As I type this first entry, my 2 year old sits vibrating in my lap. He is having his nightly airway clearance treatment, while at the same time taking his nebulized medications. I contemplate where to begin and realize this is a story that needs to start at the beginning, so I will back things up 2 years and 4 months ago.
After trying to get pregnant for a year and a half, and having three IUI treatments in order to finally become pregnant, I got to hold my sweet little boy on August 23, 2011 after 23 hours of labor. Like all new parents, I looked at this perfect little thing I created and knew it was all worth it. That very first day, as he lifted his head and looked around the room, I called him my little Monkey, and as the nickname has stuck with him and still suits him perfectly, that is what I'll call him here.
A few days after we brought Monkey home from the hospital I received a phone call. A nurse told me that several things from his newborn screening had come back elevated. One was about his thyroid, the other, Cystic Fibrosis. She explained that it was likely nothing, the sample had been sent to a different city for analysis, and with it being such a hot summer, she was sure the heat had altered the results. She asked if my husband or I had any family members with Cystic Fibrosis. When I told her we didn't, she was sure everything would be fine after he was re-tested. So, believing everything was fine, I took my week old baby to the hospital for more blood work, came home, and continued to live the glorious, sleep deprived, life of a first time new mommy.
The second phone call things started to get scary. I was told that his thyroid was fine, but Cystic Fibrosis was still coming up as a possible problem. She said another test would have to be done to know for sure. This would be a sweat chloride test and couldn't be done until he was 4 weeks old. She then said that his genetic test showed 2 mutations, and this was not a good sign.
My heart sank.
I didn't even really know what Cystic Fibrosis was, but the idea that something could be wrong with my perfect little Monkey made my blood turn to ice. It felt like some horrible nightmare that I couldn't wake up from.
The next few weeks were a haze. I researched Cystic Fibrosis and prayed to anyone out there who might be listening that it was all a horrible mistake, that my perfect baby would prove to be as healthy as he seemed. After learning that CF made people's skin salty because they didn't reabsorb the salt from their sweat, I began regularly licking his tiny forehead to see if I could taste any traces of salt. The weeks leading up to his sweat chloride test were filled with worry and fear.
I will never forget one night shortly before he was 4 weeks old, when there was little on my mind other than the fear of what the sweat chloride test would reveal. I was up in the middle of the night feeding Monkey and watching tv. I was watching one of those tattoo shows, Miami Ink, or something similar. Halfway through the show, it began to tell the story of a man who was getting a memorial tattoo for his son. His son had had Cystic Fibrosis, and had died at the age of 20. I clutched my sweet, perfect boy tight to my body and sobbed. I knew in my gut, that the universe was telling me something. I held Monkey close, rocked back and forth, and cried quietly for the rest of the night.