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.

For many, many years all I could do was be a caregiver.  I had no time to think about myself let alone my other children.  I had no desire to care for myself and I felt guilty about not giving my other children the attention they deserved.  All my effort was put into searching for a diagnosis and providing the basic necessities for my daughter that she could not do for herself.  She spent many days completely in her bed unable to even get to the bathroom on her own.  I brought food and medicine to her.  I wheeled her in her wheelchair to the bathroom and back to bed.  I bathed her.  I spent my days on the internet searching for answers.  Those days morphed into years.  I spent hours on the phone with nurses, doctor’s offices, and insurance companies.  For many years there were times I could not leave my daughter to even get to the grocery store.  In the little windows where she improved enough that I could, I would rush through the store as swiftly as possible, grabbing what I could and not feeling very organized in my shopping.  I recall one of those times, only to receive a phone call in the store from the school to be told that I had forgotten about my kindergartner coming home on the bus at lunchtime.  I was not home when he arrived and the bus driver had to take him back to the school.  I was such a mess that I had forgotten about my little boy.  I had no time to spend on how I looked.  I was sleep-deprived and looked like death warmed over and I did not care.  My heart was broken watching my daughter deteriorate and in severe pain.
Today, four years after a diagnosis, and managing better, I am beginning to think where I fit in.  For a long time, I could not tell you what things brought me enjoyment.  I had lost myself.  I had stopped doing a lot of the things I had enjoyed doing previously to my daughter being sick.  Today I felt inclined to write a list of all the things I love, the things that bring me joy…

talking with God, hands in the dirt of my garden, feeling God’s presence as I play the piano, dark chocolate, watching thunderstorms, listening to a storm while I sleep, the warmth of the summer sun on my skin, talking with my children, laughing with dear friends, telling of God’s faithfulness, time spent with old folks, hot donuts at the cider mill, the glory of a tree in the fall, hummingbirds, the strength and warmth of my husband’s hand in mine, the comfort of my morning coffee, chai tea latte, God’s good gifts to me, thinking about heaven, a baby’s grasp on my finger, watching my children grow, the smile lines around my husband’s eyes, butterflies, the soft fur of a kitten,

Notice my list is not complete.  Like I said, I’m just starting to have time to think about what I like.  I hope to add to this list and re-discover myself.  I am reminded in Psalm 139:14 that “I am fearfully and wonderfully made, your works are wonderful, I know that full well.”  He made me unique and He knows more about me than I know about myself.  In my desire to heal, I am spending some contemplative time just trying to get to know myself again.