A Thousand Pieces

Tonight, my sweet rumble tumble little girl came to me crying.

About two years ago (at 3, same as me) she was diagnosed with LS. I thought I would die that day. I must have cried for an hour straight.

The last two years, I have been able (after an unsuccessful attempt with steroids) to keep it somewhat controlled with: non-perfumed soaps, no underwear, helping her wipe and so forth. But, tonight when I looked, for the first time she had two fissures.

I thought my heart would break in a thousand pieces.

I wanted to fall to my knees and sob uncontrollably, but I put a smile on my face, told her it would be okay and comforted her.

After she went to bed, I lost it.

How do I tell my little girl that it will only get worse from here on out? That there will not be a single moment when she is not aware of the itching, stinging, burning and bugs crawling feeling? How do I tell her that there is no hope, no research, no help and no answers? That her most private area of her body will be ravished, discolored, deformed and embarrassing? That she will find a man that understands and will have compassion?

I don't. I just pray to God that he will heal my baby. There are quite a few cases in which the LS disappears after puberty. I hope this is the case for her. It was not for me.

At some point, in a few years, I will have to sit her down, and tell her the truth. I pray by then I have the strength to do so. I hope my blog will be a source of comfort for her.

She is only 4. I don't know how to deal with LS at such a young age. I can barely deal with it myself.

I pray that God blesses me with the strength to deal with both her pain and mine. To be able to get out of bed tomorrow and not cry myself to sleep tonight.

Lord help me. ~S