The Greatest Gifts
Keynote Address to the Norrie Disease Association Conference, by Jonathan Mosen
Delivered 14 August 2015
I’ll begin with a warning about this presentation, you know, just like you see on TV sometimes, or even with certain titles when you’re browsing the talking book catalogue. Listeners should be advised that parts of this presentation may be considered x-linked.
It’s an honour to have been asked to deliver this presentation today. I also note how ironic it is that this organisation, the Norrie Disease Association, is known as NDA for short. In the world I frequent, where I work with hardware and software developers, NDA stands for nondisclosure agreement. I have to sign a lot of them when I’m helping with the accessibility of apps and services. But in the context of this NDA, disclosure is uppermost in my mind. I want to talk candidly about my own personal life journey, in the hope that it might prove valuable to others in some way. One thing I’ve learned from the Norrie Disease Yahoo group, and from talking with some of you over the last day or so, is that Norrie is quite a big tent in terms of the range of symptoms. And of course, Norrie is only one set of characteristics that makes a person who they are. Upbringing, environment, temperament, all play a part in shaping us. So I offer these thoughts in no way claiming they are some sort of prescription that will work for everyone. They are my personal experiences and beliefs. Maybe there’ll be some things you can take away, and if not, hopefully what I have to say will at least make you think.
Each of us in this room is the beneficiary of many precious gifts. We’ve inherited some of them. We’ve been given some of them by loved ones, teachers and mentors. And some of them, we’ve given ourselves. In this address, I’d like to give thanks for, and discuss, some of the gifts that are most precious to me.
I dedicate this address to my parents, Pauline and Charlie Mosen, and by extension, to all parents of kids with Norrie Disease, particularly parents from several generations ago who floundered in a less wired, less medically-aware age. One of the greatest gifts we have as a community is the ability to share and learn from each other. Through the Internet, and in-person gatherings like this, we share the gift of our experiences, fears, challenges, triumphs, and most important of all, the joy and the privilege of having been given time on this beautiful planet.
My parents have been married for 62 years, and are still going strong. They married young. Dad was 21, Mum was 16.
Their first child, my brother Colin, was born a few days ahead of their first wedding anniversary. They were young, proud, adjusting to life as parents, and some concern started to creep in. Their baby didn’t appear to be reacting to visual stimulus. At first they were told that there was nothing to worry about, but eventually, following persistence, because after all a mother just knows these things sometimes, a specialist confirmed that their baby was totally blind. No one really offered an explanation. This was 61 years ago, and it was considered just one of those things.
Mum and Dad were from the country. They’d never had any contact with blind people before, and help was much less available than it is today. But they did begin receiving visits from a blind social worker. Here was a man who travelled with confidence across long distances, who was married with a family, who was holding down a job. Just seeing an adult blind person doing every-day things gave them inspiration, hope and comfort. One of the greatest gifts a blind child and their parents can receive is to be linked with adult blind role models. Nothing can substitute for kids and parents talking with blind people candidly about challenges and how they can be overcome. Particularly when the teenage years set in, differences of any kind really start to matter. A sighted parent can try to empathise with how it feels when the other kids start to drive, or when a blind teen is worried because they have feelings for a sighted girl but he’s not sure she’ll be interested because of his blindness, but only another blind person can truly relate in a deeply personal and meaningful way. Blind people, and their parents, absolutely need other blind people in their lives, because once the initial medical diagnosis of total blindness is made, the consequences of blindness are, for the most part, social, not medical.
My parents made significant sacrifices, moving to New Zealand’s largest city so my brother could go to the school for the blind and go home every night.
Three more children were born, each roughly two years apart, all of them girls. And that was their family complete, or so they thought.
Nine years went by, and I was an unexpected arrival. Perhaps it was that I was a boy and there was a bit of nervousness as a result, perhaps it was just parental intuition, but my Dad would shine a light into my eyes to see if he could elicit any kind of reaction, and got none at all. Eventually, the tests were done, and the diagnosis of total blindness confirmed. It was a bitter blow for my parents. After having been told that my brother’s blindness was just one of those random things, then having three sighted girls, clearly the arrival of another blind boy meant there was something more than a random thing going on.
