Learning to Stand

Several nights ago, I was standing in the kitchen. As I stood by the counter, my mind flashed back to all of the times I stood in that very same spot....during that same late hour....getting Adalyn's food all ready. I would stand on my toes to peer over the couch as I was making it....so I could watch her sweet face and see the monitor..

It all felt so real....that I found myself standing on my toes...peering over the couch expecting to see her sweet face. Expecting to realize that I was just having an awful day dream....

But she wasn't there.

It felt like another cold reality slam in the face. My legs buckled....and I sat sobbing on the floor.

On Monday....I finally took her car seat out of the car and brought it back inside. I just haven't had the heart to do it...but our car decided to take a vacation from working...and I didn't want it left in there. I wish I would have known the last time I buckled her into it....that it would be the last time.  I would have ingrained every moment of it into my mind.

I take so long between posts these days because I don't know always know how to convey how I feel. I just don't want to do this. I don't want to face each day without our beautiful little girl.

March 2nd she would have been 10 months old.

March 13 will mark 4 months of her being gone. I hate when the 13th of every month comes around...The reminder of another month passing away.

Each day, I wish things were different. I wish that we had been able to celebrate that 10 months with her.

I just miss being a mom.

I feel like my sense of purpose was ripped away like a stuck on band-aid...and I'm left feeling disorientated trying to re-gain my sense of vision. I have been feeling defeated as of late. I feel like just laying down and saying "Okay life, you win!" 

I finished my first "Adalyn Journal" David and I both write to her each night

However...through it all...I'm slowly learning things about sorrow. I think there is something incredibly important about sorrow. There is importance is tears. There is importance in grief...

I think one of the most beautiful scriptures to read is John 11:35 "Jesus wept." 

He wept because His friend had died. He wept, knowing that in a matter of minutes...He would raise His friend from the dead and all would be well.

I think He wept because...in that moment...everything wasn't okay...His heart broke over His friend passing...and His heart broke for the family of His friend.

There are so many times that it is written of Christ that he wept....and that He was full of sorrow.

When Chirst visited the Nephites.. "And when he had said these words, He wept, and the multitude bare record of it.." 3 Nephi 17:21

"My soul is exceedingly sorrowful, even unto death." Matthew 26:38

"And it came to pass that the God of Heaven looked upon the residue of the people...and He wept." Moses 7:28

Christ himself was described as "A man of sorrows and acquainted with grief.." Isaiah 53:3

There are times in our lives when we are not "okay." When our hearts feel broken. When we don't feel like facing a whole new day because it hurts too much. That level of sorrow...the depth of that type of heart break....changes you. And the process of that change, in itself is hard....and hurts....and is quite frankly rather sucky. That change may be beautiful in time....but I think that in the in-between...It's okay to struggle. It's okay to cry. It's okay, to not be okay.

We had a picnic for Valentine's Day...and brought her along!

Because it is in the depths of those sorrows that we change. I see so many changes in myself.. I see everything so differently... I think differently.... I am learning that I shouldn't be ashamed of my own sorrow or grief. It is a process. It is unique to every person. It is sacred. It is hard.

"Weeping may endure for a night, but joy cometh in the morning." Psalms 30:5

"And weeping they shall go, and seek their God," Jeremiah 50:4

"Turn ye even to me with all your heart, and with fasting and weeping and mourning...and turn to the Lord your God, For he is gracious and merciful." Joel 2:12-13

"Blessed are ye that weep now: for ye shall laugh." Luke 6:21

There will come a day when I am stronger. When I don't feel like only a thread is holding me together. Maybe there will come a day when I don't feel like I have to be on auto pilot to get through the day. Maybe there will come a night when I can actually sleep...instead of replaying nightmares. There will come a day when I don't feel frustrated...or angry...or scared...or depressed.

There will come a day when my legs don't feel like a bowl of jello. When I will learn to stand again...

