Advocacy isn't as hard as you think: here's how I make a difference in people's lives by sharing my story with politicians.
Published On: Oct 23, 2020
Last Updated On: Nov 4, 2020
My daughter, Adelaide, was 2 weeks old when I first took her to the pediatrician because of her skin. “Why is my baby all red?”
The pediatrician assured me it was only baby acne. But my maternal instinct told me there was something more. I was persistent and found another pediatrician that referred us to a pediatric dermatologist.
Adelaide’s angry rash was rapidly spreading. At 3 months old, she was officially diagnosed with nummular eczema and atopic dermatitis from head to toe.
My husband, Caleb, and I were first-time parents and completely overwhelmed. We were prepared for losing sleep as new parents, but we were not prepared for the lack of sleep that comes with eczema.
By 5 months old, Adelaide could Houdini her way out of every eczema sleeve, glove and sleep sack on the market — or anything we could sew.
Leaving her alone in the crib to sleep would inevitably end in bloody scratches. She was too uncomfortable to sleep. Her clothes would stick to her from all the ooze, and she did not sleep well unless she was held.
For months, Caleb and I took shifts staying awake to comfort her through the night. Sleep shifts took a toll on us.
The sleep schedule was like having a newborn, except that stage never ends. Then, my superhero of a mom quit her job to move in with us to take a shift.
It was the first time I consciously realized it was OK to ask for help in big ways. We needed a support system that understood eczema and how to help. I am forever grateful that our family and friends were more than willing to walk alongside us.
Since her diagnosis, we have become Adelaide’s eczema advocates. We switched our laundry and cleaning supplies to a company called Branch Basics, clothing to cotton, removed all the carpet in our home and adjusted her diet with an allergist. We spent a small fortune on lotions and creams in trial and error.
Everyone approaches healing eczema differently. Finding natural therapies to help with healing and sleep is important to me. Adelaide has great doctors that prescribe medication as needed, but I wanted to find things we could safely utilize daily.
Apple cider vinegar baths impede infections when she flares, gut healing is working from the inside out, and wet wrapping after daily, short baths strengthen her moisture barrier.
At first, I was totally put off by the concept of wet wrapping. It felt bizarre to put wet clothes on her. It is not a pleasant process, but after one time I was a fan. I put ointment and aloe vera straight from the plant under her wet wraps. We go through so many aloe plants, but its soothing effect is worth it.
Adelaide will be 3 years old this year. Her skin is drastically better, but she still has eczema. Do we sleep through the night every night? No. She still scratches, and we combat to keep her completely covered. We know most of her triggers, but does she still flare? Yes.
Now we look at eczema as only a small piece of her life, whereas before, we let it consume our thoughts and words and create tension in our family. Our stress levels were so high. We saw no end in sight and felt heartbroken for our girl. The anxious loop we were in was just fueling the eczema even more.
To move forward we shifted our focus. We say out loud the beautiful things we love and are thankful for about Adelaide. We put energy into relationships, music, painting and enjoying the outdoors (hello, vitamin D!). All those things yield a more restful sleep.
We taught her coping mechanisms like using an ice pack on itchy spots or doing a silly dance to redirect her brain. We think dance parties are always good medicine.
Caleb and I moreover started seeing a therapist to work specifically through the trauma and emotions of what our family has experienced because of eczema.
One of the best, unintentional gifts to come from eczema is Adelaide’s blossoming empathetic heart for others. She has a small understanding of the weight of trauma and disease.
When someone is hurt, she is the first one by their side. She carries Band-Aids to share in her little toddler backpack and prays for sick people. Maybe one day she will be a doctor pioneering new therapies for children like her.
She inspires me to reach out to other eczema warrior parents. I want them to know they are not alone on the itchiest of days when nothing is helping or the taxing nights when you just want to sleep. They are not the only ones fighting to put on lotion through tears or weary in navigating even simple day to day stuff.
Eczema is a disease that you cannot always pinpoint or control. As a parent, giving up that control is not easy. I have learned to find doctors I trust, narrow in on the good that works, be consistent and lean on our support system without guilt.
We chose to speak positivity into Adelaide until it fills her lungs and becomes her own, confident voice. She is stronger than eczema! She is the strongest girl I know.
Jeanne Moss is an eczema parent living in Louisiana.