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. 

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!

Purposefully.

Last Sunday, we had the car loaded up, all ready to go. I was on edge.....already feeling so many emotions in preparing for our trip. 10 minutes into the drive.....Adalyn had a bad spasm....jerking especially hard....and our AC decided to take a break so it was getting rather on the warm side. I let all of my ugly frustrations bubble out. I couldn't help it. . With everything negative I kept saying....David would say something positive or hopeful...But I didn't want to hear it. I was angry......and I wanted to be. I felt justified in it. An hour into the drive....I was still frustrated...when David....looking defeated...told me he was trying so hard...and felt like he was failing me.

Smack. There it was. I felt awful. My bad attitude was impacting all three of us. Not to mention....it was making my husband....the man who has sacrificed so much for us....feel terrible. Why was I even being like that? Pointing out all of the bad...or the hard certainly didn't make me feel better. I decided in that moment I needed to be better. My family deserved better than what I was giving them in those moments. I decided that my attitude was my choice. And I needed to make a better choice. So....as the rest of the week went on....I have worked so hard to have a better attitude....to look for the good.

Our trip to Primary Children's went as good as it could have for our situation. Staying with David's amazing sister Aimee and her sweet family was definitely a tender mercy while being up there. She went above and beyond in helping us.

The cute little boy in the center turned 4! So thankful for them!

The best news of the visits we had was that Adalyn has great hearing in her right ear! Her left...not so much. We also made plans with her neurologist for our next treatment and got the new medicine all set up. Her ophthalmologist took a peek at her eyes....definitely not my favorite visit...but she handled it like a champ. And her comprehensive care doctor helped go over all aspects of her care...preparing us for what we will need to do for the coming months.

Getting her hearing tested!

They feel more certain that Adalyn has a severe form of Aicardi Syndrome. A syndrome that affects each case differently....there are only about 4,000 cases worldwide. And...there is no way to test for it. It occurs spontaneously.

I don't know why....but I am still having a hard time accepting that. However....I am learning something about acceptance. It isn't easy. It is hard to accept something that you don't want. Especially something that you just want to run from. And....as much as I sometimes want to....we can't hide from all that is in front of us. At some point, we have to keep moving forward.

So here it is:

Our baby girl has a chronic/terminal condition. Still a tough pill to swallow. The chances are more than likely that we will outlive her. There are still so many days when I think..."This can't be real life...."  But for us.....it is.

After that especially dark day in the NICU when we got Adalyn's MRI report back.....I haven't been able to look at that report. It was too hard. This past week, when we got home, we pulled it out again.

"Complete agensis of the corpus callosum with septated interhemispheric cyst. The posterior fossa is underdeveloped with a large 4th ventricle and retrocerebellar cyst. The vermis is hypoplastic but torcular resides at normal level excluding dandy walker malformation. Extensice bilateral cortical dysplasia and subependymal gray matter heterotopia. The bilateral choroid plexus is dysplastic with intrinsic cysts. Immature myelination. Dysmorphic shape of the ventricles attributed to absence of corpus callosum, choroid plexus cysts, extensive subependymal gray matter heterotopia. There is dependent ventricular hemorrhage. The left globe is abnormally small and misshapen. Right globe is normal in size with several intraorbital cystic structures representing colobomata or separate orbital cysts. Cleft lip and palate deformity. Dysmorphic facial features."

A lot to take in, right? Pretty much every single aspect of Adalyn's brain is not what it should be. Not even close. Surprisingly though.....when I read through that report this past week....I didn't fall apart again.

Instead....I simply thought about the absolute miracle Adalyn is. For her to even be here with such extensive anomalies is a true miracle. There is a reason she is here. Yes, it has been hard. I can't even fully convey the helpless feelings of watching her suffer at times. Yet, I look at her and I am so incredibly grateful that she is here. That she is ours. I never knew there could be so much love inside such a small body.

While we were up north for all of Adalyn's appointments, we met with a couple that have become some of our dear friends. We met them in the NICU....they had a beautiful baby girl who they lost this past summer. We feel so inspired by their strength! She told us that because of their sweet baby girl....they now live more purposefully. 

Meet Shannon....so grateful for her advice!

