Heartbreaking

Hmmm...as I lay in bed with Anya a few minutes ago I wished I could communicate what it is like to have a sick child, what it is like to watch your child moan, whimper, and cry throughout the day and night for weeks on end. I wish I was a better writer so that I could capture in a few words the experiences we have with her, watching her suffer. And while I continue to remind myself that things could be much worse, that she could be gone or that could be sicker, for longer, it is still heartbreaking to see my daughter suffer so.

There have been times in these past few weeks when Anya was so constipated that all she could do was wander around the room, waddling and moaning. Other times she has had diarrhea until her little bottom was raw and she cried from the pain and from the embarrassment of having gone to the bathroom in her pants again. She often lays around for hours throughout the day exhausted and weak yet wakes two or three times every night, asking for food and movies, because she cannot sleep. She has gained a lot of weight, increasing a couple of clothing sizes. She has difficulty completing simple tasks like climbing up on the couch because she is so bloated. Just minutes ago she woke up, calling for me. When I lay down with her she asked for a story and as I spoke she whimpered and shook until she fell back asleep. And all of this is caused by the drugs that we expect to save her life.

Yes, things are better than they were in the beginning. And yes, things are better than they could be but we still mourn over the pain our little girl must endure and desperately pray for more of God's mercy on her young life.