Light sensitivity is one of the many symptoms that Ocular Albinism brings. This is the thing (so far) that has caused him the most pain and difficulty. Luke has adapted well to the low visual acuity, to the point that many do not realize the he has trouble seeing…the sun he has not adapted to. The sun’s strong and persistent rays will cause him much pain in life. I cannot and should not always shield him from it. I keep thinking how powerless we are––the sun is mighty and the sun will always be here. But I/we do not have to feel powerless.
It hit me this morning…the world does not adapt to us, we have to adapt to the world. Luke should not be afraid to walk in the sun’s light. Yes he will have to take precautions but he can beat the sun. Really, life is like the sun––people are like the sun in that we all have the power to bring warmth and we have the power to bring pain. However you keep going. You grab your hat and when the sun beams are even stronger you grab your sunglasses. Then you look up to the sun and are proud that you didn’t hide in the shade.
That is my new perspective, that is what I will show Luke. I will hold his hand and walk into the light. Then when he gets older I will loosen my grip and one day (many years from now) I will let go….but I will always have my hand ready to grab onto when he needs me again.