(Disclaimer. While at the time of this writing the current situation going on in the world due to the Coronavirus pandemic it’s not the time for anyone who’s disabled, elderly or both to be traveling anywhere until the situation improves and this worldwide crisis is taken care of.)
Travel Series - Part 4
Legally Blind and Traveling Alone to Chicago By Juan Alcazar
23rd March 2020
While I can’t say I’ve done a lot of traveling in my lifetime let alone traveling by myself as a legally blind person I can safely say that everyone has to start somewhere and here I will share with you my first experience traveling alone to one of the United States’ biggest and busiest cities.
Before partaking on this solo journey, the only other times I’d traveled had been with family,
so I was always used to having that safety net around me. If anything happened to come up there would usually be someone else to resolve the problem for me. All this however changed when I decided to fly out to Chicago to go see a friend in the summer of 2019.
Of course, at first my family wasn’t very fond of the idea since the thought of me hopping on a plane and traveling alone cross country was quite a shocking one for them. I understood their concerns, but I wanted to prove to them and to myself that I could pull this off. Not long ago I’d recently started commuting to places in my area using my white cane, and it felt great having that independence, but this time I wanted to see how well I would do without that safety net of family being there.
To make a long story short. The flight went well, not including the fact that I can’t sleep on a plane if my life depended on it. I got assistance not only at the airport in San Francisco where I departed from, but also at Chicago’s O’Hare airport. After landing however came a portion of the journey that was more intimidating that the flight itself. I had to make my way from one end of the city to the other using Chicago’s elevated train system aka The L.
So of course, I’d never been on The L, and not only that but I had to make a transfer in downtown Chicago at one of their busiest stations. So yes, no pressure for a guy who doesn’t leave California very often who is now swiping his cane around in his right hand and wearing his travel backpack on his back.
Now one thing about me is that I’m a quiet person who also has social anxiety. Asking for help isn’t really my forte, but knowing that every decision I made was because of me and only me and that I was also on my own I set aside any insecurities and asked for help when I needed it. I know a lot of times I don’t like doing that but I realized it was ok to ask, especially since I was a tourist. I had a few people assist me along the way and most of the time this was due to the fact that they saw me using my cane.
This didn’t mean that I asked for help all the time. A couple of times I declined it because I had enough vision to get by, but always followed it up with a “thank you”. By the time I got to my hotel as silly as this sounds it really felt like an “achievement unlocked” moment for me because despite the nerves and uncertainty I was able to get to my destination and it felt pretty great.
I had an awesome time at Chicago. My friend showed me around downtown and I got to see some of the tourist spots like Navy Pier, Millennium Park, Wrigley Field, and yes, I couldn’t leave without having a deep-dish pizza. I was also surprised by how expansive their transit system was. You could get around pretty well via public transit if you ask me.
So, what I’m trying to say is. If you’re blind, or have any other disability and want to travel, but are intimidated by it don’t let that be what keeps you from going on an adventure. You don’t even have to go alone if you’re not comfortable. What matters is that you enjoy your trip and speak of it fondly like how I just did. Safe travels.
Travel Series - Part 3
The joy of travelling By Beatriz García Martín
2nd March 2020
My name is Beatriz. I am a visually impaired woman who travels around the world. Some years ago I went to Russia with some friends and I realized I couldn’t follow them, my vision or my lack of vision didn’t allow me. I felt really sad. I also realized I need a cane during the night.
I had some hard months but here I am! 2 years later I achieved a dream, to see the Taj Mahal. I have been into 11 countries recently, I sometimes travel alone, I feel confident during the night with my blind cane and I feel happy. I want to see the world but I am losing my sight due to
Retinitis Pigmentosa so it is now or never, I choose now. Although I travel now, I believe I will find a way to enjoy trips in the future with little or non-sight. If I believe I can, I CAN!
1 year ago, a 5th of July in a train station, the departure point to an adventure that has brought me to different countries, nice people, beautiful views and many stories, all sort of stories. I have found difficulties and facilities, every trip has been different, I have seen how polluted is Delhi, how clean is Doha, hurricane Irma in Havana, how nice is summer in Finland… and is not enough. Sorry to people who worries, I will buy a plane ticket again, get lost, call you because I need help with the insurance due to I’m sick, tell you I’m afraid and I will come back and meet you with a big smile, plenty of stories and crooked photos. This year more and better, here in Instagram and in my website.
