Early Eyesight Troubles
“When the ultrasound tech said my son was a boy, there were so many things I imagined him doing growing up. I imagined him playing sports and being as competitive as I had been as a child. I imagined him loving soccer and running just like I had. I never imagined there would be anything different about my child or that his life would be completely different from the way I imagined it.
Ashton was born on September 22, 2011, and at 41 weeks, he was almost a 9-pound baby. He had so much hair and I remember thinking he was the most beautiful baby boy I had ever seen. The day he was born he had to be admitted to the NICU because he had low blood sugar and he was struggling to nurse. These were all early signs of his diagnosis but at the time we had no clue he was blind.
I remember crying every day he was in the NICU because I couldn’t bring my baby home. After a week in the NICU, he was finally discharged but I was very concerned about his eyes. Both of his eyes bounced a lot and I was wondering why they did that. Ashton was my first biological child and even though I had raised my stepdaughter before him, everyone always dismissed my concerns as a first-time mom. Even his doctor told me he was sure Ashton would start tracking toys like other babies at 2 months old. It was very frustrating because I knew something was wrong with his eyesight but no one thought anything of it.
A nurse from the NICU came to our house a month after he had been discharged and she noticed my daughter did something that made a loud sound and Ashton was startled but he didn’t even turn to look in her direction to see what had happened. She validated my concerns and wrote a referral for my son’s pediatrician to look at his eyes again. With the referral, the pediatrician took a closer look and told me he needed to refer me to a pediatric ophthalmologist.
Optic Nerve Hypoplasia Diagnosis
When we met with the pediatric ophthalmologist she looked at my 2-month-old baby and said she was not sure he could see but she needed to do an MRI to check his optic nerve. She didn’t confirm he was blind but she did tell me it was a possibility. The days leading up to confirming my son’s diagnosis were so hard. Watching my baby going under anesthesia in order to have an MRI done was heartbreaking.
I still remember the day I received the call from the ophthalmologist about the results of my son’s MRI. She asked me if I was alone or if there was someone there with me I could talk to after we got off the phone. My heart sank, I knew she was going to give me the hardest news and I sat on a rocking chair, holding my baby as she explained his diagnosis to me.
She said Ashton had Optic Nerve Hypoplasia and he was blind because his optic nerve had not developed the way it should’ve when I was pregnant with him. She said there was no reason why or anything I had done to cause this but he would need early intervention services and services from the school of the blind to reach milestones. She didn’t know how much he could actually see and she said that is something only Ash would be able to tell us as he got older. She gave me the hardest news I had ever got before as a mom. Finding out my son was blind meant his life would be so different from anything I had ever imagined. I cried for so many days and struggled to accept his diagnosis.
Septo Optic Dysplasia Diagnosis
When Ash turned 5 months old, he had to be hospitalized again for low blood sugar and this is when we got the second part of his diagnosis. We found out Ashton needed to start taking thyroid medication and hydrocortisone to regulate his hormones. He would also need an injection of growth hormone every night before bed in order to grow. This changed his diagnosis from Optic nerve hypoplasia and added the diagnosis of Septo Optic Dysplasia. I struggled so much knowing I had to give an injection to my baby boy every night. Getting used to all of his medications was hard for us because Ashton hated the shots and we knew he would need them for the rest of his life.
I remember there was a commercial on TV where the mom pointed at a cheerio and the baby picked it up and ate it. I was angry every time I saw it because I couldn’t do that with my baby. I also cried every time I thought of him not being able to see my face or my husband’s face. It was so hard not to grieve the baby we once dreamed of but we didn’t know how beautiful raising a child who is blind would be.
Milestones
As Ashton got older his milestones were always delayed but every time he reached them, it was so special for our family. I remember it took him a year to learn how to crawl but when he did, I cried so many happy tears. His first steps were the most beautiful thing to witness, he walked right up to the sound of his big sister’s voice stretching his arms to hug her as he walked towards her. I felt so blessed to be able to see him reach these milestones and to know how hard he was working to reach them. We had a physical therapist that would do home visits and help me so I could do exercises with Ash to strengthen his muscles since low muscle tone was also part of Ashton’s diagnosis.
