Managing with EDS is a very lonely journey. My whole life was consumed with caring for a child who was in severe pain and who was basically not functioning. She could not care for her own basic needs. My child had completely changed, deteriorated physically, and evolved into a person I did not recognize. It felt as if she had died and I wanted her back. How could God allow this to happen? I felt utterly abandoned by God. At one point, I was contemplating leaving my family and turning my back on God. It was at this time that God sent me a dear friend to walk beside me. See, God knew exactly what I needed to cope. Over time, He did this over and over. He showed me that even in dire circumstances, He was there in the quiet even though I did not always feel His presence. I found comfort in reading my Bible and I bookmarked numerous verses during times I spent at hospitals. Just reading over those verses brought me back to what I knew was true. I had to block out my feelings because they would lie to me and tell me God had left me. Once I grasped hold of this, God opened my eyes to all the people in hospitals who were just like me. There were patients, mothers, and fathers who felt abandoned by God just like I had felt. I had an opportunity to breathe God’s truth into them. I figured if my daughter was going to deteriorate, I was going to take as many to heaven with her as I could. God gave me boldness to tell others that God loved them and that He had a plan. These people were so thankful to hear that.
You may FEEL like God has abandoned you, but I can emphatically tell you that He has NOT! He’s giving you opportunities to interact with others just like you who need to know the truth that you know. Trust Him to take care of your child and step out in faith to be a voice for Him while you can.