The former House of Pain frontman on a complicated fatherhood.”>
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 constructing records when I was 17 with Ice T . By 21, I had my first real savor of success with a band called House of Pain. At 28, I released my greatest record to date right after I suffered a torn aortic valve and had to have a lifesaving valve replacing surgery.( I now have a titanium valve so Im 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.
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 bear with Cystic Fibrosis. I received this out when the obstetrician called saying how sorry he was and how awfully he feltwithout his realizing that the hospital had not yet called to tell me. So being on the spot and having me ready to jumping through the phone, he broke the news. I recollect supposing, Ive heard of that, but having no clue at all what cystic fibrosis was, so I immediately Googled it.
I recollect the numb feeling that washed over me as I read about all the complications( diabetes and lung grafts) and the life expectancy( 30 years, if you were lucky ). I recollect supposing, Am I seriously contemplating my newborns mortality right now?
How was I going to tell my wife? What terms do I use to tell her that the 3 week-old newborn shes completely in love with has this life-threatening genetic disease? What I didnt understand was she already knew something was very wrong. She felt it in her intestine. When Laila was born she couldn’t eat. She had some sort of blockage( meconium) that was actually common to Cystic Fibrosis, which Ill 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 told, my wife knew something wasn’t right. A genetics test was done at the hospital in which they rubbed Lailas heel and used the DNA to test for all kinds of ailments. 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 are able to savor 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 ordinarily 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 tubings, ducts and passageways, especially in the lungs and pancreas.
That’s the Mayo Clinics short definition of CF. But what it really is is a total mind-fuck.
Hey, here’s this beautiful newborn daughter and your only chore is to protect her and maintain 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 styles you are able to fuck up and the test will be graded by your daughters 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 Lailas body are thicker, mucus meets in the lungs and becomes a breeding ground for infection. The most common one is pseudomonas, a bacteria that is basically anywhere moisture meets. So it’s everywhere and its 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 theyve been and what they’ve been exposed to, which didn’t make the most greeting surrounding 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 babys back and chest several times a day to keep any mucus from building up. It wasnt painful from what I could tell, but it was very jarring for her and, quite honestly, I did it through tears many nights scared at the prospect of bolt up and doing anything to put her at risk. We didnt go out to restaurants or movies. We bided away from the park because God knows how many kids with colds were playing out there. We scrubbed everything furiously, rinsed our hands and sanitized like mad people.
If you did happen to clear the germ police security check and went around for a visit, then you also were slathered with sanitizer and “ve had your” shoes removed at the door. It was like TSA, merely we were much more vigilant.