Our Lightning Bolt

Shortly after I posted my last blog....I got a phone call. The doctors wanted to meet with David and I the next morning to go over all of our results.

Every part of me wanted to be so optimistic about the visit....but I felt there was a reason they wanted to meet with us in person. 

The next morning....David and I both couldn't shake the anxious feeling. When we got to the doctors office....I went to the bathroom to pray for the strength to sustain me through the visit. I prayed that whatever was to come....that we could find a string of hope to hold to. Little did I know how much we would need it. 

When they called us back...the nurse let us know the doctor wanted to do one more ultrasound just to get yet another look. Dr. Hales (who has been so great with us) came in and for the next 45 minutes kept looking over her spine and facial features. 

In my mind I thought...."This is a great sign! He hasn't even mentioned her brain." 

After the ultrasound...he told us he wanted to meet with us in the conference room to go over the genetic results and the MRI report from the U. Once we were in the room...a genetic counselor from the U was their via skype....a neonatologist...and Dr. Hales. 

Dr. Hales began reading the MRI report. With every line he read....my heart sank. Her little brain is much worse than we could have ever even begun to imagine. 

Suddenly I felt like my world was spinning. Every part of me had somehow secretly hoped that we would go into the room and they would say..."Well actually...everything looks great! We just looked wrong." 

Instead....here we were. Being told our little girl might not survive for very long. 

We were being counseled about the decisions that lay ahead for us. They told us they wanted us to think about how aggressive or palliative we want to be with her care. 

I didn't even know how to process those words. What was that even supposed to mean? I grabbed David's arm....and tried to fight back the emotions and tears. We needed to hear all they had to tell us. 

The doctors gave us different scenarios of her birth. She may be born breathing....but the rest of her brain vegetative. Or she may be able to breathe....but not have the ability to eat...would we want to keep her on a feeding tube if she is suffering? Or if she isn't able to breath on her own....what would we want to do? On and on it continued....because of her condition....there is no way to be certain of the results....they continued to say. 

In all scenarios they went over...they feel there will likely come a point where David and I have to decide what is enough....and when to let her go. 

Even as I type those words....I can't fully grasp them.. How can we decide that?? I feel like I need a license or something to make that decision. How can we ever be strong enough to say good-bye to our little girl? 

It is so odd...they told us...that every other part of her is perfect. The genetic tests came back normal. There is no known condition that would cause this. They have never seen the brain become so affected the way hers is. Dr. Hayle said....it's spontaneous. Like getting struck by a lightning bolt. 

An hour a half later....We left the office....once again....unsure how to even begin processing. We sat in the car held each other.....and cried. And prayed. And tried to make an ounce of sense out of what we heard. 

In the days that have followed...I think we both have cycled through so many different emotions. At one point....I had reached a level where I was already feeling like I was having to say good-bye to our little girl. I felt like I couldn't wrap my mind around it.

However....because our Heavenly Father is so merciful...He sent me help....through my incredible husband. As we prayed together one evening...David began praying for our little girl. Praying that she would have a fighting spirit. That she would be able to defy the odds that are placed upon her. Praying that as her parents...we would also be able to fight for her. That we could keep believing in miracles.

That hit me like a train. It was possibly the sweetest, most sincere prayer I have ever heard. How could I ever be giving up on our little girl? Of course we would fight for her. Pray for her. Hope. And know that God has power over all things. It is our time to continue to actively trust in Him.

We move forward. We believe in the power of miracles. If the time comes that we need to make those decisions... God will give us the strength to make those.

For now...that gives me hope. Yes....our little girl may be like a lightning bolt. But she is the most incredible lightning bolt to hit our lives. She has illuminated our skies in so many ways. Already....she is a miracle and strength in our lives. Loving her.....praying for her....believing in her has brought me closer to my Heavenly Father. It has humbled me. It has brought me to my knees countless times.

If there are any of you out there who are struggling....if you feel you are hanging by a thread....or maybe you are just having a rough day... Don't ever give up hope. Even if all the signs around you point the other way. 

It is not easy to keep hope. You have to work at it every day. Sometimes even minute to minute. But you don't have to do it alone....God is with you. He weeps with you. He rejoices with you. He will strengthen you. When you have nothing left within you....He will make the difference.

This hasn't been easy for us. There are still so many moments when David and I feel there are simply to many emotions to even process. It is almost a numbing effect. It is in these moments we are carried by His strength. 

There will be hard days ahead.

But there will also be beautiful days.

Happiness can be found even through tears.

So....from now until our sweet little girl comes, we will continue to love. We will love her with all the strength and power of our hearts. 

God is real. Miracles can happen. 

We are so grateful for all of you who have offered prayers on our behalf. There is power in prayer. They truly do give us hope...and strengthen our little girl!

Our journey is just beginning.