Ghost Girl

Things have started to get a little bit better for Haddie since I last wrote. She is slowly getting over her bronchilitus and is eating better. She's still pretty knocked out and lethargic from her seizure meds. We wrote to our neurologist and he had us take down the Sabril medication starting today. So we will see if that helps with her alertness.

Most of you know Haddie had a level 4 brain bleed on both sides of her brain before she was born. Doctors have told us that she will not be able to do very much. She's already defied the odds and is doing way more than ever expected. But we have to admit, this is hard sometimes. We want her to do more and it seems that things often go at a snails pace with her. We dont know how much is sinking in...or if anything is.

I picked up a book this past week that has challenged me as a parent. It's called Ghost Boy. Maybe you heard about it on the Today Show. Its a book written by a guy named Martin Pistorius (not the blade runner, shoot his wife guy...that's Oscar). He was a normal little boy until he was 12. At that point for some reason unknown to doctors he started to regress both physically and mentally. He lost all of his motor skills, speech skills, and every other kind of skills. Doctors said he was brain dead. And in his book he says that's what he was...for four years. But then his mind woke up. He became aware of his surroundings. But his body wouldn't respond no matter how hard her tried. For 9 more years he was a mind trapped inside a body. He talks about how he would be dropped off at a care center each day and often would not get any mental stimulation all day. He'd watch Barney for hours. Most people treated him like he was an empty shell...a ghost boy. But one day he was given the chance to be tested using a computer that would help him communicate. It took a couple of years but he finally showed everyone that he was there all along. And now he's a college graduate, is married, has a job and a best selling book.

You never know what's happening below the surface.

That story fills me with hope and wonder. You can see in Haddie's eyes that there is something going on in her head. Some of the doctors and therapists encouraged us and told us that we have no idea how a growing brain like Hadassah's will compensate for the damage that has been done. Maybe she is learning...but her body just isn't showing what her mind already has comprehended. This challenges us to dig deeper and provide more stimulation and chances to learn. We do a decent job at that but sometimes it is tough when you don't get a response in return.

Martin never gave much of a response either.

There are days that we do better than others. We still ask for and need your prayers. God gave us Haddie for a reason and we are beyond blessed to have her in our lives. Thanks for reading.

God is good.