For now, we are just taking things a day at a time. A huge tender mercy as of late is that David got a job! He is now working at the Neuro Rehab Unit at the hospital. At first...I was secretly praying that he wouldn't get that specific job. It is at the hospital where Adalyn first coded...and where we were subsequently life flighted... However....it has been a good thing. He works with some amazing people. And....as David has helped me to learn.... We can't let dark memories take over the good. 

We loved the Valentine's cards we received for Adalyn from our family. Our sweet neighbors and their adorable little boys made a card and took it to her grave. It was the sweetest Valentine gift for us to receive!

I read an article about grief last week. And because I can't seem to find the article again...you get to read my summed up version of it.

This article compared grief to a large grand piano. There is a director...getting ready to put on a play. His actors have all their lines memorized. The set is completed....when suddenly a large grand piano is placed smack in the center of the stage. It cannot be removed. The actors try to go about performing this play, but everyone keeps bumping into the piano. This play wasn't scripted for a piano. It is awkward...and throws everything off balance.

In time, the director begins to learn more about the piano. He learns how to incorporate it into every scene. Most importantly....he learns how to play the piano. Instead of ruining his play, the piano plays a central role. Bringing tones of beauty, hope and light.

Right now, I still feel like I'm tripping and bumping into the piano....This isn't the play I wanted.

But maybe someday.... Someday I'll learn to play the piano. 

And I'll weave Adalyn into every note I play.

I miss you Adalyn. I miss you so much sweet girl. My heart is aching for you in every moment. Many nights I replay your videos over and over...especially the one where you sneeze...and get so surprised. I love it..it makes me smile each time. I'm trying really hard find myself again in all of this. I want to always be the mom you deserve. I pray for you always. I pray that you will be filled with love in each moment. I pray that your bright light will spread to all who know you. I pray that you are so very happy. I know you're never far from me my darling.....but my....how I long to physically hold you! I long to blow little raspberries on your sweet belly...to feel your hand in mine. I hope when I kiss your pictures....you feel a warm spot on your cheek. I'm so proud of you Addie baby....I hope I can be as brave as you are someday. I love you, sweet girl, always and completely.

"And God shall wipe away all tears from their eyes and there shall be no more death, neither sorrow, nor crying, neither shall there be any more pain" Revelation 21:4

Needed.

It's Father's Day.

David and I are still trying to wrap our minds around being parents!

In seeing David with our sweet little Adalyn....I see how incredibly blessed I am to have him. Seeing the way he loves our daughter is absolutely beautiful.

I read a saying recently...

"A daughter needs a dad.....because without him, she would have less of the life she deserves."

I couldn't put it into better words. Without David, Adalyn wouldn't completely have all the love she deserves.....all the hugs, songs, cuddles.....and all the in between. Being a father is so much more than merely a presence.. It is a continual action.

It is a need. 

Not just by Adalyn.....but by me too.

As much as we have absolutely loved being home.....it has been hard in many ways. I have so many days where I feel so completely inadequate to be Adalyn's mom. Of feeling so inadequate and unprepared to face the future.

I have had so many moments of jealousy in ways. Longing for the ability to simply just walk into the next room while holding Adalyn and not having it be a huge packing ordeal. I have moments of fear.....as we are up in the wee hours of the morning...using the suction machine on her because she has gotten too mucusy....afraid and I will do it wrong and make her bleed or gag. Or the fear that comes with her seizures...of watching her stop breathing, her color change...feeling so helpless in waiting for her to come back out of it.

We are still afraid of leaving her for very long.....even if it just means going upstairs without her. I am afraid of her having yet another seizure...and not being there...only to hear the oxygen monitor go off...and feeling my heart sink. I am scared at times in watching her as she is more alert...wondering how things are going to be developmentally for her. Wondering about the time we have with her.

It is in these panicked moments that mind my goes back to the week of having both David and Adalyn in the hospital....the fear of losing either one of them bubbles right back up to the surface and my dam of emotions breaks.

