My name is Amy. I could give you the typical intro; I'm a 30 year old mother of two, twice married, aspiring artist and semi-reformed hell raiser whose family falls delightfully outside the societal norms, etc, etc. But I'd rather get down to brass tacks. I spent most of my life narrowly sidestepping real personal heartache. I consider myself tough, and have had plenty of 'hard times', but usually squeak through on dumb luck and bull-headed, teeth grinding stubbornness. I've never really had to face any heartbreak I didn't bring on myself. I always felt a little guilty for my good fortune, I've frequently told my husband "nobody gets what we have, nobody gets to be this happy". And in spite of everything, I still feel that way.
A little back story...a near tragedy in the family led my husband and I to realize that nothing is guaranteed, and we weren't going to wait any longer to have children. "Life is too short!" After a perfectly normal pregnancy with all the normal annoyances, we had a shockingly beautiful baby boy on March 11, 2010. We were beside ourselves with joy, and set out toward a life as a family of four. I asked my husband (who I knew wanted more kids) "so, whenever I say I want another one, we'll just do this again??" We knew we'd at least have to wait until he found a job. A recent grad of Fire Academy and Paramedic school. That meant that against our fiscally conservative (fiscally only) views, this little guy had been born into the medicaid system.
We hate going to the Medicaid Pediatrician office. I mean don't get me wrong we're appreciative of the care, but there are a lot of people there who aren't so much.
Unkempt runny nosed children fill the waiting room while we hover in the corner sheltering our newborn son behind layers of blankets and a well-guarded car seat carrier. Jackson had a little more than normal jaundice and so we were making weekly trips there to monitor his bilirubin levels. Two days before his last appointment I got a phone call from the office- not the automated appointment confirmation system, a "it's critical that you return our call today" call. Determined not to panic at the unusual message, I called back. I was patched through directly to the Doctor herself. She informed me in her thick Latin accent that Jackson had tested positive for one of his screenings at the hospital and we needed to see a specialist to rule out a problem and they would be calling me shortly. I pushed down the lump in my throat and assured myself it was a false result. I mean, when I went to planned parenthood I once tested positive for Cervical CANCER, because they left my pap slide exposed to the air too long and it damaged the cells. So surely this was some sort of mistake in the over-taxed public health care system...right?
It didn't take long for the Pulmonologists office to call. About 15 minutes if I recall correctly. I tried to hold on to my 'office voice' (poised, professional, and polite) and not let it crack as she informed me that after the initial test had shown elevated IRT levels- the initial indicator of CF, that they had done DNA testing and discovered two gene mutations indicative of Cystic Fibrosis. In my heart pounding panic and attempts to stay calm I didn't hear that as a definite diagnosis. But I did get that it was serious enough that we would be sitting in the Pulmonology clinic at Cook Children's in the next three hours. I barely had time to wash my hair before we had to get out the door. I had to call my ex husband to pick up my 7 year old at school and take her to softball practice. My brain went into serious denial mode and began to catalogue every reason this couldn't be possible. Cystic Fibrosis is genetic- you can't get it unless both of your parents are carriers. Mike and I have no family history, and we both come from big families- someone would have turned up with it by now. It just has to be a mistake, and when they figure it out we'll go home and make a drink and toast to the scariest misunderstanding of our lives and be thankful for a healthy baby. Yeah, I would be making time for a cocktail after this.
