Mental Health Matters: Recognizing Warning Signs and Strategies to Combat Depression in Parents

 

By Rebecca Jones MBA, RN, BSN

Mental wellbeing has been a buzz topic especially since the start of the pandemic, but it has been a huge focus of mine since I was pregnant with my second child. My daughter was diagnosed with a bilateral cleft lip and palate when I was 24 weeks pregnant. I felt as if nothing could have prepared me for that moment. At the time of her diagnosis, I had no idea what our lives would look like from that moment on. After she was born, I knew she would be okay, but the fog of postpartum depression fell on me, and thus began my battle over my mental health. Through the years, I’ve learned in many ways (mostly the hard way, if I’m being honest) how to recognize red flags, aka “warning signs” of declining mental health and how to combat it.

Not only does it affect me, but my mental health affects my family and relationships as well. Working on my mental health is essential for my family’s well-being. Both mothers and fathers experience depression, and approximately 15.6 million children—1 in 5—live with a parent who is severely depressed. The National Research Council and Institute of Medicine determined that untreated parental depression could impede children’s health and development. Because of this, parents need to be aware of the signs of depression and how to treat it.

As the pandemic has shed light on the importance of mental health for everyone, here are some things to look out for if you feel as if you’re beginning to struggle and ways to combat those warning signs.

Red Flags

Poor sleep habits 

Appropriate sleep patterns can help the brain process emotional information. Too much sleeping or not getting enough sleep can be warning signs that your mental health is declining. Poor sleep can influence your moods and emotions, creating fatigue and exacerbating symptoms of depression.

Negative self-talk

Feelings of helplessness, guilt, worthlessness, and sadness; all these negative thoughts would linger in my mind until it was as if my own brain was shouting at me saying how much of an awful person I was. The longer these thoughts stick around, the more and more I begin to believe them. Noticing these thoughts is critical when it comes to recognizing your mental health status and when it’s time to take action.

Lack of concentration

I call this “fog brain”, where I am just going through the motions of my day without any emotions. I know if I’m feeling checked out then it’s time for me to start using some strategies to boost my mental health.

Isolation

Not responding to those texts from your friends asking about scheduling a lunch date? Avoiding eye contact with the store cashier? Cancelling plans in favor of staying home? Stephen Ilardi, PhD, author of books including The Depression Cure and associate professor of psychology at the University of Kansas says that social isolation can worsen depression and how we feel and amplify the brain’s stress response.

Coping Strategies

Maintain your health

Make sure you eat a healthy diet, exercise, and get enough sleep. Easier said than done when you’re a parent, right? But there is no doubt that these factors are the foundation of a healthy mental state. Make your physical health a priority! You cannot pour from an empty cup!

Distraction

Not with your children. Okay, maybe with your children, but it must be something YOU enjoy doing too. Painting, puzzles, reading, exercise, you name it. Healthy coping strategies can be therapeutic and productive. The goal is to keep those negative thoughts away while you do something that you enjoy.

Be social

Make time for the people in your life who matter most to you! Whether it’s a lunch date, a night out, or a FaceTime after the kids are in bed, be sure to interact with a friend or loved one you don’t get to see every day. I like to keep up with this every few days, so I don’t feel isolated. Social interaction can help combat feelings of depression.

Let out your emotions

Then bring it back in. Have you ever noticed how you feel after a good cry? Let your body release how you’re feeling but give yourself a time limit. For example, “Okay, I’m really upset that my daughter has to have surgery again. I’ll let myself have a good cry for 5 minutes, and then I’ll go for a walk.” Tension in the body builds up and can snap at the wrong moments. This can create conflict and stress in your home and relationships. Being able to express those emotions in a safe and controlled way can help release that tension without creating consequences.

It's okay to ask for help

When the strategies don’t seem to work, looking for outside help can make a huge difference. Therapists and psychiatrists are a great resource who can help with strategies and medications, if needed, to help you be your best self.

Resources for help

Psychology Today is a great tool that can help you find therapists, doctors, and support groups. They also provide several articles for different mental health subjects, relationships, and personal growth. 

Your insurance website can help you find providers in your area that are in network.

988 Suicide and Crisis Lifeline is toll-free and available 24/7 for anyone suffering from a mental health crisis.

Call 911 or go to the closest Emergency Room if you’re having thoughts of suicide or harming others. 

Workshop Alert: Parent & Caregiving Coaching From Professionals Within Our CCA Family

 

CCA is proud that members of our community are educating other parents and caregivers! Check out these three events coming up soon presented by professionals that are members of the CCA Community.

(*Note these events are not hosted by CCA.)

Aug. 25: “Mindset Shift for Special Needs Parents – Learn how to overcome fear, worry, caregiver burnout and how to deal with uncertainty.”

Facilitated by Ludivine Tandazo, email questions to [email protected]

Free; Registration Required: registration link.

