The Depth of a Soul.

I stare at the computer screen....trying to find the words to convey all of my thoughts.

David and I have decided that we will share this new journey we are on....no matter how hard or unknown it may be. Even if no one ever stumbles across this.....we want to be able to look back and know we were truly be carried by our Heavenly Father. And maybe....it will help just one person on their own journey..

On January 19th....I had special fetal ultrasound done to take a look at our little girls heart. Because my husband has a congenital heart defect....they just wanted to make sure everything was working right. I went in expecting good news.. But as the doctor kept staring at the ultrasound machine in silence.....I knew something was wrong.

As it would turn out.....her little heart is perfect. But her little brain isn't. The doctor struggled to find the words to tell me what he was seeing. Severe brain abnormalities. He had never seen such abnormalities before. Her little spine that is also affected. And....that she has a cleft palate and lip. He talked about other tests that would need to be done. He tried to tell me what he was seeing...but wasn't quite sure himself....  He was unsure of her surviving after being born. Or...what her quality of life would be. Or the thousand other possibilities that her abnormalities could mean.

I can't even describe that moment. I never realized a heart could ache so deeply...that a mind could be flooded with a thousand different thoughts in one mere instant.

I tried to stay strong. I wanted to hear every word the doctor was saying. I fought back the wave of tears that threatened to break through. David couldn't be there...he had to be at work(after all...we weren't expecting anything to be very wrong).. and I wanted to be able to tell him everything. Lucky for me....my wonderful in-laws were there. The doctor stepped out of the room for a moment....and I lost it. I sobbed into their shoulders.

"Our little girl. Our perfect....beautiful little girl...." was all that kept running through my mind.

The doctor came back in to do an amniocentesis....a test that would help them see if this was a specific syndrome on her chromosomes. As the needle pierced into my stomach....it seemed to match the ache in my heart.

The doctor was so kind. I felt so grateful. He promised to be in contact soon....after consulting with his colleagues at the University of Utah.

It was a surreal feeling to leave....to have received such hard hitting news....and yet hardly seem to know anything. In my mind I thought "I can feel her move so much inside me....she seems so complete....how can something be so terribly wrong?"

I called David. And with a teary...shaky voice....told him the news. I knew it would be incredibly hard for him to receive such news at work...  As a tender mercy for us,  his boss (who we are so grateful for!) gave him the rest of the day off...

Right when I saw David walking toward me with red eyes....I lost it again. He held me while I sobbed. For that moment....with David by my side....I could keep moving forward.

The rest of the week was a blur. We waited....praying for answers....praying for peace....praying for understanding.

As some of the results came back....it opened up even more doors of the unknown. A doctor from the University of Utah contacted us to try and go over what we knew. She said they were searching for a syndrome or diagnosis to help us see what her prognosis will be. The hard part....is that there is so much they didn't know. She gave us the hopeful reminder that medicine doesn't know everything. That even if they find a syndrome or a prognosis...there is much room for things to be on either end of the scale. They needed more images...she had said....and further testing on her chromosomes...which would take a couple weeks.

So we were left again to wait. And wonder. We reached a point where we felt at peace. We felt strengthened knowing that God is in charge. In knowing that He can see what we can't. He knows how special our little girl is.

We had another doctors visit this week....an MRI for the doctors to see a clearer picture of her little brain. However..it feels that with each doctors visit...we find out another part of her brain that is missing or abnormal. The doctor promised to be in touch with us again later this week to go over what they find/think about her condition. From there...she said....we will likely begin seeing a specialist at the University of Utah and deliver at that hospital.

With any one part of her brain that is missing/abnormal...a person can be completely normal. However....with her combination...they are unsure of the result.

The visit seemed to bring another wave of emotions. David and I felt, again, like we were just trying to stay afloat in a giant ocean of the unknown.

Would we have to say good-bye too soon? If so, how do you prepare to say good-bye to someone you love so much? What would she be facing? Would she defy the odds that are placed upon her? If her problems are severe...would we be strong enough to watch her struggle? So many thoughts...once more came flooding to the surface.

So...we've reached the here and now. We still sit in a whole heap of things we don't know. We are waiting for the call to tell us what they find.

Honestly.....this is hardest trial I have ever faced. I have moments where I am scared. Moments where I don't feel strong enough to keep pressing forward. There are moments where my tears seem endless.

However....there have been incredible moments. Moments where I have felt so close to my Heavenly Father. Moments of pure peace and hope. Moments of comfort. Moments of overwhelming love for my husband and our little girl.

Trials are hard. They seem to pull at the very fabric of your heart and soul. But I have come to realize that we are not in this alone. God didn't intend for us to face trials because He wanted to punish us. He knows what we can become. There are so many blessings that He wants to give us.......and sometimes....it is because of the greatest sorrows that we can find the greatest joy. 

One of the most amazing women I know recently gave us great insight. Often times in trials....we have fleeting moments of thinking "Why me....why now?" She said....instead..."Why not you? Why not now?" Heavenly Father believes we have the strength to get through this.

And I believe in Him. 

There is light in the darkness. Sometimes....that light is like the light of the moon...incredibly bright...but still unable to lighten all of the darkness.....We just need to have to have the faith to hold on until sunrise....when we can finally see everything.

We have been so humbled by the prayers and support that have been on our behalf. We feel so blessed to be able to see the hand of the Lord through so many people.

Most of all....I am blessed with the most incredible husband. He is my light and strength. 

I know that the love we have for each other.....and for our little girl is strong enough to see miracles.