Tuesday, January 27, 2015

Being the voice for my son

As parents we are wired to nurture our children. To guide them. We offer a place where they can grow and become their own person. Until that time, it is up to us as parents to be our children's voice. It is up to us to speak up for them, advocate for them, and do whatever it takes to be sure that their well being comes before ours. It is my job, as a mother, to be the voice of my son.

It was back in July that I had taken my son, Chase, to get his hair cut. Chase has light brown hair and in the summer he gets blond highlights. When I let his hair grow out the kid has beautiful, thick hair I can only dream of having. While getting his hair cut Chase's hair dude (sounds better than hair dresser) noticed he had some white hairs. I had never noticed this before. It was only a couple of strands. He showed me and said that sun had probably bleached his hair. At the time I shrugged it off. It sounded like a perfectly good explanation.

Over the next couple of months I was noticing that it was not just one or two strands of hair that were white. Chase now had several strands of hair and it was becoming more visible. By the end of September my mommy gut feeling was telling me that it was time to find out why my son had white hair.

I did the dreadful thing I tell clients not to do (I am a veterinary technician), I went on the Internet and started searching. Google would surely tell me what it is that I needed to know and settle my mind. That was not the case. There actually was not much information to be found about children with white hair. The information that was there I certainly did not like reading. I decided that I would call and make an appointment at his pediatricians office and go from there.

We were unable to get in with our regular doctor and were scheduled with someone else. I was not feeling anxious about the appointment. I just wanted to be sure that as my son's mother I wasn't missing anything. I am not someone who rushes my kids in as soon as they sneeze. I had watched this for a couple months and my son had been otherwise a healthy and happy toddler.
The doctor we saw took a look at my son's hair, snapped a couple pictures with his cell phone, then asked what I wanted to do about it. He glanced at the internet right there in front of me and then stated that I probably read what he read and what is it that I wanted to do. I was taken back by this. Here I had come to get some guidance. I was not looking for or expecting to get answers right away. I thought maybe whomever I saw would say they wanted to do a little research, maybe make a few phone calls, then get back to me. Instead I sat here with this doctor who was telling me to: "Just ignore it". This was not said to me only once in the short time he spent with us, but twice. There were other aspects of the appointment that were unprofessional and disappointing that I am not going to even get into. I left that appointment with no answers. The only thing of comfort was that this doctor would set up an appointment for dermatology, yet we would have to wait to find out when that would be.

I left their feeling defeated. I had no answers. Now I was worried. I just wanted to be sure that I was not missing something. The next couple of days I tried to process the entire appointment and figure out what I wanted to do. I called the office and was able to get my son in with his regular doctor for a second opinion. I received a letter the day before our appointment that we did have an appointment with dermatology...in three months!

This next appointment went much smoother. We talked about the issue. We devised a plan. There was research done and some ideas of what this could be. The fact that my son had this white hair was rare. The good thing was he was healthy. To be sure there was nothing auto immune going on or something internally we could not see on physical exam, labs were ordered. My son rocked getting his blood drawn. He never flinched, never cried, and was happy to leave and get his chocolate milkshake that was promised to him. Chase's blood work came back normal. I was relieved! Our doctor then contacted a pediatric specialist who put her in the direction of Dermatology. We received a phone call from Dermatology moments after our Doctor had spoke with them and they asked us to come down right away for an appointment that had opened up. In the car we went and drove into town, hopeful and anxious.

Chase was examined by the resident and the doctor. Finally, we had a diagnosis! My son has Vitiligo. There are a couple of different types. Chase has localized Vitiligo. "Vitiligo occurs when the cells that produce melanin die or stop functioning". Some people have it on their skin, others hair. One out of a hundred people have this, as we were told by the doctor, some people don't even know they have it since some spots can be so light. With some research and talking with other parents and people who have this condition, it can be different for each person. His condition will likely just remain localized in his hair, yet there have been people later on in life that have developed spots on their skin. For now what we know is that for Chase, he is just going to have awesome hair. I like to say he is going to be that hot boy with the white streak in his hair that all the girls are going to drool over.

We talk about how his hair is special. He knows he has Vitiligo. I even caught him singing and doing a dance a few weeks back about it. I do not ever want him to feel ashamed about his hair. Kids are not kind these days and bullying in the future is what I want to not happen. If it does, I want him to not care and be proud of his awesome hair! I want to instill self respect and pride in my son. I want him to love every aspect of himself, even if it is different.

This experience taught me that as parents we need to speak up. We need to always trust our gut. He is my son and I knew that there was a name for his fabulous white hair. I knew that we could find an answer. I needed to be my son's voice.

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