Sharing My Son’s Eczema Story Is Like Opening My Heart

My name is Maisie, and I live in Alpharetta, Georgia, about 45 minutes from where my sons Jeremy and Joshua attend Georgia Tech University.

Facing the challenges of eczema in young children

Within months of Jeremy’s birth, we knew he had eczema. Our older son, Joshua, was two and a half years old at the time, and he was barely healing from his own eczema when Jeremy was born, and the process started all over again: eczema, food allergies and asthma. As babies, both boys had eczema break outs all over their faces, which kept them from sleeping at night because they were itching and scratching so much.

The boys were born in the San Francisco Bay Area and I remember how bad Jeremy’s asthma got during the wildfire seasons; they landed him in the ER multiple times. When Jeremy was barely 5, we moved to Shanghai, China for three years, and when we moved back to the United States, when Jeremy was about 8, his eczema got really bad again.

We saw dermatologist after dermatologist and had tried everything. “Done this, done that, tried everything.” I wanted to say to them: ‘Tell me something that I don’t already know!”

Every family faces different challenges with eczema

Eczema took away a lot of sleep during those early years. Other parents said we should try sleep training, but I realized after three or four nights of failed sleep training that Jeremy wasn’t sleeping because he was miserable, itching and scratching. As Jeremy got older, I was told I was “coddling” him too much, that I did too much for him. What they didn’t realize was that “normal” activities like taking a shower isn’t a quick 5 minutes, it’s an ordeal, taking 45 minutes because he has to apply medicated creams, then lotion, and stand there while they dry before getting dressed. So, with a lot of parenting advice (solicited or not), we just had to throw out the door. And it’s important for parents to be okay with that. With eczema in particular, the norms didn’t apply.

Yes, there were things I wish I had done differently. But much later in life, I realize we parents do the best we can with what we know at the time. We can’t feel bad about it. We have to let that go. Parents carry too much guilt as it is. We don’t need to pile more on. It’s hard not to, but we can’t keep questioning our decisions and stay sane!

When Jeremy got to high school, I tried to take a step back, so he could learn to become more independent. I did, though, push him to build relationships with his high school counselor, his soccer coach and his basketball coach, who had coached him since fifth grade, so that he had support at school when he needed it. I was fortunate that his friends and the parents of his friends were watching out for him, too. They felt safe texting me to let me know when Jeremy was having a really bad day so we could intervene and cheer him up.

Getting educational support from the school administration

Jeremy didn’t like to talk about his eczema much. When it got really bad, and Jeremy was missing school, I emailed his teachers and let them know. If the kids can’t do it themselves, the parents can help build a trusted support network. Eczema is not considered a disability, but we were able to set up a 504 plan for him—an official school plan to give him extra support—because he was missing so much school already.

Traditionally, when I’ve heard other parents talk about it, the 504 plan is usually for kids that need extra time taking tests, or whatever their individual need is. When things were at their worst for Jeremy, one of his teachers said, “let’s look into doing a 504 plan for Jeremy.” The 504 plan gave Jeremy the ability to leave class when he needed to, for example, to go to the clinic and wet wrap (multiple times a day). We’re so fortunate we had an open line of communication with his teachers, coaches, nurses and school support staff: everyone helped.

Through all the struggle and pain, I’ve tried to shield Jeremy from my emotions because I didn’t want him to know I was upset. I’ve cried in the closet many times. But I also learned that Jeremy didn’t want to worry me and felt very bad thinking he was the cause of my being upset. Mental  health is a very real challenge for our kids. And with eczema, it’s even more compounded. The eczema is visible but the emotionally wounds are often hidden. There isn’t much awareness of the emotional toll eczema has.

It’s been a very long roller coaster journey with eczema. Jeremy is now a rising sophomore in college. With the help of new meds and a consistent self-care routine, Jeremy is managing his eczema well (he finally owned his self-care only after seeing results when he takes care of himself). The journey with Jeremy and eczema, while definitely challenging, grew me as a parent. Now I know the meaning of “it takes a village” to raise kids. We are ever so grateful for our village; the heroes and angels watching over Jeremy. Family, friends, faith. Coaches, school counselors and teachers, our medical support team. Indeed, it takes a village.

Author Maisie Wong-Paredes is a NEA Ambassador. Learn more and join NEA Ambassadors.

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