What You Cannot See Through a Mothers Eyes

By Sakina Boyd-Shaw

When people look at my son, Master, they see a beautiful baby who smiles, reaches for familiar faces, and responds to the voices he knows. What they may not see is the medical journey behind those moments. They do not see the fear that began when we learned he had bilateral congenital cataracts, or the uncertainty of being told that we would not know the full extent of his vision until he was older. They do not see the appointments, the eye drops, the contact lenses, or the constant questions running through a mother’s mind.

Master was born prematurely at about 34 weeks after a difficult pregnancy complicated by diabetes. I was 41 years old and had spent months on bed rest. After his birth, I developed postpartum cardiomyopathy and congestive heart failure. My heart’s pumping function became severely weakened, and I had to wear a LifeVest while trying to recover. Even as I struggled with my own health, I still had to be Master’s advocate, caregiver, and source of comfort.

Our eye journey became urgent in March 2026. After an emergency-room visit, testing, and an MRI, we learned that Master had cataracts in both eyes. A cataract is a clouding of the eye’s natural lens. In an infant, it can prevent the brain from receiving a clear image during a critical period of visual development. For our family, the diagnosis meant acting quickly while trying to understand a condition we had never expected.

Master underwent surgery on one eye on March 16, followed by surgery on the other eye the next week. He did not receive permanent artificial lenses at that time. Instead, his vision would be corrected with specialized contact lenses, with the possibility of reconsidering implanted lenses when he is older. Surgery was not the end of the journey. It was the beginning of a demanding new routine.

After surgery, his eye pressure became elevated. There were days when the numbers were frightening, including a pressure reading of 35 that later came down to 25. We used several eye drops four times a day and returned for frequent pressure checks. Every appointment brought a mixture of hope and anxiety. I wanted improvement, but I also feared what the doctor might find.

Caring for an infant in extended-wear contact lenses is a responsibility most people never imagine. The lenses have to be removed regularly, cleaned, checked, and put back into tiny eyes. Learning to insert and remove them required hands-on training, patience, and courage. A lost lens can turn an ordinary day into an urgent search or another call to the eye office. Supplies have to stay organized and ready. Light, sun exposure, and eye protection become part of every plan outside the home.

This is what an invisible disability can look like for a baby and his family. There may be no wheelchair, white cane, or obvious sign that explains what is happening. Someone may see Master smiling in his contacts and assume everything has been fixed. They cannot see the work required to help his brain learn to use vision, the possibility of future complications, or the uncertainty surrounding what and how clearly he will eventually see.

They also may not see the emotional and practical weight carried by the family. My 17-year-old daughter became one of Master’s greatest supporters and helped care for him while I recovered. Our lives revolved around medical instructions and appointments. I had to make difficult choices about work because Master’s care required consistency and because my own heart was still healing. The experience affected every part of our household, even when we looked fine from the outside.

Still, our story is not only about fear. It is also about progress. Master began tracking light, focusing more clearly, reaching toward faces and voices, and moving through the world with curiosity. His nystagmus became less noticeable. Each small response felt enormous because we understood how hard his eyes and brain were working. His progress reminded us that hope does not always arrive as one dramatic answer. Sometimes it appears in a glance, a reach, or a smile.

I created Through Their Eyes Journey because I could not find the kind of support I needed when we received Master’s diagnosis. The collection includes a memoir, a coloring and activity book, and a parent journal for recording appointments, medications, questions, emotions, and milestones. I wanted families to have practical tools, but I also wanted them to feel understood. Parents need to know that fear, exhaustion, grief, gratitude, and hope can exist together.

If I could ask others to understand one thing, it would be this: do not measure a disability or a family’s struggle only by what you can see. Behind a child’s smile may be surgeries, therapies, uncertainty, and extraordinary effort. Behind that child may be a family learning medical skills they never expected to need while still trying to create an ordinary, joyful childhood.

We do not yet have every answer about Master’s vision, but we continue moving forward. I have learned to celebrate what he can do today while advocating for what he may need tomorrow. Through his eyes, I have come to understand that being seen is about more than sight. It is about having your experience recognized, your challenges respected, and your hope supported.