Several months ago, I noticed a few patches of white hair on my son’s head. I thought maybe it was chlorine from the pool or just an unlucky patch of grey, but decided to do a quick google search for “grey hair in kids.” And there it was staring back at me: vitiligo.
I knew he had it. My father-in-law has it. Pretty significantly on his hands and legs. We went to the pediatrician; she was unsure and took a wait-and-see approach, only checking his blood for a thyroid condition often associated with the disease (which came back negative).
For the next 6 months, I was able to put it in the back-burner. I knew it was probably vitiligo, but patches of grey hair seemed manageable. Endearing almost. Then we went for a haircut and there were patches of white skin on his forehead. At first I thought it might be a farmer’s tan, but later that week we went to a fair and a friend asked, “What’s up with Augie’s forehead?” with a look of ever-so-slight disgust. I knew right away it was vitiligo and I cried the whole way home.
My baby. My sweet boy. I knew he would be different. He would look different. I kept thinking about what if kids were mean to him? What if he was one of the “different” kids? The kid that other kids parents praise their kids for being nice to. I knew this was a exaggeration but I also knew this was the end of my fantasy that my kids were going to have a perfect life. Intellectually, I understood that was never really possible, but when the moment hits you that your kids may suffer, it’s a true punch to the gut.
I allowed myself a night to mourn the loss of a perfect life for him, then woke up knowing I could never give him that anyway. No one really can. No one gets through life unscathed or without a cross to bear and this was one of ours. I tried to put it into perspective and remember that everyday, every single one of us has our own cross to bear.
My friends’ kids have speech delays or autism. One just found out her daughter is deaf in one ear; I have a friend who lost part of his leg in a tragic accident when he was young. No one gets to skate through life without some degree of pain and suffering. And in the end, it’s how we handle it that matters.
Then I thought of my father-in-law and what a great man he is and how wonderful his life is. He’s easily one of the most content people I have ever met. He has a PhD, a great marriage, a good relationship with his kids. He’s the best example I have of someone being comfortable in their own skin. And his skin is riddled with vitiligo. As a parent, I knew that I would be so lucky if my son grew up to have a life as meaningful and happy as my father-in-law’s. That brought me enormous comfort.
My father-in-law just seems to have always had a deep understanding that life isn’t about being or looking perfect. It’s about finding meaning and purpose and about connection and relationships. He’s never talked about vitiligo in a way that has made me believe it has any real impact on his life. He admitted that a few people have said a few hurtful things, but he got to define how he let those things affect him. And they didn’t.
So after my initial pity party, I realized that my son also doesn’t deserve a mother who can’t handle shit. He deserves a mother who understands that life may be challenging and that’s okay. That having skin that’s missing some pigment doesn’t take away from the beautiful, funny, sweet, loving kid he is. Most importantly, it’s his skin and not his soul — and he’s a such beautiful, sweet soul.
This also made me realize: You don’t get to pick your kids’ battles; you get to teach them how to fight. He gets to determine how he lets this affect him. I hope we give him enough self-esteem and love to know that he can and will do anything he wants to. That life is full of challenges but also the will and grace to learn from those challenges.
So, no, I don’t want my children to have challenges, or to be be different or feel less than. But at the end the day that’s not what I have control over. I have control over teaching my sweet boy how to handle those challenges and to let him know that beyond anything he is so, so loved.