That something else was that my mother was born out of wedlock. Nearly 80 years ago, that was a shameful personal scandal on a scale it’s hard to comprehend today. Based on conversations with other family members of that generation, we believe that my maternal grandfather was a blind musician, but we’ve not been able to find out who he was. When I became involved in blindness politics, I often wondered if we might have crossed paths at one of the many meetings I attended around the country. Now, we’ll never know.
My parents gradually began to learn about Norrie Disease and its parameters. At first, they were told it was an extremely rare condition, and that only one other family in the world, in Denmark, had it. We’re talking the early 1970s, when means of sharing information were primitive by today’s standards.
With four children of my own, I know how the environment and the manner in which a child is raised is only part of the equation that makes someone who they are. Each human being is born with a certain natural disposition. By nature, I’m the kind of person who wants to grab hold of a situation and make the best of it, changing it if I deem it necessary and possible. As an adult, I’ve enjoyed the thrill of skydiving, bungee jumping, and jumping off the southern hemisphere’s tallest building. Just to clarify, I was wearing a harness when I did that. That thrill-seeking element has always been a part of my nature. My earliest memory is of being a toddler, and crawling up a very steep flight of stairs to our attic. In there, I located an old baby’s bath, shoved it to the top of the stairs, jumped into the bath, and pushed it off, sliding down with an extraordinarily loud bump, bump, bump, bump bumpity bumpity bump that had everyone in the house running. They couldn’t believe that I’d figured out how to do that, and that I wasn’t hurt.
But I’m also really grateful for my upbringing. My parents had had experience raising a blind child, a brother 15 years older than me. I couldn’t have hoped for a better big brother growing up. A fluent and proficient Braille reader, he never tired of reading me stories. Seeing him read Braille as well as he did made me want to read Braille like that too.
He taught me about shortwave radio and searching for mysterious signals through the static, ignited my interest in politics from a very early age, introduced me to classic radio shows, and just spent a lot of time with me.
My sisters loved having a younger brother to fuss over, until they and I got a bit older and I’d wander in on them and their boyfriends. They would take me all over the place – to shopping malls, the movies, on horse rides, and later when two of them married farmers, to drive tractors and farm bikes.
As a kid, I played outside a lot and enjoyed my ride-on toys. I used to have a horse with four wheels which I rode literally to death. Eventually, it’s head broke off. At our house, I discovered we had a great little race track for this horse. Around the side of the house, there was a long, steep ramp, ideal for hurtling down on the horse. If you made a right turn at just the correct time, you could continue up a slight incline and have enough room to come to a graceful stop. If you didn’t make the right turn at the correct time, you’d either crash into the side of the house, or be catapulted into the rose bushes. To my parents great credit, they let me perfect this art form. When I started trying it, I got it wrong a few times, resulting either in bumps on the head from the side of the house, or scratches from the rose bushes. There were times when I went to school looking a bit worse for wear, but I loved the challenge and learned all about how useful echo location can be to a blind person.
One of the greatest gifts a parent can give a blind child, is the freedom to be a kid. I grew up with kids who were wrapped in cotton wool by their parents, parents who absolutely had the best of intentions. As a dad myself, I get it, we just want to keep them safe. But every kid, blind or not, needs to be able to kick a ball, run around, take things apart and if they are super clever, put them back together again, walk to the corner store, skin their knee, climb a tree, enjoy sleep-overs and learn through a few bumps and scrapes, both physical and emotional. The alternative is raising a child who is timid, reluctant to push the boundaries, who fears the unknown.
I’m thankful that my parents bought a house pretty much opposite the school for the blind, so my brother and I could be in walking distance and come home every night. There’s no doubt that sending children away from their family and friends at the age of five to be parted from their parents for much of the year created all kinds of psychological and relationship issues for some people. Yet there were educational benefits. At all times, I was taught by teachers who were literate in Braille. Braille is the only method a blind person has of writing something down, and reading back what they’ve written. I can write something down on a computer and have a speech synthesiser read it back to me, but that’s the point, I’m not reading it myself. Reading involves the brain decoding symbols and converting them into language. If a blind person doesn’t know Braille, they are not literate. To those who say the age of Braille has passed as technology has evolved, my challenge is a simple one. I’ll stop advocating for blind people to know Braille, when sighted people give up their print and switch to talking computers too. Braille is not only the only path to full literacy for a blind person, it has some significant advantages over print, which is less advanced technology. Print requires the presence of light, Braille does not. That means that as a kid, I was able to read well into the night without anyone knowing, a very good thing, since melatonin supplements weren’t available then. Print requires you to look at it, Braille does not. This means I can look at you now, while I read my speech notes. Genius!
