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GOPBC Members' Stories

(A work in progress.)

I'm going to post this as sort of a rough version of what I have to say because I'm tired of seeing the page as a blank place where people are going to post their child's story.

If you want to post your GOPBC child's story here, I hope you'll do so-- all you have to do is email it to us – use my email address: rholloway@gopbc.org, and remember, you can always post a new story or remove your old postings and revise them-- all you have to do is ask.

When my family first entered this "strange new world" of dealing with "special needs" (dealing with blindness in our case) I had a rough time finding stories of people's experiences that were similar to ours, so it is my hope that stories which get posted here can be both a chance for us to share our own experiences and an opportunity for others to be helped by understanding what others have gone through in the past. In fact when we were first involved with this situation, we also couldn't find any parents groups for blindness in Georgia so my wife and I got involved with one other parent through the NFB of Georgia. Now there is a parent group in Georgia. One person, (or a few in this case), really can make a difference so I encourage you all to get involved however you're able.

I truly hope this can be one more thing that can help families new to these situations find various ways to cope with the stress and frustration that many parents of blind children discover as they adjust to what is for most of us a major change in our lives. With that said, my story follows:

I have three children. Many people would say that two of them are "typical" and one is blind. The fact of the matter is, I prefer to say that I have three typical children, one of whom happens to be blind.

Some people can't decide if they should actually say their child is "blind" or "vision impaired". In today's world of "political correctness" I think far too much time is spent worrying over such matters. I recall our trying to decide what we should tell people about my daughter at first to explain her condition. Part of the reason for many of us to falter when we try and label our kids' conditions is that "blind" has such a stigma attached to it, but it really shouldn't have – at least that's how I feel now. Blind describes my child's condition, that's all.

My blind daughter was born on September 11, a year, to the day after "the" September 11 we all know so well. I never imagined after the horrible day we all went through a year before her birth what a strange mixture of emotions I would encounter at my child's birth. Kendra is my second child, but my older daughter was born from a previous marriage, so as it turns out this birth was my wife's first. We had such joy and expectation leading up to her birth and no indication at all of any medical concerns, so when a problem was discovered at birth, we were totally caught off-guard.

I have come to generally say that Kendra has been totally blind since birth because for most intents and purposes, that is true, but for the purpose of this story it really is not true. Kendra was born at DeKalb Medical Center – a well staffed and modern hospital near our home, and in fact the same hospital where I myself was born some 40 or so years ago. There's no story of malpractice here and I have nothing bad to say about having a child at DeKalb. In fact, we had another child at the same hospital just a couple of years ago. We'd never have done so if we suspected any problem had been caused by the hospital.

Kendra's birth was pretty typical except that she came really quickly. We had no signs of concern before she was born and no indication of any problem at all right until Kendra was born. Just as she arrived, the doctor had a look of concern because one of Kendra's eyes was swollen. She didn't want to open her eyes yet and there was an immediate thought that there has been some sort of trauma that cause her eye to swell. In their concern to check on this, they quickly whisked my daughter to the corner of our room and then off to a special nursery – my wife never even got a chance to hold her first born child at the time of her birth.

Over the next few hours we came to learn that Kendra's eye was not swollen, rather it was the "non-swollen" eye that was of immediate concern. The first eye was "normal" (as far as we knew) and the other was basically missing. Still later we would learn there actually was a very small, chaotic eye there as well, but that has never given any indication of doing anything for Kendra vision-wise.

So there we were – stunned that our child would have vision on only one side. It seemed that nothing could be worse, but we had no idea of what we were in for as our journey progressed. We learned that Kendra's "good eye" had cataracts, but fortunately, her field of vision was not obscured. That may have been true, but by her two month "well baby" checkup, she had no red-reflex in the eye. An already-scheduled plan to get to a specialist was very quickly moved up. It is a serious thing for a child to have potential vision loss in one eye, but when that's your child's only eye there is a sense of urgency to get help that is virtually indescribable. We simply had to "fix" this situation at all costs!

Next we learned that we would have to do a lensectamy to remove the cataracts. Kendra would be fitted with strong glasses to offer a fixed field of vision in her "good eye", since she was too small to have an artificial lens put in her eye. (As she grew such a lens would have fallen out and floated around in the eye.)

Things were seeming worse and my wife was now in intense information-gathering mode. I read and researched a lot but my efforts paled in comparison to Stephanie's in these matters. At first I thought she'd just have a lens put in when she was older, but then we learned that such a later surgery carried certain risks and we knew we'd face some tough decisions down the road. So we had now moved from having a greatly reduced field of vision to a situation of "low vision" that was undeniable by any standard. Surgery was scheduled and we sat and worried.

Surgery came very quickly because time was of the essence to save what vision we could. At her early age there was a danger that she might have serious problems learning to make use of her vision if her brain had nothing to "look at" for too long. The surgery was to take something like an hour and a half, so we sat and waited in the waiting room at the Hospital, but all too soon one of the surgeons was coming out to see us. There was another problem.

