What does it mean to be different from the norm? What do kids who are born with these differences go through? How do they and their parents handle it?
You are going to meet some of these kids and hear their stories.
BRITTON DREW A darling baby girl born with a facial Hemangioma.
GWEN A beautiful little girl who is bald. 
OWEN A handsome little boy born with no arms and atypical legs.
The Greatest Showman was inspired by the life of P.T. Barnum and how he turned people who were shunned by others because they were physically different, into stars, changing their lives.
It depends on who you ask. It’s about perception and what people really see.
Normal to some people may be quite different than normal to other people.
Every child has their own individual attributes that make them who they are, like the color of their hair, their eyes, personalities or tastes which makes them different from other kids. But those are acceptable, normal differences. Nobody would notice or think of them as “different.”
Parents dream of a healthy normal baby. Ten fingers and toes all wrapped up in perfect. But what if their child doesn’t have the proverbial ten fingers or toes. What if they are physically different outside of the acceptable norm? Does that mean they aren’t perfect? Of course not. What is perfect?
When a child is born with physical abnormalities there are a number of challenges that the parents and the child may have to deal with. These can be physical, medical or financial, all of which can be very difficult for them.
But perhaps the most difficult thing they have to face is the emotional impact. Dealing with people they meet in their everyday lives can be devastating. Why? Because they are different, and people are people.
People who need to be educated.
The Greatest Showman shows how cruel people can be. Times have changed and for the most part people are no longer intentionally or outwardly as cruel as they used to be, however human nature will never change.
Why do human beings react the way they do when they meet someone who is different?
- People are curious. They are fascinated by things that are outside of the everyday norm. They want to look. Their natural tendency to either stare, or even worse go out of their way not to stare.
- They don’t know what to say or what to do and this makes them uncomfortable, which creates the proverbial elephant in the room. You’ll read about this reaction in the wonderful story by Maureen Wolak below.
Parents and kids who deal with this everyday of their lives are used to these reactions. Although that doesn’t make it any easier, they know to expect it. That doesn’t mean they are immune to it.
According to some experts, the direct approach is the way to remove the elephant. When I was in the medical field, we learned that when dealing with people who had physical differences both parties were uncomfortable. Bringing the subject out in the open & breaking the so-called ice creates a welcomed open dialogue making the situation comfortable for both parties. We’ve all been in a situation where we felt instant relief when a subject was brought out in the open. According to Owen’s mother Casey, kind and curious questions are always welcome. Children should not be discouraged to ask questions and be made to feel that there is shame in another child’s differences. Open dialogue opens doors.
Kids can be cruel, but they don’t usually intend to be mean. They are just honest. They haven’t yet learned adult skills, the art of bologna. The good thing is that kids have no trouble saying whatever’s on their mind. The bad thing is that kids have no trouble saying whatever’s on their mind.
Being different from other kids can make them a target. How it affects their self-esteem depends on how they perceive themselves. And how they perceive themselves can be directly related to how they are taught to perceive themselves by their parents.
There is a saying that 10% is what happens and 90% is how you handle it.
Parents are essential in the level of a child’s self-esteem. They hold the key. Those who instill in their child a strong sense of self-worth by addressing their positive attributes and refusing to allow them to dwell on the negative will have a child with great self-worth. These children will have great self-esteem and will be better prepared to face the world. Those who refuse to allow themselves and their child to be a victim will reap the rewards of a happy well-adjusted child. A great example of this is in the story of Britton Drew by her mom Nikki Stauffer below.
These are the experiences of three families who have graciously shared their personal accounts of raising their beautiful kids, Britton Drew, Gwen and Owen who are different. After reading their stories, you may look at children who are physically different, differently.
BRITTON DREW
This is about my granddaughter Britton Drew and how my amazing daughter Nikki handled the most unexpected. Nikki is a strong personality who is very positive and never gives up on anything. Defeat is not an option. Her favorite expression is “put on your big girl pants and move on.” I’m very proud that she has instilled that in her two girls. Both winners. This is her story.
When she was born, she was perfect. We thought our 7 lb, 1 oz baby girl was absolutely beautiful! She had beautiful, deep wide eyes in the shape of almonds, strawberry blonde hair and full red lips. Perfect.
