My daughter Junie is 14 years old, and was born with congenital glaucoma and nystagmus. She was diagnosed in an orphanage in China within the first 6 months of her life. I have little information regarding her early diagnosis and treatment, other than being told that she had a trabeculectomy in
both eyes before her first birthday and she was hospitalized for nearly 3 months following surgery.
When I adopted her, Junie was almost 2 years old and was already legally blind. She had the most beautiful huge brown eyes, and was afraid of everything. Her exposure to the world had been limited, and every movement and sound was scary. It was a challenge and a joy to help her learn to explore and discover her world. She amazed everyone and continues to amaze everyone with how well she uses her limited vision.
Shortly after coming home, she received glasses and began taking eye drops for her glaucoma. She required goniotomy surgery in her right eye before turning 3 and received a Baerveldt shunt in the same eye before entering kindergarten.
Junie was initially diagnosed with Sensory Processing Disorder and global developmental delays at age 4 and later was diagnosed with Level 3
Autism, Mild Intellectual Disability, OCD and ADHD. We’ve climbed a lot of mountains, but she has come a long way.
When she was 8 or 9 she required laser surgery in her right eye and developed a cataract.
Shortly before turning 13 she suffered a detached retina and is now completely blind in her right eye.
As she has gotten older and taller, I see her vision deficits affecting her more. I have to remind people that if something isn’t in her immediate field of vision, she cannot see it. She holds onto me more, and we use her adaptive stroller more often.
We work on using a white cane appropriately, but it’s not her primary means of navigation. Hills and inclines of any kind are a challenge. Overall, she accommodates well and mentally maps out familiar environments as she has known nothing else her entire life.
Junie continues to require eye exams under anesthesia because she in unable to tolerate pressure checks. We go at least once a year, and oftentimes more frequently. She is maxed out on eye drops and takes many other medications as well.
I worry a lot about how she will manage if she loses her remaining vision.
She’s had a procedure to strengthen the retina in her left eye, but sometimes when she is upset she will poke at it or hit her eye, and it’s very scary and hard to prevent. She’s super-humanly strong and struggles with big emotions, obsessive thoughts, and self-control.
Junie loves to watch her ipad (inches from her face) and look at pictures of our family or favorite random objects. She depends on her limited vision so much, I can’t imagine what she would do without it.
Junie is curious, funny, mischievous, delightful, and a truly one of a kind girl. She does not fit into any mold. Our journey isn’t like that of a lot of families who are raising a child with glaucoma, we face many obstacles on a daily basis and glaucoma is just one of them.
Junie has changed my life and taken it in a direction I couldn’t have possibly imagined. She has taught me how to truly walk by faith, and teaches me more and more every day.