I came across an aricle last night which broke my heart however I found myself relating to the struggle. The struggle is inwardly as well as externally, one that tests your Faith and Strength. Why does it test your Faith? Because surely God did not intend to give your child a disease/disorder that has no cure OR treatment. Strength? Strength, both physical and mental, is what carries you from day to day. It keeps you from falling to your knees and giving up.
This quote is one from a mom which embodies the feeling of helplessness sometimes found in rare disorder parents. Full article here: http://bit.ly/1HXr19P
"Sometimes I wish she would have gotten Cancer; at least there would've been a protocol we could've follow," Nicole said. "There is absolutely nothing I can do to help my daughter, and as a mother, there is a lot of guilt."
When your child has a rare disorder(or a diagnosis of anything) all you pray for is help for your child and when you find out there isn't any...it rips your heart out. There is no "map" on how to wage war on what has attacked your child. It is a very bitter pill to swallow. I encourage all parents who are on this arduous journey to remember what God tells us in Proverbs and commit it to memory...
"Trust in the Lord with all your heart, and do not lean on your own understanding. In all your ways acknowledge him, and he will make straight your paths."-Proverbs 3:5-6
As a parent, you know the struggle exists. Respect the struggle. Keep fighting and keep advocating. This is the life God has truly blessed you with and best of all.....
There are cures in Heaven.