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Aug. 27: Wellness Workshop for Parents and Caregivers, facilitated by Vanessa Acero

$60; Registration Required: email [email protected]

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Ongoing Parent Support Group,  Second & Fourth Saturdays of each month, facilitate by Vanessa Acero

$35/session; Registration Required: email [email protected]

Grand Journeys: Tips and Tricks For Grand Caregivers

 

By Kara Jackman

My grandmother was a huge part of my days recovering from surgeries. She would bring her pastel crocheted blanket to the living room, and create a makeshift bed out of the loveseat in front of the TV. I remember these days fondly, and I am sure she did, too, as she was able to put her nursing assistant skills to work with her own granddaughter. Grandparents, along with family and friends who act in a grandparent-like capacity are a vital part of the family network that supports children and individuals affected by facial differences. They care for us, their kids, and their grandbabies in so many different ways. 

Encouragement and moral support is one way to help support the family member with a child with a craniofacial difference. As a grandparent there is not much you can do to take away the suffering of your grandchild, but there are ways to smooth the inevitable bumps in the road, like major surgeries and other medical care. You can send text messages, write positive notes, volunteer to babysit, and write positive affirmations to encourage caretakers to stay positive in front of their affected child. Care packages sent to the hospital, or packed before a big surgery are also a welcome support, too. Things like quarters for the vending machines, favorite drinks, snacks, and chocolate can go a long way in making them feel your love from a distance. Another wonderful tradition we heard about from the Laugharn/Lance family is the “Surgery Eve Sendoff.” Before a big procedure or surgery, both sets of grandparents take the family out for pizza. It’s a nice way to bolster both your children and grandchild(ren)’s spirits and something to look forward to amidst the anxiousness. 

Though you may not be front and center for your grandchild’s medical care, you may be there when others in your community ask questions about the child or individual. Be ready with some prepared responses to likely questions like “Why do her eyes look different?” or “What is wrong with her face?” Melanie Howington, a grandparent who just hosted a webinar for grandparents called Grand Journeys, recommends sharing something about what makes the inquirer unique. “God made her with big eyes, and you have beautiful curly hair that God gave you.” “She has a bigger head so that her brain can grow.”  If a parent or another caregiver is nearby, invite them into the conversation, and don’t allow them to “shush” the child or tell them to look away. Children are often just curious, scanning for differences. Reassure the other parents that it is okay to ask questions, if you are comfortable responding to them. 

Being a support person during the tough times around questions and teasing is one thing, but what about the trauma that your grandkids experience at the hospital during medical appointments and surgeries? Some of our grandparents suggest keeping an eye out on their outlook on life, emotional wellbeing, and social emotional interactions with others. “Reassure them that each surgery or medical intervention is for a reason, to breathe or eat better,” Melanie says. Siblings can help reassure too, because they are often the greatest ally the affected child has in their life. 

For days when the child will be in the hospital, suggest to the parents that a child life specialist be in attendance before surgeries or at medical appointments that might be scary. They have a whole host of tips, tricks, and games to keep kids distracted. Grandparents can help remind parents to model a positive, calm demeanor. The child will pick up on any worry and upset that the caregiver shows. Modeling an easy manner is vital to keeping trauma at bay. Melanie shares that a doctor told her that you can “raise a child differently and she will be different, or raise them just like you would any other child.” Encouraging caregivers and parents to normalize the hospital, medical equipment, and other things in the family’s life will help immeasurably. 

Maybe the most difficult part of being a grandparent is watching your child become a parent to a child born with special needs. There is so much grief and pain that you, as the grandparent, should acknowledge and validate. Don’t go overboard by bursting into the family dynamic to swoop in and save the day. Ask yourself is this a good time for me to step back or step in to help? Listening to what the parents or caregivers needs are in the moment, and honoring them is important to keeping the larger family dynamic healthy and happy. The family needs to have as close to a typical family experience as possible. Excellent awareness around boundaries will help you accomplish this seemingly monumental task. 

The ultimate goal of being a great grandparent or grand figure in the life of a child with a craniofacial difference is to be loving, fun, and encouraging. This should be your goal and role with all your grandchildren. Your children are strong, and supported by being part of the CCA family. They can do the hard things, too, with your loving guidance. The future will be bright for this next generation of CCA adults because of the impact you have on their lives.

NEW Overview: Surviving A Sleepover

Parents, guardians, and caregivers are you ready for your child's next sleepover? We have a new overview detailing those things to remember before you send your children to sleep over their friends' houses. 

Thank you to our friends at ConnectMed for helping us with the development of this overview. We could not have done it without you. 

Enjoy!

30 Stories, 30 Faces, 30 Years: Jerry Carchi

CCA has been one of the most inspiring organizations my family and I have ever been a part of. We found a place to call home, when it comes to being a part of group we can count on for advice and a place to pay it forward to a family just starting their journey into the craniofacial world. We have had so many great moments at the CCA Retreats, it is so hard to pick a favorite moment, but I can say that all those moments combine to become one great experience that is filled with pure love, understanding, kindness, and compassion. We see the future of the CCA family growing bigger and stronger as we continue to show families and individuals with facial differences that with love and support we can achieve anything no matter what the world throws at us.

