I keep my child at home all winter, to save her life
Written by: Julianne Neely
Photo credit: Flickr/Pink Sherbet Photography
I recently turned down an invitation for my two-year-old daughter and I to join a fun outing, and the hostess was mad. "Aren't you ever going to let her have any fun?" she said. "How is she supposed to learn social skills?"
Yeah, we miss out on a lot of fun things. Yes, I doubt myself and fear I am overreacting. But before you judge me for keeping my child in a bubble, step into my shoes for a moment.
It's Respiratory Syncytial Virus season. RSV infects the lungs and breathing passages, and can lead to pneumonia. My immune-compromised child has already spent enough time in the hospital. Between two heart surgeries, a GI surgery, nine months in the NICU and countless ER visits, we are all pretty over it.
Seeing her NICU clinic doctors, ENT, GI, pediatric surgeon, pulmonary hypertension team, cardiologist, optometrist, occupational therapist, physical therapist, speech therapist, intensive feeding team and developmental therapist seems like enough, thank you.
We really do have to worry about RSV and respiratory illness to the point that we are basically prisoners inside. As any parent to a special-needs child knows, from October to spring we are ordered to limit her exposure to germs as much as possible. We don't do play dates, indoor playgrounds or birthday parties during those months because your kid's sniffle would land us in an ICU with a machine breathing for her so fast it's terrifying.
Here is the thing: She could DIE. Her body is fragile and weak and it can't fight like yours.
We do have fun, but it looks different than the fun you're having. We have a plastic slide in our living room and have even considered installing a swing to the ceiling. We have an endless collection of books and have countless dance parties. We often take all the blankets and pillows in the house to create a giant crash pit, and I even let her jump from the sofa into the big soft pile. We do a lot of splashing in the bathtub and creating art out of shaving cream. We decorate one another with stickers and sometimes even markers, because we don't have anywhere to go.
We order lots of take-out and have become good friends with our UPS driver. Our groceries come in a giant truck and deliver lots of boxes to play in and on, which, from a toddler perspective, is pretty exciting.
We get to spend a lot of time bonding and relaxing. We have plenty of time to just snuggle and be together. Life feels perfectly slow, not rushed or overscheduled.
In the summer we will quicken our pace and head back to the park to see our friends. But for now, we are thankful for a reason to slow down and treasure our time with one another.
Julianne Neely MSW, LCSW, is a business owner, special needs mom, foster-adopt parent and pediatric therapist. Julianne has become the leading expert in pediatric mental health in Chicago, where she owns and manages Individual and Family Connection. At IFC, she has the privilege to manage a team of amazing clinicians who are passionate about working with children and seeing them thrive.
Posted on February 08, 2016 at 9:37 AM