This is a guest post from one of our parent dermbassadors Julie. Her daughter Mia has scleroderma.
Fear, heartache, worry, isolation, sadness: all of these feelings and questions about the future come with a new diagnosis or treatment. Our instinct is to just smile and tell our kids it will be ok—that they will be fine.
And we mean it. We do everything we can to not let on about our own worry and fears. We listen to their fears and try to console and reassure them, in part to help ourselves feel better. If they are ok, then we are ok, too.
But what if we walk through all of the feelings with them? In addressing it head on, we can help them find their voice and a comfortable place to be until they can do it alone.
Here is what I have learned by walking through the diagnosis and treatment process with my own daughter:
- Listen without trying to fix it, and hear their fears and her worries. We don’t want our kids to cry through an entire appointment or treatment, but maybe they need to until they understand that they are strong enough to get through it. Be willing to say, “you’re right, it’s not fair and it is hard.”
- Let them be as private as they want about their condition. Together, come up with a standard answer to give to people who ask questions, allowing your child to share as much or as little about her skin condition as your kiddo wants. Be ready to jump in as their voice; be ready to protect them from people who aren’t satisfied with a short simple answer. Talk with parents of their close friends privately, so they can help their kids understand what their best friend is going through and how treatments may change your child’s appearance.
- Help them find their way with their appearance. Be enthusiastic about requests to try new makeup or new hats, and do try something new with them. When our daughter wanted to try to concealer, we were all in and helped her to explore it, but we were as quick to abandon it when she decided it wasn’t for her. She is perfect, so there is nothing to “fix.”
- Be honest when they ask you about their appearance. We tell our daughter: you are beautiful and unique. You have so many things to offer. Yes, your skin has changed but you haven’t changed to us and to those who love you. You are still our beautiful Mia inside and out.
Then… invite the positivity in.
- You may be an introvert (like me) and not want to go to a group event and meet other families or children who are struggling, but you should go! Warm faces with more experience show you there is light on the other side. It will be your greatest sense of comfort and support.
- Accept offers for help for your child such as going to camp, putting accommodations into place at school, or talking with an older child or adult with the same condition.
- Let siblings participate in family days or experiences that help them understand your child’s condition, and in the process, they will become more compassionate people and look beyond outward appearances.
- Encourage your child to advocate for themselves and be their own voice when they are ready. They can offer hope to someone starting the process.
And when you are ready, open up and share your story as a parent. It is not easy or perfect, but eventually, a new skin condition fades into the background and it is not the most prominent thing in your child’s life. They are a sister, a friend, a student, an athlete, and so much more.
Getting your child to comply with wet wraps can feel like can be a battle! Which if you think about it, is a little ironic, because by administering wet wraps you are helping your child’s suit of armor, their skin defends itself against the outside world! So let us talk strategy, determine some “weapons” for your arsenal, and let’s realign so that you and your child can go from enemies to allies.
When we feel overwhelmed or stressed, it can be tempting to tell ourselves (or each other!) Just relax, calm down! When we are stressed or freaking out, that is easier said than done. That’s why preparing a “coping tool kit,” a set of strategies for dealing with stress can be really powerful.
Do you freak out when you break out? I know I have! It is natural when we have a break-out to look in the mirror and think things like “These pimples are gross!” “I hate my skin!” “Things are never going to get any better!” Even though it is natural we think this way, it is harmful too.
Stop picking, popping, poking your pimples!
I know, it’s sort of like eating the whole bag of potato chips…we all know we aren’t supposed to do it, and yet, the temptation is SO STRONG! So…how do you stop?
Start with choosing an alternative activity!
We had so much fun at our first annual Heart + Sole Walk and Back To School Family festival! We want to thank all of our sponsors and everyone who came out to support our mission to make the world a more kind and understanding place for those with skin conditions.
As a Child Life Specialist working with teens and kids who have special skin, there is one question I get A LOT. “How do I talk to my teenager, when they tell me they don’t like how they look?” Parents are so worried that they will say the “wrong thing.” And truthfully, I have spent …
We had an amazing time celebrating the launch of our brand new SKIN DISCOVERY BOXES, a very special collaboration with our friends at CeraVe! CeraVe’s tireless pursuit of therapeutic skincare for all is truly more than skin deep and we couldn’t be more thankful. We celebrated in style thanks to our friends at Star Cinema …
A Children’s House for the Soul believes that it takes a village to support a child and family impacted by skin disease and birthmarks and that we are all better together.
Open House and Ribbon Cutting/Bring A Children’s House Home: On June 5th we began a very exciting new chapter of our A Children’s House story in the form of opening up our new beautiful space to serve children and teenagers with skin conditions and birthmarks and their families. This space includes a salon, a library & craft space, a teen room, and more! We also debuted our incredible new custom mural from up and coming local artist Eli Pallaert.
Our Family Trivia night was oh so much fun, and a huge success! We had so much fun getting to reconnect with all our friends and enjoy some laughs while snacking out on pizza and snowcones!
In honor of Vascular Birthmark Awareness Month, our childlife specialist Lindsay O’Sullivan had a great conversation with Jose about growing up with his special masterpiece skin!
In this interview, Ally shares about her experiences growing up with Ichthyosis. Ally shares how: Meeting other kids with special skin can help kids to feel less isolated and give them a very special sense of comradery and understanding. Parents don’t have to do everything perfectly to be the perfect parent for their child and …
What a wonderful time to relax, enjoy friendly company, and share their hearts on being a mama to a kiddo or teen with special skin. It was truly so special! These mamas were made a masterpiece!
Vascular birthmarks are very common in children. These birthmarks are made of blood vessels in the skin and can occur anywhere on the body. They may be pink or red in color, blue or purplish, flat or raised. Since they are vascular, sometimes they will feel warm to touch and may change in color with …
We have some exciting updates about our Capital Campaign! Learn about our short and long term plans for our own space.
You Can’t Teach What Has No History “This is how much God loved the world: He gave his Son, his one and only Son. And this is why: so that no one need be destroyed; by believing in him, anyone can have a whole and lasting life. God didn’t go to all the trouble of …
In honor of Ectodermal Dysplasia Awareness month in February, we sat down with two of our dearest friends Zach and his mama Susan! Zach is an avid golfer, an Aggie, and is affected by Ectodermal Dysplasia. Susan and Zach teach us about ED and the importance of finding community. They also had helpful tips and …
Join us for a fun and inspiring interview with this incredible lady Ana Maria! Ana Maria Triana is 15 years old and the author of How to Conquer Alopecia Universalis. Ana Maria gives heartfelt advice, shares wisdom beyond her years, and will leave you feeling full of compassion and confidence. A Children’s House for the …
In honor of the upcoming National Epidermolysis Bullosa (EB) Awareness week, we wanted to share this great piece from our friend, Rachael Wrobel about how her mama mothered her well, even despite the challenges of EB.
I am fortunate enough to be Mama to three little girls. Shortly after my eldest daughter’s first birthday (about 4 years ago) I noticed her hair was thinning. I was told by many it was just typical baby hair loss until it just couldn’t be described at “typical” any longer.