                                                               -Jerry Carchi, CCA Dad

Jerry Carchi is the quintessential CCA Dad from Hohokus, New Jersey. He learned the art of fatherhood from his own great dad, who was always there, selfless, and reveled in seeing his children enjoy life. Jerry says his father “lived for us kids, and set the example of how to be with my child, Sydney.”

Sydney was born with Pfeiffer syndrome in 2009. Jerry and Virginia, her mom, hope to never let anything get in the way of Sydney doing and experiencing everything life has to offer. Jerry says, “CCA has helped Sydney embrace her differences and to never let barriers get in her way.”

The Annual Retreat and Educational symposium has had a positive effect on Jerry’s ability to be a father. Jerry and his wife, Virginia, learned about CCA and the retreat from Diana Sweeney at Children’s Hospital of Philadelphia. Jerry says the retreats have an overwhelming safe feeling. “We were not worried about who Sydney was hanging out with. There was no anticipation of what others were going to ask her. We, as a family, were free to be ourselves and feel a sense of normalcy.”

In addition to their annual retreat adventures, the Carchis love to seek out local adventures. They enjoy going to the park, art exhibitions, musical performances, hoping to show their daughter the world of ways she can authentically connect with people through the things you do, not the way you look.

Jerry has danced his way into our hearts here at CCA and at the Wyckoff YMCA where he works as Assistant Director. Jerry wanted to make a difference and help people find community through his unparalleled dance steps, kind heart, and loving spirit. With that said, it should be no surprise that Jerry teaches weekly Zumba classes at the YMCA and on Saturday morning at this year’s Annual Retreat and Educational Symposium, two communities he cares for deeply.

#FaceEqualityWeek2019 Rewind: How to Handle Awkward Questions About Your Baby

By Amy Mendillo
Amy Mendillo is a health writer-editor based in Providence, RI. Her forthcoming book, an insider’s guide for families of kids born with cleft lip and palate, will come out in Fall 2020. Visit www.parentsandclefts.com to learn more. 

(Editor's Note: We chose to run this piece by Amy Mendillo during #FaceEquality2019 Week because parenting during these infant years can be difficult when you first bring your newborn baby out into the world. While the world asks questions, you, as parents, must provide answers and advocate for your child. Amy shows us how its done, through anecdotes shared with her from other parents with children born with cleft lip and palate.)

When Jessa first shared the news of her infant son’s cleft lip and palate with close family members, their reactions surprised her.* Ordinarily, Jessa’s parents and relatives responded supportively when challenges arose. This time, unfortunately, some of their comments stung. “My mom doesn’t understand why my baby can’t breastfeed,” she started. “My grandfather refers to my baby’s cleft as a ‘harelip,’ and a friend’s mom has told me that I need to ‘warn people’ before they meet my baby so they aren’t caught off-guard by her defect.” If the remarks had not been so hurtful, Jessa noted, the collection of statements would almost be laughable. “I have handled these situations both well and not so well,” she added.

Interacting with family and friends can be a particularly sensitive topic for parents of kids born with cleft lip and palate (and for parents of children with other conditions). It is stressful enough to field a thoughtless remark about our baby from a stranger in the grocery store—or for that matter to simply anticipate that thoughtless remark. It can be quite a bit more complicated to hear similar comments from loved ones who make up our trusted support system.

As a health writer-editor working on a book for families of kids born with cleft lip and palate, I have interviewed more than 70 parents over the last several years to hear about their experiences with their child, particularly during their baby’s first year. In listening to stories and insights from these parents—and in some cases interviewing more than one generation within a family—I noticed that in many instances close family members lack basic information about cleft lip and palate and the related issues that occur during the early months of life, but also about how emotionally sensitive these topics can feel to a young parent. Jessa’s mom was not wrong to wonder why her grandchild could not breastfeed—after all, she was new to the subject—but she was also unaware that expressing that question repeatedly and in blunt terms might be distressing for her daughter.

Fortunately, there are ways to help these interactions go more smoothly—both for loved ones and parents. One chapter in my book offers techniques for close friends and family members to consider, including tools for active listening, ideas for supportive gestures, and specific sample phrases—all based on academic research, interviews with professionals, insights from parents, and my own experience as a parent of a cleft-affected child. I explain, for example, why the term harelip and other “hot words” don’t hold up anymore. (Jessa’s grandpa can learn the news from a friendly third party!), and provide anecdotes that reveal some ways parents feel about their baby’s appearance—so that loved ones can have a starting point for understanding our perspectives.

As parents, of course, we also play an important role in improving communications with loved ones. To start, we can be as honest and direct with family members as possible about our child’s condition, whether we are discussing medical information or our own feelings. These candid conversations may feel uncomfortable at first or even require advance preparation in order to get the words just right. We can also do our best to be constructive with family members when a conflict arises, make an effort to put ourselves in their shoes, and try—try!—to give them the benefit of the doubt, especially if we know they mean well. They, too, may need support as they process the news (even if that support doesn’t have to necessarily come from us). We must be mindful of generational differences—not to excuse old-fashioned biases, but to be aware of our parents’ personal histories, perspectives, and even conversational styles.