Without Braille, I wouldn’t have been able to do the jobs I have done in broadcasting, advocacy, public speaking and management. Most important of all, without Braille, I wouldn’t have been able to read stories to my kids, including all seven Harry Potter books in their entirety.
One of the greatest gifts you can give a blind child, is to do whatever it takes to ensure the child has full access to Louis Braille’s priceless gift to the blind. A study conducted in the state of Washington found that people who learned Braille at an early age did just as well, if not better, than their sighted peers in several areas, including vocabulary and comprehension.
Currently, among the estimated 85,000 blind adults in the United States, 90% of those who are Braille-literate are employed. Among adults who don’t know Braille, only 33% are employed. Braille is our ticket to work, to dignity, and to independence.
Growing up in a house with five kids, two parents, and a grandparent or two was a lively experience. For a household like that to function, everyone has to pull their weight. There were a lot of dishes to be done and other household chores to do, and I was expected to do my fair share. I remember with a lot of fondness everyone forming an assembly line for the washing, drying, and putting away of dishes. One of the greatest gifts my parents gave me, is high expectations. Yes, a blind child should clean their room, just like their sighted siblings, although my Mum was remarkably tolerant of my repeated claims that I wasn’t making my bed because I was airing it out for health reasons. What can I say, some people are just natural-born spin doctors. No, a blind child has no business being exempted from household tasks on the grounds of blindness. And I never once heard my parents express the wish that I could see. The message I always got was that I was perfectly fine, perfectly capable, unconditionally loved, just as I was.
Obviously, blind people don’t learn by observation, so teaching a blind child to perform a household chore can take longer, and be more labour intensive. But doing so is an investment in equipping the child with life skills, and also teaching them that blindness need not stop them from achieving anything they put their mind to.
I guess I must have internalised that message, because I can never remember a time when I wasn’t certain I was going to end up with a career in radio. But my ambition didn’t receive universal encouragement.
When I was 13, I met with a vocational guidance counsellor from the blindness agency. He asked me whether I had any ideas about what I might like to do for a living when I got older, and without hesitation, I said that I wanted to work in broadcasting. He was doubtful I could make it happen. He said that he’d visited a radio station recently, and noticed that inaccessible computer technology was being used increasingly. We’re talking the early 1980s, when assistive technology was in its infancy. The implicit message I got from the meeting was, “set more realistic expectations, son.”
When I look back on that moment now, I realise that, even though I was just 13, it was a defining moment. If I were less precocious, less defiant, less determined…less of a handful, maybe I would have accepted the advice, given up on my dream, and lived the rest of my life asking “what if”? One of the greatest gifts professionals and family members can give a blind youngster is encouraging self-belief. Let them dare to dream. Tell them that yes, maybe it will take a little more effort and there’ll be a few more setbacks, but they can be anything they want to be. And find a blind person in the career they want to pursue, because it’s almost certain a blind person somewhere is already doing it.
One apparent opportunity that turned into a setback was when someone told me about an ad in the paper they’d seen for a broadcasting course run by professional broadcasters. I did what the ad said and sent them a demo tape. The head of the course called me, offering me a place on the course. He also told me the price tag, which was way beyond my abilities as a penniless student. On that basis, I declined. But to my astonishment, he called me back again. He said that my tape was so good, that they would offer me the course for half price, because they were sure I would be going places in radio, and they wanted to be able to say that Jonathan Mosen had graduated from their course. So I said, cool! I’ll pay half price, and can I come in a little early as I want to get familiar with the equipment and put Braille labels on the media being used. And it was like someone had flipped an attitude switch. He asked me what I was talking about. I told him that I was blind, so I’d just make a couple of simple modifications and I’d be up and running. He said, look really there’s no point doing the course since a blind person could never have a future in radio. I never did the course, and a few years later, I became his boss. That was a time when if others hadn’t believed in me, it may well have done permanent damage. Self-belief and tenacity are really important.
