Amazing Grace: Was Blind, But Now We See

November 11, 2017 adopting a boy, cataracts, China trip, congenital blindness, cytomegalovirus, IEP, nystagmus, Sensory System, strabismus, vision issues, vision loss 3 Comments

Blind.

I immediately recoiled. We had checked a lot of things on our medical conditions checklist, and I remember vision being one of them, but blind? How could we deal with that? I studied art history and archaeology in college, and work in a very visual field. How could I share the most important and joyful things in my life with a child who couldn’t see them?

How would we care for and educate a blind child?

My husband, however, was immediately smitten by his file photo. I had to admit, he didn’t look blind in the photos; he seemed baffled by the photographer, and a bit dubious, with eyebrows crinkled. But his left eye was definitely turned completely inward (which is called amblyopia, or “lazy eye”), and in other photos, both eyes were in completely different directions and sometimes completely white, as if they had rolled back in his head; this is nystagmus, an involuntary movement of the eyes. But he looked lively and intelligent, and of course completely adorable.



We consulted with an ophthalmologist friend who said that the cataracts could be removed, but the prognosis wasn’t always good, and he would likely always be legally blind. In the United States, for example, children born with cataracts usually have them removed in the first weeks of life so that their brains can develop the ability to interpret and understand the visual information collected from the eyes. When a blockage like a cataract interrupts that system, the brain isn’t able to receive the information and build those networks. Time is crucial, and this boy had missed that window of opportunity.

Or had he? We received videos from the orphanage. We saw a toddler not yet 2 years old riding on a toy, pushing it forwards and backwards. He got off the toy and ran to a raised area of the floor. I winced, thinking he would trip and fall, but he instead stopped short and touched it with his hands. He could see it! He continued to explore his world, stopping to feel the floor if there was a change in color or texture. We showed these videos to our medical contacts, who said that he certainly had vision, and that he was using it very functionally. So we took a leap, and said yes to this child who we could see had so much curiosity and so much joy.



Nine months later, we traveled to China to adopt Tian Tian, who we named Nathaniel. He was horrified to be taken from his well-loved nannies and handed to these strangers, with strange voices and strange smells. They had told us he didn’t like “new things,” and here was an entirely new life handed to him in an instant. He was heartbroken, and cried constantly. He refused to sleep. He would run to the hotel door and ask in Mandarin to go “home” over and over. We weren’t prepared for the amount of language he had to describe his needs and his feelings (and thus weren’t able to communicate with him except through our guide), which we assume was a compensatory skill to deal with his low vision.

The first thing that struck us was how determined he was to explore his world and make his way within it. From behind, you would never know he was visually impaired; he bravely ran ahead, climbed, grabbed things off of tables, and yes, tripped and fell many times. But each time, he would pick himself up, go back, and walk over the curb or the step again and again until he had mastered it. He would pick up toys and hold them very close to his right eye (the “better” eye) so he could make sense of them. I bought him some colorful stacking cups to play with in the tub, and taught him the names of their colors so I could test whether he could see them. He quickly learned the words and correctly rattled off each cup’s color as he found them in the tub.

He is always coloring and drawing; I was completely wrong that we wouldn’t share a love of art!



Our pediatric ophthalmologist determined that his eyes simply stopped developing in the womb; they are a bit smaller than normal, and still have the vestigial blood vessels (persistent fetal vasculature) that normally dissolve in the eye by birth. They make cataract removal difficult because they can adhere to the cataract and the retina; removing the cataract without first detaching the fetal stalk can detach the retina, or can cause the eye to bleed. Further tests revealed that he had had exposure to cytomegalovirus (CMV); this is one of the most common causes of congenital cataracts, and can also cause deafness, developmental delays, and other issues. It is likely his birth mother had the infection and exposed Nat to it in utero.

After many tests and exams under anesthesia, we finally assembled a team to remove Nat’s cataracts. Just a few weeks ago, he had the cataract removed from his left eye, and an intraocular lens (IOL) implanted in its place. In a few weeks, he’ll have the cataract in the right eye removed. He will wear bifocals to give him the ability to see both close up and far away, and we will patch the stronger eye to help the weaker eye gain strength.



He may need surgeries later on to help correct his lazy eye and his eyes’ tendency to cross. In the meantime, he is 3.5 years old and thriving in a preschool geared toward the visually impaired where the teachers help him to make the most of his functional vision and to navigate the world around him. The little boy who couldn’t chew or swallow solid foods when we first met him is now eating with silverware and drinking out of an open cup. He can navigate an iPad with astonishing skill, opening games and using his newly honed fine motor skills to manipulate the various elements of each program.

His delays are for the most part a combination of lack of opportunity in his orphanage life and the inability to watch and mimic skills that are so important for infants and toddlers to learn. The gaps are closing now that he has an environment rich in stimulation and geared to his needs and abilities.

In doing our research on cataracts and visual impairment, we found an amazing wealth of services and support networks for parents of visually impaired children. The American Foundation for the Blind offers the Family Connect website, which is a great initial source of information and resources for parents of children with visual impairments. We also have an amazing special education cooperative in our county that lends a lot of family support in helping parents with individualized education programs (IEPs) and testing services, and local and nationwide Facebook groups for parents of adopted children with visual impairment.

I realize now that the opportunities for the visually impaired are unparalleled at this time in history, and with ongoing medical and technological breakthroughs (retinal implants, self-driving cars), the sky is the limit for children like Tian Tian.



I sometimes think back to how I felt when I first saw his file, and the sense of inadequacy and fear I had when contemplating parenting a visually impaired child.

Today, I shudder to think I might have passed up the opportunity to mother this funny, smart, incredible boy who has brought so much joy and love to our lives.

– guest post by Michelle



3 responses to “Amazing Grace: Was Blind, But Now We See”

  1. Erick says:

    The stories you and your husband tell about your son are some of the best ever! Seriously need to gather them for a book later on that could help people understand the joys and fears of adopting a child with “disabilities”.

  2. Catherine V says:

    This is so beautiful and inspiring, thank you so much for this insight into your journey.

  3. Sharron L. Gill says:

    Just beautiful. God bless you two and Tian Tian-Nat. Reading this and all of Josh’s great prose, has to warm anyone’s heart. I look forward each day traveling with you all on this adventure via FB. Thank you.

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