Sometimes our loved ones, especially grandparents, need time to learn more about their new family member’s condition. Right after her daughter was born, Kristen recalled hearing hurtful comments from her own mother.

“My mom came in to our hospital room,” she remembered, “and said she was concerned about ‘how they were going to fix it.’ I was pissed off. I didn't say anything because I didn't want to have a fight in the hospital.”

Then time passed. Kristen’s mother started to take care of the baby on Fridays. “After that, she didn't say anything about it,” Kristen continued. “Everyone fell in love with her lip, even my mom.” Sometimes, family members need time to wrap their head around a situation and accept it, even if their initial response sounds shocking and insensitive.

As parents, we, too, often need to seek the same time and space to process our emotions around the birth of a baby with a cleft lip and palate. My hope is that by hearing stories from others, learning ideas, and methods from current research, family members of all generations can adapt, cope, and even grow from it together.

*Names have been changed.

30 Stories, 30 Faces, 30 Years: Melissa McGowan

While talking about Pfeiffer syndrome recently, I was asked if there had been a moment of realization that everything would be okay and our family could handle this journey. Without hesitation, I shared about the moment I found CCA. CCA has given our family hope, has empowered us to be advocates for the craniofacial community, and has introduced us to strangers who quickly became family. With the support of CCA, we’re not just “okay.” We’re thriving.

                                           --Melissa McGowan, CCA Mother

Melissa and her husband Tom McGowan live in Canonsburg, PA. They have four beautiful children, Abby, six, Reese, four, Josie, two, and their newest bundle of joy, Elizabeth was born on April 4, 2019. Melissa enjoys taking her girls to the park and cheering on their favorite baseball team, the Pittsburgh Pirates (Go Bucs!). They are always playing interesting games, completing fun projects, and exploring the world with their Mom. 

Currently, Melissa is a proud, stay-at-home mother. She attended West Virginia University where she earned a Master’s degree in Elementary Education with a specialization in Mathematics. She taught for a while and then lent her talents to writing grants for an after school program after Abby was born. Melissa loves being home with the kids, though some days she does admit to missing the classroom.

Melissa and Tom found CCA shortly after Abby was born, while searching for more information on Pfeiffer syndrome. While balancing the art of early parenthood, they were also receiving a crash course in the world of craniofacial differences. Melissa reflects on this time, "It was definitely overwhelming at first with all of the testing, appointments, therapies, surgeries, specialists, etc, but our faith and our support system carried us through." All of this was possible because of the love of this superb mother.

Melissa shares the same worries all Moms have about their children's future, but thanks to the work CCA does in raising awareness and teaching empathy to students, she knows there is hope. "I still worry that Abby will be treated unfairly because of her differences, but I know that anyone who takes the time to get to know her will learn what we know to be true: she is a strong, resilient, beautiful person who is an absolute inspiration and joy.”

Let us celebrate Melissa and all the CCA mothers this Mother’s Day by building a more accepting world for Abby and all her CCA friends.

How To Handle Awkward Questions About Your Baby?

By Amy Mendillo
Amy Mendillo is a health writer-editor based in Providence, RI. Her forthcoming book, an insider’s guide for families of kids born with cleft lip and palate, will come out in Fall 2020. Visit www.parentsandclefts.com to learn more. 

When Jessa first shared the news of her infant son’s cleft lip and palate with close family members, their reactions surprised her.* Ordinarily, Jessa’s parents and relatives responded supportively when challenges arose. This time, unfortunately, some of their comments stung. “My mom doesn’t understand why my baby can’t breastfeed,” she started. “My grandfather refers to my baby’s cleft as a ‘harelip,’ and a friend’s mom has told me that I need to ‘warn people’ before they meet my baby so they aren’t caught off-guard by her defect.” If the remarks had not been so hurtful, Jessa noted, the collection of statements would almost be laughable. “I have handled these situations both well and not so well,” she added.

Interacting with family and friends can be a particularly sensitive topic for parents of kids born with cleft lip and palate (and for parents of children with other conditions). It is stressful enough to field a thoughtless remark about our baby from a stranger in the grocery store—or for that matter to simply anticipate that thoughtless remark. It can be quite a bit more complicated to hear similar comments from loved ones who make up our trusted support system.

As a health writer-editor working on a book for families of kids born with cleft lip and palate, I have interviewed more than 70 parents over the last several years to hear about their experiences with their child, particularly during their baby’s first year. In listening to stories and insights from these parents—and in some cases interviewing more than one generation within a family—I noticed that in many instances close family members lack basic information about cleft lip and palate and the related issues that occur during the early months of life, but also about how emotionally sensitive these topics can feel to a young parent. Jessa’s mom was not wrong to wonder why her grandchild could not breastfeed—after all, she was new to the subject—but she was also unaware that expressing that question repeatedly and in blunt terms might be distressing for her daughter.