I got the perfect opportunity to travel to USA and I did!! I'm afraid of taking planes. I spent 1 year and a half without flying, I went on June to Canary Islands and demonstrate to myself I could control my fear. Big challenge was 10h of plane to get to Washington. Here it didn't go as I expected, in Cuba I got sick and I experienced an hurricane. A disastrous trip. I could say it went bad. But I took 10 planes so now I control my fear, I have been in 2 new countries, met a lot of people and had a lot of nice experiences. Everything has made me buying plane tickets to achieve a dream, I'm gonna see the Taj Mahal, yes, I go to India, in 2 weeks.
2 years and a half ago i started my biggest trip.
I really enjoy travelling and exploring places. I am full of curiosity and travelling it’s a great opportunity to satisfy it. I love seeing nice landscapes, distinctive buildings, tasting different food, listening a different language and talking with people when I travel. Being a visually impaired person makes travelling more challenging. For my trips I always pack my blind cane and a flashlight, they really help me to enjoy more my adventures.
My trip to Egypt was amazing. I enjoyed visiting many ancient temples, sailing the Nile, meeting locals as Ali, Wael or Hager, visiting the Egyptian Museum, entering into the pyramids… WOW! they were impressive, so ancient and still there, so huge, so real and dark inside. With the help of Mat, my friend, and the flashlight was easier to travel the inside of pyramids. Another main treasure in Egypt is the Valley of the Kings. 3.000 years old place, more than 60 tombs, some of them open to visitors, some of the greatest pharaohs were buried there as Hatshepsut, Amenhotep III, Tutankhamun or Ramses II, the Valley of the Kings was an incredible experience. I visited Tutankhamun’s tomb and could enjoy the well conserved frescos and the sarcophagus. My adventure in Egypt was full of emotion, it’s incredible to visit temples from the Ancient Times, some of them carved into a mountainside. Nevertheless it is a chaotic country for a visually impaired, crossing a road is already an adventure! accessibility is not common at all and my cane got stuck many times on the pedestrian road due to the bad state.
I would say the most comfortable continent to travel for me is Europe. Everything is in order, traffic is easy to understand, public transport is usually good, there is lighting enough in cities and accessibility is more common. My biggest adventure in Europe was when I travelled by train from Spain to Finland. A trip of 3.400km visiting 7 countries in 17 days. I remember departing from Valencia (Spain) really happy. My blind cane training had finished by that time and with the cane on my backpack I felt ready for such an adventure. I enjoyed Versailles Palace. I discovered the beautiful city of Rouen, capital of Normandy, France. I went to the island of Mont Saint-Michel and visited its magnificent abbey built on top of the mount. I visited a Japanese Garden in Dusseldorf, Germany. My hostess in Hamburg asked me when I went back to her home if I had bought my blind cane in a museum in the city center, so I explained her about my eye disease and we had a nice chat. I took from Germany to Denmark a train that goes into a boat. I fell in love with the beautiful Copenhagen and I enter into Freetown Christiania, a self-governing society where Cannabis is sold legally. Finally I arrived in Finland, where a best friend welcomed me.
I have so many stories to tell about my trips, so many great memories, I had enjoyed and learnt from every place I have been. In Russia I discovered people is very nice even looking very serious. In India it was impossible to get non spicy food and to visit New York feels like being in a movie. California is nice, beaches are very wide and the atmosphere invites you to have holidays, relax and joy. Cuba has been my most adventurous experience, the country where I survived to hurricane Irma. Not everything when travelling is wonderful, sometimes there are disastrous experiences, they are part of the trip. What all the places I mentioned in this text have in common is all of them have very nice people who made more enjoyable my trips. No matter I didn’t speak the local language, usually it was very easy to find nice people ready to help.