From the very beginning, Britton was never interested in taking a pacifier. This was so different than her older sister Ansley who had a ‘bobber’ in her mouth at all times (and usually one in her back pocket just in case). She also struggled with taking a bottle. We tried many tricks and found putting Vaseline on the nipple of the bottle seemed to work the best but was never sure why.
We couldn’t believe it when it was time for her 6week check-up. She was dressed in the cutest outfit in her closet, squeaky clean and smelling like baby lotion with a dollop in her hair. But it was during her exam that we noticed the pediatrician spending a lot of time looking at and around her mouth. We couldn’t imagine what she was looking at when she asked us if Britton had been hit in the mouth. Of course she had never been hit in the mouth! She suggested that perhaps her older sister Ansley, who was almost 2, had hit her sharing that most injuries to infants are caused by older siblings. With a mom, hovering Dad and a full time Nanny, I knew there was no way Britton had been hit in the mouth. Not to mention, Ansley has the sweetest, kindest soul and did nothing but love on her baby sister.
After further discussion and investigation, it was determined that Britton had a Hemangioma on her lip and down her gum on the inside of her mouth. Of course, my first thought as her mother was ‘OH MY GOD! I HAVE TO GET HER TO A PLASTIC SURGEON BEFORE IT TAKES OVER HER ENTIRE PERFECTLY BEAUTIFUL FACE!” So that is what we did. After extensive homework, we found a surgeon in Chicago that specializes in facial Hemangiomas. When I called and shared our story, I was told that she was too young to be seen by him. They usually wait until the child is older and can withstand such surgery but after my insistence (and multiple phone calls), he agreed to meet with us in his office on a Sunday. Why a Sunday? Because it would be months before he had an opening in his office for a typical weekday appointment and I painted such a grim picture that he agreed to meet with us on a Sunday! So again, dressed in the cutest outfit in her closet, squeaky clean and smelling like baby lotion with a dollop in her hair, we make the trip to Chicago.
The surgeon was gracious but humored. He told us that he usually sees patients when you can only see the whites of their eyes because the Hemangioma has taken over the face. He said for us to keep an eye on it. If it were to leave the lip line and spread onto the face, we were to see him immediately. Fortunately, we never had to make another trip to Chicago. The Hemangioma steadily grew on those full red lips and down into her gum but it never left the lip line. And although quite obvious, after a while we didn’t even notice it.
The most beautiful part of our story is how God blessed Britton with a disposition to handle it. From the very beginning, Britton was a bright child. Her vocabulary was extensive. I will never forget the look on the Barista’s face when with me on a trip to Starbucks, she asked Britton what she would like and at 3 years old, Britton replied “Cappuccino” as clear as a bell. It was one of those moments as a mother that you don’t want to ever forget so I had an artist come and paint the word “Cappuccino” with a picture of one on the wall of her bedroom.
Kids can be cruel and I was so concerned about how they were going to react to Britton’s lip. I made the decision from the very beginning that Britton was going to be equipped with what she needed to respond to such reactions should she get them. She understood that she had a Hemangioma, and she understood that she was special because she had one and that it only made her full red lips more beautiful. When people would ask me what was wrong with her lip, I would refer them to Britton. They would then sweetly ask Britton what was on her lip and her response always flabbergasted people…..she would matter-of-factly look at them and say ‘It’s a Hemangioma” as young as 3 years old.
We were one of the lucky ones. Britton is now a perfectly beautiful, albeit feisty very self-confident 10 year-old. 
Although it is still there, the Hemangioma that she has had since birth is small. It never defined her. She never backed down from a good discussion around it and considered herself special for have been ‘kissed by angel as she used to say. She most certainly is special. At her most recent Parent/Teacher conference, her teacher told us that she leaves people better than when she finds them. We are certainly better for having her in our lives. Xo
To learn more about Hemangiomas go to https://facesofchildren.org/glossary/hemangiomas/
Support Organizations:
http://hemangiomatreatment.org/
https://www.infantilehemangioma.com/your-support-center/support-advocacy-groups/
A list of support and advocacy groups
https://www.aafp.org/afp/2016/0315/p526.html
GWEN
While on a facebook site for grandmas one day I read this amazing story by Maureen Wolak, a dedicated Christian woman from Howell, MI (a small town recently voted the best small town in the US), who has been married to her husband Dennis for 44 years. Maureen is the mother of two adult children and the grandmother of five under the age of seven!
