Friday, May 1, 2009

Such Serious Thoughts For Such A Little Person

Fox spends a lot of time inside his head.

He's a lot like his dad that way. You can be speaking to him, and he will be looking right into your eyes, but nothing is being transmitted to his brain. It's miles and miles away.

I often wonder what he is thinking about that so totally consumes him. Most of the time I think he's designing incredible buildings or inventing machines the will revolutionize the world, or carrying out epic battles between Power Rangers and Pokemon characters. Every once in a while, however, he gives me a small look into what is really going on, and I must say, it's a lot deeper and more introspective than I ever give him credit for.

Mrs. Robinette, his braille teacher, told me a few months ago that she has noticed that Fox internalizes a lot of his feelings about his disease, and he only reveals those feelings at rare and random moments. Last night I witnessed one of those moments. After the hilarity of his arm-pit farting concert, he suddenly became very serious and blurted out:

"Mom, I won't know what my kids look like because I'll never be able to see them, will I?"

Where did that come from? Five minutes before he was giggling so hard I thought he might have an accident, and now he's asking me if he'll ever be able to know what his own children look like? I was completely caught off guard. It's hard to answer that question. My uncles still had some vision during their child rearing years. My brother is getting worse and worse, especially at night, but I think He can still see defined forms and color. Fox is an anomaly though. He was diagnosed earlier than anyone else, and his vision loss is progressing faster than the pattern that was seen in my uncles. His first doctor told us that by his late teens his vision loss would be substantial. But who knows? Science and research are moving so quickly- perhaps there will be treatments before his vision is too far gone.

I told him that I felt very confident that he would be able to see his children. His follow up statement was even more heart wrenching, if that's even possible.

"I don't know why I'm even thinking about children. No one is going to want to marry me"

"Why would you think that son?"

"Because what woman would want a blind man for a husband?"

There aren't words to describe how devastated I was by his perceptions of himself and his future. We've talked so many times about how the whole wide world is still open to him- how he can do and be anything he chooses as a blind man. It appears he picked up on the one element of his disease that he can't control: other people's reactions. At 8 years old he is already world-wise enough that he knows that people with disabilities are viewed as "damaged goods". As bigoted and illogical as that is, it is still a pervasive prejudice in much of the world. His mind is making connections between how he views himself, and how his family and doctors and teachers view him, and how people outside of his support system view him.

I don't know how to explain to him in an age-appropriate way that it will be harder for him to find the right person. She will have to be sympathetic, understanding, patient, hardworking, supportive....the list goes on and on. And while there are not many women out there that could handle it, I do know with a surety that Heavenly Father will lead my son to one of these choice women. It may take a little longer than it does for others, but she's out there.

She'll probably have to be an angel, but then again, so is he.

So that's what I told him, that he is wonderful and amazing and that he'll find someone just as wonderful and amazing that will want to share a life with him, no matter what kind of physical limitations he has. I'm not sure if he believes me or not, but thankfully we have lots and lots of time to work on it.


  1. That is so sad. I was totally crying while I read that. I am so sorry loma, life is so unfair!

  2. Thanks super sis-in-law. Love ya tons.

  3. Man, tear jerker. I think there are plenty of nice girls out there that won't be able to resist his good looks and charm regardless of vision impairment. That really stinks that he is already thinking about these insecurities. I think we all have something we are insecure about that we have to overcome before finding a spouse but his is way tougher and he has noticed his way earlier. He'll have to figure out a lot earlier than some kids that our bodies are flawed and just a vessel for a wonderful spirit and that who he is can not be held back by any disability. I do have great hope for the medical technology coming about in this area too though. Each generation benefits so much more from medicine than the one before. Just think about Leukemia for instance, when I was a kid I had several friends die from it and now I've seen so many beat it. It's great.