Fortunately, there are ways to help these interactions go more smoothly—both for loved ones and parents. One chapter in my book offers techniques for close friends and family members to consider, including tools for active listening, ideas for supportive gestures, and specific sample phrases—all based on academic research, interviews with professionals, insights from parents, and my own experience as a parent of a cleft-affected child. I explain, for example, why the term harelip and other “hot words” don’t hold up anymore. (Jessa’s grandpa can learn the news from a friendly third party!), and provide anecdotes that reveal some ways parents feel about their baby’s appearance—so that loved ones can have a starting point for understanding our perspectives.

As parents, of course, we also play an important role in improving communications with loved ones. To start, we can be as honest and direct with family members as possible about our child’s condition, whether we are discussing medical information or our own feelings. These candid conversations may feel uncomfortable at first or even require advance preparation in order to get the words just right. We can also do our best to be constructive with family members when a conflict arises, make an effort to put ourselves in their shoes, and try—try!—to give them the benefit of the doubt, especially if we know they mean well. They, too, may need support as they process the news (even if that support doesn’t have to necessarily come from us). We must be mindful of generational differences—not to excuse old-fashioned biases, but to be aware of our parents’ personal histories, perspectives, and even conversational styles.

Sometimes our loved ones, especially grandparents, need time to learn more about their new family member’s condition. Right after her daughter was born, Kristen recalled hearing hurtful comments from her own mother.

“My mom came in to our hospital room,” she remembered, “and said she was concerned about ‘how they were going to fix it.’ I was pissed off. I didn't say anything because I didn't want to have a fight in the hospital.”

Then time passed. Kristen’s mother started to take care of the baby on Fridays. “After that, she didn't say anything about it,” Kristen continued. “Everyone fell in love with her lip, even my mom.” Sometimes, family members need time to wrap their head around a situation and accept it, even if their initial response sounds shocking and insensitive.

As parents, we, too, often need to seek the same time and space to process our emotions around the birth of a baby with a cleft lip and palate. My hope is that by hearing stories from others, learning ideas, and methods from current research, family members of all generations can adapt, cope, and even grow from it together.

*Names have been changed.

#WonderWednesday: Melissa Brings Wonder Story to College Students

Melissa McGowan of Canonsburg, Pennsylvania went to West Liberty University in January to speak to future physical education teachers. The focus of the course for these future teachers was on including adaptive athletics into the physical education class planning. Melissa shared in order to provide a picture of how to best approach inclusion of the whole child or student in the classroom. She used her experience as a mother to Abigail, her daughter born with Pfeiffer syndrome. Melissa spoke about creating a positive environment for all students. Finally, she asked the students to discuss how they would handle differences of all kinds in their future classrooms.

The physical education professor at West Liberty University said that Melissa created a "Clear presentation, including images shown on her slideshow and through her personal storytelling."

"Melissa was an amazing representative of CCA. She was knowledgeable, passionate, and students could easily relate to her. She was super organized and made the information easy to understand. Her main message of seeing the child--and not just seeing the label or diagnosis--was clear and convincing. We were so grateful that Melissa came and shared so much with us!"


Thank you Melissa for sharing your story with these college students.

My Superhero: A Mom Reflects On A Child's Strength

Photo Credit: Lauren Sirignano

By Lauren Sirignano

This girl is my superhero. My everything. I think of what she’s endured in 2 1/2 years and I am humbled, proud and brought to tears by her strength.

We are about 2 1/2 months out from another string of surgeries for this beauty. I still find myself asking, why? Why does Althea Rose have to endure so much....

I don’t think I’ll ever have this answer, but what I do know is that she can handle it. It’s not fair, it’s not meant to be fair but Althea has a light and strength in her that I have never seen before.

She is not like anyone else. She is literally a superhero; in every imaginable way. I would not change this girl for anything in the world, I would only take away the pain.

Since Althea was born I have occasionally posted stories about the #choosekindness campaign and the importance of educating your kids to not only be friendly, but to be a friend. The stories I hear through our network are filled with hope, love and kindness, but you also hear some that rock you to your core with dread, sorrow and worry.

We are meeting to discuss Althea’s preschool plans in a couple of weeks and I am so excited for this loving, social butterfly to flourish in school. But if I’m being honest, this may scare me more than her surgeries.

I know Althea, I know her resilience, her strength, her stamina, her soul...however, I don’t know other kids...other parents, what’s being taught in other homes, and when talking about school and Althea, that scares me more than words can convey.

PLEASE teach kindness in your home, challenge your kids to be friends with anyone and to always look beyond what’s “normal” by society standards. Teach kindness now, and never stop teaching it.

Althea is a rockstar and will do well in school, regardless but our village can make it easier by teaching kindness to their littles. Pain comes in many forms, and choosing and teaching kindness over hate will help to eradicate possible pain for kids like Althea. Spread love.