Beatriz is a visually impaired woman and a travel blogger who loves to explore new places. She holds a master’s degree in Communication and works in a Foundation promoting job’s opportunities for people with disability. Losing her sight due to Retinitis Pigmentosa, she chooses to enjoy and share her passion for traveling now. You can follow her adventures in theblindcanegirl.com
Travel Series - Part 2
Grappling With Fear To F.E.A.R. By Steph McCoy
3rd February 2020
For most of my life, I’ve grappled with fear. As a matter of fact I’ve lived with so many phobias it’s miraculous that I managed to eke out the fabulous life I’ve been granted. I mean seriously, from bridges to elevators, water, roller coasters, worms, unrecognizable food, self, to name a few, my fears span endless categories.
So what does one do when one is afraid of practically everything? One
develops lots of rules of engagement to keep oneself safe. The problem with living this way is in addition to being a scaredy-cat one also becomes a fanatical control freak. Being constantly on guard for the what-ifs and what could-bes (is this even a word?) is exhausting and will take its toll.
When I look back at everything I’ve been through in my life I’m amazed to find so many examples of where I faced fear and emerged a warrior. Take losing my sight for example. I used to belong to the camp of people who believed that blindness was one of the worst things a person could endure. Having experienced this myself I now know better.
Last year was both challenging and rewarding. Challenging because I faced some of my worst fears; my best friend’s cancer diagnosis, traveling blind, and the death of a very good friend. While my anxiety was nerve-wracking, coming out on the other side of these fears was a gift like none other.
I’m not an adventurer by any stretch of the imagination yet last year I did what needed to be done. Without reliable transportation (by this I mean a family member) me and my white cane traveled by Greyhound bus to visit my best friend. Turns out I was far more afraid of missing time spent with her than traveling by myself.
It’s remarkable to me what we can do when we live by a standard of ‘doing the right thing.’ Even when fear is palpable the bonds of friendship will prevail. There was nothing that could keep me from traveling from Pittsburgh to upstate New York to be with my friend.
Shortly after visiting my friend I had to fly to Wichita, Kansas by way of Dallas International Airport. If you’ve never been to this facility, it. is. Massive! At any rate, flying solo for the first time since losing my sight was an anxiety-induced experience. Although, meeting up with friends in Dallas so that we could fly to Kansas together was sublime. Additionally, the week spent training blind and visually impaired youth was extraordinary and well worth a little (or a lot) of anxiety. Witnessing the transformation of these remarkable young people was so touching. At the end of the week, the youth voluntarily stood to give personal testimonials about how our team impacted them. To think I nearly missed out on this event because I was afraid is mind-boggling to me and I’m happy fear didn’t win.
Fear also couldn’t keep me from accepting a once in a lifetime scholarship to attend a women’s retreat in Utah. I was scared silly to make the trip but kept envisioning what it would be like after I attended the retreat. The payoff was more than I could ever have imagined. Bonding with other blind and visually impaired women all of whom traveled from different parts of the country changed me. As an abilities crusader (advocate), it’s my mission to break down barriers. Yet at this retreat, my barriers came crashing down empowering me to wholly accept me.
In between my trips last year I received the news that a very good friend of mine died. While I’d never met Carla in person I was devastated on hearing about her death. You see, Carla nearly single-handedly streamlined my online community www.boldblindbeauty.com and I couldn’t fathom how I’d possibly keep it going. But Carla believed in the mission of Bold Blind Beauty and she believed in me. Honoring her by continuing the important work of Bold Blind Beauty has rekindled the flame of my passion.
Nothing in life is certain except for uncertainty. We all have choices and as long as our choices do not harm others they are ours alone to make. I was and still am afraid of many, many things. Here’s the thing, I can grapple with my fears, live, and die. Or, I can choose to remain in my comfort zone and die anyway without truly living.
The journey through life may not be easy but when we have a purpose and passion for positive change we can F.E.A.R.:
Travel Series - Part 1
I am delighted to introduce another special series, this time my guest bloggers will be sharing their experiences with travel as blind and visually impaired people, looking at all different perspectives and travelling options. I hope you find this inspiring and it encourages you to experience all types of travel.
Please welcome my first guest blogger to the travel series, my friend Jen Dutrow.
The View I Almost Missed By Jennifer Dutrow
10th January 2020
A picture tells a thousand words and this picture could tell a different story for one hundred different people.
Five years ago when I lost my license, I NEVER predicted I’d be traveling solo with my daughter. I had gotten used to traveling with my folks. We had epic trips but something was missing.
