Searching for Stars

I never knew it was possible to feel such a tidal wave of emotions all the time.

Tomorrow Adalyn will be 6 months old. 6 months longer than anyone originally thought she would live.

I have spent a lot of time thinking about the past 6 months for her. When I think of all that she has gone through....I feel my head spin. She has had to suffer through so much....and that is what I struggle with the most. I think of the countless tests and procedures she has gone through where we have had to hold her down as she cries. I think of her silent scream while she was intubated...when all we could do is rub her little head. I think of the nasty medicines she has had to be on. And of course... her seizures and spasms...every. single. day.

Her seizures and spasms have just continued to progress. There is nothing that I have ever hated more. Between her seizures and spasms....she now has hundreds a day. On a good day....she seizes every 30-60 minutes.  On a bad day...it's every 15-30 minutes. Her longest stretch of sleeping is about an hour and a half...  Her seizures now cluster. Meaning she never just has one at a time. She typically has a dozen at a time. She now has many different types of seizures. Most recently, she has started having full body "twitches" where her whole body rapidly twitches for a number of seconds. At 6 months, she is unable to move unless she is seizing. She has incredibly low muscle tone. Because of the volume of her seizures, she is exhausted all the time.

When she is awake...she is typically seizing or recovering from a seizure.

There are no words to describe how sick I feel watching her seize so frequently. How hard it is to hold her while her body jerks over and over. Day after day. To watch as silent tears ooze out of her little eyes...to see her eyes red and exhausted. It makes me want to throw up. Usually, between the hours of 2 am and 5 am are the hardest for me. At this point, it is just her and I awake. The emotions of the day weigh heavy....and it is hard to continue to take. I hold her and cry. Because there is nothing else I can do.

We know that her little body cannot endure this forever. We know that stopping her seizures from progressing is a very slim chance. We also know that if by a miracle...we are able to get her seizures under control.... because of the severity of her brain....there are other life-threatening anomalies we will have to confront.

Each day, we are faced with knowing that her life won't be very long. I hate the fact that we even have to think about that. Yet it is like a snake....that likes to slither around our feet. And I just want to stomp on that snake. To kick and scream and yell that it isn't fair.

Look at that hair! Her dad's for sure.

A year ago at this time.....I couldn't wait for this time of year. I was ecstatic to have a 6-7 month old baby by the time the holidays came around. I couldn't wait to show our sweet baby all of the best things about the holidays. To stare in her eyes are she marveled at the lights....the sounds...the smells.

One of the biggest changes for me has been the change in my prayers. For so long....I have prayed for her seizures to stop. I have prayed with all the strength I could scrape. And yet they have continued. It has been hard for me to accept. Yet now....my prayers are different.  I pray that she won't suffer. I pray that she can feel angels around her constantly...that she can know how much and how deeply she is loved. I hold to the hope that something will be able to help her.... But I pray ultimately that we can have the strength to continue to be the parents she needs. That isn't to say I am giving up on her by any means. I will always be rooting for her in every way...

Notice the blades of grass that her Grandpa Brown added for a little Hawaiian pizzazz

Adalyn has truly taught me so much in 6 months. She is the brightest light I have ever seen. She is our miracle. We will continue to be in her corner...and to love her.

She has touched our lives immensely. And with all that she goes through, she is so strong. Her body may fail her at times....but her spirit is so strong.

I cling to the beautiful moments we have with her every day. She keeps my faith going.

Some days .... like today clearly...I feel like I'm just barely holding things together. But when I think of what I wanted most out of life....to have a loving husband, to be a mother, and to have a loving family...I realize I have each of those things.

God doesn't leave us alone to face our darkest days. He sends us what we need to keep going. We may not know the "why" of all things....or if you are like us....you might not even know the "how" either.

I have realized the darkest roads often have the most beautiful, bright stars above them. 

She wasn't to happy to be in the chair right then

Some times, I get too stuck on the darkness....that I don't see the beautiful lights above me to get me through. I think the greatest display of hope we can have is to keep walking that dark road. Trusting in the light from those stars....and knowing the good we experience on the way is only a pebble compared to the good that lies ahead.

He knows the depth of the ache in my heart. He knows that I can be stubborn, angry, tired, and uncertain...but He never leaves. He keeps the pieces of my heart together when I feel they are falling apart.

He has trusted us with the beautiful, and loving little girl. Inspite of all the hard days....and all the things we have had to watch her endure....the love we have experienced because of her is greater than anything I have ever known.

The goodness in her little heart amazes me.

Here's to you sweet girl.....You continue to teach us every day. You are our whole world. We love your snuggles. Your extreme cuteness in every outfit you wear. Your chubbiness..and the irresitable urge we have to kiss those very rolls! We even love your ability to have the stinkiest toots. Watching you grow has been our greatest highlight. We love you so much!

We go up to Primary's next week to start the Ketogenic diet. I am nervous for every aspect of that trip. We will definitely be in need of your thoughts and prayers. She will have to be inpatient for 3-4 days...and if all goes well, we should be home by the weekend.

Now for your viewing enjoyment..... Here is our "Little Owl" from Halloween! 

Sigh. So cute!

Clearly we are great selfie takers!

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.