As I stare at Miguel fast asleep in his crib, I can’t help but look back at our experiences together both good and bad.
When he was born, I remember holding him in my arms for just a few minutes before they whisked him off to the neonatal intensive care unit. He was so tiny and fragile and I could tell immediately that there was something not right. What I distinctly remember was the shape of his head and how I could feel every bone in it. My three older girls were not like that but I thought that Miguel might just be different. There was nothing to worry about. But when the paramedics came to rush him to the Children’s Hospital, my suspicions grew stronger but I still shrugged them off. I didn’t want to entertain the idea that there was something wrong with him.
They found nothing until two months after when we took him to emergency because of persistent coughing. The doctor on duty noticed his small head and quickly referred us to a pediatrician who told us that Miguel has microcephaly. I remember feeling so crushed. I wasn’t able to focus on what the doctor was saying. I just cried and cried and cried right there in her clinic. That was the worst day of my life.
Several tests followed. One appointment after another to different departments in the hospital was arranged: neurology, genetics, biochemical diseases and radiology. We were also referred to a number of government agencies assisting families with disabled children. In the midst of all these, I still held up hope that they would eventually tell me there’s nothing wrong with Miguel and that he doesn’t have any disability.
It only sunk in when we received his MRI results. Yes, he has a disability. There were all these medical jargons basically stating that he has problems with his brain.
Fast forward to today, Miguel’s head is still smaller than the average child of his age. He still has low muscle tone. He is mostly fed through his G-tube. He now has epilepsy which makes him take two medicines everyday. He has development delays. He is just learning to sit by himself. He wears eyeglasses because of his strabismus. But he has grown to be a happy little kid with always a smile in his face.
I know we will be facing more challenges as days pass by but I believe that our love for Miguel will get us through.