It is then I need David too. His love. The comfort and strength he gives me. In wrapping his arms around me and reminding me that I am enough. That we will get through this together. That it will get easier to bear in time.

Being a father is the biggest commitment. It is life-long. It is demanding. It is beautiful. It requires so much sacrifice....

It is essential.

Last night..... as I tried in vain to rock Adalyn to sleep....Feeling exhausted.....Feeling not good enough to be a mom.....I prayed in defeat....Asking my Heavenly Father how he couldn't see how much I was struggling. Asking him to please help me in some way.....just to see His will. I needed something. Comfort. Peace.....Something to get me through the hard hours.

I realized then how much I have truly have needed Him too.

Before....I have at times thought of God as someone who loves us so much....who has done so much for us....I had faith in Him....in His plans.....It all seemed great..

Adalyn's first "selfie"

But I failed to fully grasp of His importance in my life. I guess I never truly understood how much I needed Him. I needed Him to pull me through the moments when I felt at the thread end of my rope. I needed Him to give me courage. I needed Him to show me hope when I couldn't see it. I needed Him to help me feel like I was enough to face this.

The ultimate father.

I am so blessed, my friends....to have so much love in my life. There truly has been so much good in it...even with the hard.

David is doing and feeling so much better. Adalyn is growing and growing, she is over 10 pounds now! She is so special....so loving. The moments of her staring right at me...in quiet wonder melt my heart. We are blessed to be able to stay in the basement apartment of my in-laws....to have them so close. I cannot even being to describe how thankful we are for their love and support each day. Adalyn has been put on another seizure medicine and we are holding to hope that it will begin to control her seizures.

This week we are headed back to Northern Utah for a few of Adalyn's follow up appointments.

Again to all of you Dads out there.....I hope you know how much of an impact you have. All the good you do. And the way you change lives for the better. You are not just wanted. Your love is needed in every moment. 

Getting Through...

Last week I felt that so many aspects of my little world were simply dangling by a thread. I felt like I couldn't think more than a few hours ahead at a time. For all of you who have shared our story.....who have prayed for us.....visited....called...sent messages...we are so incredibly grateful. Words cannot even describe how much it has meant.

Today we got the most humbling visit from David's classmate Trevor and his lovely wife Kiera. Thinking of their visit we still get emotional. They brought a gift from all of his classmates...I don't know if I can ever truly express how much their act of kindness has impacted our lives. He met some of the most amazing people through the physical therapy program! We are so lucky to have them in our lives.

We don't even know where to begin to say thank you. You all may never realize how much you have helped us...and carried us through your words and actions. We never expected to be on the receiving end of such enormous amounts of love, support and prayers. To be in the situation where we have truly needed it.

After David was admitted to the hospital last week....he lost about 15 pounds of fluid in two days. With all of the fluid off of him...he started feeling so much better! Loosing so much weight that fast though drained him of his energy.. However.....if you ask David...he will always tell you he is feeling good. He is never one to admit when he isn't feeling well.

Since they knew we had a baby in the NICU....and that we would still be around....they discharged him on Sunday and set up surgery for Wednesday.

Adalyn had her surgery to get her G-tube placed on Tuesday of this week. Nothing could have prepared us for how hard that was going to be. How hard it would be to watch her be hungry for the hours before. How hard it would be to watch them wheel her back.......knowing that a little baby wouldn't understand the pain she would later experience.How hard it would be to know they were about to pierce her perfect little stomach. Or how hard it would be to see her recover.

She was intubated for surgery....and they wanted to leave the vent on for 6 hours following surgery to allow her time to wake up from anesthesia and breathe on her own again. It was the most heart wrenching and longest 6 hours. Adalyn began to wake up....and scream. However....because she was intubated......there was no sound. David and I had to hold her little arms down for close to two hours....and watch her silently scream...trying to give her comfort. That image will forever haunt my dreams. We felt so helpless.

The first few hours following surgery.

