I can't believe it has been almost a week since I last posted.  I got a phone call Saturday morning from my friend Kellie Moore.  Kellie and her husband, Brad, live in Nashville and they had a daughter named Rylee, who was also born with the same disease as Madison.  Rylee passed away in 2009 at the age of 8.  Kellie and I have become such a great friends and talk on a weekly basis.  She called to tell me that a little boy with I-Cell Disease, Ethan from Minnesota, passed away that morning.  He was only 3 months younger than Madison.

My heart was breaking.  Shane had gone into work on Saturday and Madison was still asleep.  To say I cried my eyes out is an understatement.  After sobbing for a good 20 to 30 minutes, and Madison still being asleep, I knew the only way I was going to get peace out of this situation was to go to God in prayer.  It is amazing was a great quiet time can do for you. 

If I did not have my faith, I would live every day that we have with Madison in complete fear.  Don't get me wrong, there are days where I let that fear slip in.  I have to remind myself that this is the Lord's will for Madison and he would not want me to have fear but rather complete faith.  We have to live each day we have with Madison to the fullest and give her the best life possible.  That would not be able to happen if I let fear run my life. 

We sang a song Sunday night at church that really moved me.  It has always been one of favorites.  The words just spoke so loudly to me.   

I need Thee every hour, most gracious Lord;
No tender voice like Thine can peace afford.


I need Thee every hour, stay Thou nearby;
Temptations lose their pow’r when Thou art nigh.


I need Thee every hour, in joy or pain;
Come quickly and abide, or life is vain.


I need Thee every hour; teach me Thy will;
And Thy rich promises in me fulfill.


I need Thee every hour, most Holy One;
Oh, make me Thine indeed, Thou blessed Son.

Refrain:
I need Thee, oh, I need Thee;
Every hour I need Thee;
Oh, bless me now, my Savior,
I come to Thee.

I lean on God every day to help me be the best mom that I can be to Madison, both physically and spiritually.  I am fully aware of the outcome of the disease that Madison has.  When you really think about it, we are all "terminal."  We might not pass away from a disease that is terminal but we will all pass away some day.  God knows the begining and the end for each and every one us.  I am so glad that Jesus lives in my heart and that he is there for me every hour that I call on him.  

I don't want people to feel sorry for us when they hear about Madison.  I know who holds tomorrow and for that I put all my faith in the Lord.  

Thank you for keeping up with our precious Madison.  Please continue to pray not only for Madison but all the other children who are battling this disease.  Also, please keep Ethan's family in your prayers, Scott and Tara Finne, and his little sister Emma.

Hug your loved ones a little tighter today and tell them you love them a little more often. 

~Romans 8: 38-39
          "For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord."