Hi Karen! I can only imagine how something like this would shake your faith. I'm sure a lot of well-meaning people will offer empty platitudes because they care, but don't know what to say. Maybe that's what I'm doing, too. While I haven't suffered in your particular circumstance, I have gone through much suffering (loss of health, career, close loved ones) and, hopefully, can offer some perspective for you.
First of all, though I was too numb, angry and frightened to feel Him, God was right there helping me and my family through it all. It's possible for me to look back on our tragedies and see His work and His love...but not during them.
Second, though the religious influences around us make us look at what we've done to "deserve" this plight, there is nothing you did that made you deserve a genetic disease. If you've come to God and asked Him into your life, there is nothing left of any "sins" you may have committed. Jesus said it rains on the just and unjust, alike. Whether He heals you physically or takes you home to be with Him, nothing can separate you from His love. The deceiver will try to make you think you don't deserve God's help in hopes you'll give up on God, but only you can make that choice.
Finally, I believe the greatest expression of love and faith in God is when we shake our fist at Heaven and scream out our frustration and anger at our Heavenly Father. It's one thing to always be reverent and respectful of God's power, as the religious people have taught us. I believe it's a much higher level of faith when we believe in His love so much we can count on it even when we're angry at Him. We can trust Him to love us and we know He understands and is powerful enough to handle our anger and frustration. After all...to act all reverent in this situation is a bit dishonest...that can't be pleasing to Him. So, let loose and tell God all the things you're feeling right now. He can take it! He loves you and will hold you through all the pain.
We'll be praying for you and your whole family. Please keep us posted on how things are going so we know how to keep praying for you. We're not God, but unless the Internet goes away, we'll be here with you.
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Love & Hugs, Glen
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