Lessons Learned

By Pascale Wowak
Web Exclusive – September 10, 2007

baby with hemangiomaWhen my baby daughter was two weeks old, I noticed a red dot on her torso and another one on her forehead. My husband proclaimed them to be moles. I wasn’t so sure, and quickly sought the opinion of our daughter’s pediatrician.

“Hmmmm,” the doctor said as she said as she looked at them—over and over again for what felt like the longest time. It was the kind of “hmmmm” that seemed to be saying: “I’m stalling because I know what this is but I don’t want to scare you so I’m going to triple check and take my time figuring out how to break this to you.”

When she finally turned to me and said, “These appear to be hemangiomas,” I gave her a blank stare. She explained what they were and told me not to worry about them. She’d evaluate them again in two weeks.

I, like any other neurotic and anxiety prone mother, promptly went home and scoured the web. I saw pictures of baby’s faces completely covered, swallowed, and ultimately disfigured by huge red masses of exposed blood vessels. I found these images disturbing and frightening. I looked at my daughter and cried—cried so hard I could barely breathe. Then I decided to calm down and really examine why I was so distraught. Hemangiomas are bundles of blood vessels gone haywire: instead of being under the skin they take over the upper layer of skin, and grow and proliferate at astounding rates. They are considered to be a type of birthmark even though they aren’t apparent at birth but rather mysteriously appear at about two weeks of age. To this day, their cause is completely unknown.

For the next several weeks, I stared at her tiny red dots all day, every day. Obviously, her older (two-year-old) brother kept me very busy and distracted, but the hemangiomas were all I could think about when my brain wasn’t tied up with his needs. We scheduled an appointment with the premier, internationally-renowned specialist handling these cases—who happened to be a mere one hour drive away from our home and, miraculously, covered under our insurance plan.

As expected, the earliest she could see us was three months from the time of my call. In the meantime, I watched in horror as they grew and grew and grew. My fears of it taking over her entire face were cemented when it would literally double in size overnight. I started to measure them every day and was appalled to see them change so drastically in a mere 12 hours time. By the time she was three months old the one on my daughter’s forehead was about the size of a quarter—relatively large on the scale of her teeny-tiny little head. It was raised, and a vibrant reddish-purple color. Against my daughter’s very fair skin and blonde hair, it stood out in sharp, striking contrast.

I started thinking about my past reactions to parents with children who have disabilities. I had always felt a huge degree of sadness and empathy for parents whose children were handicapped or disfigured. I couldn’t imagine their disappointment. In my attempt to be polite and not make it appear as though I was ever “staring” at their children I’d always shift my gaze away from them so as to not offend or make the children feel any more self conscious than how they must already have felt. I honestly (and ignorantly) believed that deliberately not looking at them was helpful and polite.

Now I was a parent walking around with a teeny tiny baby with a massive red disfiguring growth, smack dab in the middle of her forehead. Always the astute observer (having spent a decade as a police officer) I couldn’t help but notice all the quickly averted glances around me. The awkward and furtive shuffling away from us, and people giving us wide berth. People looking down, up, left, right—basically anywhere but towards me and my baby daughter.

I was hurt and offended. Could they not appreciate how adorable she was: her perfect little nose, cute ears, pursed lips? Was the hemangioma really all they could see? I was angry, I felt alienated, and I was at a complete loss as to how to handle it. The emotions were all so raw and close to the surface for me. I was still struggling with dealing with my own set of issues (including my own vanity) in relation to her possible future looks. I was coming to grips with the reality that she would not look “normal.” While part of me wanted to go up to people and ask them why they looked away, I had my own discomfort and responses to think about.

So I managed to handle the averted glances as best I could. But then the comments started coming, and rocking the fragile foundation that I had built over the past few weeks. The little old ladies were the most cruel and heartless of the bunch. “Such as shame,” they would say, “she could have been so pretty.” When I was out with my toddler son and baby girl they’d look at my boy and say to me “Well, at least you have one child who you can take nice pictures of.” That these comments were made in front of my children infuriated me. It was mind numbing. What could possess people to say these things? Out loud! Why didn’t anyone just ask me what “it “was? Didn’t anyone care about the little girl behind the hemangioma? Didn’t anyone want to know how she was eating or sleeping, just as every stranger had felt compelled to ask me when I walked around with my son at that same age? Did her hemangioma suddenly take all of that away? Did it have that much power as to affect people’s ability to simply see a newborn baby?

