I look at my sweet seven-year-old daughter, and my heart breaks.  You see, my daughter is dying of an incurable illness.

My name is Barthe St. Clair.  I live in Pasadena, California, with my husband, Wilbur, and our three children:  Evanescence Michelle (13), Happiness Rose (11), and our youngest, Elisabeth Maureen (nicknamed "Bitsey", on account she is so tiny for her age).

Until Bitsey was diagnosed with cystic fibrosis at the age of one, we were a normal, happy family.  Now our lives mostly revolve around Bitsey's medical needs.  It's gotten very stressful in our house; I fear for our other two daughters, because they are so close to their little sister.

Bitsey is often sick, often in the hospital, for one thing or another (mostly with her breathing).  She's hooked up to oxygen 24 hours a day:  any little bit of exertion can cause severe shortness of breath.  She's on a regimen of up to 30 different medications a day.  She's only the size of a three-year-old; her sisters easily tower over her.

When not sick or in the hospital (a rare thing nowadays), Bitsey is like most other seven-year-old girls.  She loves horses, loves the color pink, adores Hannah Montana or the Jonas Brothers (she also loves Kaitlyn Maher from "America's Got Talent"), loves playing dress up, and reading any book she can get her hands on. 

Lately, though, Bitsey seems less interested in her favorite activities and now focuses on how good she feels or whether she is going to be able to get in a good breath.  She spends more time in her bed or sleeping upwards to 13 hours a day if she so chooses. 

Bitsey has started asking difficult questions about death or dying, and she's expressed a desire to learn more about Jesus Christ.  It is all very upsetting; I could kick myself for all the times I've refused to answer her most important questions. 

I know I need to be there for my daughter; however, I think of her health, all that she's had to endure, and of her impending death, and I fall apart (not so much around her; it's when I'm not with her when I break down).  I try to be brave for her sake; however, I've failed miserably, and I feel as though I've let her down.

Again.

Now, I don't know when Bitsey is going to die.  I know she's going to; as for when or how: that's the thing I'm having the hardest time with.  I'm having a very difficult time accepting the fact that our youngest child will never reach the age of eight (nine if she's lucky).  She will never know what it is like to go out on a date, have her first kiss, buy a car/learn to drive, get married, have children, grow old.  She will forever remain a little girl.

You expect your parents (or your spouse) to die before a child; when it is a child who is dying, things change completely:  it doesn't make any sense whatsoever.

Well, I will write in here again:  have to get the girls up for school, also get Bitsey's morning meds/breakfast ready.  Until next time, just think of Bitsey and thank God you aren't in my shoes.  Having a child who is dying is something I wouldn't wish on my own worst enemy!

~Barthe St. Clair. :(