Thank you Lord for Lily

    Many of you know, although some of you may not, at around 34 weeks, Lily was diagnosed with a genetic condition called Trisomy 18, also known as Edwards syndrome.  This is a chromosomal defect that occurs at conception when there is an extra chromosome present in the 18th position so that there are 3 chromosomes instead of the usual 2. It is the second most common chromosomal defect behind Trisomy 21 aka Down's syndrome.  It occurs in 1 in 5000 to 8000 pregnancies and is a random occurrence with no correlational ties to outside causes, and is not hereditary. Unfortunately, the prognosis is the worst for babies with Trisomy 18, with most pregnancies that make it to term being stillborn. A small percentage of babies live for several hours, days, or some even weeks, however greater than 90% pass away before 2 to 8 weeks. Those very few that live beyond that period will suffer from severe physical deficiencies affecting nearly every vital organ which makes them unable to sustain life for any extended period.  I would like to point out that it is not a disease, or an illness which can have a cure, but is genetic defect affecting every cell in her body.  This means that it is as much a part of her as the color of her eyes or the shape of her feet.  I point this out to say this; although we believe that The One who created the stars with a word, has the power to remake her  whole again, we must accept what He has shown us that He has for Lily and us.  Although we continue to pray for healing, we know we must accept the burden God has chosen to allow us to carry, and we submit to His will, as He "works all things together for good." (Romans 8:28).
    Having summarized the condition, let me say that by the grace of God, Lily has already beaten the odds. Having been born alive, and staying with us for nearly three days now, she as proven to be exceptional, (90th percentile). I love to brag when any of our children achieve such a status in any aspect of life!  But this is not the only thing exceptional about Lily Belle.  She has proven to be such an important part of our family.  We give praise to the Creator and our Savior for allowing us to have some time, no matter how short, with Lily. And we are so thankful for what she has already added to our lives.  I don't want to pretend that we are not devastated and severely heart broken about the circumstances of our inevitably coming loss.  It hangs in the air every moment. However, we want to do everything we can to fully savor every moment God allows us to have with Lily.  Therefore, we will do our best to be obedient to God's word, and resist the urge to mourn until God's appointed time for us. (Eccles 3:1-8).  We fail a lot, but by God's grace, we continue to try.  I am setting up a blog so that I can share my thoughts from time to time with any and all who care to read.  It is my attempt, in some small way, to share a part of what God is showing us though his vessel Lily Belle.  This message will double as the first post.  Thank you all in advance for all your prayers, and the compassion everyone has already shown us.  God bless you.

- Brian (Lily Belle's dad)