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

Circumstances.

Last week, I went to Walmart to get diapers.

As I stood in the aisle... surrounded by countless baby items...a million different emotions flooded my mind. David and I handle our emotions much better then we did back in May. Day to day...we see so much good. In that moment though....my mind raced over the past year.

When we first found out we were pregnant.... I had to resit the urge to buy every cute baby thing I saw. We had decided to wait to begin getting things for our bay until we found out the gender...besides....we would be living in Missouri for 3 months, and we didn't need lots extra things to move.

I couldn't wait. I was so excited. I had so many ideas of how I wanted to decorate a nursery. Things I wanted to make....Books I wanted to read....etc. However....just a week after we found out we were having a girl....we began finding all of the problems we would be facing....and so began our journey. We were told numerous times that the chances were slim of our baby surviving long after birth. In the end....we only ended up buying a car seat, a diaper bag, a few outfits, and some other basics. In fact, when we brought Adalyn home....she slept in a cute bouncer that my amazing boss had given us for a few nights until we bought a bassinet.

So cute!

As I stood in that aisle....surrounded by so many odds and ends of baby items...my heart once again felt such an ache. Foods.....crib mattress covers....high chairs.....baby monitors...seats..activity gyms....bottles.. Who knew such silly items would make me have such a longing? In staring at all of these items...I thought of something that a stranger had said to me recently. In brief passing, we were talking about babies....(as she was carrying her baby). I had mentioned something about having a baby too..... She said a line that has rung in my head since....."Oh then you know how it is...just wait til they get older."

In my mind....all I could think is...No...I don't. I don't know how it is. I don't know about milky spit up. Rolling over. Having your baby grab at your hair...earrings...or glasses. I don't know how it is experimenting with different foods....or bottles. I don't know how it is simply put your baby in a bouncer and watch them play. I don't know what it is like to hear your baby giggle. Or begin to recognize faces... More than likely...we won't know what it is like to watch Adalyn get into everything... Dump flour over the floor...scatter toys everwhere... Or leave finger print smudges all over.

Snuggles from Uncle Hyram!

I do know about preparing to send your baby in to surgery. I do know about having to fill out an advanced directive for her in case things ever go wrong. I do know how to change a G-Tube like a pro. I do know how frustrating it is in dealing with medical supply companies. I do know a hatred for seizures and a fear of colds.. I do know how nerve wracking it is preparing medicine....knowing if you do it wrong, or mix doses.....you might just put your baby into a coma.... A lot of the normal things though? No....

But I want to. I long to. And the reality that we will never experience many of those things with her stings.

I recently read a quote from a book called "Strength Through Adversity" that a lovely woman in our ward gave to us....It was a quote from a Olympic coach, Kay Yow, who had developed cancer... She said,

"God didn't choose to change my circumstance. He chose to change me."

We have found a love for our carrier! Best thing ever. 

We have spent countless hours praying that circumstances would change for us....For Adalyn. And a lot of the time.....our circumstances haven't changed. A lot of the time, they have continued to worsen for her.

Even though our prayers haven't been answered in the way we have always hoped....we have seen so frequently the hand of a loving Father in our lives. We know He hears our prayers...each and every one. We know that He does have a purpose. No matter how much we are struggling...He knows and understands. His heart aches with ours. But if we can look around us, we see so many tender mercies reminding us that He is there.

God has given us something beautiful. He has given us this perfect angel to simply love. Her spirit is so strong. Her innocence is so pure. Love just oozes out of her little body. In loving her....He knew we would be changed...and so would the people around her. 

Lucky us..we got a great visit from the Anderson's!  Adalyn loves her new clothes!  

The thing is.... sometimes it hurts that our circumstances haven't changed...and I am tired.. I am certain that many of you facing your own struggles can relate. I am tired of watching my baby seize over and over....and over. I am tired for Adalyn...that between seizing and being excessively mucusy...she doesn't get much of a break. Excess mucus...means more suctioning. I am tired from having an endless plague of worries run through my mind on a hourly basis.

Sometimes...just like that day in standing in the aisle at Walmart....I feel that familiar wave of emotions crashing down. I think it is okay for me to grieve. It is a longing for all that I wanted for our baby girl. Hopes....dreams...things that may never happen in this life for her. Things that are hard to let go of.

