I thought it might be necessary and helpful to update our friends and family on what the doctors are telling us about Emri's condition. It is not encouraging, it is not what we want to hear, but it is what science tells us. We continue to be thankful for the knowledge that our GOD is so much greater than science, but we know that what the doctors tell us may very well be the reality for our little girl within the perfect will of our Lord.
Neonatal marfan's is a severe form of Marfan's. When the internal signs of Marfan's are found in an infant, it is most commonly a sign that the infant holds a more serious and lethal form of Marfan's. We were told that Emri has neonatal Marfan's and that 50% of infants with this live past the age of 1, and 95% don't make it past 2. This has been proven over and over again in past cases of neonatal Marfan's. With babies exhibiting internal signs of Marfan's, their condition tends to get worse quickly and the doctors have no way of slowing things down.
Why? Everyone always wants to know why. We don't have to ask though. God's will is perfect, and even good. Good?!!? You know, it's hard for Brett and I to see, but we just have to know it is. We have found a peace that passes understanding, and felt a love that endures all pain.
'"My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.' (2 Cor. 12: 8b-10)
We continue to pray and pray for our Emri. She is precious, and a gift. We are not taking this news as a death sentence, and we are not approaching it with ignorance. We know the scientific reality, and we know the power of God. Thank you for all the words of encouragement, the generous gifts, and the powerful prayers. Let's continue to pray in faith, with the knowledge that God has a beautiful plan for our little one, and the willingness to accept His good and perfect will.