Lessons From My Daughter With a Facial Port-Wine Stain Birthmark

The first time I can recall seeing someone with a facial port-wine stain birthmark was when I was pregnant with my daughter, Crystal. I was in a department store shopping for baby supplies for this new little one who was going to be entering our world soon. When I saw the lady with the birthmark, I remember thinking, “I’m so thankful my 6-year-old daughter, Amanda, is healthy and doesn’t’ have anything like that.” Little did I know the little baby I was carrying would have the exact same birthmark. Now, I am so ashamed that I could not look past the birthmark to see the beautiful woman in the baby aisle. I’m certain she is loved and respected by many people and is making a difference in her circle of friends and family.

When Crystal was born, we noticed a little bit of additional pinkness on the left side of her face. We didn’t think anything about it at first, but within a few hours, it became increasingly darker. The pediatrician who did her first baby check while in the hospital came in to see me when I was alone. His words were curt, sharp and his bedside manner was extremely in need of improvement. He only offered medical terminology to explain the birthmark and was not patient when I asked for further information. He said something to the affect of, “She has a birthmark, there’s nothing that can be done about it and you’ll have to deal with it.” He left the room and I never saw him again. It should go without saying that I looked for a different pediatrician for Crystal.

Once I found a new pediatrician, we began talking about options to lighten her birthmark. Since this was over two decades ago, the information about port-wine stains was limited. The technology to treat these birthmarks was being developed, the specialists that we saw made it sound as though with just a few pulsed-dye laser treatments, her birthmark would barely be visible. In my excitement to see what she may look like without it, I asked a co-worker who worked with computers if he could digitally remove her birthmark, so I could see what she’d look like. Computer technology was quite different 26 years ago, so it took him a while to do it. He removed her birthmark, but she didn’t look like my baby. My initial request seemed harmless, but as I think about it today, I wonder, did I want her to look “normal” for me or for her? I am now ashamed I ever asked him to digitally remove the mark.

As she grew, my husband and I had many conversations about how she would adapt to the world. Would she be able to “fit in?” Would she be accepted by her peers? Would she be withdrawn and anti-social? How are we going to manage her growing up “different” from other kids? I am now ashamed that we ever questioned her ability to fit into the world. If you know Crystal, she is loved by so many people and her social life is much better than mine! Our concerns and thoughts limited our own ability to see her full potential. I am so thankful we never expressed those thoughts to her. As parents, it was (and still is) our job to encourage our kids to dream and see their dreams come true. Today, Crystal’s motto is, “Making a difference with my difference.” And making a difference, she is!

When Crystal was about 12 years old, someone told us about some makeup that a lot of burn patients and other port-wine stain bearers wear. It does a wonderful job to hide flaws and scars. I told her about it and she was excited to try it. I was too. Maybe a part of me wanted her to like it so I wouldn’t have to watch others stare at her when we went to the store or out in public (I am known to stare people down as they stare at her. Notice, that’s not in past tense. Crystal still catches me doing that today, even though she’s taller than me). She tried the makeup and was excited to show her “new look” to our extended family. On this day in the public, I was not looking to stare people down. I was more interested in how Crystal felt. She looked so different and I wasn’t sure I liked it. I was ashamed that I’d encouraged her to try it. She was comfortable in her skin, why couldn’t I be? I’m so glad she decided it was too much work, the makeup was too heavy, and she liked the way she looked without it. I wish my shame over how I felt melted away like the makeup did when she washed it off. But it didn’t. She was and is still today very comfortable in her own skin — her face is not flawed.

Even through my thoughts and actions, Crystal has become a self-confident woman. She can do anything she sets her mind to accomplish. She is considerate, loves others and shows compassion in more ways than I can count. I believe God made her different so she can reach people and show them love when perhaps no one else does. She can show them that they, too, are beautifully made. She confidently tells people that we are all different. Some people just wear their difference on the outside for everyone to see. She is using her difference to make a difference in so many lives. I am blessed to be her mother and would not change her for the world. I was entrusted with this beautiful baby and have had the privileged to watch her grow into a beautiful woman.

If you want to read more about Crystal’s story, visit her website:  www.crystalhodges.com. You’ll be able to read her blog and get to know her humor, fears, heartaches and dreams. You, too, will be encouraged by her difference.

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