Hugs in the Parking Lot

By Xanthe Alyse Chefurka Faulkner

Editor's Note: This is a repost of a blog entry from September 23, 2015. It resonated so much that we felt we should post it one more time!  The post was originally found on one of the craniosynostosis groups on Facebook, and graciously, the author, Xanthe Faulkner, agreed to let me share it on our blog. I believe it's a succinct and beautiful peek into the lives of our amazing cranio moms and dads, and a great example of why family networking is so critically important and huge part of the work we do at CCA Kids. 

Why we cranio families are who we are...

So Helmetbaby here is in daycare. And the day he started, 4 months ago, I looked at a boy in his class and thought "Saggital. For sure." But you know how it is - I never crossed paths with his parents, don't know the family, maybe he's already being followed, etc... But we're very public about our son's journey, so all the staff know us and the details of our little guy's condition and journey.

So this morning I was carrying my son across the parking lot towards the school. And a woman I don't know calls to me, softly, and comes over. "I need to talk to you," she falters, "I'm so happy you came just now. The teachers said I should, that I could..." And tears well up in her eyes, and I knew right away. With my son cradled in one arm I wrapped my other arm around this stranger and held her tightly. Of course she was the other little boy's mom, and she had gotten CT confirmation of fused saggital and metopic [planes of the anatomy of the skull] the day before. "I'm so upset," she said, soft spoken and shocked, "I never expected. I'm beside myself. I forgot all my groceries in the store yesterday. I'm so distracted and scared, I don't know what to do."

She doesn't have Facebook to get support from you all, she hasn't even met with a neuro[logist] yet, but I gave her my number. We'll have coffee. I told her my son was fine, more than fine, and that while it had been scary, the results were fantastic. That everything will be okay. And guys, I felt so clearly... That we as cranio parents are the only ones that get it. The sudden fear of realizing they will have to cut your child's skull open and piece it back together. The terror of things going wrong. Worries about their little growing brains. The unknown. And I thought about how people who understand first hand are the only ones who seem to bring any comfort sometimes. You can't fake having been there. And once you've been there, you are driven to reach out to others standing in the new fear,

To hug them in the parking lot,

To whisper,

"I know."

Thank you all for being that for me and so many other families. 

Thank you for teaching me how to be that for others. XO.

Take Care of the Skin You're In This Winter

By Amy K. Williams

Amy Williams is a freelance journalist based in Southern California and mother of two. As a parent, she enjoys spreading the word on positive parenting techniques in the digital age and raising awareness on issues like cyberbullying and online safety.

As we flip our calendars, it’s hard not to notice that we are in winter’s icy grip. This change of seasons is our cue to start digging out the warm sweaters, snow shovels, and soup recipes. 
While many of us love to snuggle in for a cold winter, we often overlook the impact winter weather has on our kids’ delicate skin. Unfortunately, the cold northern breezes often usher in a season of chapped, itchy, and irritated skin for our children that is often exacerbated by the dry atmosphere, 
forced air heating systems, and runny noses. As moms and dads, we owe it to our sons and 
daughters to look for the best ways to protect our kids’ skin from the winter weather.

Scroll through the following best ways to beat the elements and keep our kids comfortable in their own skin this winter:

Eat for your skin. We have all heard the adage about “you are what you eat”. There is a little truth to this saying when it comes to our skin. Encourage kids to consume healthy foods and drink plenty of water. We can prevent a lot of skin problems by consuming foods that are loaded with essential fatty acids, such as: avocados, flax, olive oil, walnuts, and even salmon.

Add moisture to the air. Do you remember shuffling our feet on the carpet to build static electricity to shock unsuspecting siblings? Many of us do and this time honored tradition occurs partly due to the fact that winter air can be dry, especially inside our homes. This low humidity can cause our littles to experience painful dry, itchy, and rough skin which can be very uncomfortable. We can relieve some of the dryness by adding moisture back into the air using warm air humidifiers or by boiling a large pot of water on the stove. Aim to reach a 60 percent humidity level for ultimate comfort. However, we do recommend using caution and keeping these items out of the reach of children to prevent any mishaps or burns.

Moisturize their skin. Unfortunately, adding humidity to the air doesn’t always keep dry skin away. According to the American Academy of Dermatology, the key to defending kids against dry skin is to trap in the existing moisture by using ointments or creams. For best results, use products that contain the following ingredients: lanolin, glycerin, petroleum, mineral oil, olive oil, and other essential oils. It is best to apply moisturizers immediately after bathing to lock moisture in and prevent further drying.

Skip the nightly bath. Surprisingly, our boys and girls don’t need to take a dip in the tub every day or evening. Daily bathing can remove the skin’s natural oils and do more harm than good. Overbathing can cause eczema and other dry skin conditions to flare up. According to the American Academy of Dermatology, we only need to bath our children one or two times a week. Unless, of course, they are particularly smelly or dirty. Even then, we should avoid using extremely hot water and limit their soaking time to 5 or 10 minutes.

