I spoke to a woman named Pam who has two sons with cystic fibrosis.
They have the same type of the disease that Mark and I unknowingly passed along to our son, the f508 mutation. Eli has a copy from each of us. However, her sons’ illnesses are very different. Pam’s sons are 16 and 19. The older one is in college. They race BMX bikes (not motorbikes as I thought yesterday). Her 16-year-old just got his license. Her younger son, like Eli, was born with a bowel obstruction. Its proper name is meconium ileus. It’s not an indication of how severe his illness will be.
Unlike Eli, her youngest son’s meconium ileus was flushed out without surgery. As a result of having IV nutrition and perhaps lots of tubes down his throat for a prolonged period, though, he refused to eat, so he got a very rocky start with nutrition.
While Eli did need the surgery, he took to the bottle really fast and as of today is off IV nutrition.
How her sons illnesses are different, I did not ask. I’m just not at the point that I can digest a lot of medical details or want to know anything other than what my son presents to us on any given day.
Pam was very candid with me but told me not to be afraid.
“You’re going to have a different kind of life,” she said.
“And you’re going to learn real fast how to be a bitch.”
I am learning. And what she means by being a bitch is being a good advocate for your child. Sometimes, it just feels bitchy. Like when I argued with a few different nurses about the way my son’s poo bag was attached to his skin. It was leaking onto his as yet unhealed umbilical chord. Some nurses did it right, others rushed it and the bag would leak. I finally figured out I should stop complaining to the nurse if I felt her work sucked and go straight to the boss, the charge nurse. Suddenly, everyone was very concerned about my concern of the leaking poo bag. There was a special order for a wound care expert. Certain nurses are better at working the bags, and they would be the ones to deal with Eli’s problem. My constant presence at the hospital didn’t hurt. I still think I’m too apologetic about my concerns. Working on getting the “I’m sorrys” out of my vocabulary. Because actually, I’m not, so there’s no use being a phony and pretending I have any sense of remorse for hounding people about the finer details of my kid’s care.
Pam also told me she spends a lot of time fighting with insurance companies. The disease, she said, “Is an expensive pain in the ass.”
This concerns me a lot, I can’t lie.
However, it will become normal to us. The insurance appeals. The daily chest taps that clear up the mucus for lung problems (which my son doesn’t have yet but will probably have later) will be a matter of routine. When Eli’s older, he’ll get a vest to wear twice a day.
There will be a lot to remember, but I’m the boy’s mother, so I will find a way, she assured me.
Another main concern of mine is that Eli would feel different, that his life sucked or that he was growing up in an infirmary.
“He’s not going to feel like he got a raw deal if you don’t act like he got a raw deal,” Pam said.
Her sons do at times get annoyed with their treatments.
“Life’s not fair,” she reminds them. “It could be worse so be happy with what you’ve got.”
She said her family has treated her boys normally. The routines for care are normal to them. Dad’s a pilot so the family has gotten to travel a lot together. They just haul some medical supplies along.
Pam’s kids were in the background of the phone conversation. She was wrapping Christmas presents. They were making plans for dinner with friends.
She wants to meet me for lunch so I can meet her kids. I will do that soon.
“I want you to call me any time of the day or night,” she said. “I’m up all hours, I’m a stay-at-home mom and my husband travels a lot. I didn’t have anyone like me to talk to and I think it would have helped. I can be your shoulder to cry on.”
The crappy thing about the cystic fibrosis community is that the doctors don’t want CF children hanging around together, because they can catch each others’ lung infections.
That doesn’t mean I can’t make friends.
I already found one in Pam.