I realized that because I relied on others for travel, I felt like a child, even while having a teenage daughter. So I started investigating different ways of solo travel. I love to travel and have such fond memories of my parents making sure my brother and I took fun, educational trips. I wanted to make sure I passed that on to my daughter.
After some hesitation of “Can I do this?”, “What if my cane makes me a target?”, “Can I protect my daughter?”, I booked our first trip to Washington, D.C. That was all it took for me to realize how much power I held, how much strength I had despite sight loss, how much I am teaching my daughter about perseverance and innate trust in myself.
For me, five years later, this picture is freedom. After going back and forth for a few years now, I finally booked this trip to Niagara Falls, NY. While we’ve traveled to Washington DC and the beach, this trip required more planning. I had to line up an extra night in a hotel and a taxi ride just to get to the bus terminal.
My sight loss may cause me some hesitation at times, but it will never stop me from living as I wish-powerful, confident, self assured, and able to tackle anything.
From A Mothers Perspective - Part 4
A Day In The Life Of Blind Motherhood By Holly Bonner
30th August 2019
The static noise of the baby monitor blares behind my head. I can hear my three-year-old calling me, “Mommy, I’m awake.” I’ve slept the entire night in our Lazy Boy recliner… again. I look down at my chest and can barely make out my 18-month old daughter who’s been curled up on top of me since 3am. She is the image of perfection, even to this blind mother. I carefully run my fingers through her hair, caressing her curls. I touch her cheeks with my palm, in an attempt to gently rouse her from her sleep. My day of Blind Motherhood begins.
The three-year-old begins to grow impatient. “Mommy, I’m wet can you change me?” “Mommy, do you hear me? I’m hungry.”
I carry a half-awake baby into my kitchen and place her on the floor while I rummage through my cabinet looking for my eye drops. I find the right vile and instill one drop in each eye. Then I wait. It takes several minutes before my morning blurriness becomes slightly clearer.
I am completely blind in my left eye. My right detects shapes and light. I look down at my kitchen floor, and see my daughter happily staring up at me. “Baba,” she says and sticks out her arms. I scoop her up, placing her on my left hip. I head over to my kitchen counter, grabbing a bottle that’s already pre-filled with formula powder. I grab the pitcher of water next to it and listen intently to the sound of the bottle filling. It’s the morning beat to my drum, and in perfect rhythm, I instantly know that I’ve hit 8ounces. I don’t need to see it. I just need to hear it.
I pop the bottle in my baby’s mouth and move back to the living room. I lay her on the throw rug in the play area, reaching for a box of baby wipes and a diaper. Gingerly, I open the zipper of her footsie pajamas, terrified I might catch the zipper on her skin. She’s changed and thankfully unharmed. I place her in the pack and play while I run upstairs for my other girl.
I run my thumb across the top of the baby gate that guards the nursery, pressing down on the large button that will give me entry. My rambunctious toddler is already out of bed, having a very detailed morning meeting with four stuffed dinosaurs. She runs and hugs me. “Mommy, can we go downstairs? Can I bring my dinos?” “Of course,” I reply and begin the balancing act of carrying her plus these plush friends down the stairs.
I count every stair in my head – one through twelve. When I get to number thirteen, I know I’ve hit the landing. Two stairs left and one more baby gate. I breathe a sigh of relief that we made it down safely again this morning. Another baby gets a diaper change, play clothes are put on, and the television is set to Disney Junior. My daughters babble away to one another, as I sneak into the kitchen to make breakfast. Bananas are sliced, cereal is poured, and I carry sippy cups back to my hungry crew. We sit on the couch – the three of us – and enjoy the start of our day.
By 10am, Daddy is home from working the midnight shift. He hugs his daughters and spends a few precious moments with his family. Exhausted, he heads up to bed, leaving his blind wife in charge. My husband has confidence in me, never doubting my ability to mother, even with my visual impairment. Shortly thereafter, the baby is ready for nap time. I make the dreaded stair climb yet again, carrying her, a stuffed dog, a bottle and a blanket.
Back in my living room, my toddler is now requesting a string cheese. I fight with the packaging to get it open, tearing her snack in half. When she sees my handy work, she begins to scream. “I don’t like it like that!” Back to the fridge to get another string cheese. This time, I take extra care in opening the packaging to her satisfaction. I give her a coloring book and put on another cartoon. More eye drops go into each of my eyes to fight the constant burning sensation I feel. Finally, I can work.
