This weekend was so much fun. We moved into a very involved neighborhood and got Sloan out and about for the first time to two neighborhood cookouts. We weighed the risks and decided that since she would be in her stroller 95% of the time, outdoors, and we were going with a posey of protectors in case anybody got too close we would be ok. Everything went off great. Jorde and I were feeling good about our decision to bring her out even though I had anxiety building as we got closer to the crowds. We can’t protect her forever or put her in a bubble and I am not going to sit inside while there is a party happening right across the street. It wasn’t until I took Sloan out of her stroller and was talking to some older ladies about who knows what when one old lady started to get handsy and started to grab for Sloan and said “oh let me hold that sweet thing”.. SIRENS, PANIC BUTTON…. HEEEEEELP!!!! I pulled back real quick and was able to calmly ask her to wash her hands.. at that she got very defensive and pushed herself back in her chair and said “Oh, I see!” I was able to quickly calm myself down in order to explain that Sloan has CF and we have to be very careful with germ exposure. I went on to tell her that if she felt healthy and would wash her hands I would be more than happy to let her hold our baby. You could tell she was embarrassed in her reaction and taken back by my whole presentation. She went in to wash her hands and when she went in I was left with the rest of the women, one was my neighbor that knows our story and she nodded to me that it was OK.
I didn’t think it was… I was just as mortified as that women. I hate embarrassing people, in fact, I go out of my way not to embarrass them and in turn will embarrass myself. I felt the tears coming and my whole body becoming weak. I don’t want to cry.. I don’t want them to know that I am terrified every moment I have her out. I want them to know that we are a normal family with a normal kid but all of a sudden I felt so isolated, so different. My neighbor, I guess, sensed that I was getting emotional and quickly changed the subject so the tears never made it past my eyes and we moved on to a different topic. When the lady came out she told me she had washed up to her elbows but didn’t feel comfortable holding the baby so she just touched her feet and talked to me about CF. I am worried this is going to be everyone’s reaction.. they will then pull back in order to be “ respectful” but really they are doing exactly what I don’t want to have done to my daughter, they are making her different.. fragile. We want people to hold her and love on her (no kisses on the face please) but it takes an understanding of what CF is and who we are to feel comfortable with that. As I was finishing up that conversation my other neighbor came up said,” I just washed up, give me that baby!” and I was happy to do so. Just a little peace of mind knowing I was giving her to someone who recognizes what I need to feel comfortable putting my baby out into the world. I know if she felt the slightest sore throat or cough she would not have asked to hold our everything. Because I know that she cares that much I am comfortable with our baby in her care.
Toughen up…. I don’t know if I will ever be tough enough to have a sick kid. It is heartbreaking and comes with challenges nobody will understand. Playing through the pain is part of being a parent but as the pain gets worse I can only hope that my tolerance gets stronger. Here are some pictures of little miss as of late. She is growing like a weed. She has gone from the 5th percentile to the 20th percentile. We are so proud of her.
