Seeing Through the Sightless Eyes of my Son
The year 1993 was by far the worst year of my life, you know what I mean? We have all had them and if not just keep living. I was pregnant with twins and went into premature labor on June 30th of that year. One thing that the tragedy taught me is that holidays do not care. While the country was preparing for the 4th of July, my husband and I were pleading with God and anyone that would listen for the lives of our children. Our lives appeared to stop, hours upon hours in the hospital only leaving to shower and return. Always afraid to answer the phone because of fear that the worst news possible would be delivered. Tragically my daughter died on the 5th day of July and was buried the day before her fathers' birthday....holidays do not care.
There is no way to describe the pain and despair that was felt between my husband and I. We were young and alone with no family support. Even after the death of our daughter we had to return daily to fight for the one that was left behind. People are so quick to judge and tell you to get over it, but you never get over it, you get through it. In this time, I saw the very best in some people and the very worst in others.
J as we call him made it, and after 6 months of being in NICU he was released. J was left with his retinas so badly damaged by the oxygen that he needed to save his life, that the doctors predicted that within one year he would lose his eyeballs. We were given the option to have surgery to remove his eyes, straighten out the retina and then see if this would give him some form of vision.
After discussing it and accepting the advice of J's vision doctor, who was against it though he would have been the one to conduct the surgery, my husband and I decided that a 50% chance of his losing his eyes was too great to risk, so we declined and have never regretted the decision.
Twenty years later, J is a thriving young man with his badly damaged eyeballs still where they belong and the ability to see light, many blind children do not have this luxury. His best friend has 0 acuity so he sees nothing but darkness. As far as J is concerned, God has healed him and he is a survivor. J is such a pleasure to be around and very kind. He has one sister so he picks on her like his brothers do. I told J how happy I am that I had the opportunity to meet him and that he is dearly loved by his family. Do not believe for a minute that those years in between were easy. The years were filled with lost hope, worry, stress, indescribable depression and concern for what his future would be like.
Even though J was proficient in reading, the local school district tried to classify him as mentally retarded but his blind teacher and the family refused that tag. J was refered to the Texas school for the blind and visually impaired where he learned social skills and living skills such as doing laundry, budgeting, shopping, even cooking and baking. J will always require assistance but when he says he wants to cook, we indulge him. We used to take him food shopping and walk around the grocery store for select items for his far from gourmet delights, now we take him to the grocery store and let him request a shopping assistant; he loves this form of independance.
It is so comical when he is reading the instructions from his braille recipe book because someone always asks "J are you sure? " his reply is always "that is what it says." Unfortunately we did not learn braille as it is very difficult but we had to learn to trust him. His cooking is limited but tasty, we are working on his kitchen limitations as we speak. J was not mentally retarded at all, but was tested at TSBVI and diagnosed as being a high functioning autistic child.
J began learning braille in Kindergarten and surpassed the student in reading who were sighted.The principal of the school called to say he had never met a kindergartner read as well as J did. Many people beleive that all blind children know how to braille, not true. It is a special skill and it will not be possible if there are poor fine motor skills. A blind or visually impaired child can go through their entire schooling from k-12 and never learn to read an ounce of braille.
In 2013, J was invited to join an honor society at the local career center that he attends and is learning how to fix computers, we have a few hurdles to get over but he is determined to succeed. Who would have thought; from mentally retarded to being invited to join an honor society? Today because of J's incredible spirit and faith, a young man who never cried, complained or got angry over his affliction, who will get up and boogie down to gospel music and give God the highest praise still believes that God will one day give him sight.
J showed us what love and faith in God really is. I have to stand there at times and look at him, even questioning his sanity because of the positive energy that is released from his pores; how this young man stays so positive and faithful to God is a perpetual mystery and I will never understand it. J says that he will never give up and that nothing will ever take away his faith because he has accepted his blindness!
Despite his sightless eyes, I was the one that had the moments of anger, depression and multitudes of tears and countless questions of why? Any parent with a disabled child understand what I am saying.
I am currently in the process of obtaining my Ed.D in Education with an emphasis on organizational development, but my dissertation will focus on the blind or visually impaired to ensure that these individuals have a fighting chance for positive employment after high school. After that I plan on starting a foundation in the name of my daughter.
I want to tell parents to fight for the rights of your children. Never allow anyone to put a tag on your child that they do not deserve and allow your child the right to decide what they want to do, not what others think they should do.
My child was told that he should work in a hotel laundry room. I said no, he has more to offer than that. J currently works part time and is responsible for brailling lunch menus for other children, editing braille media for the blind teacher and responsible for helping to fix problems with assistive technology. If J cannot fix the problem, he is responsible for getting in touch with someone who can.
Never give up on your child. I made a promise to J after his sister died, that he would get the best care that we could possibly give him. We are not rich and even had several times of having no lights, phone, cable or money to purchase gas for our car, but God remained faithful.
We have always pushed our children and supported J in his decisions. If he fails so what, we will continue until we find something that works for him. J's desire is to attend college in a classroom which is something he previously refused due to his autism and inability to be around large crowds or stimulation. Because of J's sightless eyes, I can see what faith, love, kindness, bravery and perseverance really are.
This story is dedicated to my daughter Charisse T. Davis, her siblings and all of the parents who have children that are disabled and think that they have to accept what others tell them........ you don't!
No matter how dark it is just keep walking, you will see the light at the end of the tunnel and it will get bigger with each step that you take. You are going to be just fine so long as you do right by your child. Push them as far as they dare to go, they will surprise you.
****2016 Update***** J is currently in his second year at a community college and he is hanging on for dear life!!! It has been tough but that is part of the fun isn't it?