Tonight I sat outside on our new toy littered deck holding a sleeping Jordan wrapped three deep with blankets to help her soothe her cough. It really wasn’t even so cold tonight, maybe 50. It would have been a perfect night to have had friends over to sit together outside on the deck, in the cool crisp air of a Georgia winter night, drinking a Sweet Water or two. Maybe one day down the road, when getting a babysitter doesn’t feel like such a sacrifice of the precious little time we have with our babies, we will. But not tonight. Tonight it was just Jordan and I. The moon was so big and there were just enough clouds in the sky being lit by it that it never really got completely dark tonight.
As I sat out there under the black outlines of the bear trees I thought about how awful and how wonderful moments like this are. The only thing in the world more heart wrenching than the sound of your baby’s cry is the sound of her cough. The only thing I could do to help head to hold her in the night air. I’m lucky. I’m lucky that a nasty cough is the only ailment my sweet baby suffers from. I’m lucky because I know that in a few days or so this cough will be a distant memory. I’m lucky because while the cough is bothersome at night, during the day Jordan is her usually sweet, happy, silly baby with the occasional cough acting up.
I started thinking about an article I read a long time ago, It was written days after the girls birthday but I’m sure I didn’t read it until a few months later, I will never forget this one mothers words or her pain. She talks about her son, who will never walk or talk or experience the first day of school, and the very few things she can do to comfort him. He was 18 months at the time, that was over a year ago, I wonder if she is still comforting him, or if she had to let him go.
I will always remember her story because when I read it for the first time I had been through a pretty scary situation with my own baby. When Talia was born she tested positive in her newborn screening for Cystic fibrosis. At two weeks old I had to take her for further testing at CHOA. I had to dress her as warmly as possible to promote sweating.
The test they performed was the sweat electrolytes test . It required placing sweat collectors on her tiny arms and legs for several minutes.
They didn’t hurt her but it was far from comfortable. The first several tests were inconclusive because they were unable to collect the required amount of sweat. I was drained. I decided not to go to the internet, I knew enough about this genetic disease to know that I didn’t want my baby to have it. I was scared, and over whelmed. We went back a few weeks later and this time they collected the needed sweat and the results came back negative. I believed all along that it would, but I was scared none the less and sad that my little baby had to have this experience. I understand now that there must be a degree of false positive for all of the real positives will be detected.
I’m lucky, really, really, lucky.
I hope you will read Emily’s words and think about so many of the children who are struggling to see another holiday with their mommy’s and daddy’s. Hopefully you can help a little by donating in honor of them to a research foundation or a hospital this season.