The day before our son Niko was born, we went out for dinner. We took a family portrait with our daughter, who was 8 years old at the time. We were ready—or so we thought. September 1st turned out to be one of the longest days of our lives. I got to see my newborn son for a whole minute before they drove him off in an ambulance to repair a tiny 2 mm hole. He was born with tracheoesophageal fistula. That night, after the surgery, Niko went into respiratory arrest. His tiny body was racked and weakened by the general anesthesia. As my husband manually resuscitated him while waiting for the team to set a mechanical ventilator, I was miles away in the maternity ward, my body shaking uncontrollably with tears falling down my face and soaking the pillow. Later on, I found out it was the exact moment he was being intubated. We stayed in the hospital for several weeks. I was able to hold him 21 days after he was born. With several tubes attached to his tiny body, our skin to skin bonding time was made even further precious.

When we finally took him home, he was still in need of the ventilator. We carefully weaned him off of the oxygen. His cries started getting louder and we got into a routine. Three months later, I noticed he was not focusing on my face as he should by that age. We took an appointment to see a specialist. My knees gave out as the doctor pronounced my son blind. She was mean in her delivery of the news. In fact, she sounded annoyed that we brought a blind baby to see her. I walked out of that room in a daze. We promised each other that we will take other opinions and do whatever we can. The next few weeks were filled with doctors appointments, MRIs, audiometry tests and blood draws. I read anything and everything related to the subject matter. I cried. I hugged him tight. I talked to him. We sat for hours holding his tiny hands and consulting. We prayed. My catholic mother-in-law brought her Holy water from Jerusalem. My muslim friends prayed to Allah.

I started taking my senior students to practice for their recitals in our living room. Niko will be in his crib as I accompany them on the piano, quietly listening to the music filling the house. I took him out in the morning sunshine, put him next to me as I worked in my garden. We got many explanations for his condition. It was the oxygen damaging his eyes. He was too young for the mechanical ventilator. His optic nerves got burned due to this. No, he wasn’t born blind. Yes, the anesthesia and surgery was too much. Then we sent the MRI to Children’s Hospital of Philadelphia through our colleagues where the diagnosis of ONH was made. But for me it was not until ten months later, when we came to the children’s hospital in D.C. that we got a formal real diagnosis of Optic Nerve Hypoplasia (ONH).

I was able to intellectualize it. After all, I was a nurse not long ago turned music teacher. My husband is a pediatrician. We consulted all our friends and colleagues. We sent his files to my brother who was at the time working on genetic engineering at Leiden university, Holland. We gathered all the information we could. We waited. We were told to prepare our home to raise a visually impaired child. We “blind-proofed” our house. We talked with our daughter. We kept on praying. The hardest part was waiting for all the developmental milestones to occur. We held our breath when he started walking. We took our time in the bath, playing with the water. He loved it. His laughter filled our home.

He was 18 months old when he reached out for his sippy cup. I thought it was a reflex or some kind of a mistake, so I put a different colored sippy cup in front of him. He reached out and grabbed that second one while still holding on to the first one. Wait, what?! So I put another one in front of him. He bent down to try and take a drink from it. As I grabbed my phone to call my husband, my entire body was quivering. That was the first confirmation that he has started to see things. Slowly, his vision started to get better. It was the beginning of a different journey.

Niko is now 6 years and eight months old and about to finish first grade. He started reading his ABCs at the age of 2 and a half years. He learned to write upper and lowercase by the time he was 3. His memory is astounding. His hearing is exceptional. He is legally blind. He loves riding his scooter to school, despite not being able to see more than a few meters away. Banging on his drum kit and obsessing over the things he loves, the latest one being countries of the world, the solar system and the human body are his favorite pastimes.

We still have to take all the precautions. He is careful when navigating new spaces. He asks for help when he needs it. He is learning his braille, while also using his magnifying tools and being a silly boy! Something I have learned in the past 5 years is that nothing is permanent. Practicing intentional hopefulness has helped us in dealing with the now. Asking for help, talking to professionals, finding a community of people who are going through a similar situation—and even simple things such as taking a 10 minute walk. The world is changing rapidly. Technology has made it incredibly accessible to get useful information. And we are learning and growing with him each day.

In the end, even if Niko’s sight was to have remained completely blind, we would have been OK. Every family has their own unique story. I know we are blessed and fortunate to have experienced a journey such as ours. As we travel through this life, the struggle is real. So is the hope. An integral part of our relationship with our son is that he is loved no matter what. And that is the voice I want him to hear in his mind. And that is the message I want to share with other families who are going through similar situations.