Layer, layer, layer. Avoid over-bundling and layer our kids’ clothing to prevent chafing, overheating, and irritation. While our first instinct is to insulate them against the bitter cold weather, we need to dress children like an “onion” with peelable layers. Start out with a layer of cotton and then add on removable layers so kids can easily adjust to the unpredictable weather and temperatures without a lot of effort. This can prevent heat rashes, sweating, overheating, discomfort, and more.

Remember the sunblock. Yes, our skin still needs protection from the sun’s harmful rays even during the winter months. We need to consider that even when it’s cold and cloudy, 80 percent of the winter’s sun rays still make it to our earth’s surface. For this reason, our children are being exposed to UVA rays without protection and that can increase their risk for skin cancer in the future. To make matters worse, snow cover reflects and intensifies sunlight which can increase the likelihood of sunburns. These winter factors make it important that we keep applying sunblock on our sons’ and daughters’ delicate skin long after the dog days of summer.

Avoid irritants. Our goal should be to prevent skin problems so our kids don’t suffer and we don’t have to treat them. One way we can do this is by avoiding irritants by keeping little ones out of harsh winds and avoid overuse of hand sanitizers, cleaners, harsh soaps, damp clothes, or very hot water irritants.

What are the best ways you can protect your kid’s skin from winter weather?

Family Spotlight: Araceli Kimberlin

By Araceli Kimberlin

I was born and raised in Dallas, Texas. I love my city and couldn’t imagine living anywhere else. I actually live in a house three houses down from my childhood home, where my parents still live. I always say I’m a 1,000% city girl. However most of my extended family lives in New Mexico, which is where my parents met and spent a good portion of their lives. When my parents decided to move to Dallas before I was born, I don’t think they realized how significant that move would be to the health and well-being of their first daughter. They ended up moving 10 minutes from one of the best hospitals in the world for medical help for kids with facial differences.

Growing up, I knew about CCA and often attended the yearly Christmas parties. But my family and I weren’t really involved in the organization. When we found out that our second son Aaron had Crouzon Syndrome like I did, I wanted his experience to be different. I wanted him to have a community where he could feel accepted and where he could feel like others could relate to him and the issues he was facing. I knew we needed to become involved in CCA. I attended our first CCA picnic last September and met so many wonderful CCA staff members and parents of kids with facial differences. It was amazing. Ever since then I’ve looked for every opportunity to be more involved in this wonderful organization. 

Thankfully, I knew what Aaron would go through because of my personal experiences with Crouzon Syndrome. As a child growing up with facial differences, life was tough. You can’t “hide” or “change” your differences. Many times I felt like no one could relate to me and what I was going through. No one understood what it was like to look different even though I was the same as they were on the inside. However, I never viewed my facial features as a barrier. I decided I was going to live my life as “normal” as possible and wanted to do what every normal kid at that age did. I excelled in school, I was a dancer, I had a ton of friends, and I joined many extra-curricular activities, many of which I held leadership positions. 


Today, my mom and I are unraveling my surgical history after walking through a couple of surgeries with Aaron. I think we estimate that I had about six in my childhood. The first one was when I was nine months and that one was to fix hydrocephalus. My last surgery was at 14, right before my fifteenth birthday or quinceanera. That was hard. I remember taking my quinceanera picture with a slight smile because my jaws were wired shut. I should have probably had another surgery at 18 but after the last surgery at 14 I decided I didn’t want anymore. My parents were amazing in supporting my decision. 

As a child, Crouzon Syndrome was just something I had. I had to go into surgeries for it and it was just a part of my life. Having a child with it opens up a whole new world. All of a sudden I have become a doctor, advocate, nurse, insurance bill specialist, protector and so many other things I wasn’t when our first son was born. I remember sitting in shock when the doctors told me they suspected he had it. I couldn’t believe it. It never crossed my mind that Aaron could be born with it since our first son didn’t have it. I was sad, frustrated, and angry. But then I realized the quality of life he would have. It was going to be amazing, because my life is amazing and still is. I know I’m going to teach him to love his life just like my parents taught me. I’m honored that I get to tell Aaron I’ve walked in his shoes. I know what it feels like to have Crouzon Syndrome and I’m going to be there for him. 

My hope for my children is that they grow up to be confident, strong men of God. I want the story of their lives to give others hope. I want them to find purpose in their trials and use it to inspire and make a difference in the lives of others. 

I absolutely put my hope and trust in Jesus, the one who saved me, accepts me and loves me, facial differences and all. My husband and two boys inspire me to become a better woman, wife and mother. I want to grow everyday and be a better person today than I was the day before for them. I also live my life based on Philippians 4:8 in the Bible. I find joy in life, even in the struggles. There is ALWAYS something to be joyful about. 

