Talking About Having Hemangioma: “What’s that on your head?”

The Emotional Side of Having Hemangiomas isn’t easy. I knew it was bound to happen, it’s life. I’ve just always worried about her handling any questions or concerns about it without me or her dad or her 4 older brothers. It’s something I’ve often thought about and brought myself to tears about because I know that not everyone will be sensitive and kind about it to her. Not everyone will understand and not everyone will take the time, they’ll just see and move on. Talking About Having Hemangioma is something I’m passionate about.

I’m talking about Victoria’s hemangioma. (Click on that link to read all of our posts)

Throughout the years I’ve talked openly about Victoria’s hemangioma on the blog. Before July of 2013, I didn’t know much about hemangiomas. I knew a couple of kids who had them, but that was it. I never researched them or took the time to discover much about them at all. When Victoria’s really stared to grow and get bigger, I decided the best thing for me to do was go to my blog and share our experiences. I had felt so alone and so scared when I first started our journey, so I knew if I could help one person out there… that would be good enough for me.

View Victoria’s Hemangioma Updates here on YouTube from the time she was a baby to present.

Putting it simply… a hemangioma is a birthmark often appearing as a rubbery, bright red nodule of extra blood vessels.
Talking About Hemangiomas

As this point Victoria’s hemangiona is flush to her head, but there is a discoloration of the skin and there is a wrinkling, too. She had developed ulcers when she was 6 months old on her hemangioma, so it added some additional scarring that she will likely have there forever. With her mane of hair, you can’t see her hemangioma immediately, but when her hair is up or her hair is wet, you can see it. It’s right there. To be honest with you, I forget about it – so when someone mentions something it always takes me a second and then I’m like, “Oh… yes. That’s her hemangioma.” I’m usually the one who speaks for Victoria and protects her against any questions or comments. And believe me throughout the years I’ve heard everything. I can’t believe the nerve of some people, but that’s neither here nor there.

This weekend while we were out and about a young girl asked Victoria, “What’s that on your head?” She didn’t say it maliciously, but – even so – my mama bear instinct kicked in immediately to protect and watch over Victoria. The girl was curious and pointed to it.

Victoria looked confused at first, but then looked at me and said, “Is she talking about my hemangioma?”

I just nodded, waiting to see what Victoria would say to the girl.

And in all honesty, that’s LITERALLY all she said to her… “My hemangioma.” She said it very matter-of-fact, almost like telling someone, “Yea… the sky is blue.” It made me smile. I knew the little girl had zero clue what a hemangioma was, so I smiled and said, “It’s a birthmark, honey.” And that sufficed the curiosity in seconds and off they went. That was it.

Ever since Victoria was a baby, I’ve always worried about what people would say to her about it. She’s a confident little girl, filled with zest and guts and energy. I’ve never wanted an ounce of that taken away from her. I never want her to feel that something is wrong with her by people commenting on something regarding her appearance. That’s what’s always worried me the most. When I saw how she reacted this weekend, it made me feel good to know that she handled it the best way she could at 4 years old.

She answered it. And that was it. Her hemangioma and its angel kiss mark will forever be part of her and her story. Never be afraid to have conversations with your children about things that they have or that they will experience. I’ve tried my best throughout the years to be as honest as can be with Victoria and her brothers about hemangiomas and how to react to people. We once had a girl tell my son that his sister was ugly. That broke me. That shattered me. She was a baby at the time and I think that incident and a couple of others have scarred me.

I’m proud of my daughter and I hope that she will forever be proud of her hemangioma and see it as a superpower. See it as truly… an angel kiss.

 

Talking About Having Hemangioma: “What’s that on your head?” was last modified: April 14th, 2018 by admin
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