Lydia Joi

KALEB AND HIS STARS

It started with a lightening over one side of my son Kaeleb’s upper lip.  I kept trying to think if he had fallen, or if he had an allergic reaction to something.  I was that mom who used as close to natural everything on him from diapers to lotion to homemade paint, so being that he just started a new day care I assumed he had been exposed to something different.  Funny enough while I was looking at them as the culprit, they were wondering the same about me.  As the lightening increased, finally one of the child care workers worked up the nerve to ask me if he had had an accident or something had spilled on his face.  I realized that they were alarmed at the rapid change in colour of his skin, that is when I thought to myself should I be as well? 

Just to be sure we visited with a dermatologist, at this point me and my Dr. Google buddies were assuming that he had a very common infection (Tinea versicolor) that presented like this, I was just going for confirmation of my great diagnostic skills.  Instead, this doctor who specializes in plastic surgery, walked in the room and without making eye contact with me stated that my two-year-old had “Michael Jackson disease”.  I probed further as she realized that she should probably use the clinical term and told me it was vitiligo as she began writing a strong course of steroids to indefinitely apply to his face.

I was in disbelief, both at the impersonal treatment we had received and at the diagnosis.  How could she determine this without asking any family history, without touching him, without asking how it appeared?  Furthermore, was this the way to deliver this type of life changing information, by informing me that my son was going to become the new King of Pop?

 I left without the prescription and sat with a drinking box in the park for a very long time.

When I had gathered my composure, I sought out a valid second opinion.  I researched dermatologist who specialized in depigmentation and pediatrics.  I was fortunate enough to find one who exactly what we needed.  At this point the lightening had spread to a significant portion of his face and the upper part of his arm. We entered the doctor’s office and she sat and asked us how we were doing and what my concerns were, I knew I was in the right place.

We made a plan to rule out any underlying conditions, such as hormonal imbalances or allergies.  After talking a proper family tree we realized that a close family member had Hashimoto’s disease, which in her experience can actually be part of a familial pattern of vitiligo and other autoimmune conditions. All the while Kaeleb was blissfully unaware that this was an appointment for him.  After the doctor examined his skin patterns, he in turn examined her, investigating and comparing her freckles which he found fascinating.

While waiting for all of our tests results extended family members started asking more and more why his complexion was changing colour.  I was offered many home remedies and prayers that this would stop. When we went back to the doctor and learned that he had no underlying medical condition, I was thoroughly relieved.  Now to focus on the task at hand, ensuring that I kept both of our mental health protected.

 As the mother of a young Black boy in the Western world I had already been fortifying our minds and environment to be able to combat various forms of discrimination that is often experienced here.  We were in the height of the Black Lives Matters movement, and I was watching as society was coming to the awareness that Black bodies were often devalued.  Now my son would have an additional visual difference, I was terrified. 

I had heard about how many people with vitiligo were ridiculed relentlessly about their appearance, ignorant people comparing them to cows or asking if their skin was dirty. My mind was flooded with questions.  Would he be teased?  Would others accept him?  Would he dislike himself? Would I be able to handle how others treat him? Was I disappointed that this was happening? Was that wrong to think that? Was I strong enough for this??? The impact of this can be a devastating one on self-esteem and confidence.  Many children shrink away from social interaction trying to hide their “otherness” and many adults suffer depression constantly battling the judgment and lack acceptance from others. I didn’t want him to grow up to be an adult always chasing a societal beauty aesthetic that had completely omitted people who looked like him.

To stop spinning into this never-ending mental barrage of fear, I started to immerse myself in images of other people with vitiligo, studying their stories learning from their experiences.  All while blocking out the well-meaning unsolicited advice from people encouraging me to cover him up or to fly to overseas for “progressive cures”.   One day I decided to talk to him about what was changing on his skin, we ended up saying that it looked like he had captured the Stars and put them on his skin.  He was very pleased with this description.  From there on this was what we called them his Stats, and with it a powerful narrative of what powers came with them developed.

The fact that his vitiligo appeared so young was the best thing that could have happened.  Kaeleb leads me in emotional intelligence in embracing his skin.  There are always questions about “what happened to him” both from innocent peers and unaware adults.  We have learned to explain how normal this is for him just like freckles or birthmarks. There will always be others who are unaccepting, or unable to comprehend, my job as his mother is to teach him to value himself and to educate others without spending all of his energy trying to make them accept him.  This goes not just for his skin but all parts of himself.

I recently asked Kaeleb what he would do if he had the choice to make his Stars disappear.  With the wisdom of an old man he explained to me that he loves his chocolate skin, but he also loves his vitiligo and doesn’t want to choose.  I look at my son as a beautiful work of art that I am proud to have created.  His tapestry is ever changing and I am proud to be learning from him what true self-acceptance and love looks like.

Lydia-Joi

AKA the Mama