While I don't remember a lot of details surrounding the first few months of Caleb's life, there are a few events that are etched into my memory with perfect clarity. Touching on those moments can bring up vivid recollections and strong emotions, both positive and negative. I rarely dwell on those moments because in reliving them, I am pulled into an emotional vortex from which it is difficult to recover. I love to tell "our story" but there are parts I still skip because the emotion is just too raw.
One of these moments is the day of Caleb's sweat test. The sweat test is just that - a test of how much salt is in a person's sweat. This is the hallmark test for CF and it was the most reliable diagnostic tool for decades before the identification of genes that cause CF. It is still valuable information in that a person's sweat chloride level can somewhat predict the severity of the CF. This is a gross over-simplification, but it is my understanding that in general, the higher the number, the more severe the CF symptoms.
Caleb's sweat test took place when he was four weeks old in the lab at Egleston, a children's hospital in Atlanta. I think my mom was there with me, but to be honest, I'm not really sure. I do remember the terror I felt, not knowing what the test would entail, wondering what the results would be, clueless as to how to raise a child I might someday have to bury. I remember the nurses had to repeat instructions to me. I remember my body still ached from recent birth. I remember the hum of the fluorescent lights and praying to God the scream that was stuck in my throat didn't escape. I watched the nurses wrap my newborn in blanket after blanket, his little face turning red as he started to sweat. I remember wanting to cry but being afraid to let the tears come. I was afraid they would never stop.
Results showed Caleb's sweat chloride levels at just below the clinical range. I clung to these numbers as proof that he would be ok. He would be healthy. He would live a long and full life. These numbers formed the foundation of what would become a carefully-constructed narrative I lived by in the coming months. At times I felt like my grip on sanity was tenuous at best. But as time went by and we more fully educated ourselves about the exciting developments in the world of CF, hope reappeared. Life went on. We fully embraced our new "normal" and found that even though so much had changed, so much could still be the same. We found ways of making meaningful contributions to the search for a cure, and we learned how to turn our fear into relevant action.
Tomorrow morning we are repeating Caleb's sweat test. Best practice is to repeat the test after six months of age; apparently results in early infancy can be inaccurate. We know that Caleb has CF because of the results of genetic testing. That fact is not in question. But it feels like the foundation of my hopeful outlook is being threatened and that terrifies me. Whatever the results, we will deal with it and move on. Lord willing, the numbers will be lower than before.
I am reminded how quickly life can change, and how the results of a single test can turn your life inside-out. I am remembering a lot of things I would much rather forget. I need strength for the day. I need your prayers. Please remember us tomorrow morning.