The story of her beautiful little granddaughter Gwen touched my heart and brought back memories of when my little Britton Drew was born with a facial Hemangioma and what we all went through. Maureen inspired me to write this article, so I contacted her and asked if I could include her story for public awareness. She is a wonderful person I’ve had the pleasure to work with.
Gwen was diagnosed with Alopecia at around age two. Her mom and dad, Katie and Brian, have 
handled this situation with faith, grace, strength and dignity, and Gwen – at the age of 4 – is a healthy, strong, I-can-do-it-myself individual.
These are her posts:
April 18
One of my grands (4 years old) has a condition called Alopecia wherein she can’t grow much hair. It was discovered at 21 months when all her hair fell out. Through an amazing non-profit organization in Michigan called Wigs for Kids she has been provided with a custom wig. She got it yesterday. She’d be beautiful bald or with hair, but it sure tickled her to have hair on her head. Here are some photos.
May 4
Need an unbiased opinion of something. My husband has been telling our 4-year-old granddaughter
she is the “most beautiful _-year-old” since she was about 3. It’s the truth. Unfortunately this little girl is mostly bald due to alopecia. Now she won’t talk her grandpa and tells him she doesn’t like him. When asked why, she said, “Because you’re bald.” He’s not hurt, but we’re wondering what this means.
These are the posts from Gwen’s mother that tells the story.
May 28, 2016 (Katie – Gwen’s Mom)
Now that we have a few professional opinions under our belts regarding our sweet Gwen, it has come our attention that not everyone knows what happened to her hair and why she is bald. First, I’ll start by saying that our goal is not to draw attention to the issue and we certainly aren’t seeking pity. Gwen is quite lucky. When she was about 25 months old, she shed about 90% of her hair in a matter of weeks. She has a condition known as Alopecia. Simply put, it is an auto immune condition that produces too many T cells (T cells are good cells that play an important role in immunity) and for whatever reason, these cells attack the hair follicle and tell it not to grow hair. It is as simple as that. 
This will not affect her health or quality of life. Alopecia is not fully understood and there is no cure. For some, the condition will go into remission and the hair will regrow. For others, they may never have hair. There is no telling what the future holds for G, but one thing I do know is this…she is strong and beautiful and because she is dealing with this at such a young age (and knows no different), my hope is that she will accept herself as no different than anyone else moving forward. We are currently trying a very mild topical treatment to see if it simulates growth. So far, we haven’t noticed much of a change. Moving forward, I doubt that we will opt for further treatments as they aren’t always successful and can cause some discomfort. There is new research out there regarding a ‘cure’ for alopecia that is getting much buzz. Let’s hope that in our short lifetime we can make some progress on understanding the condition! Today she is bald, tomorrow she may grow hair…or she may never. We are hopeful and aren’t concerned about her one bit. If and when the time comes, there are options for wigs and hair pieces, but for now, we are taking it one day at a time and just trying to survive toddlerhood 😝 The hardest part of dealing with Alopecia as a parent isn’t knowing that she’s bald, but rather when strangers stare even though we know that humans are programmed to notice what is different. It will continue to happen and that’s okay. It’s really not a big deal. But please feel free to ask us questions and talk about it. We’re very laid back and friendly (we don’t bite…usually) people who aren’t shy to discuss her condition. As of now, we pray for her health and wellbeing, for the potential of hair growth and more importantly, for everyone else who isn’t as lucky as Gwen. We hope this finds you all well and again, please feel free to reach out or ask questions. It’s a confusing condition and not even doctors have all of the answers. Besides, who needs hair when you have this girl’s personality! #bold#strongwilled #sass God bless.
January 9, 2018 (Katie – Gwen’s Mom)
Well…we don’t often post about Gwen’s alopecia because as we’ve said from the get go, we never wanted to make it a “thing.” BUT…there have been some cool things happening in our neck of the woods and we’re feeling too excited and grateful not to share.
We have always said that we would never push having a wig on Gwen as she’s perfect the way she is. Lately, she’s been more verbal about her condition. Frequently talking about how she’s bald, and saying that princesses aren’t bald. She looks in the mirror and rubs her bald spots and frowns. She has had a harder time accepting compliments. Because she is just 4, it is difficult trying to explain alopecia and what that means for her. We decided to have an open conversation about the idea of trying on hair…more for fun than anything else. We were amazed by her positive response and her desire to try on some hair.