Purposefully. I absolutely have fallen in love with that word. I don't want to let these moments just slide by because I am too fixated on how hard it may be. I want to live in every moment with her. To fill the time we have with all the love we possibly can. I want us to keep moving towards those brighter days ahead...knowing that we can do hard things. I want us to soak up happiness. I want to somehow pay forward all of the good that has been given to us from so many. 

It is a very likely possibility that Adalyn may stay in the "newborn" stage of development for her whole life. But we have come to find...that's okay. There is so much love in that stage! We will take whatever she has to give. My best, most beautiful moments with her have been during our rather late nights.....when I have lifted her onto my pillow with me....and slept for an hour. Feeling her warm breath on my cheek.....hearing her let out a big sigh...finally enjoying a long moments rest. The past week....we have had many great times with her.....she has even peeked open her left eye a few times! Which is a huge deal!

After getting her blood drawn....this little trooper didn't even cry. 

We all will most certainly face incredibly dark days. Sometimes....I feel like those days are just looming around the corner...just waiting to jump out. Is it scary? Oh..,..most definitely. But I am learning every day that strength doesn't come to you before your struggles do. It comes in those quiet, hard, teary moments when you feel like giving up. When you feel that the days are too much to bear. It doesn't feel like strength though. It just feels like comfort. A comfort to help you take one more step. One more day.

The thing is....I have so many reasons to live purposefully. I have an amazing husband who makes me laugh with the most absurd jokes.....who loves me. We have a beautiful little girl who makes our hearts grow a few more sizes each day. A little girl who so frequently faces mountains in her path....but hasn't given up.

She still chooses this hard, beautiful life...I like to believe....because the love we have is worth it....and because all that is to come is worth it.  

As I was reminded from the Women's Conference this past weekend.....Happily ever after will come. Right now....we are in the second act of the play.....when the hero is being tested...and at times...when all seems bleak.....

But you know what? The hero always wins. Good triumphs. Love prevails. 

We have been on the new medicine, Vigabatrin, for two days now. We are so hopeful for it! So far....it has made her pretty sleepy, which is a tender mercy because sleep is difficult for her. She has been pretty exhausted all the time lately from seizing so much, but has been unable to sleep for very long. She has been able to sleep for 2-3 hours without seizing. Not much....but HUGE for her.

She will be 5 months this week! She is growing so fast! We love her so much....especially all of her little rolls....and her double armpits. Chunky babies are the cutest.

Diaper changes are clearly hard work!

I love this wall at Primary Children's. Life is beautiful.... Even in the unexpected. 

Someday...

I've thought for the past week about what I would write for our update.... I have so many different thoughts these days.... So...this is an attempt to rid my mind of all my muddled thoughts!

I can't sleep well. It seems to be a pattern these days. David and I decided to switch things up a little bit....since we were both rather lacking in the sleep department. Adalyn can't physically go more than 1-1 1/2 hours without seizing or having an awful spasm....so I take the 11pm-5am shift....and he takes 5am-11am. Yet during my "shift" I often can't even let myself doze. I lay next to her....staring at her little body....watching the rise and fall of her chest... Waiting for the moment it stops rising. I then rub her little back....and wait for her seizure to end....and for her to take a deep breath. 20 seconds can feel like a lifetime. I close my eyes....but then I get paranoid...and stare at the monitor...waiting for her heart rate to increase...or for any tell-tell signs of spasms. Anxiety? Yes...quite certainly!

My head is so full of so many thoughts that often I can't seem to shut off. Even when it is my time to be sleeping....sleep is still difficult. There are so many things that I am afraid of. So many things I wish I could change. So many days that I wouldn't change. I have worried so much that I am certain that my hair will be white by the end of the year....either that or I will be bald. (Most likely the latter....it seriously comes out in huge clumps these days!

I am deathly scared of cold season this year. Why? Well....first and foremost....we have been told since day 1 that the likely cause of Adalyn passing will be because of a respiratory illness like pneumonia. This is because so much of her body's energy is spent seizing and having spasms that it makes it harder for her to fight off any illnesses. Comforting, right?

Look closely at the hair! Out of control. Just like her dad's. I love it. 

