The Grabowski family

The Grabowski family

October 19, 2022 Masse Comments Off

Albinism: A Parent’s perspective


Albinism: A Parent’s perspective

by Liz Grabowski

It’s still dark outside when my body decided that I wasn’t going to sleep anymore. I lay there thinking about my day and all that needed to get done when I heard Nathaniel’s alarm go off at 6:30am. Nathaniel, my 15-year-old son with albinism, stumbles down the ladder of his loft bed and trudges out to the kitchen to take his ADHD meds. For years I had been getting up and attempting to shake him awake to take his meds and it was always a frustration. There is freedom in showing him that he can do this on his own. After a minute has passed, I hear him wander back down the hall to his room to get ready for his day. As I continue to lay in bed I hear Lily, my 13-year-old daughter with albinism, start unloading the dishwasher. She needs no prompting to begin her chores and prefers to wake up early so that she has more free time later in the day. Lily is efficient and always makes sure to run her hands over the racks to be sure that she hasn’t missed anything due to her visual impairment. I shake my head and wonder where she developed this diligence because I am such a procrastinator! I continue to lay in bed and enjoy the silence knowing that in just a few minutes there will be questions, frustrations, joys, and challenges that I must face as any parent faces when raising kids; no matter their abilities or disabilities.

Pulling on my workout clothes, I gear myself up for the chaos to come. Some days I take a walk and avoid the hustle of five kids getting ready for their day. Today, I pull up a workout video and attempt to get through my exercises without too much interruption. It never fails that someone tries to get my attention in the middle of a plank! Nathaniel’s meds haven’t kicked in yet, so he’s constantly moving and making noise as he gets ready. Kaelyn, our third with albinism and also an intellectual disability, silently goes about her tasks efficiently and without drama. She’s so compliant that the few times she disobeys I smile and am glad that she is showing a little spunk. I think back on the early days of her joining our family when her eyes were vacant, and I was fearful that she would never be able to have a conversation with us and am thankful for the progress she has made. The Special Education bus pulls up in front of our house and Nathaniel and Kaelyn head out the door, hats in hand and sunglasses on. They spend the day at our local public high school, a new adventure for them after homeschooling the last four years. The door slams shut, and I watch Nathaniel race to the bus with his backpack flopping open and wonder if the mass of papers will make it to school with him. He’s probably hoping that Kaelyn, walking sedately behind him, will pick up anything spilled out. Restraining a sigh, I breathe deeply and take a moment to enjoy the quiet once again.

It’s time to turn my attention to school with my three girls left at home. Lily and Mae have already started working through their assignments. Being in eighth grade lends to a lot more independence in learning and they often teach themselves and each other. I love the bond that they share and how they help each other. I worry on occasion that their strong friendship keeps them from getting to know other kids. When I encourage them to branch out and make new friends, the response I often get is “Why? We have each other and that’s enough.” I try not to stress that Lily is having a hard time in group settings because she isn’t able to recognize those around her. I try not to be concerned about how she will navigate life without having Mae to guide her. For now, I am thankful that we have time to navigate the challenges of being legally blind before adulting begins.

After a lovely, hot shower, I come back out to work with Emily, our fourth child with albinism. Looking over at our school table, I see that she is already working on her handwriting for the day. Her work is on a slant board bringing the paper closer to her face so that her posture isn’t so slumped over. Emily’s face is only a couple inches from the paper allowing her to see her efforts. I sit down at the table and begin to pull out her other assignments. She groans and complains hoping that maybe I will miraculously decide to cancel school for the day. Fat chance! We slog through the work and I release Emily. She shouts for joy and runs to put her shoes on so we can head out the door to her home school choir class.

Arriving at her choir class, I pull into the handicap parking space that I park in every week. I’m so proud of my nine-year-old girl for getting out of the car and using her mobility cane to walk down the sidewalk, up the stairs, and into the classroom all on her own. She has been hanging onto me a lot lately and I have been trying to reinforce using the cane so she can move towards independence. I have no idea what it must be like to see through her eyes and can only imagine how challenging it can be to walk around and not truly see changes in the ground. I sit in the car and watch her progress knowing that she is going to conquer the world in her own way. I can’t wait to see what God has planned for her future. It definitely won’t be boring!

Back at home, Lily is sitting at the video magnifier reading her science textbook. We are blessed to have two devices that enlarge what they want to see on a large screen. Technology is amazing! After finishing the science chapter, she migrated to our couch for her favorite part of the day. Reading! An iPad with enlarged font makes this an enjoyable time for her and lessens the eye strain. I check in with all three girls to make sure their schoolwork is complete and then I start working on my chores for the day.

The next few hours are filled with laundry, dinner prep, cleaning, and other projects that need to be done. While I work, I think about how Nathaniel and Lily are getting close to the age of being able to get a job. I wonder how they are going to get there when they can’t see well enough to drive. My thoughts distract me and I sit down, open my maps app on my phone, and look to see how long it would take to get to some destination on the bus. A drive that would typically take me 10 minutes in the car could be close to an hour by public transportation. Quickly, I shut down my panicky thoughts and remind myself that others have walked this road before and have thrived. But those thoughts creep back in. What will they do for a career? Will someone even hire them? How will Nathaniel take a girl out on a date? Will someone take advantage of my sweet Kaelyn knowing that she has a disability? Letting these fears in will only immobilize me, so I put away my phone and remind myself to take care of todays worries and not dwell on those yet to come.

It’s now late afternoon and the bus is back in front of the house. The door is thrown open and the house explodes in volume. I laugh to myself because Nathaniel talks more than all four of my girls combined. I barely get out ‘how was your day?’ and he’s giving me an earful. The boy on the bus is bothering him again and Nathaniel is having a hard time ignoring him. He’s feeling behind and stressed about his schoolwork. He tried to find a kid he met previously but had a difficult time because he struggles to recognize the faces in the crowded school. He was proud of himself today because he actually hit the tennis ball! I nod my head and roll with the disjointed conversation. When he finally takes a breath I turn to Kaelyn and ask her about her day. She actually tells me that her class went on a field trip to the store. I’m thrilled with her response because I haven’t been able to get more than ‘good’ out of her for a long time. I know that her special education teacher is doing a fantastic job so I don’t worry too much about her experience there. Knowing that she is happy, safe, and engaged during the day make me happy.

Dinner is ready and the kids rush into the kitchen. There’s a jostling in the lineup to see who will be first to dish up their food. Nathaniel is working on letting ladies go first so he steps to the back and “patiently” waits for his turn. We finally sit down, pray, and dig in. Conversation pings around the table and everyone has something to say. My husband, Jon, catches up on the things he missed while working and highs and lows of the day are discussed. Food is consumed and the kitchen cleaned up by the kids leaving me free to relax after a long day. This is the time that I unwind and do something to decompress; usually reading a book. I can hear Jon in the family room reading to the kids while they play cards, work on a puzzle, or build with Lego. Another day on the calendar has passed and everyone made it through.

Lights are out and I’m back in bed enjoying the quiet of the night. I reflect on the day and recognize that while there are many challenges that we face, they are not insurmountable. Our kids with albinism may have more hurdles to jump than others, but in the end, they are like any other kid. They have dreams, goals, and a vision for their future. I drift to sleep knowing their lives will be full and they will thrive!

Liz Grabowski

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