Part of living out that joy is by spreading kindness. Kindness to me means taking a moment to put myself in the shoes of someone else. If

a person was mean or rude to me I always give them the benefit of the doubt. Maybe they just received some devastating news. Maybe they lost someone dear to them. If someone is happy I want to celebrate with them. One day I will be celebrating and I would love for them to be happy for me. Kindness is a way of life, not just a fleeting feeling. And with everything in me I believe the more kindness I pass out, the more kindness I will receive.

Family Spotlight: P.J.'s Birth Story & Advice For New Parents

By Crystal Kouri

Surprise, your baby was born with Treacher Collins Syndrome! Your delivery was not the beautiful experience that you had expected. You may have had a lot of warning signs during the pregnancy that may have been overlooked and you feel let down by your doctors. You probably labored for days in the delivery room -- probably much longer than what is considered to be normal. And then all hell broke loose. You are not alone.

Here was my experience and the raw feelings I felt  after giving birth to my beautiful baby boy, P.J, born with Treacher Collins Syndrome.

(L-R) Jono Lancaster, P.J., Paul Reynafarje, father,
and Crystal Kouri-Reynafarje, P.J.'s Mom 

Finally, after days of contractions, I was induced due to severe polyhydramnios. Four days later, P.J. finally came out. His dad and I were both crying with joy and relief. They put him up on my chest for the first time. The doctors and nurses did a double take and immediately took him back. Being our first baby, we were so confused as to why they would take him back?

We had not even seen him yet. What was wrong? They kept him in the room for a few minutes as dozens of people rushed in and out. And then everyone rushed out of that room with him.
My husband followed them down the hall. He came back a few minutes later repeating their words,“Treacher Collins.”

Treacher Collins? I don’t know what that means??? As I’m still crying on the delivery table with my lifeless legs in the stirrups, my husband Googled Treacher Collins. We quickly learned that the internet is a very scary place. We were bombarded with all kinds of images of the most severe cases. Scary, considering we had not really seen our baby yet.

I lost it! Lost it on a level I have never experienced before. Complete hysteria set in. I remember apologizing to my husband thinking that I had done something wrong. Was I too old? Did I work too much? I did my fair share of complaining throughout the pregnancy. Was the universe, or God, punishing me for taking my pregnancy for granted?

My husband invited my parents and sister into the room to calm me down. They knew when the baby was not  there that something was wrong, but the did not understand why I was so upset. Everyone was silent as my husband read them the definition of Treacher Collins as written in the  Wikipedia entry he found on the syndrome. My family just looked confused as he read a bunch of complicated medical terms.

I finally said, “show them.” I’ll never forget the looks on their faces. Shocked, silent, awkward and scared. Is this what I will see for the rest of my life when people look at my son?
At this point everyone was in tears and trying to console me as I hysterically rattled off all of my concerns for his future - acceptance, friends and most of all, bullying. Medical needs can be treated and overcome, but emotional scars are so much more severe. Why was my child being punished? Why would the universe, or God, allow this child to be born into such cruel, emotional circumstances and medical hardships?

I completely shut down. I didn’t want to talk to anyone. Locked myself away and cried for two days straight without any food or sleep.  I had publicly posted about going to be induced on my social media accounts. I shut it all down! - I deleted everything and hoped people would not notice.  

When my husband finally talked me into going to see the baby, he didn’t look so bad. Cosmetically, he is a mild case, which was relieving, but he still has the classic medical problems that Treacher Collins babies have to endure (breathing, eating, and hearing). The bigger issue was that I wasn’t feeling a bond with him.

Over time, P.J.and I developed a bond. I love him so much. Energized by my personal experience, I want to give back to the craniofacial community. On Sunday, April 22nd, we hosted two charitable performances at Le Petit Cirque to help raise funds for P.J.’s hearing aids and the Love Me Love My Face Foundation. The two performances were a success. Still, I feel called to do more. I want to help other new parents develop a bond with their children born with facial differences. Here are my tips on how to handle the birth of your baby that also happens to have Treacher Collins.  

First, do not let anyone make you feel guilty for not feeling a bond right away. My husband was kind enough to give me the time I needed before I went to visit P.J. in the hospital. He did not pressure me to go with him. Everyone processes feelings in their own time. I encourage you to keep trying to go visit. One time, out of nowhere, and for no reason, it just happens. Instantaneously, you will fall in love with your baby. You will still be scared as ever, but in love! This child is now your child and you were meant to protect and nurture him or her.

Secondly, if you are not ready to talk publicly about the your child’s facial difference... DON’T! Have someone tell others about the circumstances of your situation, that you need space and privacy during this time. You can announce the birth of your baby when you are ready!

Crystal Kouri-Reynafarje and P.J. at the
Le Petit Cirque charitable
event 

Thirdly, you did nothing wrong! In most cases, Treacher Collins and other facial differences happen because rare, genetic mutations occur at the time of conception. It is no one's fault.

Finally, and perhaps most importantly, CONGRATULATIONS on your new baby. Not many people will say that to you at the beginning of this journey. In fact, I’ll say it again.... CONGRATULATIONS!