 I am not very excited for Adalyn to start her new medicine. The next medicine we will try is Vigabatrin. It is a medicine that they suggest after everything else has failed to work. Why is that? Well....because it has quite the handful of not-so-pretty side effects. It has actually been removed from the market a few different times because of the side effects and was just brought back in 2009. Before we can even try it, we have to sign a number of forms consenting to the treatment...agreeing that if anything goes wrong we won't sue..and that we understand the risks. These aren't your average tummy-ache or diarrhea side effects. More like vision loss or subcortical edema (fluid build up in the brainstem)....to name a couple. Yet, if we do nothing, her seizures and spasms will continue to get worse. And if we don't try this medicine....we can't move on to the next possible treatment. It feels like being backed into a corner....with prickly nails.

I am nervous for Adalyn's visits at Primary Children's next week. We will be seeing Audiology, Neurology, Ophthalmology and her comprehensive care doctor. Traveling is hard. The car is pack to the brim with all the supplies we bring. Plus, driving that far while she has so many seizures and spasms is going to be rough. When she has a bad spasm in the car....she doesn't understand why she can't be held. We both are already preparing for a week of minimal sleep. And..as helpful as her doctors are....it is also hard to have visits. It is hard being reminded of how severe her brain malformations are.

As much as I try to push these thoughts away....I frequently find myself wondering "What is going to happen next?" Even if we can get her seizures and spasms under control....no one can tell what her brain malformations will mean developmentally. Each week there seems to be a new level of things that are hard for her.

Visits from Aunt Amber!

I find myself thinking so much about Someday. Worrying about it. Stressing about it. And crying about it. 

We know Someday will come. It feels as if it is standing just outside of the door....waiting to sneak in when the door opens. Someday....days won't be so hard. Someday....Adalyn won't have to face such hard trials. When Someday comes...we will have to say good-bye. The thought of Someday scares me....because when Someday comes, our hearts will break. 

Yet I have realized the more I worry about Someday....I loose the moments of the here and now.

I am desperately holding to the good moments that we have with her. They are more beautiful then I can describe. She fills our world with light and hope. 

I heard a quote recently, "Special challenges allow something special to rise to the surface." I don't think I could put it into better words. This has been the hardest challenge of our lives. Never have we felt more helpless. But in the same hand....never have we felt more blessed.

So many people have reached out to us and helped us in countless ways. Our sweet little baby has touched numerous hearts.....and that is what I am most grateful for. 

The past weekend, my sister came to visit. My niece, Emiliee, who is 10, brought a little gift from her friend to Adalyn. When I read this note from this sweet 10 year old girl who has never even met Adalyn....my heart felt so full. She made the little bow in the picture below. Such a tender gift!

Knowing that Adalyn is touching so many lives with her amazing spirit is what gives me strength. 

She is a fighter. She is full of love.....and endures with such patience all her struggles. Seriously...if I were her... I would be crying ALL the time. When I am around her....and I see what she has to face...I know that I can somehow find the courage to keep going. She has helped me to see that God's tender mercies happen in our lives daily if we will just look. 

Sometimes, as my lovely visiting teachers reminded me this week....God doesn't always take our burdens away. Sometimes we have to keep walking....through what can feel like fire. His promise is that He will help us to carry that burden. Miracles are not always easy....but that doesn't make them any less of a marvel or wonder. These hard trials.... they are but a small moment in comparison to eternity.

Never would I have imagined being on the road we are on. Never would I have imagined seeing the "other side" of life....the side that is completely unexpected. Never had I given thought to all of the times things go wrong during a pregnancy....or the times when little babies are born facing such undeniable struggles.

But the amazing part? Never would I have seen of the pure, selfless love that comes from being on this road. Never would I have learned what sacrifice means. Never would I have prayed for so many families that I haven't even met. And the fellow travelers on this road? Well....they are some of the toughest warriors I know. Each day they have to face their own battles with Someday. And each day their kids stand as witnesses that the most beautiful miracles, courage and love comes in such small bodies.

Being on this road.....we have to fight to continue to see and feel hope.

But as David and I have felt..it's a fight we're not giving up on.

The love we have for our sweet girl is worth it. No matter what Someday brings...the here and now is worth it.

Play time is hard work!

I am slowly learning not to let fears control me. I can't keep Adalyn locked away from the world forever. This day, we braved going to the park, It was a perfect afternoon!

My view as I typed this. Lucky me!

For those of you wondering more about Adalyn's condition.....click here.