Undeterred by my negative encounter, I began calling a lot of radio DJs, just to get to know them, and that helped build my networks. At about this time, I decided that the best way to prove I could have a career in radio was by starting my own radio station and proving it could be done. It took me a few years of trial and error to navigate the bureaucracy, but eventually, the Government granted me a temporary two-week license to run a radio station from the school for the blind in May 1987 and May 1988. I was determined that the station, which we called Radio Enterprise and could be heard right throughout the city, would be run entirely on a commercial basis. We pounded the pavement and sold advertising, which covered the hiring of the professional broadcast equipment, and a massive AM transmitter mast which was temporarily erected in a field nearby.
I then wrote to every radio station executive and personality I could think of, asking them to tune in, and even come out and see us in action. Many did, and the point was made.
One of the greatest gifts a blind person can give themselves, is to create their own opportunity. With most opportunities, there’s an element of being in the right place at the right time. But there’s no need to wait passively for opportunity to knock at your door and fall in your lap. With a bit of ingenuity, there’s a lot you can do to encourage it to come to you. Build networks through seeking informational interviews with people in the industry you want to join. Even people we consider very important are often flattered and impressed by someone who plucks up the courage to express a genuine admiration for, and interest in, their work. I managed to get into the office of the CEO of New Zealand’s top telecommunications company that way.
Look for potential opportunity in every situation. That’s how, even when I was at university, I landed my first full-time radio gig. A new radio station was closing down at midnight, and opening again at 6 AM. It was a particularly busy time for Auckland, the city in which I grew up, with a major international sports event on, so I offered to host a midnight to dawn show for free, for the two weeks the event was running. All I asked was that if they liked what I did, they would consider me when a vacancy became available. They liked what I did, and within two months, I was given the top job on the station. And so my radio career was on its way.
Minority members will face discrimination, and often, blind people are limited by other people’s perceptions of blindness, rather than by the blindness itself. There are going to be setbacks, and it’s hard. Sometimes I just don’t feel in the mood to forgive, advocate and educate, but I know it’s necessary. A sighted person is going to close their eyes and find it impossible to imagine how a given job or household task could be done without sight. The sighted are extremely sight-dependent. They’ve got it, so they use it, and that’s fair enough. It is a very dominant sense. So a lot of the time, the discrimination is the result of a genuine lack of knowledge. I try to give people the benefit of the doubt on that basis. Of course, if the facts are explained and the discrimination persists, I have no problem at all with litigation. For me it’s a tool of last resort, but the law is the law, and discrimination is illegal. But the key thing is to never, ever give up. That chance you fail to take could have been the one that gave you that lucky break. I personally can’t abide the what if questions. I’d rather try and fail, than not try, and wonder what would have happened if I had.
There has never been a better time in history to be blind. When I was a kid, I used to pester my sighted siblings to read newspapers and other things to me. Now, I have access to all the world’s major newspapers on my Braille display or via synthetic speech. I can browse stores and shop independently. Rather than have someone read my bank statement to me, I have the dignity of conducting my banking in private. With the snap of a camera on my iPhone, I can read any item of print, such as the compendium in my hotel room, and even the emergency instructions on the back of the door.
Having managed the blindness products at HumanWare and been the product manager for the BrailleNote mPower, BrailleNote PK and Brailliant, it was a very proud moment for me when I was invited to join the team at Freedom Scientific in 2006. I have written a number of books in recent years, and for serious work, JAWS and Windows are still the technology I turn to. While I’m comfortable with my blindness, I also know we’re living in a sighted world. If I want my writing to be taken seriously, whether it be my latest technology book or even an email, I know it needs to be well formatted and spell-checked. Where my books are concerned, it’s important that I understand how the page looks, that I make good use of various fonts and styles, and that bolding and italics really do start and stop where I think they do. JAWS is allowing me and many thousands of blind people like me to fulfil their potential by providing access to the world’s most used operating system.
Dr. Denise Robinson, an independent assistive technology trainer who has worked for years in the field, recently blogged that for blind kids to have good job prospects, they need to have well-developed Windows skills. She makes a very important point. Through our company, Mosen Consulting, my wife Bonnie and I assist many people who are seeking work. One of the things we tell them is that looking for a job is a full-time job in itself. Part of that process is to develop one’s technology skills, or keep them up-to-date. I’m proud that Freedom Scientific has many free and low-cost tutorials that can help with Microsoft Office and many other applications. One of the greatest gifts we can give ourselves is to invest in the training that retains or expands our job-readiness. For that, technology is key. It may not be fair, but employers are quite likely looking for a reason to put the job application of a blind person onto the discard pile. We have to turn up to a job interview well-presented, well-prepared, and well-equipped to take on the role through good technology skills.
