Mary Beth - I raised my Downs sister when my mom was bedridden with leukemia. I was 15, my sister was 11. My mom died when I was 17, my sister was 13. My sister and I kept going until she died in my arms at 39 - it nearly killed me. I had my own family but took care of my sister too. She was like my own child by then.

Just breathe. Sleep A LOT. Your body is exhausted and so is your soul. Sleep. CRY whenever it is too much - go somewhere and just cry until there are no more tears. Let the tears wash your soul.

God gave me a gift after she died - He let me see her in heaven. The joy in heaven was so intense it HURT to even look on it. She wasn't 39 anymore, she was a little 4-5 yr old girl, twirling on greenest grass I ever saw. She was SO incredibly happy and free. Her joy was so overwhelming I had to turn away, and the vision was gone.

Your girl is free, and so so happy. They have a special place in heaven. They are God's gift, loaned to us. One day, you'll hug her again.