And reading more about them, I found that Courtney had written a book about her journey in "discovering and celebrating Beauty in places you never expected". The book, "A Different Beautiful" by Courtney Westlake is about her journey being the mother of Brenda who has harlequin ichthyosis. This is a skin condition in which her parents passed on a mutated gene causing an air in her genetic code. "This mutation means her body does not produce a protein that helps her skin form correctly. Period. It tries to make up for it by producing skin much too quickly. This very rare disorder caused Brenda to be born with thick plaques of skin divided by deep, read fishers so raw that they look bloody in many areas."
Reading about Brenda's birth, I can imagine how scared Courtney was. It is scary to think that something is "wrong" during deliver your birth. I know that I was scared even when my son did not cry for 45 minutes after his birth. And Brenna's disorder was so rare that there was hardly any information for Courtney and her husband to research. It seems that most cases ended with the child passing away within weeks or months.
Courtney walks us through the next several years of a Brenna's life, sharing about how the Lord use this time to change Courtney's perception of beauty. And really not just beauty but changing her perception of normal. Because now her life seems normal to her but her normal is different from my normal and my normal is different from yours. However society wants us to think that there is one normal that we should all strive for. Courtney writes, "but labeling the way people look in their abilities as normal and not normal is such a dangerous game to play. Trying to operate our lives under the structures of what we believe is normal (and not) leads to minds and hearts that are closed off from wanting to understand, empathize, to feel and express compassion. Living this way means we can never learn to except and celebrate anything that is outside of our realm of normal. We can never fully appreciate the amazing unique that God has placed in this world."
Courtney's book really resides with me because I have a son that is different. My Moose looks the same on the outside but when you're around him for a while you can tell that he is different. He has autism, and while it is high functioning, it does create some barriers. I love the portion of Courtney's book when she talks about what to do when your child points and ask a question about a special needs child or anyone who is different. I know that my son may not have an outward skin difference like Brenna does, but he can throw some wild tantrums or say weird things.
What do we do during those moments? I know that my children have pointed at people in wheelchairs thinking they look like the X-Men's Professor X or even a bearded man who they thought looked like Obi-Wan Kenobi. "When your child points and tells you to look, I wish you would respond clearly, "yes look at that little girl. It looks like she's having so much fun playing, just like you are! ... When your child asks you… "Why does she look like that? "I wish you would answer honestly: "I'm not sure, but the way someone looks is an important. We all look different from each other, don't we? Just like you have curly hair and I have straight hair! I wish you would encourage your child to say hi and ask my kids names. I wish you would apologize without feeling ashamed if your child is offensive right in front of us… And above all, I wish you would talk about differences more often with your children. I wish you would read children's books about being different, and I wish you would positively and naturally converse about various kinds of differences – from wheelchairs to birthmarks, Down syndrome to skin disorders, and racial differences to wearing glasses." I couldn't agree more.
I don't want people to skirt around issues with my son or other special needs kids. These kids are going to grow into adults who are going to be around their entire lives. And I think the least that we can do is teach our children empathy and compassion and that differences are OK. "We want to teach our children that we are all different, not that Brenna is the "different one" simply because her appearance is noticeably unusual. Some people in the disabled community say that they are not here to be a learning opportunity for others. But I would argue that we are all constantly learning opportunities for everyone else, and especially for children…"
Too often the world is going to be cruel to kids with special needs whether it is their appearance or their behavior that is different. I've observed this when people stare, when kids don't include everyone, and when parents are ignorant or indifferent. Sometimes it really helps to walk a mile in someone else's shoes so that the world can be a nicer place to be different, to be who God made you to be. That is why I appreciate Courtney writing this book. Because we all need to get over Hollywood and Western beauty standards and realize that God has made so many beautiful people in different ways.
|While I was reading my copy of this book, Princess pointed at Brenna, the "baby," and wanted to kiss her. I think we could all take a pointer from babies and just be more accepting. Isn't this darling?|
You can follow Courtney on Instagram here.
Disclaimer: I received this book in order to write an honest review. All opinions are my own and may differ from others' opinions.