Before discovering I was pregnant with J.T. I was a hot mess. I won't even lie. I did what I wanted, when I wanted, and was all about immediate gratification. I was morbid and allowed myself to float from bad situations to worse situations. The very day I found out I was pregnant with J.T., I began to live. From that moment on little man has given me the strength and courage to leave an abusive relationship, clean myself up, and commit to a respectable existence. After a difficult pregnancy and a simple labor I finally held him in my arms. In 9 short months I had completely changed my entire world for this little tiny baby, and every tear I had shed was worth it. He was born adorable and bright, even now he is handsome and fiercely intelligent.
Around the age of 1 my cousin Steven, J.T.'s Godfather, commented that J.T. was a bit cross-eyed. After slapping my cousin in the head I made an appointment with an opthamologist. Following a morning of eye drops and waiting, the doctor came in and began to write. He asked me if I had ever heard of neurofibromatosis. With those written words, my heart broke into a million pieces. How could my precious, perfect, beautiful son be carrying the same disease that had ravaged the lives of everyone I know? I prayed everyday, everyone I knew prayed everyday, yet God still found it necessary to allow this to befall my little angel. I couldn't breathe, I couldn't think, I really couldn't breathe... I started to hyperventilate. At some point I let the doctor know that yes, I knew what neurofibromatosis is, that I have NF2, and I was well aware of what I was being told.
The following days were a blur. Referals, MRIs, neurological exams, insurance claims. All things I had dealt with my entire life, I couldn't believe I was now doing thess things in relation to my baby. A blood flow exam of the eyes revealed J.T. was born with retinal harmatomas, tumors on his retinas. In his right eye the tumor blocked 80% of the retina, causing his vision to be 20/800, which is legally blind. In the left eye was another small tumor that was thankfully not causing any problems as of yet.
Every year J.T. will be followed up and seen by a neuro-opthamologist, have MRI's and be seen by a pediatric neurologist. So far each year there has been no growth, and his eye has strengthened to the point that he can see a bit more. Next Tuesday J.T. is having his annual MRI's and visit to Dr. Loudon, his pediatric-neurologist. All I can think is: Will this be the day the doctor tells me my baby has a tumor in his spine or brain? I was well aware from the first day I found out I was pregnant that he may have NF2, and this was the inevitable direction the disease would take, but was too self-involved and immature to absorb the reality of that risk.
Would I have changed a thing? Would I have been more careful? Should I have been? All I know is J.T. is the light of my life, he showed me what it means to be somebody's baby. Everyone is somebody's baby, and because of him I actually care about the world and myself. He is a beautiful person with his own purpose in life, and I am just grateful to be blessed with the gift of raising him. So would I have changed a thing? Never.