I remember like yesterday the dark room, the doctor's negative tone and the empathetic nurse practitioner's presence. We knew that Trenton could have eye issues, but I had seen the way he had stared at me one of the first times I had held him. Surely, he could see.
The doctor's prognosis was overly grim. Our son had a coloboma of the optic nerve. Not only did this mean that he likely had CHARGE syndrome, it also meant that he would likely have little to no vision. This was very heart-breaking. At this point, we already knew that that he had failed his newborn hearing screening and the thought of having neither hearing or sight was a huge weight on us. The Lord helped us through these days, and as Trenton grew, we saw what science does not see. We saw that he could see.
At his first eye appointment with the first doctor who had diagnosed him, the doctor seemed happy with Trenton's progress, but still said that he could have 20/200 vision with correction and be legally blind.
Today was his follow-up appointment. We were supposed to see that doctor again in March, but the Lord led us to NY where my husband is pastoring a church. We have been slowly transitioning Trenton's medical issues to various specialists here. The doctor today examined Trenton and actually knew quite a bit about CHARGE (miracle in itself). What is obvious to us was obvious to him. Trenton can see. The doctor examined the optic nerve, and miraculously the part of the optic nerve that deals with being able to see the most is still attached. The doctor believes that Trenton may have little to no vision issues!
It's a miracle.
Every night before bed I sing the song, "Amazing Grace" to Braydon. The first time I sang it, he was in the NICU when he was on oxygen soon after birth. I held him in the premee "hug" with hand on head and bottom. How little I knew about that song at that point. Yes, I knew of God's amazing grace to save me from my sins. That grace however extends into every area of my life. I see it in the birth of our first child who was born early. If it had not been for that difficulty, our Trenton would not be with us. I see it in the phrase, "I once was blind, but now I see." This phrase is significant spiritually, but it is also significant physically. Since Trenton's diagnosis, I could not help but often think about his situation, and now, we can happily say this phrase ourselves about him. Our God is a gracious God. He is not gracious only to provide our salvation from sin and hell, but He is gracious to give us help in times of difficulty. He knows when we are in need of of good news.
If your child has a genetic syndrome or physical difficulty with a bleak diagnosis or even one that has so many unknowns, try not to sell God short. Science only knows and sees so much, but God has it all predetermined, and in the right time He will show Himself strong and gracious right when we need it. When it does not seem to happen the way we desire, and He seems silent, we must count ourselves fortunate to be trusted by God with this trial of our faith to ultimately bring glory to Him.