My Emily

Last week I took Emily to get her haircut.  As she watched her reflection in the mirror I felt like I could see pain on her face.  She was not happy with the way she looked.  Later that day she asked me if her face would ever look the way it did before she got sick.  The swelling is what I consider severe, but we can't get it to go down until we get off all of the steroids.  With 7ml still each day getting to 0 seems like an eternity away.

We have had to be mindful of her self image now.  We no longer tell her she is a big girl, we say she is growing up.  I like to tell her how wonderful motherhood and marriage is, but now I just talk about marriage.  I realize that these treatments are so new and so life altering they may very well take away her ability to ever have biological children and I have no doubt that may be very painful for her one day.

The doctor seems to feel that it's ok for kids to be on the medicine because they aren't aware of how it changes them physically, but Emily is very aware and an intelligent child.  I wish we had a doctor who had a child dealing with this,  not because I wish it on someone else, but because there are so many daily living aspects to this disease that the doctors just don't get; such as the physical appearance and extreme exhaustion.

See, the thing is; you don't really understand what it's like until you live with the disease.  None of us understand except Emily.  You really can't fully understand what it's like to parent a child with a chronic illness until you have one.