Not sure how it would go, we reached out to an organization called Children With Hair Loss 
(thank you Erin Brick and Maureen Wolak for telling us about this group)…located just south of Detroit. They work with children of all medical conditions related to hair loss…mostly alopecia. We doctored up our application, sent it in…and if I’m honest…expected to hear nothing or maybe something months down the road (shame on me for that). AN HOUR LATER…I received a phone call from the founder herself. She spent a half hour on the phone with me, talking me through things about their organization and talking about alopecia. It seemed too good to be true. It happened so fast, the opportunity seemed perfect and the owner was one of the kindest people I have ever spoken with. After hanging up the phone…we only had to wait 3 days (the weekend!) to be seen and fitted for a wig.
Gwen had her first appointment today. The whole team greeted her at the door, knew her by name and spent the morning with her trying to find the perfect hair piece. Ultimately, Gwen’s little head is too small, so they are custom ordering a wig. While we wait for that to come in, they gave her a hair band…a band of hair…she will have to wear a hat with it, but it is something for her to wear and get used to while we wait for the real deal.
If she wears it…great. If she doesn’t want to…great. But Children With Hair Loss makes it possible for every child to have one wig per year, up until the age of 21…FOR NO COST to the family. We were blown away. Typically…wigs cost about $5,000 each…with no coverage. If Gwen wants to, she will have multiple wigs throughout the course of her life, without us having to scrape our bank accounts. It is truly a blessing to so many families.
We weren’t sure how Gwen was going to react today, but we knew, if anyone was going to go in with a spitfire posititive attitude, it would be her. And..she was awesome. Totally awesome. She didn’t like the first several wigs she tried, but when she found the one she liked she said “this is it!” She has been telling us for the last few days that she wants rainbow hair. We tried to explain that they probably didn’t have rainbow hair and she wasn’t okay with that. We made a deal that she could wear a rainbow shirt to get her hair…and that worked Phew
This whole experience is a little surreal. Honestly, she’s adorable with hair, but it will take some getting used to. We’ve always known her with really short hair, or no hair. Being there today and hearing about so many others just like her brought a sense of peace to all of us. Gwen is SO lucky compared to other kids. She doesn’t have a terminal illness and she isn’t fighting for her life.
While we were there, they played with her hair, made her (and us) extremely comfortable, we shed a few tears, there were lots of hugs, smiles, education and just all around kind people. They even offered us lunch from their crockpot They said, once you walk through these doors, you are part of the family (pull at my heartstrings why don’t ya).
Another SUPER AWESOME thing – we mentioned how she grows hair in the summer and it falls out in the fall and winter. It’s cyclical in her case. We mentioned how our dermatologist recommended a laser therapy (no-invasive, non-harmful) – basically a UV ray treatment to stimulate her follicles. But the treatment is usually not covered by insurance, would require us to drive her downtown twice a week…indefinitely…INDEFINITELY! Again…we’ve never wanted to make this a thing. So it wasn’t really something we explored. She stopped us in our tracks while talking about it and she said “I can order the same exact device they would use, and order it at cost for you…you can use it in the comfort of your own home, once a day and it will save you thousands of dollars.” (insert my jaw dropping on the floor). So..we’re obviously ordering. Her hope and ours is that perhaps this stimulates hair growth and perhaps she won’t need a wig! Who knows. But so worth a try.
Today was all around a very emotional day. Full of so many highs. As parents, we’ve tried everything we can that was safe over the last several years to “control” a condition that is well…uncontrollable. It was a blessing to meet this group today. To remind us that we’re not alone..not even close. It is uncontrollable. What works for some, doesn’t work for others…and to do what we need to do with the circumstances as it unfolds. So today, that was trying on wigs.
In 3 months, she will have her real wig to style, curl, ponytail and braid She can even get a haircut. She’s wanted to get one for years. Something as simple as a haircut can bring a smile to this girl.
What Brian and I gathered from all of us is that…We were lucky to have found this organization. Gwen is beautiful regardless of hair. There are REALLY good people in this world. Life is much simpler than we make it. And…we need to support those organizations that make life a better place. We are asking you to consider making a donation to Children with Hair Loss…to keep the organization strong. They run on a few employees and TONS of amazing volunteers. They put wigs on over 500 children each year and they do it with giving hearts. Below is the link to their website where you can make a direct donation. You can also donate in several other ways. Donating hair, sponsoring their annual gala, etc.