For the next two hours, I juggle laundry, prepping dinner and my part time job. My home office is my kitchen table and I listen to emails audibly before I respond to each of them. My daughter interrupts me periodically looking for a snack, a toy or to put on Netflix. It’s a dance we do daily; a parenting waltz that she mostly leads.
The day seems to evaporate and suddenly nap time is over. I bring my baby down to the living room, change both diapers yet again and prep lunch. I find my favorite saucepan, fill it with salted water and make my way over to the stove. I line up the handle of pot, so it’s centered on the burner. I listen to the clicking noise as I turn the dial. The flame ignites and I wait for water to boil, listening for the sound of emerging bubbles.
My daughters are locked out of the kitchen while I cook for their own safety and the little one screams for me behind her baby gate. I try to soothe her by talking to her, never leaving the pot for fear of an accident. After several minutes, the pasta is done, and I use my potholder to feel for the handle. As I move to the sink, I hear my girls fighting. I get distracted by their cries and splash boiling water on my hand. It stings with pain.
My husband is awakened by the kids and comes downstairs, finding me in the kitchen nursing my burnt hand. He helps me butter the pasta and place it on plates for the kids to have lunch. He tells me to be more careful, but he has no concept of the juggling act that makes up my daily routine. I smile, promising I will try, and he goes back to bed.
I play with my daughters indoors for the rest of the afternoon. I can’t go out alone. I can’t travel without assistance because they are both still in car seats. My blindness makes it nearly impossible for me to keep track of my energetic toddler on the playground while watching my baby in her stroller.
This is my life. I’m sequestered to the solitude of my home. No play dates. No mommy and me classes. No visitors. It’s just our little nuclear family, together, in my living room.
Dinner time arrives and my husband emerges yet again. I pull a chicken from the crock pot and take mashed potatoes off the stove. A bag of steamed vegetables comes out of the microwave. It’s classic comfort food for days like this, when I feel I’m in desperate need of “comforting.” My husband and I discuss work, finances, and the girls. The kids love to see their daddy. An hour passes, mealtime has ended, and bath time commences.
I fill our kitchen sink, testing the water repeatedly to make sure the temperature is just right. In goes my toddler. I set my voice activated kitchen timer, which alerts me to when bath time is over, otherwise she would want to stay in the sink for eternity. When the alarm says “time is up” she whines about getting out; eventually conceding. I dry her off, covering her with lotion and putting her in comfy pajamas. Her sister is next into the sink. She’s happily splashes until her time is up. Out she goes and she too is lotioned and dressed for bed. By 8pm, both girls are back in the nursery, tired from a long day.
More medicated eye drops are needed. For the next hour and a half, I get my house back in order. As I run my fingers over shelving units and containers, toys are returned to their assigned spots. One wrong move and I won’t be able to find a beloved toy for days. It’s worth the effort to avoid a toddler meltdown the following day. More laundry is washed and sorted. By 9:30pm my husband is awake, ready to head back into work for another midnight tour.
I sit alone on my couch, a laptop across my legs. I begin to write, blogging about my blind motherhood adventures. It’s my nightly ritual and I need it. Hell, I relish it. It’s my only outlet to express how I truly feel about being a disabled parent, the good, the bad and yes, the ugly. As my husband’s car pulls out of the driveway, I put in one last round of eye drops then it’s back to the couch to finish writing.
The house is quiet. I listen to the sound of the refrigerator hum, the static on the baby monitor and my fingers hitting the keys to my computer. I replay the day’s events in my head. I wish the eye pain was easier. I sometimes wish I could see more clearly. Despite being blind, I am truly thankful for my children and the support of my husband.
Suddenly, my baby wakes up and I am interrupted yet again, a blind mom’s work is never done.
Holly Bonner, MPA, MSW, MPCC, CASAC is an award-winning mental health professional, professor, writer, and poet from Staten Island, New York. After battling breast cancer, Holly became legally blind in 2012. She navigates mothering her two little girls with help from modern technology and her beloved guide dog, Frances. Her website, Blind Motherhood, chronicles her adventures in parenting and provides useful information for all mommies. Holly lives by the mantra that even without vision, you should "never lose sight of life, love and laughter."
