Rewriting the Story: Searching for the CF Cure

Nadia before and after diagnosis: always smiling and STILL GROWING!

I am not trying to write a sob story.

My goal is to NEVER have to do that. My goal is to rewrite my daughter's story, to give her more time for her exposition, time for the rising action that will allow her to learn more about life and herself in the process, time for experiencing life's conflicts (commonly referred to as milestones and experiences). I want the resolution to be a long time coming; I am not interested in penning her epilogue. My dream is that she'll be around to pen mine.


I can not change the fact that my daughter was born with cystic fibrosis. Nor would I have chosen not to have her here living her life, as I could have done had I known after conception that she was sick. In many ways, I am SO thankful that her disease was such a shock to me. Had I known prior to her conception that her father and I were both carriers of the cf gene, I would have felt it unethical to have a child, though I so wanted another (and I still do; being the oldest of six children makes two of one's own seem lonely, somehow). I am sure that I would have held steadfast to the decision I feel certain that I would have made--to have not terminated my pregnancy had I found out she was ill, but I know I would have questioned my ability to be a mother to a special-needs child. I would have had questions about her possible quality of life.


On the other hand,

Nadia spent almost eighteen months dying in small increments before she was diagnosed.

 Her early childhood was characterized by an appetite that is now legendary--she ate more than her father and I put together at each mealtime, yet was still hungry just ten minutes later. She would grunt and growl between each bite when she still required us to feed her. Her belly was always rock hard and distended like a starving child from a third-world country. She had that hollow look in her eyes. The Christmas before she was diagnosed, she was so teeny, despite all of the eating. She cried nonstop. Her hair was thin. I told my husband that she was going to die. I felt powerless. Once I daignosed her via Googling her symptoms, and after I got over the trauma of attaching the label of a terminal illness to my daughter, I realized that her diagnosis gave us back some control. I also realized that life itself is terminal, so in that sense, she's not that much different than the rest of us.


I was angry, though. I went through a "Why me" stage. I was angry with the state of North Carolina for not testing for cf with the infant "heel prick" they do at birth. I was angry that my gynecologist hadn't explained what it meant to me that I was a carrier for cf (I had discovered this via routine testing when I was pregnant with my son). I was angry that she didn't explain to me the importance of having my husband tested to see if he, too, was a carrier. I was angry that I had forgone the genetic testing on my husband due to monetary concerns. However, I soon realized that had those things occured, I wouldn't have my Nadia. Nothing can make me regret that she is here. She is not misreable. She is happy most days, except for when her brother is pestering or when we don't let her have her way.


Let me tell you how difficult it is to say no to a child with an illness. I want to give her everything she wants. I want to ensure that she never cries. But I know that I also must prepare her to live as normal a life as possible, and the best gift I can give her is one of normalacy. Besides, it is through this every day parenting that we teach our children values and show them how to make their way in the world. It is through this "home education" that we show our kids that we love them, as cliched as that sounds. When I was growing up, I was a good kid, but I didn't have that constant parental attention I craved, the parents who asked me if I had homework or talked to me about my day at school. I want to provide her with that.


The time has not come yet for me to explain many of the details of cf to Nadia. She knows that she is sick and that she has to take medicine. She knows that she has a team of doctors that she visits, doctors that care a lot about her. She understands that she has to be very careful about germs, and she is a better hand-washer than me. She also understands (and loves) that she gets to eat and drink more than the rest of us; she is quick to ask, "Where's my shake?" as soon as she gets home. These protein shakes have helped us get her to just over 30 pounds, a milestone that forever seemed unreachable. When the time comes for Nadia to learn more about her illness and the implications of it, I would like to be able to tell her that it is not so bad. I would like to be able to tell her about all of the great new medical breakthroughs and treatments available to her, including gene replacement therapy.
You can help make this happen by making donations to the Cystic Fibrosis Foundation at http://www.cff.org/. Teams are gearing up nationwide for the annual Great Strides walk. Join a team. Help fundraise. (Visit our team's website to learn more about Nadia and to donate to our efforts). Read about c.f. here so that you know what it is and how it is inherited.

Help us rewrite the story for thousands of children and adults!

Love,
Nadia's Mommy