Thank you for considering a donation. Now….it’s time to get back to braiding! #GOGWEN
https://www.childrenwithhairloss.us/dona…/monetary-donation/
April 20, 2018 (Katie – Gwen’s Mom)
Thank you God, for the strength you’ve given to Gwen.
After just one day with her wig, Gwen had her first unfortunate incident at her dance studio. Gwen was all dolled up and thrilled about her new do for pictures. (Which by the way, there are too many friends to tag but I had several people come to our rescue yesterday and help make her a beautiful bun..so thank you all!)
A little classmate of hers saw Gwen walk in with her wig for picture day…she ran right up and yelled very loudly in her face “it’s a wig! It’s a wiiiiggg! Look it’s a wiggggg!!!” (Of course there were tons of people in the studio…tons…all staring) She touched it aggressively and before anyone had a chance to intervene and explain, Gwen ripped it off and ran away. The little girls Mom wasn’t there last night and her grandma was filling in. I know this mom and girl and they are very sweet people. It wasn’t the fault of the little girl and the Grandma was an innocent bystander (maybe she could have chilled her out a little but she didn’t…perhaps she didn’t know what to do either). The night went on and Gwen proudly took her pictures without her wig. 
I didn’t push it. I just comforted her and let her know that she could do whatever she wanted. She was having fun and almost seemed unaffected by what happened.
When we got home, we went right upstairs to take off her costume. She said “I don’t want to go to dance ever again!” She was very clearly hurt by the expression on her face. She was starting to unravel. I’m glad she let it out instead of hold it in. Thankfully, Brian walked in at that very moment and we had a heart to heart with her. We explained that her friend didn’t understand and didn’t mean to hurt her feelings. We explained that a lot of people her age won’t understand unless we explain. We reassured her that we loved her, she is beautiful and that she can wear it or go without it. It’s just an accessory. It ended beautifully and she was happy. We hugged the heck out of her before bed and moved on.
B and I know that we won’t always be able to protect her from things like this happening. We both know it will get better as the kids grow up and understand more about her condition. For now, we ride the wave and thank God every step of the way for His wisdom on how to navigate the day to day.
Today, per her choice, no wig. And I (we) couldn’t be prouder.
May 26, 2017
Remember when she wore her wig to the dance studio for pics for the first time and had that bad experience and ripped it off? Well, I’d say she rocked her pictures 💪 #toughchick #whoneedsawig #innerstrength #beauty #gogigigo
THIS FROM MAUREEN:
052818
Children with Hair Loss http://www.childrenwithhairloss.us/
has been amazingly supportive to Gwen and her family. Whether Gwen chooses to wear a wig or not, please be sure to give press to this organization. They are a non-profit and exist through donations. There is a big Children With Hair Loss charity Ball coming up in November, as well as many other ways to participate – from donating hair to donating funds. I believe Gwen will participate in the fashion show at the November Ball in Livonia, Michigan.
Maureen
I have always seen things from this perspective.
“What an absurd thing it is to pas over all the valuable parts of a man, and fix our attention on his infirmities.” (Joseph Addison)
I guess that’s why I have no problem seeing past baldness, or lack of limbs (as in the case of Owen – a story for another time). There is pure gold in those fields – if only you look for it!
OWEN
Funny how things happen. After meeting Maureen and sharing my focus for this article she shared this story of Owen with me. After talking with his mother Casey Somerville she gave permission to include them.
Owen is the natural child of Casey and her husband. In addition to Owen he now has two siblings, 
Shawn (4) and Ella (3) who are biological siblings that the Somervilles adopted through foster care.
This from Maureen:
When I was a young mom I appreciated being able to go to a Bible study and know that while I was being enriched my children were well cared for by volunteer women in the church. I made up my mind that in my later years I would pass this blessing along to other young mothers.
Now a grandmother of five, this year I volunteered to watch babies and preschoolers in the MOPS (Mothers of Preschoolers) held at my church. This required a commitment of every other Thursday from September through May. Having young grandchildren of my own, I was adept at diaper changing and playing on the floor with little ones. What I wasn’t prepared for was Owen.
