“What happened to Wisa?” “Why is Wisa at the doctor?” “Am I sick too?”
How do you explain your daughter's cystic fibrosis to her 3-year-old brother when you're trying to process it yourself?
In July 2020, 18 months into our parenthood journey with two kids, our rhythm and routine were thrown for a loop, or more precisely, brought to a screeching halt when our youngest child, Louisa, was given her cystic fibrosis diagnosis -- a diagnosis we seemed to have dodged twice before.
Our first brush with a CF diagnosis was during my pregnancy with Louisa. A routine ultrasound found an issue in her bowel, which led to genetic testing and the realization of my own CF carrier status. My husband tested negative for being a carrier, and we were told his negative status could rule out CF for our baby. Louisa was born in good health, with no concerns related to the ultrasound findings; but her newborn screening was flagged for further testing. At 1 month old, she had her first sweat test, which returned a normal result, so we pushed CF from our minds for the second time.
After months of various health concerns we revisited the pulmonologist in July of 2020. Her sweat test values soared and genetic testing confirmed a second rare mutation; there was no question about a diagnosis this time.
Along with shock and devastation, Louisa's diagnosis also came with a Pseudomonas culture. Just two days later, we were suddenly thrown into CF care, doing treatments under sick protocol like chest physical therapy four times per day, nebulizing Albuterol®, Pulmozyme®, and Tobramycin, along with oral antibiotics and enzymes.
Louisa's initial care regimen suddenly took up three hours of our day; how were we to manage her care, our full-time jobs, and the needs of our son?
While Louisa's health was our top priority, so were the feelings and needs of our sensitive 3-year-old son, Theo. Theo is observant and inquisitive, so explaining our new normal to him in an age-appropriate manner was daunting.
“Louisa's lungs are different than ours, so they need some extra help to stay healthy.”
“Enzymes help her belly feel better when she eats and will help her grow big and strong like you.” “Visiting the doctor is an important part of keeping her healthy.”
These are some of the things we told him, hoping his young mind could process the new needs of his sister.
Within days of the diagnosis we were gifted a book, “Our Baby Has 65 Roses,” written by a mother in Ireland. It tells the story of a baby sister born with CF through the eyes of her big brother. While I've never managed to read it without crying, it's been a remarkable tool and has helped Theo make correlations between the story and our life at home. He's even noted that the baby in the book doesn't have a vest, so she bounces on a ball to exercise her lungs!
After a couple months and the establishment of a healthy treatment protocol, the initial heaviness of her diagnosis began to ease, and life seemed to normalize. Louisa's health turned around in a rapid way and Theo has become a great little helper. He loves to help plug in her vest tubing and turn the machine on. He playfully pretends to throw her enzymes across the room making her laugh and take them with ease.
It isn't always easy though. If you've ever had a 3-year-old, you know it's a tough age and emotions are big. When the emotions and behavior feel out of control for Theo we've found success in separating the kids during treatment time a few days a week. By alternating mom/dad time with both kids, that one-on-one time really helps them each feel seen and heard, and it keeps those big feelings at bay when Louisa's extra needs can upset Theo.
While no expertise can be claimed in six short months of being a CF caregiver life; one-on-one time, answering questions in an honest, but age-appropriate manner, and talking about CF openly has worked for us thus far.
I don't doubt the many challenging questions and conversations we'll face with both kids in the years ahead, but we're taking it one day at a time for now.
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