We questioned everything that night. Was surgery the right thing?? Did we just bring her into this world to suffer? After they pulled the tube.....her throat was so sore.... Her cry wasn't much louder than a scratchy whimper. Our hearts felt again like they were breaking.  Knowing she was in pain. Knowing she still couldn't eat for 12 more hours. Knowing we had to leave her again for the night without our comfort.

It was awful. I would never wish that upon anyone.

The very next day....David went in for surgery. I was a million times more nervous then I would let myself admit. They were planning on exploring around in his heart...and replacing one of the valves. Then for good measure....taking a liver biopsy....since his liver had some damage from the week before. However...once they got inside his heart....they were taken by surprise. (Which shouldn't have been a shocker...David always seems to have that effect of doctors). They saw some other areas that are leaking. So....as a result....they didn't want to fix his valve and in turn cause problems elsewhere. This week they will have a meeting to decide what will be the next best step to take and address what should be fixed. For now though....David is discharged...recovering... and doing so much better then last week. The hope is that we can keep him this way as long as possible and prolong another procedure!

When David was discharged that evening.. I brought the car around to pick him up. As he stood up....I noticed his neck bandage was filled with blood.One of the veins they had gone in had sprung a leak. Of course. Why would leaving the hospital ever be easy?!

Aimee, his lovely sister, was there to wheel him back up quickly while I parked the car again. Luckily....it was a quick fix. He was given a shot to help the blood clot and stop bleeding. Even with that..I was feeling so hopeful. Adalyn was recovering well....David had made it through...and we had a discharge date for Saturday!

Lately....I at times feel just when I get my hopes set on something....things take another turn for the worse.

Adalyn's G-tube site got infected. 

For yet another time.....I had to hold her sweet little arms down as they poked and poked in search of a good vein to start an IV. I never would have imagined that my soul could feel so stretched so often. I wanted to sob with her. Coming back to tell David was another hit. Our hopes of taking her home sailed out the window...for up to another week. It wasn't supposed to be like this. A new baby is supposed to worry only about eating....sleeping....pooping....and getting all the snuggles in the world.

Yet Adalyn's first month has been filled with painstaking test after test. Poke after poke. Beeping monitors. IV's. Assessments. Tears. Surgery. On and on it seems.

Evenings are the hardest. When our thoughts catch up to us.....and the autopilot mode slightly switches off. Seeking understanding is hard. The past month has felt like a continuous battle that we are trying to wage.....A battle that is uphill. In a blizzard. With no shoes on. It has felt like each piece of good news we receive is followed with the bad.

I have worried until I was certain my hair would be white. I have cried until I was certain I could fill a pool. I have felt afraid. And scared. And frustrated. I have wanted to run and hide......certain I was not strong enough. 

Strength. What it all comes back to. What is it? I have asked myself that very question so many times in these past few months. I thought I knew. People have told us lately that we are strong. Honestly.....we don't feel that way. I think if most people saw us all the time...,they would see what a mess we are most of the time.

Most days we just get through. And I have decided that's okay. I don't know if there is any sort of manual about how to be amazingly great or a rockstar at getting through trials. (If there was I would have bought a dozen copies by now).

My sister shared this scripture with me the night we found that Adalyn had an infection:

Isaiah 40:29
He giveth power to the faint; and to them that have no might he increaseth strength.

I have thought of that so frequently. Most days I feel exactly that way.....that I have no might. No strength. I have come to realize that even on the days we are simply getting through....we are only able to do so because of Christ's strength. He is the one that gets us through the tough days....and through the days that we wonder if there really are happier days ahead.

I don't know if understand the reasons why....I don't know that we ever will. I do know however...that because of the past month.....because of Adalyn,....because of all the incredible people in our lives.....we always we have felt more love than we ever knew was possible.  I felt somehow even more love for my husband and the person he is.

Even though it doesn't always feel like it....we know that our hospital days will come to an end. That somehow....there are happier days ahead. Beautiful days. Amazing days that we will get to spend together with our sweet little girl.

For that.....we can't wait.