Owen’s mom arrived at the nursery door with smiles holding a charming little boy of about 15 months in her arms. The first thing I noticed was that Owen was missing an arm. The second thing I noticed was that Owen was missing his other arm. As mom came in and sat on the floor with Owen to get him (and us) comfortable with him, I realized that actually Owen did not have typical legs either. He had a fully functioning foot on one side with a shortened leg. His other leg sported a foot that was, for the most part, turned backwards. I had a choice to make. Would I cry and fuss over him as if he was an invalid, or would I embrace Owen’s differences and work with them. I chose the latter.
What an incredible blessing it was to watch Owen blossom over eight months. He, like the other 15 toddlers we watched, was tentative about being in a new situation without his mom. As time progressed Owen played with toys and was sure to scoot into the midst of the action. Watching the excitement on his face and the way he wiggled his shoulders and feet every time we blew bubbles was delightful. He learned to climb simple soft stairs, play basketball by tucking the ball between his chin and shoulder, fill and dump trucks with toys, and cuddle with his caregivers. He taught us a lot.
The other children were interested in Owen and the different ways he moved things around with his foot and his chin. They were taking off their shoes and trying it too. They weren’t nearly as good as he was with it. After all, he’s had practice!
None of the caregivers are trained professionals. We are all just women (mostly grandmas) who want to help.
If you’ve ever thought you were getting too old to make a difference in someone’s life, think again. As you begin to pour out to others, you may just have the opportunity to be blessed by an Owen in your life. I look forward to hearing great things about this little fellow in the years ahead.
-Maureen Wolak
This from Owen’s Mother Casey:
Today we had a special little encounter, nothing extraordinary and actually pretty common in our world, but one extra sweet moment that I witnessed for the first time and a great reminder.
We were all out dropping off school paperwork for Shawn and Ella. There was a small activity table really close to the ground, so of course Owen wanted to get out of the carrier to play by his brother and sister. I let him know he’d probably just be able to reach a couple of the things on the table and he was good with that.
A sweet and curious four year old started with questions about Owen’s differences, which I happily 
answered. The funny thing about toddlers is that it usually takes about 5 times of asking the same question for the answer to fully sink in. The mom openly apologized for the questions to which I quickly responded, “you have nothing to say sorry about! Kind questions are always welcome, they are great and I’m always happy to answer them.”
This all happened in a matter of just a couple minutes and big sister who was 8 was observing it all very quietly. Owen found an area of the table that he wanted to play with but couldn’t reach. Without even skipping a beat, not a moment of hesitation, 8 year old sister scooped Owen up onto her lap so that he could play. They were just a happy little pair and all of the kiddos sat quietly and played while I finished what we came for.
So, if mom had truly stopped her little one from asking questions or had shushed her or had made her daughter’s feel like there was shame in Owen’s differences, would big sister have been as eager to jump in?
I’m not sure, but I’m leaning toward no.
+ Kind & Curious questions are always welcomed
+ Finding a similarity that a child can relate to always helps! Our kids are all way more alike than they are different.
+ Differences (any differences) are always discussed positively, there’s never a space to talk about what’s “wrong” with someone. Everyone has differences, some are just more obvious than others.
+ Intentional chats as a family about differences should be happening frequently in your home. So that when you’re face to face with someone that is physically, socially, cognitively, culturally different than your child they aren’t shocked and fearful.
+ Everyone needs a helping hand at one time or another, everyone!
+ Questions, play and finding similarities dispels fears and creates commonality for friendships and kindness to grow. Don’t ever apologize for that and don’t you dare ever try to stop it!
A few weeks ago we had a young boy, probably 8 also, who walked away from our chat saying “He is 
so awesome!!”, and I got to have that conversation without mom around. Sometimes as adults we just screw things up and make simple things way more complicated than they need to be!
I hope these encounters help shape your children, but even more so I hope how we handle these situations as a village gives Owen pride and confidence in sharing about himself!
#differentisawesome #morealikethandifferent #ourwordsmatter #uniquelyperfect
Support Organizations:
#limbdifferenceawareness
https://www.shrinershospitalsforchildren.org/st-louis/hip-knee-and-leg
https://www.shrinershospitalsforchildren.org/spokane/limb-hand-and-toe-disorders
