We have to pray with our eyes on God, not on the difficulties.
On the last day of the NIH study (June 11), I spent about an hour and a half watching this sweet face during her MRI. Although we don't have any results of the MRI yet, we know that it will more than likely show some brain abnormalities. NOTHING serious just differences in her white matter that is common with Merosin Deficient Congenital Muscular Dystrophy.
During her MRI, they brought me a chair so that I could stay right beside Lily. It was a great extended prayer time for me (in between giving her huge smiles and thumbs up). Knowing that this test would show another difference in her sweet little body...most would expect me to sob throughout it, right? Nope! I spent my quiet time thanking God for each and every second that He lets me be Lily's Mama. I prayed for wisdom as we learn more about her MD and seek out the best treatment for her. There was no begging for healing, just a request that He use her to show us all how amazing He is. The peace that I felt sitting there with Lily during her MRI can only come from God.
Don't worry about anything; instead, pray about everything; tell God your needs, and don't forget to thank Him for His answers. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will keep your thoughts and your hearts quiet and at rest as you trust in Christ. (Phil. 4:6-7)