It seems Kendra had PHPV. They have since changed the name, but it meant that some connections were still intact between the lens and the retina which should have dissolved before birth. That meant it was time for a new surgeon-- a pediatric retinal specialist this time.

Surgery was again quickly scheduled and this time it was completed. We got glasses fitted soon after and began to enter the world of trying to just be parents, but within a few weeks there was a change of color in our daughter's eye. Her vision was now clouded by bleeding inside the eye and her eye's pressure was going up. Frequent follow-ups were truly almost too much to handle as we waited for the problem to clear up.

Finally at one visit, the pressure in her eye had dropped and was normal. It was the most relieved I think we ever felt. We smiled and joked a bit about how we would finally relax that night. We just needed a quick ultrasound of the eye to be certain everything was alright. I felt so much better, especially seeing my wife smile and relax, but I still felt uneasy. As usual, I sat and held Kendra for the ultrasound, so I could see the monitor as they looked inside of her eye.

Something looked wrong to me. Still, I said nothing-- was I going to upset my wife, hopefully for no good reason? Not a chance, but I was so worried inside. I have no ultrasound training at all, but something was clearly floating and moving around in the ultrasound. A few minutes later we knew why the pressure in the eye was normal; it seems that when a retina detaches, that makes it possible for pressure in the eye to go down far more quickly and that's just what we had on our hands. Kendra's only retina had suddenly fully-detached and our daughter had no reasonable possibility of having any vision as long as that was the case.

Yes, some minimal vision was possible still but that would quickly fade if the retina was not quickly reattached, and so additional surgery was again quickly scheduled. The reattachment attempt was to close any openings (tears) in the retina and to try and let it fix itself as there is more danger associated with reattaching it as such, but after that we had no progress, so we tried again. Unfortunately, when we went to "try again" the retina had shriveled into a little mass and was now beyond any repair. The doctor said it would have been like trying to line a basketball with a liner the size of a tennis ball. Choose any analogy you like-- what it ultimately meant was that Kendra was completely blind.

All of this happened between the age of two months and six months, so did Kendra ever have vision? Technically yes, and my wife even recalls one time when Kendra saw her mommy and reacted. Just once. I'm glad that happened and I do hope that somewhere inside of her, somehow that vision remains. That was over five years ago and it is still very hard to think about.

As I indicated above, this is my second marriage. When I divorced, I recall discovering it is like experiencing a death in many ways. I'd heard it before when others I knew had divorced, but that didn't make sense when I heard it. It made a lot more sense when I went through it. So it was for me when my child "lost her vision". I say that in quotes because there wasn't that much vision left to loose at the end of that situation and yet still, we had hope until the final surgery. There is a terrible loss of expectation and a feeling of hopelessness that comes with any great loss and my child's loosing vision certainly comes in high on that list for me.

Now here is the strange part: Hopefully this is the point where perhaps I can offer some good news... With all the terrible pain and frustration over Kendra's failed surgeries and lost vision, ultimately there came a comfort, because we had worried so much and tried so hard to figure out how to save some vision and we kept thinking it could get no worse, but it kept getting worse, but now, finally... FINALLY, at least as far as vision goes, we knew it could truly get no worse.

We are very fortunate that health-wise, Kendra had been very typical in most all other respects. We had some hearing concerns, but apart from ear-tubes being put in for chronic ear infections and of course we get bumps and bruises with her– just like with other kids– apart from her vision loss, Kendra is just fine.

Some people may read that and say it makes no sense at all. How can she be "just fine"? That can't be, can it? After all. she's blind. She won't be able to do anything or ever be "normal", right?

In truth, I suppose such thoughts must have run through my mind at one time or another, but it just is not the case and looking back such thoughts seem absurd. The biggest challenge that my daughter faces is the people around her in life. So many people assume that she needs help with everything, but she doesn't. The people who need help are people like me – the parents who have no clue how to best convey things without visual techniques. You can't just point or say "watch me" or "look at that". You have to describe and demonstrate things physically, and for most of us, that's all brand new.

I felt real panic when all this started – I knew I'd have to figure out how to adapt the entire world for Kendra. I knew I'd manage somehow, but it was going to be a major undertaking. But over time, I have come to realize that Kendra's not the first blind person in the world and not even the first blind child. It turns out that most of the problems that we have needed to deal with so far have had solutions already available. Some are rather obvious (if your child doesn't have enough vision to safely ride a bike down the road, get a tandem bike). Some are less obvious.