Facebook Blind Motherhood: https://www.facebook.com/blindmotherhood/
Twitter Blind Motherhood: https://twitter.com/BlindMotherhood
From A Mothers Perspective - Part 3
A Rejection Of Motherhood By Victoria Claire
8th August 2019
Here is the 3rd part to the “From A Mothers Perspective” blog series. So you have had the perspective of my mum about how she felt when I was diagnosed with RP, you’ve also heard about Kim Owens feelings with her son Kai, so now I give you a completely different perspective….
from the mother that never was.
I was always one of those children that loved playing with her dolls, taking care of them and pushing them around in a toy pram, I also was always one of the children that would take care of the new young children that were starting school. I always thought I would become a mother, the maternal instinct has always been there. Like a lot of women, I thought I would be just like my mum, fall in love, get married and have a child. I even had a name should I have ever had a girl! However, the universe had a very different plan for me it would seem, once diagnosed with RP back in 1994 at the age of 19 everything changed. Not just my career path and relationships but my whole future.
As RP is a genetic disease the prospect of me passing it on to my child would be a one in four risk, there were many other deciding factors to this too, but for me the thought of being responsible for having a child with blindness when I knew that was a risk was too much for me to bare. There also were a lot of external influences with my overall decision not to have children. My first marriage was one that I knew would never result in children, it was a short lived marriage and one that unfortunately broke down within 18 months. When I eventually found my soul mate and married in 2007 it was already very clear that neither of us wanted to have children, it has never been something that my husband has ever wanted, and for me I was still being ruled by the prospect of passing on my RP. So I made the bold decision the year we got married to have a sterilisation, this was done during an operation for endometriosis.
Recently I have felt my maternal instinct pulling at me once more, since I have opened up with my self development I have come to realise that I rejected my maternal instinct. Back then when those permanent decisions were made I was a very different person, I felt that I had to do what other people thought was best, the fact that my husband never wanted children just sealed the deal to not have a child. However, I now understand that despite denying the deep set want for a child I buried that feeling and kept telling myself it was for the best. This also has made me feel as if, because of my sight loss, I wouldn’t have made a very good mother.
This I have now come to realise is that I rejected motherhood because I wasn’t strong enough back then to say want I really wanted. My life is blessed with many outlets and activities that perhaps I wouldn’t have been able to do if we would have had a child. I no longer feel I want a child now, I just acknowledge that I did all those years ago.
The problem this has left me with is I can easily misplace the maternal love, by this I mean, I can over invest in other relationships, which can then leave me very open to being hurt. For me, the best way to cope with this is to find an outlet that allows me to place that unspent love, working with people in a community really helps. I teach a creative healing class and find a sense of belonging with this, I also mentor those with sight loss and speak at sight loss conferences. My latest project will involve using my profession as a sculptor to express the maternal instinct through my work.
This is my perspective of my personal experience, I feel that everyone should have the right to explore how they feel and what they want for their lives, this should be a choice made between the two people and be free of judgement and opinion. Of course there are many other ways to have a family these days including IVF, surrogacy and adoption. We live in a much more inclusive world where disability is far more accepted and does not need to hold back a family from thriving.
From A Mothers Perspective - Part 2
Letting Go By Kim Owens, mother of Kai Owens
25th July 2019
Overnight our bright, happy, outgoing 9-year-old-son, Kai, became anxious and afraid. He refused to sleep in the dark and he clung nervously to my side. His personality changed drastically and we were terrified. Over the next year, we visited many specialists but received no clarity.
Then one day I noticed that his handwriting started in the middle
of the page and trailed off the right side. I asked why he wasn’t using the left side of the paper, and watched as he held the paper up to eye-level, and moved it from side to side, inspecting it closely. Kai’s last eye exam had been 4 months prior, but I became certain that something was wrong with his vision. The eye doctor agreed to take another look and that’s when he noticed that Kai’s retinas looked funny.
After several tests, a paediatric ophthalmologist called saying Kai had “a degenerative disease that was affecting his retina, and it would continue to progress….no treatment, no cure….” The doctor’s words were so severe that I asked “is he’s dying or going blind?” “Blind,” he replied.
