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!