Big Kid Ethan's Continued Journey
by Christine Cerrato
Just a little over a year ago, I wrote the blog post Big Kids, Big Needs, Big ONE about my son Ethan and his complex diapering needs due to his physical limitations. When I wrote that blog, I couldn’t have imagined where he would be just one year later.
Ethan was born with a very large tumor in his pelvis that caused catastrophic damage to all of the organs and nerves involved in going potty. For his entire life, he has depended upon alternative methods of voiding- like a colostomy,vesicostomy, and nephrostomy tubes.
At the beginning of September, all of that changed.
Ethan had a marathon surgery that was over ten hours long to not only address issues from all of his previous surgeries, but to create a more sustainable pottying future for him. At the age of 5, Ethan was acutely aware that his preschool friends were using the toilet while he still relied on diapers. His classmates never made him feel excluded, but it became clear that he was ready to take the next step.
Ethan is now 4 weeks into recovering from having both a Malone and Mitrofanoff surgically created. The last four weeks have been full of doctors appointments, complications, and diaper changes. So. Very. Many. Diaper. Changes.
You see, while the body is recovering from the Malone surgery, there is a lot of poop. His body doesn’t know how to regulate stool coming from his bottom because it’s never done it before. While his body learns what to do, we have to learn how to take care of his skin when it’s constantly exposed to acids that his body is producing.
At first, I was absolutely certain that I could cloth diaper as normal. It was almost immediately apparent that I was utterly incorrect. During this process, Ethan has SIX tubes inside of his body keeping pressure off of delicate structures as they heal and grow stronger. We have to manage each of those tubes in a different way, sometimes just keeping them clean, other tubes need daily flushing while still more tubes have to stay capped. In addition to those tubes that need to be managed, his diaper rash requires creams and ointments that are anything but cloth diaper safe. Additionally, changing 24+ diapers each day while homeschooling two children and assisting two remote learners, staying on top of washing the diapers was just too much to take on.
It was hard for us to make the switch to disposables during this season of his life, but we knew it was best for him and best for us. As parents and caretakers of these amazing young people, many of us hold ourselves to unrealistically high standards. I’m a cloth diapering mom. I’ve been a cloth diapering mom for nearly 13 years. How could I possibly let go of that piece of my core parenting values and still feel good about myself?
Once Ethan’s healing process is complete, we plan to return to using our Big ONES for overnights since he will need to have his bladder emptying overnight via his Mitrofanoff and catheter tubing for many years to come. Ethan’s path to using the potty has been vastly different than what we envisioned, but I am so grateful that GroVia has been with us these last five years, keeping him dry and comfortable every step of the way. Lucky for us, Grovia makes so many products that are still incredibly useful long after diapering is no longer necessary. I can’t wait to see Ethans adorable tushy in his very first pair of Unders!
Christine is a 30-something mother of four and a bonus niece living a different kind of dream next to the Rocky Mountains. She is a strong advocate for access to
resources in the world of pediatric healthcare and behavioral services. Her family of seven can often be found singing along in the car to a Broadway soundtrack and creating fan theories for their favorite Marvel movies. Christine has been cloth diapering with GroVia for over ten years and has been a Content Creator for nearly a year! Follow her on Instagram: cdabondi84