Once Ash took his first steps, he just took off. He was unstoppable, discovering all the things he could do on his own and without vision. He learned how to run when he was 2 and it was the cutest thing to see him running with his white cane in the playground. He loved banging the cane on everything that was in front of him. He hadn’t quite figured out the purpose of the cane but he was getting really good at holding onto it and taking it everywhere. It was hard for me as a mom to have my child carry a white cane at first because other parents looked at him differently when they saw him.
I also noticed they never explained to their kids the purpose of the cane; they just apologized if their kids made a comment about it. I realized I would have to be the one to explain there was no reason to apologize. Ashton was blind and his white cane was something he used to get around. I wish more parents allowed their kids to ask questions about tools used by children with special needs instead of apologizing for their children. It’s the perfect teaching moment for a child to learn about a child who may be different from them when they are asking their parents these questions. I guarantee the parent and the child with special needs will both be more than happy to answer any questions and share a little bit more about themselves.
Learning Braille
When Ash turned 3, he started preschool and that meant he would begin learning Braille. I was so worried about how I would be able to teach my son to read if I didn’t know Braille myself. I took a Braille course from one of his teachers from the school of the blind and also an online course that is free for parents of children who are blind. I was surprised at how fast I could learn a completely new alphabet and I started labeling all the places in our house with braille labels. A sighted child sees print everywhere and I wanted my blind toddler to start feeling Braille everywhere in our house. All of the baskets with his toys were labeled with Braille. His books all had braille labels he could feel when we read them.
When Ashton started Kindergarten, he learned how to write in Braille and it took him a couple of years but he is now able to read in Braille too. Braille is harder to learn for children who are blind because it takes more steps than print. A child has to identify the letters with touch and then read the words. Ashton is now in third grade and he is getting really good at reading Braille and large print too. He is part of a regular third-grade class and is the only blind student in his class but he loves going to school and getting all of his Braille services in his classroom with his peers.
Overcoming Challenges
As Ashton has gotten older, we’ve noticed him starting to show signs of having more than light perception in his left eye. He tilts his head to try and focus the little vision he has to see and find things. I remember the very first time he saw my nose and my eyes and he pointed at them when I asked him. It was such a huge miracle for me to know my son could see parts of my face if I was standing really close to him. He eventually learned how to ride a balance bike with his little vision and even a scooter later on. At 5 years old, he learned how to ski holding on to a bamboo pole and with the help of a guide. It was incredible to see my son doing all of these things I never knew he would learn how to do.
When he turned 7, he wanted to learn how to ride a bike without training wheels and he was so determined to do it he figured it out on his own. I was in tears the first time I saw him riding his bike with the rest of the kids in our neighborhood.
There are so many things Ashton has done in his life I never knew he would be able to do. He has sung on a stage in front of hundreds of people to support nonprofits for children with special needs. He’s won awards for his art projects in school and also for his photography entries. This year, he started piano lessons and his teacher told me he has a gift. He can hear songs from movies and figure out how to play them on the piano. He’s done so many amazing things for just being 9 years old.
If there’s anything I could tell myself 9 years ago when I got my son’s diagnosis, it is to not believe his diagnosis would ever limit the things he would do in his life. My son has taught me the greatest lessons by seeing the world with his heart before seeing it with his eyes. He has taught me lessons about determination and overcoming challenges I never knew before. He has taught me to never give up and never lose hope for the future because you never know the incredible things a child who is blind can do.
I used to think I was missing out when other moms described their children reaching milestones easily and being great at things that Ashton couldn’t do. Now I know everyone else is actually missing out because having a child who is blind is a gift. I get to describe the world to my son and that is something not every parent gets to do. I love seeing Ashton grow and I can’t wait to see all the incredible things he is going to do with his life.”
This story was submitted to Love What Matters by Hilda Dunford from Utah. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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