Laila was being just the teensiest bit naughty this morning. I turned a Santa figurine toward her that my dad sent in the mail this week.
“Santa’s watching,” I said. “He’s got his eyes on you.”
Laila got up and turned Santa toward the wall.
Clever girl .
I haven’t been able to write for a few days.
Doctors had been preparing us since Eli’s second day of life for the possibility of cystic fibrosis, based on the suspicious nature of his gut problem. There was still hope, though, that he didn’t have it. We were hanging on to that.
A scientific confirmation that our son has a genetic disorder crushed our spirits. Not because “there is something wrong with our child.” We think he is adorable and perfect. What got to us was the prospect that he would feel different, or uncomfortable, or pain of any kind. The thought that he could be conscious of his own mortality much too young broke my heart. Why our son? Why our family? These thoughts crossed our minds again and again.
But who wants to live in a comi-tragic state of Nancy Kerrigan?
Every day is new and spirits do indeed bounce back.
All I have to do is look at the little guy, who is doing so well considering his tumultuous start to life, to feel better.
I’m not in the mood to explain the disorder, though. Got to cff.org to read more about it. I haven’t gotten past the Overview tab under “About cystic fibrosis.” If I were hooked up to an information IV, it would be set to a slow, slow drip. That’s all my system can take right now.
Here’s what the overview says:
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
clogs the lungs and leads to life-threatening lung infections; and
obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
For Eli, what this means so far is that he needs to take enzymes before every meal. This seems really manageable now that I’ve seen it done. The enzymes are tiny white beads that the nurse sticks in a little bit of applesauce. Baby gets the applesauce and enzymes, then a bottle. He also needs a multivitamin now. The vitamin mix is liquid, bright orange. I gave it to him in a syringe today at the hospital with limited success. Poor baby wore a bright orange vitamin beard by the time I was done with him.
A respiratory therapist comes in to thump his back and chest for just a few minutes several times a day with a little cupping device. This is done even though a pulmonologist (lung doc) I met says it’s probably not necessary until he is older than 1 or maybe even 2. If lung problems appear, it’s usually after this time. Lung function in infancy will be good, he tells me.
It helped a lot today to speak with a woman who, I believe, is a genetic counselor. Her name is Susan but I forgot to get her proper title. It was reassuring to hear that everything we were feeling was quite normal. It’s overwhelmingly probable that Mark and I both have a recessive gene for CF. We passed copies to Eli. Every time we have a child, there is a 25 percent chance that child will have CF, a 50 percent chance the child will be a carrier, and a 25 percent chance the child will not have the gene.
There is 100 percent chance we will do everything in our power to give Eli the best care possible and a life full of love and happiness. We are living in a suspense novel right now. We want to sneak a look at the end and make sure our favorite character will be OK. We can’t. The only guarantee is that his story will be beautiful.