As someone who is constantly fighting for a cure for blindness it is hard to imagine embracing blindness. Then, one day, I listened to a blind professor talk about how she embraces her blindness and that she’s not this flawed human being just because she can’t see. It got me thinking. By teaching my son that we should fight for a cure for his blinding disease am I also teaching him that he has this flaw that has to be fixed? Then I thought what would he be like if he was born without this disease? The fact is he wouldn’t be this amazing, smart, funny young man that is my son. He would be someone completely different. I don’t want that. This disease is part of my son and if I don’t embrace it then I’m not fully embracing my son. Even if there is a cure one day, this disease has been part of his life for years and it will always be part of him.
So how do I walk that fine line of wanting to destroy the disease and embrace it at the same time? What is good about a blinding disease? It’s hard to imagine anything good about it, right? Wrong. It’s introduced us to a whole community of people who support each other. It’s helped my son speak up for himself when he needs help. It’s helped him make adjustments in life when he should. It’s taught him to stand up to any challenges in his way. He has the school system, the Division of Blind Services, friends and family all there to help him if he struggles. This disease has actually opened up doors for him that most kids don’t get to walk through. Some might say he’s lucky until they remember it’s all because of this blinding disease. He never seems to be bitter about having the disease though. It is what it is and he just keeps moving on through life as he should. He fights for a cure though too.
Scientists are getting closer and closer to a cure each day so there is plenty of hope that my son’s disease can be cured. Some treatments have already brought sight back to kids with similar diseases so we know it’s possible. It’s a very exciting time.
Then I wonder what will he be like as a fully sighted person? Will he change? Yes, he’ll be able to drive and he won’t have to put books two inches from his face anymore, but what else will change? I hope one day we have the chance to find out. If it doesn’t happen, will the world end? Of course not. My son will continue his journey the same way he has been, with kindness, strength, and courage.
Probably one of the hardest things a mother can do is ask for help. When my son was in elementary school, I was able to explain to all of the teachers that he was visually impaired. Without any official accommodations, they were always amazing to work with. They had him sit in the front of the class and made sure he had larger print when needed. He always made straight A's and passed the FCAT with 4s and 5s, so why should we "label" him and make him go through all of the things that come with an official plan? Plus, I watched my brothers go through school being told they would have to work harder than anyone else just to keep up. They managed to excel. If I could teach my son the same thing, it would make him stronger, right?
Once he hit middle school, things got much harder. First of all, he had numerous teachers who had hundreds of students. They didn't have the time to make special accommodations. Plus, the writing in the books had suddenly become much smaller. For the first time, my son said he was having difficulty. All of a sudden, it felt like it was my own pride holding my son back. That wasn't right. I made the call to get him set up with an official Individual Education Plan (IEP) and we got involved in the Division of Blind Services (DBS).
Little did I know how much our lives would change. All of a sudden, people were bending over backwards to make sure my son had the accommodations needed. Within weeks, we had large print books for him, CCTVs in the classrooms, and teachers that embraced him and helped him however they could. Also, because he was given more time on tests and they were given in large print, there were no longer any 4s on the FCAT. He got all 5s. I never realized that by trying to make him "stronger" I was actually holding him back.
Now, DBS and the Independent Living for the Adult Blind (ILAB) got him involved in a summer work program and he gets to go do so many amazing things with other teenage visually impaired children -- things I could never afford to do for him myself. They are talking about giving him tours NOW of the University he wants to attend where he wants to be an aeronautical engineer. He's only 14 and already I feel like there's no way he can do anything but succeed and it's because of all of the love and support of family and friends, but it's also because of that day when I got the courage to call for help for my son. Sometimes, it's okay to ask for help. It doesn't make you weaker. In fact, it can open up a whole new world!
So, I always knew I had the chance of passing X-Linked Juvenile Retinoschisis to my son if I had one. After all, my brothers have it and my cousin has it. Basically, any male in my family who could get it, got it. There were different levels though. One brother was legally blind in one eye, the other legally blind in both. I think my cousin was pretty close or legally blind in both.
The minute I knew I was pregnant, I wanted to know if I was having a boy or girl, not just out of curiosity, but also for the fact that boys display X-Linked Juvenile Retinoschisis and girls only carry it. I found out I was carrying a boy. My husband loved baseball. He couldn't wait to hear that he was having a boy. In my heart I knew that if I was having a boy, baseball might not be an option. I tried to tell my husband not to get his hopes up. Playing baseball with X-Linked Juvenile Retinoschisis would not only lead to teasing (like I saw a boy do with my older brother and vigorously tried to defend him by hitting the boy with a baseball bat - which only led to us both running home in fear for our lives), but it could also lead to damage to the head and retinal detachments.
Anyway, I asked my OB/GYN how I can check to see if the baby was going to have this disease. She asked me, "What does it matter at this point? You're pregnant." I realized that she was right. No matter what the circumstance, we would learn to deal with it and love the beautiful baby we were about to have.
My son was born in September and it took us about three months to find a doctor in Jacksonville that knew how to diagnose X-Linked Juvenile Retinoschisis. Once we found him, we were hit with the news that the 50/50 chance my son had of getting this disease totally didn't work in our favor. After a painstaking four hours of diagnosis, metal clips that held his eyes open, and many screams from my precious baby, we learned that he had the disease and he had it pretty bad. The doctor drew out a picture of where the cysts were in my baby's eyes. He explained that my son would be lucky to have anything close to normal vision but that we really wouldn't know until he was older and could take more tests.
My husband couldn't even stay in the room to hear the screams of his son. Once he heard the diagnosis and his dreams of a baseball playing son immediately vanished, then came the blame game. Not to say my husband blamed me. I think he just blamed himself for marrying someone he knew had the possibility of carrying this disease.
Regardless, he loves his son very much. He's not my husband anymore though.
I guess I took a different approach. Number one. Never let my son feel sorry for himself. Number two. Never let him use his visual impairment as an excuse. Number three. Fight to do whatever I can to end this disease and help raise money to find a cure for my son. Number four. Make sure my son, nieces and nephews NEVER have to go through the moment a parent finds out their child has a blinding retinal disease. Number five. Find others out there like me because I knew I couldn't deal with this alone....
Blog number one. That was just when my son was a baby. He's 14 now so I have many more blogs to come. I welcome any comments or contributions to the blog from other moms, dads, kids with retinal degenerative diseases (regardless of your age), grandparents, you name it...