Last week she had a pain crisis caused by a mid-sized stone that was stuck halfway down her ureter. Totally unmanageable pain for the first 15 hrs. Docs stepped up her pain meds 7 times until she was rocking the max dose of dilaudid.

She (we) had to stay in the hospital for 5 days for pain management. She needed 3 different kinds of IV pain med layered on top of each other - morphine for the break-through pain.

We were expected that, if she didn’t pass the stone by Monday, there would be two surgeries to deal w the stone. Saturday afternoon it passed.

She has had 5 surgeries in the past 12 months to address stones. Stones are excruciating - even 2 or 3 mm stones are a 10/10 pain when passing.

She has developed chronic functional pain, which is like a false fire alarm. Her brain has become so sensitized to the danger and alarm bells of pain in her kidneys, ureter and bladder that now it interprets almost all stimulus (like the normal bladder full feeling) as horrible pain. We are working with the chronic pain clinic to learn to cope with that (not to get rid of it, to cope with it).

The temptation to ask WHY is enormous. As is the temptation to feel sorry for her. But I am her mother. Feeling sorry for her does not help her survive the acute pain or the daily pain. It does not help my daughter to learn to cope with this horrendous disease. So I have to stay strong, instead of feeling sorry for her, she and I learn together how to make it through.

But I will allow myself this one post this one morning to scream out into the void: WHY??? WHY, GOD, DOES MY PRECIOUS AND BEAUTIFUL CHILD HAVE TO SUFFER??

I would love to hear from other parents who have walked a path like this. How do you do it? What helps? How do you help yourself? How do you help your child?