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.