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.