2,390 days...

Getting bad news is always rough, but getting the news that my daughter has a bacteria in her lungs that can lead to death, is beyond hard, it's impossible to accept.  

In the past 2,390 days...I have prayed, worried, wondered, hoped, cried, laughed, yelled, been angry, scared, happy, thankful, overjoyed, sad, distraught,  fearful, comforted, encouraged, and been enlightened.  I have felt success and failure.   I have endured easy days and unforgettable hard days. 

It has been 2,390 days since we received the news that our 18 month old daughter had Cystic Fibrosis.  I have spent roughly around 225 days in the hospital fighting Cystic Fibrosis from stealing precious moments away from my daughter.  The frustrating part is no matter how hard I try, I can't prevent her from bring ill. 

Living with a child with Cystic Fibrosis, is one of the most rewarding, fulfilling experiences.  To know that God hand picked me to care for Emma is the biggest compliment I could ever receive.  To watch her in her healthy days is so exciting.  However, with that joy, comes the hardest, most heart crushing,  devastating,  challenging,  frustrating,  exhausting experiences.

Today, I talked with the doctors more in detail to try and fully grasp this new life-threatening bacteria.   B. Cepacia is so rare that unfortunately,  there is very little data on how to treat it.  Only 3% of the CF population have B. Cepacia.  Emma's pulmonologist is taking the most aggressive approach he can take.  However,  that in no way, shape or form means it will eradicate the bacteria.  He also informed me that Emma's level of this bacteria was in the moderate range.  They are hopeful that we can control the bacteria but skeptical that we can completely eradicate it. 

As I sit in this hospital room, and watch my sassy little warrior princess play games, sing and laugh; I'm struggling with holding the tears in.  I knew 2,390 days ago that Matthew and I would be fighting for her life...but I never thought we would be faced with the need to fight for her to enjoy more tomorrow this soon.  I'm not in a place where I'm ready to watch her decline, to stop having the energy to play.  I'm not ready to watch her lung function drop,  hospital stays become more frequent, and even worse...the image of the day we have to say goodbye and watch her struggle to take her last breath.  This is not fair!  

Before, Emma was admitted,  a friend, who has lost a child, told me...when you lose a spouse you become a widow.   When a child loses its parents it becomes an orphan.   But when a parent loses a child, there is no name for it because it is the great heartbreak you can ever experience.  That a part of you will forever be missing.  It's to early in Emma's life for this to be a concern already! 

I'm selfish...I want more time!  I want to teach her to do her own laundry, and how to drive.  I want to watch her grown into a beautiful woman.  I want to show her how to put make up on, go shopping for the perfect prom dress, to discipline her when she breaks curfew.  I want to watch her graduate, to help her decorate her own place, to send her off to college, to challenge her to be a better friend and to comfort her when her heart breaks from the boy that my husband will hunt down and teach a lesson to.  I will do everything in my power to stop this monster inside her from stealing those moments. Emma has Cystic Fibrosis but I will not allow Cystic Fibrosis to define her life or mine!!

As I think about these things...my heart can fill with fear...but I have to stop and remind myself of a few thing...here's a few ways I endure through the fear:

Ten ways to find encouragement today:

1. I serve a Big God, who is in the miracle business!!!
2. God loves Emma more than I ever could.
3. This earth is just our temporary home.
4. That even in my darkest hour, God will still carry me through.
5. That as I look to Him, He will give me the strength and courage I need to get through each day.
6. That it is ok to be upset, angry, frustrated,  sad, disappointed,  or heart broken, BUT, sorrows will only last for a night and joy will come in the morning!
7. God will meet every need we have! 
8. In my weakness God will always be victorious!
9. That I CAN do ALL things through Christ that strengthens me.
10. That no weapon formed against me shall stand!!

This journey we are on is hard, I would be a liar if I didn't admit that.   I have cried my hardest tears, in hospital bathrooms and showers.  I have sobbed into my pillow after the nurses walked out.  I have found myself on my knees begging and pleading for God to take this from my baby girl and give it to me!  But every time I feel so broken, God swoops in, and rescues me.  He embraces me and fills me with happiness as I remember,  the JOY is in the JOurneY!  Here's to hoping you can find your JOY in the one who created you!  As a woman walking through my darkest days...He has always carried me through...let Him carry you today!!