The line was crossed when people started accusing me of child abuse. As in “did you drop her on head?!” Granted, a four month old can neither crawl nor walk—so a self- inflicted head injury would indeed be unlikely—but the question just seemed ludicrous, not to mention rude.

I started to respond to such ridiculous inquiries by stating: “Actually no, it’s a tumor.” I’d then watch the enquirer recoil in shame and guilt. My answer was, in fact, a half-truth: hemangiomas are also known as “vascular tumors,” but they are totally benign and non cancerous. Despite this, I figured if people were going to be ignorant and rude, I wouldn’t worry about the semantics of my answer. I also admit feeling somewhat entitled to derive a crumb of “satisfaction” by making them feel bad. Of course, by making them feel bad I was making myself feel better for “rescuing” and “protecting” my daughter from their insidious accusations. “Serves them right,” I would say to myself over and over again, justifying my behavior.

During this time, I couldn’t imagine what parents whose children are even more afflicted must go through. It pained me just to think about it: how do other families manage this day in and day out? How do they handle having the person who is their child completely overlooked and instead having the affliction define who their child is? My heart ached for them as it did for my daughter and our family.

Her hemangioma suddenly stopped multiplying in size just before she turned one, as the expert had predicted it would. It took another year before her hair grew out long enough for bangs to cover it. During that time it also began to involute (flatten a bit and lose some of the vibrancy in color). It took me nearly that long to not feel so vindictive towards people who made ignorant comments. It took me several months to realize that my reactions to other people’s reactions were just as important and influential on my daughter as theirs were. I stopped turning every encounter into a long technical explanation about hemangiomas. I started simply calling it a birthmark and leaving it at that. I no longer felt compelled to explain it all ad nauseum to any stranger who gave me a sideways look or double take. I stopped making a big deal out of it so that my daughter would know it wasn’t a big deal.

I realized that the more I saw my daughter for the beautiful little being she was, the more I encouraged others to follow suit. I realized how important it was for me to just see her and only her, for the beautiful being she is. I realized that when that shift occurred in me I was able to first and foremost see her glow, her spirit, instead of her hemangioma. I was fortunate to be surrounded by loving friends who never once let the hemangioma affect their relationship with her, and that helped me tremendously.

During this time, I also made a concerted effort to adjust how I now handled any encounters with children suffering from disabilities or handicaps. I no longer looked away. In fact, I will never again look away. I will always first look at the mom and smile at her to show her that I too find her child to be a beautiful little soul and perfect in every way. What I wouldn’t have done for someone, anyone, to have given me that universal look of “oh my, your baby is so cute”. Having experienced that with my son, I felt the penetrating loss of such feedback with my daughter. What healing power that would have had for me during such a fragile time of adjustment! Because of this, I make it a point to address the child just as I would any other child—yet without pretending to ignore the obvious.

Now, when my daughter runs and the wind parts her bangs, her hemangioma is still clearly visible. Yet no one comments or stares anymore. It looks like a bad bruise slowly healing. What two year old doesn’t at some point in time have a large bruise on his/her forehead? I’m amazed at how different people are towards her, now that it is most often hidden by her hair. And although her hemagioma will continue to involute and possibly even disappear entirely, the marks left on my being will never go away. In the end, my daughter’s condition is probably the only reason I was able to come face-to-face with my own deep discomfort around handicapped children. My daughter’s hemangioma forced me to face one of my deepest fears (having a disabled or disfigured child). She taught me how to grow in ways I never could have on my own. Sometimes the life experiences that end up leaving no visible mark behind are the most life altering and have the greatest impact of all.

The other day, shortly after her second birthday, my daughter was looking in the mirror and noticed, really noticed, her hemangioma. She asked me “What’s that?” I told her it was her birthmark and that it helped make her special and different from everyone else. She asked me if I had one like hers and I said no. She asked me if her brother had one like that and I said no. She smiled the brightest smile and said, “And mama, look, it’s my favorite color, it’s pink!”

Pascal Wowak is a professional photographer and mother of two, Gavin Marcel and Eliana Sofia. She lives with her husband and children in Ben Lomond, CA. Pascale’s photography work has been published in various magazines (including Mothering). Her website is www.fabphotos.biz .

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