One year older and maybe a little wiser - Vascular Birthmarks Foundation Forum
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Old 01-05-2013, 12:17 AM
finnhd finnhd is offline
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Default One year older and maybe a little wiser

Hi all,

My baby is turning one this month and I couldn't help but reflect on the last year of ups and downs. I hope that my reflection assists other parents going through the same thing and feeling the same way....it's a long post so thanks for reading
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When my son was born with a birthmark covering the right side of his eye, nose, cheek and lip I was devastated. (Then felt guilty.) How superficial, I had a healthy baby boy. I’ll teach him how to cope, how to deal with schoolyard insults…he’ll be humbled but confident, empathetic but not self-pitying. Then I learned that his birthmark could be associated with a number of health issues. Glaucoma, Sturge Webbers Syndrome, Hypertrophy that could affect his speech, eating, breathing or cause further deformities. (Devastation…Again.) Did I do something wrong during my pregnancy? (Guilt…Again.) His older brother wondering why there have been so many tears since this new baby arrived. (More Guilt.)

The first doctor said that the birthmark would eventually fade. Mobs of well-intentioned strangers, family and friends told us the same thing. A google diagnosis told us otherwise. Port wine stains don’t get better on their own, it actually darkens and thickens with age. (Fear). The second doctor told us that treatment could wait. The research told us early treatment is crucial to a better outcome. (Enter new feelings of frustration and anxiety topped with a dollop of helplessness.) Using my graduate student ID to access medical journals, my husband and I spent much of the next year reviewing everything we could find on vascular birthmarks and we used this knowledge to argue early intervention: advocating, questioning and consulting with ophthalmologists, paediatric dentists and dermatologists. One feeling I wanted to avoid was regret- I didn’t want to look back and think I could have done more or something sooner.

When one doctor said my son was fortunate to have parents with a medical background, I knew we were doing our job as parents. Or…. we were going overboard. Neither one of us have a medical background. Hmmmm, maybe we should have dumbed it down a bit before we objected to the use of a 532 nm Gemini laser over a 595 nm V Beam. Oh well. In between celebrating milestones and waiting for appointments we watched for signs or symptoms that signalled a health problem. Sometimes seeing things that probably weren’t there, sometimes so confident that nothing at all is wrong. Repeat full circle.

I can’t lie, life seemed a little more difficult with a birthmark- trotting around the province for specialist appointments (feeling apprehensive), trotting across the country for laser treatments (feeling tired), the post treatment bruising (feeling responsible) and feeling the need to explain the birthmark or the bruising…even if no one asked.

Fortunately though, most times, things were normal. Washing dishes, washing children, teaching new skills and taking far too many pictures. Along with a birthmark, my son was born with bright blue eyes and red hair. People would flock and swoon, I stress- FLOCK and SWOON. (Sweet- feelings of happiness and pride!!!) Of course he appealed to the grandma types who would saunter towards every baby they saw but my son’s red hair, blue eyes and round chubby face would attract the most unlikeliest of cheek pinching baby talkers. Grumpy old men, busy businessmen, one biker and even the occasional self-important teenager. “He. Is. Beautiful.” they would say. I thought so, but every mother thinks their child could go Gerber…were people just saying that? Surely they could see his birthmark, are they overcompensating, trying to making me feel better? (Guilt. Back again…sh*t...will I ever get rid of that feeling???) Wait, of course he was beautiful. (More pride, more happiness) More love than ever can be put to words. Because not only was he a beautiful baby, he had an intense curiosity, a pleasant demeanour, a laid back personality and a belly laugh that all added up to be the makings of a beautiful person.

Well one year, 10 treatments and (so far) a clean bill of health later there is still an annoying mix of feelings that can change with the wind, but fortunately, a few lessons learned along the way:

First- own my feelings. I sure as hell can’t do anything about them and, besides, they change so frequently I’ve decided to just ride it out until a new one comes along. Having love as a constant backdrop feeling makes the crappy ones a little better. Maybe it’s okay to hate a flaw, especially when that flaw can cause so much worry. Maybe it’s not. Maybe I’ll know the answer to that question in another year. I’ll report back. Moving on.

Second- my baby, my boy IS beautiful and people see it. There is no question about it. It’s a fact: bright eyes and bright smiles outshine dull discolorations. And it’s not just discolorations. I remember when I was a girl I admired an older girl who lived on my street. I thought she was so beautiful that I remember taking a drinking glass and trying to imprint the same circular scar on my cheek that she had on hers. Maybe she hated that scar, maybe it didn’t bother her, but I do know that I saw it as part of her beauty, not as an obstruction to it. I wonder if telling her that would have made any sort of difference in her life. I’ll never know. But one thing is for certain- my son will roll his eyes when I tell him that story. But I’m going to tell him anyway, because it’s true. Even if no one is going to go home and paint half their face red, I want him to know that anyone who is worth his time will see him as a whole and anyone who chooses to break apart that whole by concentrating on his birthmark is just trying to break his spirit. I’ll teach him that there is real power in not allowing that to happen.

Third- I cannot control the future of his health or his appearance… but guess what? No parent can. Whether it’s a stray hockey puck to the head or an eye lost on the corner of a table, no parent can prevent or predict the health of their child or their appearance. All we can do is support each other through the insanity of ups and down called parenthood and teach our children that whether they have a big nose, crooked teeth or a birthmark on their face, the real beauty in a person is how they handle the people who have not been taught that you shouldn’t focus on only appearances.
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Old 01-05-2013, 01:05 PM
missy missy is online now
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What an awesome post! Thank you for taking the time and effort to come in and write it all out. It will help others, other parents and others struggling with their feelings about their own birthmarks.

Thank you, again.

Missy
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Old 01-07-2013, 04:55 AM
kelmel kelmel is offline
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Thank you. Reading your post, I felt as though you know my own feelings.*

My son is nearly 3 and I also keep coming full circle in my thoughts and emotions. Do I wish this had not happened? Or maybe it will give him an inner strength that he might not have otherwise had. It has taught our family to respectfully notice differences in others without judgement. My 5 year old has a greater understanding now that people come in all shapes, sizes, and colors that he never would have without his baby brother and the birthmark that is a part of our lives.*

One of my proudest moments was when another child asked why my son's face was pink. Before I was able to respond on his behalf, he answered "My face is pink. I have a birthmark." And with a smile on his sweet pink face, he ran off to play. He is fine with his appearance and I am too. I know he will likely not always be able to exude such confidence, but if he can at 2 I think it is likely to continue.*

Thank you again for sharing.*
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Old 01-26-2013, 06:45 PM
ashleymarie4 ashleymarie4 is offline
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I cried when I read this! It's like you put my own thoughts into words. Thanks for sharing! My son is 15 months old with a facial port wine stain. It is hard to learn to embrace what life throws at you...but my son is beautiful and people are drawn to his funny personality. I know that he will be fine in life despite what some ignorant people may say!
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