Have you ever seen an eye test done on a floppy 4 month old? It was amazing to watch. Special lenses, bright lights, crossword puzzle like panels where she watched how his eyes flickered to focus. Very interesting. Trying to determine just what Cayden could actually see took quite a while. After all those tests, we had to wait for the dilation drops to work, (which took over an hour!) to check his optic nerves. He hated the bright light she used to check his eyes & optic nerves, and kept closing his eyes tightly. But the woman was a saint, with great patience and passion for her work.
After all that poking, prodding, and holding his eyelids open, I was given the diagnosis. Cortical Visual Impairment due to small optic nerve. Possibly blindness due to the brain malformation, and uncertainty of whether his brain could even process the images his eyes & small optic nerves sent it. Ptosis, causing smaller field of vision. At this point vision uncertain. At a subsequent visit, I was told that combining all these factors, he could be considered legally blind.
Legally blind. Wow. Legally blind doesn’t mean he couldn’t see at all. We could tell he could see some things, just how much was uncertain. Eyes continue to develop for a time after birth, but his didn’t seem to be keeping up to standard development.
This was a huge hit to our hearts. We already knew he was profoundly deaf, & most likely would not be able to walk. But blind too? What did that mean for his life? To be in a wheelchair, that was manageable. To be deaf, we could (& did) sign with him. But to not see too, that was Helen Keller territory PLUS. I was reeling. I just imagined him sitting in a corner, no stimulation, no input. Blind, deaf, mute, lame.
But the ophthalmologist had some hope for Cayden. She offered intensive vision therapy for him, which had been shown to bring improvement to children with CVI, perhaps not bringing normal vision, but possibly some improvement. The brain had to be taught how to process the images that did slowly come in, and challenge it with exercises to make it work harder.
So we threw ourselves into that. I think we had every light-up, vibrating, music-making toy on the market. We had a therapist come frequently to work with him and me, teaching us exercises meant to stimulate his vision. We worked on following an object across center line (there was that pesky center line issue again, and that processing glitch due to the P-ACC). We worked on reaching out to grab an object he saw (doubly challenging since his arms didn’t want to work well). We worked on turning his head to follow an object, and not turning his head to follow an object. We worked on perspective, near and far, up and down.
Did you know there was so much to seeing? This is stuff that comes naturally to a typically developing child. But for Cayden, it had to be taught, it was work, it was HARD! But he did it. He was a hard worker. He was progressing.
When C was 7 months old, he had ptosis surgery to correct his droopy eyelid. This was an interesting procedure. They take a small rubber-band like piece and insert it into his eyelid in a sort of a loop. This basically ‘springs’ his eyelid into the open position, allowing for a larger field of vision. However, the downside was that he then had to learn to physically close his eyelid by working against the rubber band at every blink, and at sleep. For quite a while, we had to be dedicated to put a lubricating gel into his eye several times a day, to keep his eye from drying out and being injured from always being partly open. But it was really worth it for him. His vision did improve… two eyes are better than one! God know what he is doing!
The other downfall to this surgery was Cayden’s photophobia (super-sensitivity to light) was even worse. He couldn’t fully close his eyes against the sun or other bright light, and he would scream and cry if the sun got in his eyes. I can still easily picture him grimacing, wriggling, and crying, trying to get in a position in his carseat to get out of the sun!
So we invested in special shades for the carseat, strollers and wheelchair; he always wore hats or sunglasses. We played outside at dusk, rather than mid-day. We adapted. He thrived.
After several years of hard work on the vision, during which his main communication input was visual (remember he was profoundly deaf), his vision did improve. He could see his books, he could look at an object within several feet up to across the room. He could track up, down, left, right. He could reach out and try to get something he wanted.
When he was right around 2, we visited the ophthalmologist again. Same tests. Same doctor. But this time she said his vision was age appropriate! He was off the legally blind list for now. He did not need glasses, but we would continue to follow his progress to see if they might be necessary. Praise God! The blind child could see.
I firmly believe that if Cayden had been able to hear, he would not have been able to see. His hearing would have compensated for the lack of vision and that would have been his input source. But since he couldn’t hear, ALL his input had to come from his eyes. The double deficit made his brain work so hard to stimulate the vision center that it started to work, if not completely properly, at least functionally. Like I have said before… the brain is an amazing work of God, capable of much more than we can imagine.
Jesus is the great healer. So many times we read in the Gospels about his healing powers. People today often forget that in Him, can come true healing. John 9:18-25 tells the story of one man’s healing:
The Jews still did not believe that he had been blind and had received his sight until they sent for the man’s parents. “Is this your son?” they asked. “Is this the one you say was born blind? How is it that now he can see?”
“We know he is our son,” the parents answered, “and we know he was born blind. But how he can see now, or who opened his eyes, we don’t know. Ask him. He is of age; he will speak for himself.” His parents said this because they were afraid of the Jews, for already the Jews had decided that anyone who acknowledged that Jesus was the Christ would be put out of the synagogue. That is why his parents said, “He is of age; ask him.”
A second time they summoned the man who had been blind. “Give glory to God,” they said. “We know this man (Jesus) is a sinner.”
He replied, “Whether he is a sinner or not, I don’t know. One thing I do know. I was blind but now I see!”
We are not afraid to acknowledge that Cayden’s healing came from Christ. Some would say it was not. But we were his parents. He was blind, and then he saw. His small brain, his small optic nerves, his ptosis, all worked against his vision ever working correctly. I believe those biblical parents also knew the truth, but fear kept them from proclaiming it loudly. I urge you to not let fear (fear of people laughing at you, fear of skeptics, fear of other jealous people) stop you from sharing the truth you know in your heart. Healing can come, and does come from Christ alone.
Tomorrow’s installment… The Deaf can hear!