made me laugh....and somehow kept reminding me that I can do hard things. 

I feel like my steps have never been more unsteady in my life. Sometimes I pray for the strength just to get through minute to minute. Some moments.....I just want to hide under a blanket and cry. Other moments I feel so lifted....that somehow....someday....this will all be okay. 

Through all the of this.....I know somehow there is a purpose. A reason. A silver lining of hope. 

We have to believe that. 

It is a tender mercy.....at least we have been up here when Adalyn's seziures started. At least we were at the best place possible for David to have this surgery...

Mostly for now... we just keep telling ourselves we can do hard things. It is in no way easy. But we're somehow moving forward. 

Updates will come as I have time to post them,. 

Hopefully you all know how grateful we are for each of your prayers and support!