In observance of Mother’s Day, we connected with our community of NEA Moms to hear their stories about raising children with eczema.
Our ecz-perts include: NEA Ambassador Aisha Bryant, whose four-year-old daughter was diagnosed with eczema when she was six months old; NEA Board member Amy Chrnelich, whose six-year-old daughter was diagnosed when she was three weeks old; NEA Board member Lynell Doyle; and NEA community members Christine Cutaran, Kacey Jenkins and Christine Scott.
What do you wish more parents knew about raising children with eczema?
Lynell Doyle: I wish they knew that this is a chronic disease that reaches into every aspect of your child’s life. Also, most importantly, you as a parent will get tired, and it’s important to rest and rejuvenate because you can’t help your child if you’re running on empty.
Kacey Jenkins: Raising a child with eczema is like going on a trip. Along the way, you have to stop at different locations that weren’t planned or maybe weren’t even on your route, but you do your thing and get back in the car and start driving again. You take familiar roads and visit familiar faces, but sometimes you have to detour. I know that sounds cheesy but that’s how I think of it.
Aisha Bryant: Be patient. Be kind to yourself. Do your research. No one knows your child better than you do, and most importantly please, please advocate for your child.
What do you wish more children knew about eczema?
Christine Cutaran: For children who are not directly affected by eczema, I wish they knew that it can be more than a small rash. It can cause pain and hurt in several different ways. It’s important for other kids to be kind and to see children with eczema as so much more than their condition. For children who have eczema, I wish they knew just how special they are! They have a special superpower strength to go through the ups and downs of life with eczema.
Aisha Bryant: I really wish more families and friends understood that there really is no cure for eczema and that the smallest thing can trigger a flare.
What is your first course of treatment in managing your child’s flares?
Lynell Doyle: My first course of treatment for my son’s flares has evolved over the past decade. Initially, it was topical steroids per his doctor’s request. Later, it became mainly moisturizers when we felt like the topic steroids were doing more harm than good. Now that he’s on the Aron Regimen, we go directly for that method of treatment.
Kacey Jenkins: If I see a flare, I always do a mental recap of where my daughter’s been and what she ate to try and find a trigger. I always include her in those conversations so she can be aware of possible triggers. She’s her own best advocate.
What is your superpower as a caregiver for a child with eczema?
Amy Chrnelich: My daughter and I have a shared superpower we call “Light Vision.” It’s our ability to see light through darkness. It started as a simple game we’d play when her eczema was particularly bad and her suffering was bringing endless dark days. We’d say, “let’s find the light today!” It might be a perfectly timed rainbow, birds chirping in the morning, a cool cloud formation or a funny memory of something silly her sisters did that made her laugh. It reminds us that there is always hope, always light, even in the darkness. You just need to use your superpower to find it
Kacey Jenkins: I don’t think I have any superpowers, but if I do have anything extra or special it’s because of my daughter. She’s had it the worst and she’s still so happy. She always wants to make others smile or laugh. I also have a sixth sense that helps me know when she’s scratching in her sleep, or about to start scratching, and I can block it with ninja-like skills!
Lynell Doyle: I struggled with this question because on most days, especially bad flare days, I do not feel like I have a superpower at all. I feel like I have done my child a disservice. Amidst all the flares, the disappointment, the general struggle, I have the ability to keep getting up and getting back in the saddle and stay on the mission to find treatments to give my child a better life. It’s not me alone, though: my child is in the saddle with me and he reminds me and directs me back on task and won’t let me give up the faith. So the short answer is faith. I have faith that my child was never meant to spend his life in misery, and that is the superpower “cape” that covers every move I make and everything that I do.
What does your child do to make you laugh together? Any favorite jokes or games
Aisha Bryant: My daughter and I love to play “rock, paper, scissor shoot” together as well knock, knock who’s there.
Kacey Jenkins: Have you met my child? She is a true character. She makes our entire family laugh every day! She loves to make silly faces and change her accent. She loves to sing and make up her own dances. One of her favorite games is playing “train ride” with her Daddy. She stands on the end of our bed and he comes running by making train noises and she has to “catch the train” i.e. jump on his back and go for a ride.
Lynell Doyle: My child likes to bring up past memories where we laughed together about something that happened before, and then we laugh about it again. What’s really hilarious is that we have a really similar sense of humor and we have so many inside jokes.
What do you wish more healthcare providers knew about raising children with eczema?
Justine Scott: I wish more healthcare providers knew how much work it is to troubleshoot life with a child with eczema. Keeping them on task with simple things like sunscreen to counteract the photosensitivity of their skin, long-term courses of antibiotics and topicals, getting them to school when they are exhausted and feeling self-conscious of their red, flaky and itchy skin: it’s so much work.
Amy Chrnelich: I wish more healthcare providers were sensitive to the true lived experience of eczema and how multifaceted this disease is. It’s so easy for healthcare providers to see a child’s broken skin and focus solely on that. But it takes someone with a deep understanding and empathy for the true burden of eczema to recognize that this disease goes so much deeper than what you see on a child’s skin. Beneath that broken skin often lies a child’s broken spirit, a parent’s broken heart, a family’s broken plans and massively exhausted care takers.
What is the best thing about being a parent?
Christine Cutaran: When you become a parent, your responsibility is to care for and teach these little people. But through being an eczema parent, my boys have taught me more about strength, resiliency, determination and finding the good in everything. It’s hard to pick one thing, but I would chalk it up to learning from my kiddos.
Aisha Bryant: The best part about being a parent is the constant hugs and laughs. I love seeing a mini version of myself, too! And I love teaching them new things and getting to experience life through their eyes.
Amy Chrnelich: Where to begin or end with this! Being a mom to my super troop of girls is truly one of the greatest joys of my life. I spent my “pre-mom” days traveling and marveling at the beauty of our country and the world. I thought I had truly seen the most marvelous things in my lifetime. And then I became a mom and saw that there really was no greater beauty than the glimpse of the world through the eyes of your children. Watching my girls grow, discover, explore, endure, triumph, laugh and become their own unique little people is the very best thing about being a parent. Hands down, it’s the most marvelous thing I’ve witnessed in my lifetime.
The post Ask the Ecz-perts: NEA Community Moms appeared first on National Eczema Association.