By the time Kendra was strong enough to crawl out of her crib, we realized it was a long way from the top rail to the ground and it seemed a bit more dangerous to us for her to be doing that with no vision than for a typically sighted child. (We may have been wrong about that actually...) The night we found Kendra literally asleep on the top rails of the crib (she was hanging over both sides at the corner of the crib, completely asleep) we knew we had to figure something out. A thing called a "Crib Tent" helped us keep her more safely in the crib for a while, but we didn't know how we were safely going to keep her in a "big girl bed" at all. None of the side rails seemed likely to help, so how would we keep her from falling out of her bed? Well. it turns out there was a trundle bed under the day bed that was already in her room, and it also turns out that if you pull that lower bed out most of the way, you end up with a "stair-step" situation with the mattresses such that if you roll out of the upper bed, you fall onto the lower bed and if you roll out of the lower bed, you "fall" about a foot to the floor-- not a major hazard really. Of course it probably wasn't a huge hazard without the lower bed either-- the potential fall to the carpeted floor was minimal as well and these days (at age 5) she's certainly no more likely to fall out of the bed than any other kid her age.

Many, many things can be marked tactually if kids can't see them, and things have particular smells. Things are warmer or cooler, or near particular sound sources... Basically there are a lot of things that can help us find the location of items and which can help us to know what they are which are also completely non-visual, but many of us have never paid a lot of attention to that.

Certainly we are early in the education game, but we are already over three complete years into school with our daughter and while that has not exactly been easy, we've gotten through it with great results. (Kendra is in Kindergarten as of last week.)

Even before she was reading well, we had many books for Kendra in braille so she could feel the braille like a young sighted child could look at letters and words as you read to them. Now she reads them on her own, and very well– just like she writes on her brailler as well as or better than most of her sighted peers can write! We have braille labels on lots of things around the house-- exposing Kendra to braille like a sighted child would see print all over the place. Kendra has been using a brailler for a few years now and can already braille many things not only in grade 1 braille but lots of things in grade 2 (contracted braille). We're even moving into her using a computer now using screen reader software called JAWS as well as a refreshable braille display. The same display works on her PDA, called a PAC Mate and instead of printing things out from her computer, her output is "embossed" in braille. The more time goes by, the more options we find and are able to acquire for our child and the more things seem to come together. There are books on tape from many sources which are also a nice option.

Movies and TV shows generally have audio that is fun to listen to and it turns out there are also so-called "described" programs on TV and on video tape (and DVD) which tell what's going on between the dialogue in the program. There are even a few theaters around that offer a limited number of movies with headphones that play an audio description as the movie runs.

I now know a good many blind adults and they have taught me a lot. I know a blind fellow who made a point of cleaning off his own roof a few times before he'd hire someone to do it, because he wanted to do it for himself. With proper training & education, blind people can do nearly anything. I only recently learned that many ATM's have headphone jacks where a blind person can plug in some headphones and use the ATM with audio feedback. Recently, several solutions have been released so that a blind person can use a PAC Mate (or similar PDA) and a portable bar code scanner to discover what most any item on the shelf of a store is, completely unassisted. One can even use the camera in some cell phones to convert photos to recognize and speak text when it is photographed. Numerous GPS solutions exist to speak GPS directions just like many sighted people have directions spoken or displayed on a screen. The list goes on and on. By the time Kendra is old enough to drive it may not even be out of the question that there will be a car that can drive her. We're not counting on it, but we're hopeful.

Kendra likes to swim and having taken lessons for a year or so now, I think she swims better than most kids (and certainly better than I do!). She likes taking ballet & tap class. She's a Daisy Girl Scout (Daisies come before Brownies). She has enjoyed gymnastics classes in the past at the local recreation center as well as Gymboree for quite a while. She used to go to music classes often. Now she plays more instruments than I could even name at home from pianos to guitars to drums and even the harp. She has quite a musical gift and it is a joy to see it developing. She writes creative stories and brailles them for herself. She reads stories to her little brother. She likes to sing and make recordings. Kendra is a busy young lady and she quite honestly wears me out, but I think it is fantastic!

Save to say that Kendra, like many blind children and adults, is as active (or perhaps more so) than most sighted people and at an appropriate age, blind people do what most everyone does– getting around town on foot, by bus, rapid transit, or cab and there's no reason they cannot travel unassisted on trains, boats, planes or anything else you could think of.

The NFB has special associations for groups like blind Lawyers and Doctors and Nurses, so this is not theoretical stuff that I'd discussing. Blind people can and do grow up and go off on their own, just like everyone else. They have careers and get married and have children and all those things that we want for all of our children– just like everyone else.

I guess that's a bit beyond the scope of "Kendra's Story" at this point. After all, she's not quite six years old yet. But it will be part of her story. My wife and I are going to make certain that the first part of life goes the way it needs to for our daughter. Kendra will take care of the rest of it on her own.

Again, sooner or later, this story will get revised with a more complete one but I hope that's of some use for now and I invite others to share their own stories. Please bring questions or comments to my attention and forward anything you wish to to myself or Stephanie. We'll be more than happy to post any appropriate member's stories here to share with others.

You can contact me directly at: rholloway@gopbc.org