“Anderson was diagnosed with a cystic hygroma on the right side of his neck at our 20- week anatomy scan.  At that point that told us he could have Downs, Turner syndrome, or Elephantiasis. They also brought up termination of the pregnancy because they didn’t think he would have quality of life. Once he was born, he was tested and it was then that they diagnosed him with cytomegalovirus, which is a virus that attacks your sight, hearing, and organs. He was put on valganciclovir (cancer medicine) that helps the white blood cells. It saved his sight and organs, but it was too late for his hearing.

At about 6 weeks old he had his first hospital stay where they drained the cyst because it had swollen and began blocking his airway. After the first time they drained it, we thought everything was going to be okay because he went a few months without any problems, and honestly it was so small it just looked like he had a chunky chin. They said that it’s possible for him to live like that without any problems, so we prayed that was the case, until it wasn’t. Any common cold would cause fluid to build up in the cyst. We had the cyst drained twice before they decided to remove it at 15 months old. They wanted to wait that long due to blood loss, because they would have to cut along the jugular gland. Surgery was a success, and we haven’t had problems with the cyst since. 

During the stays in the hospitals, the meltdowns, the overstimulation, and scariness, I remember the only thing that soothed him was vibration and humming of "You are my sunshine." Some of our family couldn’t even soothe him, but as soon as they handed him off to Sam or I and we hummed that and batted his little bottom, he would calm down. He also had to have a certain grey blanket that has his brother's name on it, and even today, he still carries this blanket around! 

We thought we would be in the clear for a while, but then another huge decision had to be made. The communication barrier was getting harder and harder as he got older. We would get so frustrated with each other when he couldn’t communicate what he wanted to us or if he couldn’t understand what we were telling him. At this point, our sign language was just at its beginning stages, and he was trying to read lips. It was tough. The future and how society would treat him for being deaf was scary to think about. Would he be able to play sports, or hear music, or even hear me tell him I love him? We were terrified because we didn’t have any experience with deafness. I just wanted Anderson to be treated like an equal, and I didn’t want people to pity him or us. 

At 2 1/2 years old, we decided we would go through with the cochlear implant surgery. During this time, the ins and outs of the hospital and doctors became second nature. He was truly a champ! The surgery was intense, and they gave it a 50/50 shot of working. They drilled out small squares from his skull and implanted the devices with wires that spiraled into the cochlea organ. After a month of recovery and the swelling going down, he finally received the outer processors. He rejected them at first and didn’t really want to wear them. They say it can make them a little sick at first, but once he realized he could hear everyday sounds, like a train or our voices, he started keeping them on for longer periods of time and asking for them!"

-Anderson’s Mother