Real Mamas, Real Stories. Tasha’s Baby’s With Albinism.
Our contributor Sara shares her latest ‘hiccup’ feature.
I’m not sure why talking with strangers is easier than talking with close friends or relatives but it just is.
I’m a crier but I wasn’t sure if my regular “Every Mama has a Hiccup” interview would work over Skype—would we bond 10,000 miles from each other? I note Tarsha’s big green cat-like eyes like an actress on Hollywood making a come back. She’s wide eyed as in concerned, alert, and protective. I know we are going to bond. We both have boys.
We connected because we share this search for magic in our mommyhood journeys. My hiccup was my firstborn’s experiences with hip dysplasia. Tarsha’s came with her baby’s albinism. This is where Tarsha starts shifting the phone up and down so at times I’m zoomed in on her eyebrows. That’s when I really felt like I was getting a close-up on her currency as a mama (because we all have a currency—our one thing that defines us): Tarsha is an educator and advocate for children.
“I didn’t realise which path I was meant to be on until Stephen was born. It was a complete shock.” As with real-life hiccups, there was no forewarning or time to prepare.
“He was diagnosed within ten minutes of birth because he was born with white hair. There’s an eye test.” It confirmed the news. Albinism is so rare. It’s a congenital disorder where the skin, hair, and eyes lack or partially lack pigment. Neither side of the family seemed to have it. Various visual disorders can result and the risk of sunburn and skin cancer is greatly heightened. A nurse rattled off to Tarsha the consequences: “He will not drive a car, might not read. May need a special setting at school. Extra help. Can’t take outside….”
That’s where it started. “We went into survival mode.” I knew what she was talking about. Suddenly all background noise disappears. Forever. Or, until you can deal with it.
Tarsha is honest in saying what so few mamas confess, “I was sad for him and for us.” They had envisioned a life of numerous trips to Long Island and days spent at Disney World. “What do you mean we can’t take him to the beach?” Tarsha asked. “The biggest thing for me was the not-driving thing. That alters your life. Your life is a different life.”
Tarsha soon expected another baby. Then she lost her dad suddenly when she was 4 months pregnant.
“I found out we were expecting another boy 10 days after my father passed away.”
When she gave birth to Joseph, they discovered that he, too, has albinism.
In albinism there’s a specific gene that’s missing. Tarsha explains they could have done that test but there was no point. “As soon as they told me it was a boy I knew that he would have it. He did and we knew it. But suddenly Stephen had a buddy for life—they both had someone who would understand.”
They moved back to Boston. Tarsha became a stay at home mom after being an assistant principal in a NYC public school. “I was so envious of SAHMs until I was one. Those were my darkest days because I had attached my identity to being an educator. That was my purpose. Doing good at a school. Now I was sitting in a kitchen on a rolly chair watching an 8×10 TV screen. I had PTSD.”
With the loss of her dad, the move, and two young boys to care for both with a rare condition where you’re warned not to take them outside in the sun, it’s no wonder that Tarsha had PTSD. “I loved my toddler and baby, but I’d find myself crying and felt guilty. It is what it is.”
Her biggest lesson in all of this is to ‘be kind to yourself.’ Not only in terms of taking vitamins and eating clean, but also with time. “Sometimes we need the time to figure out what all of this means.” Hard things need the most time.
”My darkest days were my most important days. I had hours where I had to sit and figure it out, and feel the pain and anger, and then let it go.”
Feeling those things you’re afraid to say out loud sounds like a horrific thing.
“We don’t give ourselves time or space to be still and feel it. And figure out how to use it. It’s a hidden gift. There’s magic in it. But there’s no time to find the magic.” The key to most things is really the timing of everything.
Now Stephen and Joseph are 9 and 7. Both have a sensory processing disorder, which is common in albinism. SPD can look like something on the autism spectrum. Kids experiencing it can be advanced intellectually, but their senses are out of whack. With her boys, this is due to their vision. So one boy needs to touch everything, put it in a pile, as his way of experiencing the world—through touch. Meanwhile, for the other boy, the world is painful to touch, he wants nothing on his feet.
They are each other’s triggers, and polar opposites and in a way one can lean on the other.
“It was tough.” Tarsha breathes deep. Breathing in deeply is just as dramatic from 10,000 miles away. She pauses. “There’s so much in life that we don’t know.”
She couldn’t let her boys see that she was sad. She decided her job is to help them figure out where to turn. To advocate for them. And to show the world the magic they bring.
Ever since the boys could understand, Tarsha’s talked to them about albinism. “We speak about it like it’s going to the grocery store.” They reduce it to statistics: 1 in 19,000 and 1 in 18,000. Autism is 1 in every 65. It is rare, but it was meant to be. “It’s all ‘magic’ because what am I doing with this. Special souls. Not typical children. Once I stopped seeing them as typical I realized how their gifts strengthen their character and help others.”
Tarsha has this to say to parents going through anything tough: “When you’re in a tough spot you need to stay there for a while otherwise it’s never going to go away. You gotta sit there with it.” Things come to us for a reason. We all know that. We can’t change. Our elements alter. And we choose. There will come a time for you to decide if it’s going to change you and how—either to change you for the better or for the worse. To see the light or stay sitting in the dark.
Tarsha’s currency is how she learns, advocates, and teaches. “That is where I find respect and peace and happiness. Trying to strategize how to make the most out of that connection. And yes, everything happens for a reason. As annoying as that cliché is, it really does and you can choose to ignore it or listen and learn.”
I want to help moms on this journey through their hiccup so they can figure out who they are, who they want to be, and what motivates and matters to them.
By the time Tarsha’s boys turn 16, we can hope that cars will be driving themselves so at least that one dire prophecy from that nurse fails to affect them.
“They’re getting there,” Tarsha smiles.
“It is through our ‘hiccups’ and the work we do while walking through the pain that we are able to appreciate and see things in a new light. That’s the magic. It’s not that everything becomes all rainbows and butterflies—because it doesn’t. It shouldn’t. Life is still going to be hard. There’s going to be more loss and disappointments. It’s just that after walking through it—our spirit has a new outlook. You see the beauty-aka-the magic in all of the little things in your life. BUT you gotta do the work.”