Learning

The last month or so has been a huge struggle. There are no words that can explain what it's like watching your child suffer in pain. You do not get used to it and it doesn't get any easier, that's for sure. The fact of the matter would be that it gets HARDER every day that she is in pain. I wish it was me that was dealing with all this, but God doesn't play "Let's make a deal". He won't let us trade places, even though my sweet girl said that I wouldn't want to even if I could.

Even in these difficult days there have been blessings. One would be that Haley has been invited to Camp Boggy Creek for us to go for a family weekend with other kids nad families dealing with rheumatic disorders. Her doctor said not to expect to see any other kids there with her diagnoses, but that they would have other things in common like pain and having to take the same medication. That sounds pretty bad, but it would be nice for her to meet someone that she could identify in that way. I also hope that she has other things in common with people she meets there. Things like Twilight, Harry Potter, Miley Cyrus and sparkly eyeshadow. We'll see how it goes.

Just yesterday, her doctor called me to increase her Prednisone and double up on her pain medication in order to get the polychondritis under control and to ease her pain. We seriously hate the Prednisone part, but reducing that pain sounds great. Her stomach has been doing much better, hopefully that will be okay still with the increase in her steroids. Next week she sees another specialist for her ears. The ringing has gotten worse and they need to check the structure to make sure that her ears aren't being affected by the polychondrits.

Goodness, it seems that there's a whole lot going on in her body. I still know that she was wonderfully made and that her Creator designed a perfect her. Knowing that doesn't make me able to accept her pain. Having faith that God is in control doesn't mean that I can sit around and just wait for things to happen. It means seeking Him and asking for doors to be opened for the best care possible. My prayer is that she lives a big full life that doesn't include pain. That's all I want.