Infinite.

Today....I am feeling so grateful.

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

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

Heart. Melted. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I love them infinitely. 

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!