I can honestly say that my blindness hasn’t stopped me from achieving anything I’ve wanted to do. While I respect that this is a very personal choice, at this point in my life, I don’t want to be sighted and would refuse sight if it were offered to me. I see blindness as a characteristic. It’s a characteristic that can be inconvenient sometimes, but so can being short. If I were to wake up sighted tomorrow, I’d need rehabilitation. I wouldn’t know how to interpret the masses of visual data. Sight would slow me down, and disrupt my life. Let me reiterate that I’m just speaking for myself, but sight is of no interest to me at all. Blindness is my normality, and I’m happy with it.
The hearing, now that’s quite another matter. I would make any financial sacrifice to have my hearing restored. That’s because I do know how to interpret audio data and sound has been a big part of my life. My brother began experiencing hearing loss quite early, but without a diagnosis of Norrie, it was attributed to the aftermath of an ear abscess. It was drawn to my attention as a teenager that I might not be hearing as well as most people did, and I began wearing my first hearing aids when I was 24, after a series of sudden hearing loss episodes. From time to time, I still suffer bouts of sudden hearing loss. And while I generally despise the term “suffering” in the context of disability, suffer is the right word to describe how I feel about those sudden bouts of hearing loss. A few doctors over the years have told me that stress might exacerbate them, and I do think they may have become less frequent since I began a regular meditation practice.
I’ve blogged about my recent experiences finding a good audiologist and the best hearing technology for my needs, and my wife Bonnie and I are writing a book containing a series of anecdotes from blind hearing aid wearers, targeted at audiologists and blind people who might be considering hearing aids. A number of you in this room have completed our survey in preparation for that book, but if you haven’t and would like to, we’d love to hear about your experiences so they can make the book as good as it can be.
Naturally, my hearing is very precious to me. Not only do I still do a lot of audio production, but obviously I need it to function. I’d experienced the joy of working with audiologists who are curious, who will do the research, who will get representatives of hearing aid manufacturers to sit in on appointments, and just do whatever it takes to give me the best experience possible. I count myself extremely lucky that I know enough about audio to be able to articulate problems in somewhat technical terms. I’ve also worked with audiologists who don’t seem to understand that the needs of a blind person who wears hearing aids are unique. For example, it’s nice to have background noise filtered out in situations where you’re talking with someone, but when you’re travelling, background noise while crossing a street is data that is essential for your safety. Audiologists and hearing aid manufacturers alike are excited about all the innovations in Bluetooth technology. But if making extensive use of assistive technology, using Bluetooth to connect with iPhones or laptops may introduce latency that doesn’t matter to a sighted person, but which makes screen reader navigation feel sluggish. Even some of the hearing technology I am now using isn’t optimal for a blind person. My Phonak Roger Pen, which has made a huge difference in my life when in meetings or restaurants, is mono. That means that unless you use the environmental microphones on your hearing aids to commit the position of people around a table to memory before switching it on, you can’t look at who is talking, because you have no sense of directionality. Additionally, all the controls on the device are toggle buttons where it is impossible to tell their state by touch, making it hard for a blind person to know their current setting. How I would love for just one hearing aid manufacturer to optimise a model specifically for the needs of blind hearing aid wearers, built in full consultation with blind hearing aid wearers.
Our hearing is too important to be timid about. If an audiologist finds the blindness factor too complicating, and you’ve done your best to educate them, it’s time to change audiologist if that’s feasible. There have been a couple of times when I’ve had to do this after moving to a new city, and the relief I’ve felt to find someone who really understood is immense. One of the greatest gifts we can be given, is an audiologist who goes that extra mile. Since I started blogging about my hearing impairment, it’s been a privilege to work informally with a number of blind people and their audiologists to make a positive difference.
My former wife, Amanda, has been an active member of the Norrie Yahoo group for some years. She and I are still good friends and had four beautiful children together, two boys and two girls. The oldest is 19, and the youngest is 12. Because of the way Norrie works, all four of them are sighted. When our oldest daughter was born, many people asked me, in sort of hushed, whispering tones, “is your little girl, you know, like you?” This was an odd question to me, since I’m clearly male, and she wasn’t dressed in pink to make any kind of political statement or anything. But then I realised that they wanted to know if she was blind. When I’d answer the question straight, that no, she was sighted, they’d sound relieved, and say that that was great and she’d be able to look after me. And of course, once I retire, I hope she will help keep me in the style to which I’ve become accustomed, since she’s now a teenager and very expensive to maintain! But I realised that if Amanda and I could just find a way, there was an educational opportunity here. There had to be a way for us to gently point out that blindness is OK. So we began answering the question by saying, actually she’s sighted, but we love her just the same. And that seemed to make the point to most people.
