Jillian, age 10
Preface
I didn’t know my child couldn’t see.
When I suddenly discovered that Jillian, at the age of five, was legally blind in one eye, I asked myself, “What kind of mother are you that you didn’t know?”
The truth is that I was like many caring and loving parents who have found themselves in the same situation. Amblyopia is not easy for anyone but a professional to detect—especially if the child does not have a lazy or wandering eye. Jillian’s big blue eyes looked completely normal to me.
Throughout her six-year struggle with vision challenges, I repeatedly searched for books to help me better understand her situation. As much as I appreciated the clinical findings of professionals, what I really wanted were personal accounts and stories of parents who had faced similar challenges. I could find nothing.
When we finally, after years of searching, found an alternative treatment for Jillian’s condition using vision therapy, I again looked for books written by parents whose children were using such treatments. Dr. Horning’s absolute conviction that he could help my daughter was reassuring on one level, but I wondered how vision therapy had worked for other families. Would they recommend it? Was there a glimmer of hope that this would work for my child? Again, I found very little to read.
I decided to write the story I wish I could have found. May it be a message of hope, inspiration, and encouragement for others.
Acknowledgments
I’d like to extend my heartfelt thanks to my family, especially my husband, Brian, and my eldest daughter, Annelise. Jillian has the very best dad and sister in the world! You were a huge and instrumental part of not only Jillian’s journey, but also the development of this book.
Thank you to Dr. James Horning, Lindsey Hebert, Katherine Clark, and all of Jillian’s teachers for making a world of difference in the life of my child.
Thank you to my friends, who graciously offered their profes-sional opinions and guidance. My thanks to Milli Brown, Cynthia Stillar, and everyone at Brown Books Publishing Group, who embraced Jillian’s story and made it come to life.
And, most of all, to Jillian, for letting me share her story. Little one, you are my hero!
It all started with the letter P. It was that one special day in preschool when the focus was on the letter P. They had planned to wear pajamas, paint pictures in pink and purple, eat popcorn and pretzels, and pretend to be pirates. Perfect!
I had taken Jillian to school and about two hours later had received a call from her teacher. She asked if I could come by a little earlier than the scheduled ending class time to talk about Jillian. Oh great, I thought. I wondered what she had done to get into trouble.
When I met with the teacher, she told me that the class had been pretending to be pirates, and when she put a patch on Jillian’s eye, she freaked out.
“What do you mean by ‘freaked out’?” I asked. She went on to say that when she put the pirate patch on Jillian’s eye, she had thrown her hands out in front of her as if trying to reach out for something and then fell to the floor screaming for help. The teacher said she immediately took off the patch, comforted Jillian, and told her she didn’t have to wear it.
She said she’d never seen another child do such a thing but went on to remind me that it wasn’t the first time Jillian had done something a little strange. Once on the playground, a fellow playmate had told Jillian that a frog was on her back. She got so frantic trying to find it that the teachers had to take off her sweater and show her that it was a joke and that there was nothing there.
That was the very unpleasant day when the preschool director asked me, in front of my mother who was visiting from out of town, if I thought Jillian might have psychological problems. I hated her for putting that worry in my mind.
“I don’t remember all that much about preschool—mostly holidays and birthday parties—but I remember getting super upset about having a frog on me. I mean, shouldn’t people be telling you the truth when they say things? I just thought I didn’t see the frog. There were lots of things, especially little things, I didn’t see when other people pointed at them.”
I had noticed a few minor things about Jillian that could be attributed to developmental delays. At school she had cut out Christmas stars and Valentine’s hearts that looked like a mangled mess. She colored and painted pictures that only a mother would hang on the refrigerator with pride. She often brought home shapes she had drawn or cut out that held very little resemblance to the triangle, square, or circle they were supposed to be.
At first, I just thought she was bad at art and shrugged it off. But the incident with the pirate patch worried me, and I mentioned it to her pediatrician. He said we could have a specialist take a look at Jillian.
A few days later, a big packet came in the mail from the specialist, asking me to fill out all the paperwork inside and telling me that they would schedule an appointment if it were deemed necessary. The first question on the form asked if the child’s parents were or could be biologically related. What?! Are you kidding me? I thought. It went on to ask about the pregnancy and birth. I knew everything was normal, with her arriving only slightly early at thirty-eight weeks. Was she a healthy baby? Yes!
I answered the questions on the form and came to an abrupt halt on page three when it asked me if my child banged his or her head against the wall. How often? Did my child run around repeatedly in circles? Was my child obsessed with numbers? Did he or she talk in gibberish? No, nothing like that. I knew we were on the wrong path. And my heart broke to think that there were parents who were answering yes to those questions.
It was about another two weeks before we found our answer. The preschool had allowed the Vision Council to come into the school to test all the children’s vision. Jillian’s teacher wrote a note on her screening report form saying they didn’t know if Jillian was cooperating in reading the chart or not, but they had never seen such a poor result. They felt she should see her doctor. So, it was back to the pediatrician.
Let me just say that we adore our doctor. He has been taking care of my daughters for almost eleven years, and I trust him in every way. He came into the examination room and said, “What are they saying about our Jilly?” I could tell he was skeptical about the issue of vision. He had done the appropriate screening tests and had not noticed anything wrong with her vision.
But, he said, we would take her into the hall and check it out. I stood with Jillian at one end of a long hallway while our doctor stood by the eye chart at the other end. A nurse put a covering over one of Jillian’s eyes and asked her to read the letters on the chart, which she did with no problem. Then the nurse slid the covering over the other eye.
Jillian instantly threw her hands up in front of her and started calling out for me. “Mommy, Mommy, help me!” I was standing right next to her—within arms reach of her right shoulder. I spoke softly to her, telling her I was right there and she looked in my direction as if searching for me. I grabbed her hand and started to cry.
The doctor looked completely shocked. His face was suddenly about as white as the eye chart. He said, “Jillian, can you see the eye chart on the wall?” She moved her head all around as if searching the sky and ground and everywhere in between for it. Our doctor then said, “Jillian, can you see me?” She stood very still and softly murmured, “I hear you.”
I remember the doctor putting us back in the examination room and saying he was going to make a call to get her into the Children’s Hospital immediately. I was terrified. What was wrong with my baby girl? Had she always been blind in one eye? If so, how did we miss that? If not, why was she not able to see out of one eye all of sudden? Was it a brain tumor or something horrible?