Some days you really don't know how you're going to make it through.
I once was a carefree, self-centered, full-grown man-child. I started making records when I was 17 with Ice T. By 21, I had my first real taste of success with a band called House of Pain. At 28, I released my biggest record to date right after I suffered a torn aortic valve and had to have a lifesaving valve replacement surgery. (I now have a titanium valve so I’m sort of bionic, I guess.)
I never banked on being around very long after my surgery. I was pretty sure I might get five to ten years more out of life and I lived accordingly. Until my first daughter was born.
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I know everyone says becoming a parent changes everything, and it does. But the change that came for my wife and I was not the kind we were expecting at all.
My oldest daughter was born with Cystic Fibrosis. I found this out when the obstetrician called saying how sorry he was and how terribly he felt—without his realizing that the hospital had not yet called to tell me. So being on the spot and having me ready to jump through the phone, he broke the news. I remember thinking, “I’ve heard of that,” but having no clue at all what cystic fibrosis was, so I immediately Googled it.
I remember the numb feeling that washed over me as I read about all the complications (diabetes and lung transplants) and the life expectancy (30 years, if you were lucky). I remember thinking, “Am I seriously contemplating my newborn’s mortality right now?”
How was I going to tell my wife? What words do I use to tell her that the 3 week-old baby she’s completely in love with has this life-threatening genetic disease? What I didn’t understand was she already knew something was very wrong. She felt it in her gut. When Laila was born she couldn't eat. She had some sort of blockage (meconium) that was actually common to Cystic Fibrosis, which I’ll refer to as CF from here.
They took Laila from the room and Lisa did not get to hold or feed her that night. She was devastated. They kept her for a few days in the hospital. When we got to bring her home, we hoped we were out of the woods but, as I said, my wife knew something wasn't right. A genetics test was done at the hospital in which they scraped Laila’s heel and used the DNA to test for all kinds of disorders. This was the test that told us Laila had CF. There was an additional “sweat test” to confirm the excess salts purged through perspiration. When you kiss her skin you can taste the salt.
“Cystic fibrosis is an inherited disorder that causes severe damage to the lungs and digestive system. Cystic fibrosis affects the cells that produce mucus, sweat and digestive juices. These secreted fluids are normally thin and slippery. But in people with cystic fibrosis, a defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas.”
That's the Mayo Clinic’s short definition of CF. But what it really is is a total mind-fuck.
Hey, here's this beautiful baby girl and your only job is to protect her and keep her healthy even though no matter what you do, the disease is going to progress. Also, here's a long list of all the little ways you can fuck up and the test will be graded by your daughter’s health. All that you can do is hope to contain and slow down that process and pray that the scientists and doctors get this thing cured or treated faster than it can degrade her bodily functions.
Because the fluids in Laila’s body are thicker, mucus gathers in the lungs and becomes a breeding ground for infection. The most common one is pseudomonas, a bacteria that is basically anywhere moisture gathers. So it's everywhere and it’s harmless to those of us without CF. However, if a CF patient is exposed to it, it can colonize in the lungs and start the deterioration of those organs’ tissue.
Instantly, Lisa and I became germ freaks. We stopped having people over without a third-degree inquisition on how they felt and where they’ve been and what they've been exposed to, which didn't create the most welcoming environment for company.
We formed a bubble of protection around ourselves to minimize any chances of Laila being exposed to sickness or infection. We had to literally beat on our newborn baby’s back and chest several times a day to keep any mucus from building up. It wasn’t painful from what I could tell, but it was very jarring for her and, quite honestly, I did it through tears many nights terrified at the prospect of screwing up and doing anything to put her at risk. We didn’t go out to restaurants or movies. We stayed away from the park because God knows how many kids with colds were playing out there. We scrubbed everything furiously, washed our hands and sanitized like mad people.
If you did happen to clear the germ police security check and came around for a visit, then you also were slathered with sanitizer and had your shoes removed at the door. It was like TSA, only we were much more vigilant.
My wife's hands are cracked from washing and sanitizing all the equipment that came along with the treatments. We have four different nebulizers and a compression vest that shakes Laila’s lungs two or three times a day, each time taking around 45 minutes—and I haven't even begun to talk enzymes. Laila must take 30 enzymes a day. Every time she eats anything with any fat in it, she needs digestive enzymes to absorb the fats properly. We also load her food with extra fats—butter and cheese. And we can’t forget the salt.
Now, because CFers don't process fats properly, gaining and keeping weight on is a struggle. When Laila was turning four, she hadn't gained weight for many months and we were presented with the option of using a feeding tube to supplement her daily diet by a slow drip of protein shakes directly into the belly while she sleeps.
For a while we struggled trying to avoid the tube, feeling like it was a failure on our part that we couldn't get the job done. When we finally decided it was for the best, we realized how much pressure was put on her meal time and we understood it was time to not only worry about the quantity of her life; quality had to be as important if she was going to enjoy life at all.
I remember when we first got Laila home from the hospital after her feeding tube surgery. My wife and I were sitting in her room staring at the equipment and the button in her belly like, “Who's going to do this?” We were thrown to the wolves. No one had given us a lesson on how to connect or change the tube or told us how much to feed her during the night. A nurse had been scheduled to come to the house but not for several days. We sat and cried out of frustration and we did not tube feed her that night.
The next day, we called the nurse. She was merciful and kind and came right over and showed us the ropes. We can now do this in our sleep and often do as it finishes in the middle of the night. What was terrifying yesterday is today’s routine. I’ll save the story of when we had to actually take the feeding tube out of her belly at home for another day.
We struggled hard with sending Laila to school. We knew she would get sick a lot more often and be at risk of pseudomonas and God knows what else. In the end, we decided she should be the kid she is. CF has already stolen too many things from her—from here on, childhood won't be one of them.
This year Laila turns seven. Her weight is still a struggle and a few of CF’s awesome symptoms are beginning to show their faces. We are still pretty isolated. We go to restaurants occasionally, though we wipe the entire place down when we get there. I’m sure people think we’re nuts.
Laila has struggled emotionally with all the rigors of CF and exhibits anger about it sometimes. There is nothing that has felt worse to me than to be helpless while your little girl just wants to know why she got stuck with the treatments and enzymes and hospital visits and four surgeries by 5 years-old.
Sometimes when I share some of these things online I get a lot of comments about how they don’t know how we do it. The truth is, you would more than likely do what we’ve done. First you freak out, then you start trying to figure out how to raise this child regardless of the circumstances. You’re not a hero for doing what you’re supposed to do.
Some days you really don’t know how you’re going to make it through but you get to work and before long the day is over and you've earned your rest. And you know it.
Nothing I have ever done or will ever do will be more important to me than being a Dad.
