User post: Watching my son die, slowly

I wasn't going to write this, but after leaving the hospital this evening, I felt I had to. My son has Cystic Fibrosis, and it is going to kill him.

There is CF in both my and my husband's family, which probably gave us both the gene for CF. Why it
has reared its ugly head on only one of my boys is just a trick of fate, or so the doctors tell us. What I
never realized before, when I was pregnant with him, was just how cruel this trick was.

Aaron was diagnosed with CF at birth. Raising a CF baby is hard enough, when they become school
age, it gets even harder. He's smaller than most kids his age, more underdeveloped, and kids can be
cruel. It wasn't the taunts about his size so much, but the dreaded bathroom. If you don't know that much
about CF, one of the "little treats" is very loose, smelly bowel movements. From fifth grade 'til now, he is home schooled. He just couldn't take it anymore, and neither could I.

Through the years, Aaron has had bouts of pneumonia, nose polyps, and many respiratory problems
that have curtailed keeping up with his brothers. Luckily, all of my boys know what CF is and still treat
him like a normal, healthy brother. They know how to help with percussion, and breathing treatments,
and helping him out of the pool, off the baseball field, or out of the surf when he gets too tired. They're
good boys, and I love them all.

I've seen my son play on the beaches of Italy, walk the pathways in Greece, enjoy the sunshine in
India, and his cheeks red from the cold in Switzerland. He loves to travel, but hates going to foreign
doctors if a problem arises. He looks forward to trips in the summer, but always helps me look for
definite medical access where we're going. That's the one thing that's always a must when we
travel.

In many ways he's like a normal kid. He plays his music too loud, eats all the time, and has a girlfriend.
He stays on the phone too long, on the computer too long, and hates homework, and broccoli. He
hates getting dressed up for church, and going to see Grandma. (He and I agree on this point).

He also hates going to the hospital. Over the past two months, he's had a problem with his oxygen
saturation, and been diagnosed with B cepacia. Along the way he picked up the flu, which left him with
an IV drip of antibiotics for what seems like forever. His doctors have told me that it is time for a lung transplant. With B cepacia, it is hard to know if he will receive a transplant or not.

He has friends at the hospital, CF patients his age who he loves and keeps in touch with when he's
at home. Aaron has never been at a loss for friends! He mourns those he's lost as if they were part of
the family, and in many ways they were. He's only seventeen.

He's only seventeen, and I'm watching him die, slowly. I love my son, he's my heart.