In these moments....it doesn't feel like it will be okay. I feel frustrated. I hate....hate...hate seizures. I would never wish them upon anyone.

I feel panicked. I don't want to do this...to watch her struggle day to day. I want to run away and pretend it isn't real.

No parent should ever have to watch their child struggle so much.

Yet....we do. Each and every day.

I often wish there were a simple solution. A switch. A magic potion maybe. Or even a fast forward button so I can see how the ending turns out. However, those are all merely wishes. When I finally stopped wishing for all the ways things would be different....and hoping for the day that I would wake up and our circumstances would be perfect....I realized that this time in our lives does have an incredible purpose. The change has been in us. And we continue to try and make that change for the better. I can see how much I have changed and grown in this past year. Because of one sweet, beautiful girl I am learning things about myself that I never knew I had. 

One of my absolute favorite pictures! Alert moments are rare!

That I am strong....and I can do hard things. That I am not alone.That if my baby can face each day...so can I.  Most of all...that I am loved....and I can love.

Our circumstances don't always change as quickly as we want. God doesn't always intend for it to. And sometimes, we simply won't know why. He asks us to trust Him. To allow Him to use our circumstances for greater purposes. The most inspiring people I know have all gone through overwhelmingly dark days....and yet.....they held on.

So much cuteness in one picture. My two favorite people!

Late last night, my sister called me....I found myself laughing so hard as we sent each other links back and forth of absurd clothing styles. As I got off the phone, I realized how blessed I am. There was a time while in the NICU that I wondered if we would ever truly laugh again. After that conversation I realized I have been laughing again. And so is David....his full fledged giggle/laugh....which I love.

Our circumstances and who we are is not set in concrete. Circumstances come and go. We change. We become.
What we become is our choice. 

Romans 8:37-39 
37....In all these things we are more than conquerors through him that loved us. 
38 For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come,
39 Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.

We were meant to be conquerors my friends. Not merely sufferers of circumstance.

I am learning this every day. And trust me..some days...I am not so good at this. My greatest days are the ones where I choose to see the good...in turn....the good changes me. Adalyn has taught me that love....especially God's love....is enough. That love is more than enough for me to face each day.

We have been on the receiving end of so much good. I cannot express enough how humbling it is to receive letters of encouragement....to receive such thoughtful gifts....to have so many people praying for us. Your acts of love have not gone unnoticed. They strengthen us in more ways than we can say. Some days...they are the tender mercies that keep us going.

This past week, we started a new medicine. For the first four days, it seemed to be helping better than anything else so far! Her seizure frequency was cut in half.....and her spasms were much less mild and she wouldn't jerk for very long. Unfortunately, they have come back again. Along with some new twitches. The hard part is that it seems the only thing that can stop her from seizing is sedation...and even then some still break through. Seriously....if you could all only see what she goes through on a daily basis...you would be amazed at what a trooper she is! And more fully understand why she inspires us to try a little harder. This medicine has also made her rather mucusy...which has meant a lot of suctioning. We will probably keep trying with this medicine for a few more weeks....adjusting the dosage. The tricky thing is higher dosage equals rougher side effects. Though, the plans are already in the works to start the Ketogenic Diet next month....more will come on that later.

Now prepare for an overload of adorable pictures! Tis the Halloween season after all!

Note....she wasn't a fan of the texture of pumpkins. 

Did you catch those chunky legs? Ahh..

Oh how I adore those pillow top feet.

On a different note....we just want to first off say that we do absolutely love visitors! However....with cold season coming up...we do have to be so careful. A cold for Adalyn is not something to take lightly. Her health is fragile. So...in coming to visit us...please be sure to get your flu shots! And make sure you haven't had a cold in at least 2 weeks....even if it is only the sniffles. And don't take it personal in any way....but we carry hand sanitizer every where...and have a lot at our house too. If we ask you to sanitize, it isn't because we think you are dirty. I think sanitize and wash my hands so much that my hands are in this permanent state of being raw and dry! I need to work on that. Anyway...We mainly just want to be extra careful those germs don't pull a sneak attack on us!