The thing about children's hospitals is this: they're awful and wonderful all at once. Candy colored puzzle pattern hallways can't disguise the fact that they are hospital hallways, and that the parents who have walked these halls before me shared the same feeling of being sucker punched with razor edged brass knuckles. the elevators are a rising and falling collection of tragedies, families rolling their babies in and out, some with problems I can't even stomach thinking about. A child of maybe four is rolled by in her wheelchair by her father, and for that family it's business as usual as her head lolls off to the side and a greeting nurse dabs the drool off of her cheek as we pass by. "Stop whining and feeling sorry for yourself, look what they have to deal with"
Before I can get through the first two pages of the thick patient info packet in the waiting room we are ushered downstairs to radiology, where nobody second guesses my tear smacked, red face and the nurses greet my tiny son by name as we prep him for chest x rays. Other than his distinct objection to being stripped naked and cold, he isn't phased by the process. Two nurses hold his arms and legs and position him as Mike and I are ushered out the door to avoid unnecessary exposure. The x rays are over quickly and we thank everyone on our way back up to Pulmonology. There's no waiting there either and a little pang enters my heart in the CF clinic as I feel pain for the parents whose lot it is to bring their children here regularly. We make a pit stop for the vital signs check just past the front desk. Jackson is just too tiny still to get a reading from the infant BP cuff on his leg, so me move on to weight and I'm suddenly more afraid and confused as the nurse reports that he weighs only 7 lb, 7 oz. He's lost 1/2 lb in the last week, and is now back below his birth weight. Somewhere in the dark places in the back of my head there's a siren and a red light flashing that I'd REALLY like to run from. My husband, Mother in law, and I file into a patient room and are told that the Doctor will be in shortly, and then the dietician, then the social worker, then the CF coordinator and the nurses...I can't help thinking they sure are going to a lot of wasted effort just to rule out a problem we don't have. Is it OK if a Med student sits in on this one? Sure. Another body in the room. My father in law arrives from Dallas, another body in the room. Doctor, Nurse, student, Mom, Dad, Mike, myself, and a tech doing a sweat test on my sleepy newborn in his white fleece blanket, all in a clown car patient room.
I don't really know what the hell order things happened in in the next few minutes. The bow-tied doctor began to talk to my Mother in law and they were using doctor words...I'm certainly not dumb but I'm also not a trained medical professional. I heard somewhere in the conversation for the first time the term 'deltaf508'. The doctor was looking at me as he talked. I tried desperately to get outside of my own body as the atmosphere was sucked out of the room and every one's faces smooshed into unreal shapes. It took me a while to realize I wasn't yelling. It took me a while to realize everyone was sobbing. It took me a while to realize that I couldn't rationalize the moment and I couldn't look at it from the outside and recount "stages of grief" to assess what I was going through. But I would do anything to get out of that moment, so I kept trying to be a third party. My son, my brand new baby who had only shed his umbilical stump less than a week ago, who had never slept through the night, who had only had two real baths in his lifetime....my son was sick. He has a disease, and it won't go away. People die from it, many as children. My son, who slept through his sweat test as all this happened. My son.
I'm not going to share the remainder of this moment. It's too personal, too raw, and I share it with others who may not be as enthusiastic as I am about letting the public in on it. There were parts of it that I will spend the rest of my life trying to forget. They don't get to go in print.
We moved on to discuss a plan of action, and in turn met with the social worker, dietician, program coordinator, respiratory therapists, and nurses. We learned the ins and outs of the disease, put together a treatment plan, and listened to a LOT of information. I can't say enough for the entire staff at Cooks. They're unbelievable and somehow managed to be the straight man as we cried though the day without seeming like assholes. They were treating our son and making sure we were taken care of too. I'm glad we have them. They made a binder with Jackson's name on it, filled with his treatment plan, a staff directory,and a book outlining his disease for us to get familiar with. We were supplied with multiple sets of fresh nebulizer cups for when he begins to need breathing treatments, and prescriptions. I'll tell you about the prescriptions later, when we get to the breakdown of what Cystic Fibrosis is and how you treat it. I have a lot to say but can only do a little at a time right now.
This was day one. Since then I've oscillated between disbelief, hope, and soul- crushing despair. There have been a million times I tried to grasp "this is your life now". I've gone about the day to day. I've worried about how this will affect my older daughter. I've thrown myself headlong into fundraising for CF research. I've spent quiet moments before dawn singing softly to my baby like any mother new mom. I've fought off fear and desperation and been inspired beyond expression by the empathy and real desire to help that has been heaped on us by our loved ones and strangers alike. I remember the social worker telling me that it was okay to be overwhelmed, that in time, this would become the new 'normal'. I found that strangely comforting and also bizarre. We're not even close to feeling 'normal
yet, but knowing that it won't always hurt so goddamned much is nice.
I'm not sharing any of this because I need a response, or comfort, or pity. As a matter of fact I'd like to ask that pity be left at the doorstep because it's my least favorite emotion. I know that I can handle this, I'm not sharing the story looking for sympathy. I'm sharing the story as a real look at how it was and how it is to live with a chronically ill child. I know people are curious and I don't mind being forthcoming and honest. But I need you to treat it more like National Geographic and less like The Notebook, if you don't mind. I have a lot more to share just to begin with, but somehow putting it into words is physically exhausting. For now I'm going to crawl back in bed with my husband and cuddle my baby and pretend like there's nothing else in the world. I'll be back with CF 101 later.