humansofnewyork:“It’s basically the newborn stage forever. He has both epilepsy and a very rare gen
humansofnewyork:“It’s basically the newborn stage forever. He has both epilepsy and a very rare genetic disorder. He can’t feed himself. He’s not toilet trained. He can’t speak. He can’t tell us if he’s sad, or grumpy, or hungry. He’s had more doctor appointments than both of us combined in our entire life. We’re actually heading to a neurologist appointment right now. The most difficult thing is finding peace and serenity. Every time he has a seizure, I’m afraid it will be fatal. People with his disorder don’t live very long. But the disorder also makes him very happy. So he’s oblivious and enjoying the world. But I’ve been traumatized. My husband is so supportive but a lot of days I feel completely alone. There have been times when I’ve filmed myself on my phone just to have someone to talk to. But every day I can choose to not be overwhelmed by my anxiety and fear. Instead of curling up to cry, I can choose to meet him with joy where he’s at. I felt loved by God when he was born. I was working as a special education teacher, so I thought that God had given me a perfect fit. We named him Iman Yageen, which means ‘faith without doubt.’ That name has become a reminder to me. I say it all day long when I’m trying to get his attention. And it reminds me that one day I’m going to hear him speak. If not here, then in heaven.” -- source link