Blind. Vision loss gave Kai an answer which relieved his anxiety. I’d hear him simply state, “I can’t see that, I have vision loss.”
Blind. I was wrecked and could not envision his life without sight. Reaching out to other moms of blind and visually impaired kids I found, that most, like me, were stuck in a loop of grief and denial. Eventually, through therapy and meditation I learned to welcome the grief, experience it, and let it go. It was extremely painful to let go of the bright, shiny story I’d created on the day Kai was born, and even more challenging to let go of the dark, shadowy story I’d made up about blindness, but letting go of “my stories” was key.
I remember the day my mindset changed: I had dropped Kai off with his Orientation & Mobility teacher and proceeded to the bakery at the end of their route to wait. I was ordering blueberry muffins, when I caught a glimpse of them approaching. My heart broke: my son, going blind, his future limited. And, that’s when I noticed it: HIS SMILE! I saw a little boy who had successfully crossed a busy street with his cane! His joy was overflowing. He wasn’t sad or frightened, he was radiating accomplishment and independence. His version of the story was very different from the ones I had been clinging to.
It’s been 6 years since Kai was diagnosed with Retinitis Pigmentosa and he’s thriving. He has about 5 degrees of blurry sight left, but he has a clear vision for his life and he’s learning the skills necessary to succeed, including: Braille, assistive technology and O&M. As a mom, the letting go is hard but Kai and I have an agreement that works for us: If he needs help, he asks. Once we have the situation sorted out, I let go again. It’s a process.
Kim is passionate about connecting with parents of blind and visually impaired kids. She whole-heartedly believes we are stronger when navigating blindness together. You can reach her online at www.navigatingblindness.com or on Instagram www.instagram.com/navigatingblindness
Kai has become the world’s only sponsored, blind skimboarder. You can see him skim and thrash on the drum set at www.instagram.com/kai.owens
From A Mothers Perspective - Part 1
By Sandra Tinsley, mother of Victoria Claire
16th July 2019
My daughter was diagnosed with Retinitis Pigmentosa when she was 19 years old and just beginning her adult life at university. How dreadful that must have been for her.
I felt absolutely devastated for her and myself. Having been such a good baby, totally happy, always laughing, nothing ever bothered her, she would tackle anything.
I cried, questioned myself asking was it something that I had done during my pregnancy, had I worked too hard? We had moved house 2 week before she was born, she was also born with the cord around her neck. You always think the worst trying to find answers.
I am a person who will try very hard to help and do anything I can to help people and friends but mostly my family. Life went on as usual, my husband continued to go to work and tended not to talk about it much, so much that I even thought that he forgot it sometimes. We went to Moorfields eye hospital and had all the tests with Vicky, her dad looked up everything he could about R.P. on the internet.
Everything got bad for a time, her fiancé decided to leave her, she decided she could not cope with university on her own.
Vicky wanted to travel and see things before she lost her sight completely, (she was told that would be at age 30), with good friends she went to America then to Italy, this of course was a worry for us all, it only turned my hair and my husbands grey!
I had some very good friends who were either what I call cryers or “that doesn’t matter, she will be ok”. They all did their best to be kind, let me chat to them about my worries and make plenty of cups of tea for me.
I remember going into our local post office and the couple who owned it asked “How are you today?” I just burst into tears and said “My daughters going blind”. I must have really shook them up. They always asked how she was for over 15 years, such a lovely couple, they really cared.
We had a burglary and the first thing I said to our neighbours was “It’s only things, not my daughter going blind!” It must always be on my mind, always there and I hadn’t noticed.
After Vicky had yet another accident out walking she decided enough was enough, she would accept cane training. A lovely lady from Guide Dogs came and took her out and she now has the confidence to go out day and night on her own with her cane. Is it still a worry? Yes, but she texts me to say she’s home and that helps.
As a mum all I can say is be there, help if you can, laugh with each other, cry with each other, try to stand back and watch and be a mum or dad or brother, sister or partner or friend.
Vicky is now married with a lovely husband who cares about her and I hope will always look after her. She has become a sculptor, Ambassador for Retina UK, mentors others with sight problems here and abroad, surfer, skateboarder and is at present writing her autobiography.
I am so proud of my daughter.
Could I have coped like her? I dont think so.