I’ve left the greatest gift of all until last, because being a dad is the best thing that’s ever happened to me.
When my oldest daughter was little, I was reading her a story, in which there was a picture of a dad reading a story to his child. She looked at the story, and said “why is that daddy not reading Braille”? In her mind, the normality was that all dads read Braille, and all mums read print.
My oldest son, understanding from a very early age that you had to let daddy feel something rather than look at it, would excitedly put my hand on the TV screen when there was a programme he liked.
My youngest son has stood up in class and offered a passionate rebuttal to his social studies teacher’s repugnant statement that blind people shouldn’t be allowed to vote. “My Dad,” thundered my son, “knows more about politics than anyone I know, and he’s blind.” There are so many memories I hold dear.
I’ve taken my older three children to a Disney theme park, and my youngest daughter to the Gold Coast of Australia, for a similar thrills and spills experience. We’ve played hundreds of hours of Monopoly together, Bonnie and I have taken them bowling, sight-seeing, and on summer holidays.
Amanda and I discussed children very thoroughly before we made the decision to start a family. As part of that process, we attended a seminar on genetics, where the geneticist described certain conditions where there was a 50% “risk” of having a blind child. I was prouder than I have the words to express of Amanda, who stood up and interrupted the geneticist to say that she found the word “risk” deeply offensive. She said that that made it sound like blindness is a terminal illness. She asked the geneticist if they would describe the 50% likelihood of having a girl, or a sighted child, as a “risk”.
And that sums up how we, in my immediate family, feel. Is blindness a nuisance at times? Of course it is. When I’m being held back because of misunderstanding or wilful discrimination, I wouldn’t be human if it didn’t upset me. When I’ve dropped something and can’t find it, and I know that if I could only just see it, I’d find it, blindness frustrates me. I can’t just jump in a vehicle and go somewhere, but that’s a problem I expect will be solved in my lifetime.
Is the degenerative hearing an insidious, unpredictable, distressing thief? You bet! I’m not going to sugar coat that at all. It’s not just the gradual deterioration that’s the pits, it’s also the not knowing when the next episode of sudden, temporary hearing loss is going to occur, then wondering if it really will be temporary this time.
But you know what? I love life, and I count myself lucky to have it. It sure beats the alternative.
Look at it this way. OK this is sort of the x-linked part. It varies a bit, but a man releases an average of 250 million sperm cells. Just one of them merged with an egg to form you. One in 250 million, merged with that one particular egg to create the wonderful, incredible, loveable, unique creature that is you. The word is over-used in this day and age, but that is truly awesome. As Monty Python so beautifully put it, “remember when you’re feeling very small and insecure, how amazingly unlikely is your birth”.
We made it here! We past the biggest test of all, we’re alive, and we have opportunity. Those opportunities are strengthened by the greatest gifts. Sharing and learning from each other, the wisdom and support of blind role models, the freedom for a Norrie kid to just be a kid, the gift of true literacy through Braille, high parental expectations and belief, instilling a strong sense of self-belief, doing all you can to create your own opportunity, ensuring we are job ready, the support of an audiologist who understands, and most important the gift of love, both given and received. Many people in the world face challenging circumstances. People around the world face discrimination because of their gender, race, sexual orientation and religion or lack thereof, or any number of things that make them different from whatever the norm is in their environment. Yes, those of us who are blind and hearing impaired face challenges and discrimination, but we are in good company. Is the glass half full or half empty? In my view, it’s full to the brim.
I wouldn’t have missed this journey for anything. And I’m not done yet. I will unreservedly support the reproductive choices of my daughters, no matter what they may be. If I am blessed with grandchildren, it will be incredibly special. Having a blind grandson would create a bond that I find hard to articulate. Adult role models have guided me, encouraged me, and counselled me. Passing on the lessons I’ve learned to one of my own offspring who happens to be blind. Now what a truly great gift that would be. The story continues.