It’s an understatement to say that motherhood often comes with a string of surprises. Many women discover a fierce protective instinct that they didn’t know they had, and this is especially true when their children are born with an unexpected condition. Patricia Williams is no stranger to the unpredictability of childbirth: the mother of four has two boys who were born with ᴀʟʙɪɴɪsᴍ.
Instead of viewing the ᴅɪᴀɢɴᴏsɪs as a setback, she and her family decided to celebrate their children’s uniqueness. Below, she tells us more about their story, how she can instill confidence in her children and her advice for other parents in her shoes.
“When our second son, Redd, was born, we had no idea he had ᴀʟʙɪɴɪsᴍ, we just thought he had really blonde hair. We knew our babies had a 25% chance of being born with ᴀʟʙɪɴɪsᴍ after learning that both my husband and I were ᴄᴀʀʀɪᴇʀs. This made it really exciting to experience our last two sons’ births.
During my labor, there was a point just before I pushed him out, where the doctor was holding a flashlight to get a look at Rockwell’s head. Next to him was my husband, and behind him were two male associates. “Woah, he has some really blonde hair.” and I just knew! My husband smiled and said, “He’s an ᴀʟʙɪɴᴏ.” I squealed, my mother-in-law cried, and when we called my 91-year-old grandmother (also an ᴀʟʙɪɴᴏ) to tell her the news, she cried out, “Oh no!” and made us all laugh.
In our first year with Redd, we quickly realized how much attention he drew when we were out in public. We got stopped everywhere we went by people curious about his white hair. Many times, our son was the first ᴀʟʙɪɴᴏ he or she had ever seen, so they’d ask more questions or would want to touch his hair. Last year, he was picked up by a modeling agency in Los Angeles and has had various modeling jobs for clothing lines and even got a small part in a music video.
When Redd was younger, he refused to wear sunglasses, and because of his sensitivity to sunlight, we had to do a lot of beaches and playgrounds at dawn or at sundown, so he could play comfortably. This became fun for us because we were usually the only ones there. Now that he’s older, he knows to put on his hat, sunglasses, and sunscreen before going outside and is good about reminding us if we forget. We carry a lot of sunscreen, and multiple sunglasses and hats in our car, so we are always prepared for him to be outside.
I was most unprepared for the fact that the majority of those with ᴀʟʙɪɴɪsᴍ are legally blind. Redd was 3 months old when our optometrist told me he would most likely be legally blind and unable to get his driver’s license. I remember crying all the way out to the parking lot and on the entire drive home. We also dealt with ɴʏsᴛᴀɢᴍᴜs (the tracking of the eyes back and forth) and sᴛʀᴀʙɪsᴍᴜs (one eye was cross-eyed), so he needed multiple optometrist visits per year and had eye sᴜʀɢᴇʀʏ on both eyes by the age of 4. Seeing Redd now and how easily he navigates through life!
My husband and I have a silly rule we created that if a stranger makes more than three comments about our son’s hair, then we will bring up the fact that he has ᴀʟʙɪɴɪsᴍ. Otherwise, I just smile and stay on guard in case they try to touch his hair without asking. Redd is definitely confident enough now (at the age of 5) to tell people to stop if they try and touch his hair, and to let people know that he’s an ᴀʟʙɪɴᴏ and that it just means he has white skin, white hair and is really sensitive to the sun.
Kids can be so honest in such an innocent, yet totally hurtful way and we need to use those opportunities to educate them about ᴀʟʙɪɴɪsᴍ and to explain why Redd’s eyes move back and forth. I’ve always said the best defense we can give to Redd is to teach him how to be confident and give him the right things to say when he hears people making fun of him. My husband has always said the next best defense is to give him kung-fu lessons.
Whether you have a child with ᴀʟʙɪɴɪsᴍ or a child with special needs, social media has been a huge factor in helping me find communities and resources. I’m a member of three large ᴀʟʙɪɴɪsᴍ groups on Facebook, and have become friends with many other parents of small children with ᴀʟʙɪɴɪsᴍ on Instagram. I have learned so much from these groups and have been given so much support with all my questions and fears.”
Through photos and posts, we’ve all watched each other’s children grow up and accomplish milestones that may seem small to others, but huge to us. Like when your baby first makes eye contact with you at around 6 to 8 months old and you feel like you’ve been waiting for this moment forever and it makes you want to cry. Just know that you are not alone and that there is always someone out there understanding your struggles and cheering you on.