Thoughts For My Child Who Now Has a Blind Parent

For my child who drives to pick up their siblings because I can’t drive.

For my child who may need to arrange for a ride from a friend because I can’t give them one.

For my child who says “curb!” without even realizing it when walking with me.

For my child who sometimes counts down those last few steps when we’re going down stairs.

For my child who knows exactly why I ask for their elbow if I need it. 

For my child who offers to place any online order for me because they can do it in half the time.

For my child who becomes my tech support for every device I’m learning to use. 

For my child who reacts like a “hazmat team” and wipes up the glass of water I knocked over.

For my child who cares enough to tell me my sweater is inside out after I swore I checked where the tag was.

For my child who has had to help find my damn sunglasses, purse, phone, headphones, etc. because I didn’t put them back in my “designated” place.

For my child who stands in the store aisle and smells the candles with me, just for fun.

For my child who will read the menu to me if I ask them.

For my child who will figure out any issues with my phone or computer because they are good at it.

For my child who answers the hundreds of times I curiously ask “What’s that?”.

For my child who laughs at my comedic “Blind mom” jokes…because laughter is the best medicine!

For my child who eats the dinner that looks like a delicious disaster at times.

For my child who allows me to feel their new haircut or the shirt they’re going to wear.

For the child who had to learn how to describe unique colors, patterns, shapes, and sizes of just about everything in our surroundings.

For my child who wishes I could get my vision back.

For my child who is not embarrassed about my disability.

To my child who is proud of me.

For my child who’s friends don’t believe their parent is blind.

For my child who wants at least one friend to understand their life.

For my child who ignores the people who stare at us as I walk with my white cane.

For my child who tries to be strong when I an not.

For my child who feels the need to protect me when confronted with the uneducated views of blind people, because they now have a blind mom.

For my child who felt frustrated with me and didn’t know how to express it to me.

For my child who is doing their best to come to grips with a parent’s unexpected vision loss.

And…for my child who thinks I’m pretty badass for never giving up on myself after I was diagnosed with LHON in the middle of a busy life.

 

 My precious child,  there is something I want to tell you….

I know this may not be the life you wanted, but this is the life we now have as a family. I appreciate all the extra things you do for me… things that most of your friends never have to do for their sighted mom or dad. You have to grow up a little quicker, adjust a little faster, and cope a little better. Those are some big responsibilities for you to carry at any age. You are my child and I will help and support you, because that’s what I’ve always done.

Living with a blind parent will have an effect on the kind of person you become. I hope you see that the ability to ask for help, as well as graciously accepting any help, is a sign of strength…not a weakness. Don’t be too afraid, too shy, or too stubborn to ask for, receive, (or give) a helping hand. 

The compassion, empathy, and kindness you learn in our new family dynamic, will be some of your greatest attributes later. That’s a good thing, I promise! I will never let my vision loss get in the way of being the best parent I can be for you. Thank you for helping and supporting me as I rebuild a fabulous life beyond the blindness. Love you for always!! xoxo

Please read:

*This blog post was edited on 3/27/2017 to better reflect my intentions. My account of my children’s experiences should not offend anybody.  This blog post does not reflect anyone else’s experiences, abilities, or competency as a blind parent. I am not speaking for anyone else but myself… as a mom who went blind, in a matter of months, at the age of 50 (3 years ago). My children read this blog post before I published it and they said it was pretty accurate to them. That should’ve been my clue that this was reflecting MY family’s experiences… NOT that of my fellow blind parents and their children. The original post was too generalized.  I never ever intended to offend or angeranyone in the blind community, or give our families a bad rap as was suggested in recent comments. That’s not how I roll!!  Instead of succumbing to the angry threats or taking the blog down as requested, I opted to make edits to further personalize and clarify the intention of the post. I hope this will calm the storm. I truly meant no harm. 😄 ~ Maria

Please listen:

Click “Thoughts For My Child who Now Has a Blind Parent” ~ a discussion about this blog post on RNIB Connect Radio (17 minutes)

 

69 Comments on “Thoughts For My Child Who Now Has a Blind Parent

  1. What an incredible way you have with words! You have two amazing kids! They are lucky to have you and you them!

    Like

  2. Another great posting! I felt like ‘child’ could also be interchangeable with wife or our mothers. Thank you for sharing!

    Like

    • Thanks Bob! I totally agree… You could interchange the word “child” with “Friend, Sister, etc.” with a few tweaks in the wording.

      Like

  3. Maria-
    As always I love this. You have been a fantastic mom to two incredible kids. You’ve all experienced a twist in the road, but you each have grown from it and we are all learning from each of you.
    I can say I’m always so happy when I get the text from you or Molly about a ride home.. I’m so happy I can help in that way.
    Love you all
    Sarah

    Like

    • Thank you Sarah! You have been such a great support for not only myself, but to Molly. It’s good to have amazing moms like you on my team!! I appreciate you!! ♥️

      Like

  4. That was amazing Maria. I have two grown daughters and they have not had to live with me since I lost my vision a year ago. In some ways I am glad of it for everything you said above. But they are lucky to have you as a truly inspiring mom. You have inspired me to write about my blindness as I have learned to embrace it and be bold about it.

    Like

  5. as always, precious Maria, you are able to show those of us who still have their sight just how importantly your children are called on to assist and it is your loving wonderful nature and nurture that created these children…….another wonderful thought provoking post dear one.

    Like

    • Thank you Auntie Myra! Your loving support through my blog has meant so much to me from day one!! Thought-provoking, educating, and entertaining are some of the ways folks describe my blog. Thanks for being one of them! ♥️ xo

      Like

  6. Oh no!!!! You are dependent on your child that is wrong on so many levels!!! I have a blind daughter. She sets up her own area with her water glass where she wants it and if she spills it she cleans it up! You have a guide dog and your child tells you where a curb is??? If you are so unaware of your surroundings maybe you need to have O&M!!!! This post screams of dependence on others, especially your kids! Why can’t you figure out that your clothes are inside out? The seam goes on the inside! Funny my daughter learned that that as a child and she’s an adult and still doesn’t do it. The people that are praising you for this post must be sighted!

    Like

    • Hello Debi…
      Wow!!! So quick to judge! Have you read ANY of my blogs? Because if you had… You would know that I am not a pathetic, helpless blind mom who can’t do a thing for herself.

      So let’s clarify a few things:
      I knock things over all the time, and I clean them up. I didn’t say I had a guide dog, I use a white cane. I’ve had O & M training and I am quite competent going out and about on my own and finding the curbs all by my big girl self! My kids giving me mobility cues is simply second nature to them at this point.

      And please… I know that the seams of clothing go on the inside. But I admit that sometimes I’m rushing and I don’t pay attention and the shirt or sweater gets put on inside out. It happens and I’m happy that somebody tells me so!

      I was very independent before I lost my vision within a matter of months. I have had to learn, and I’m still learning, to be independent once again with the help and support of many people, Including my children. Do I want my children’s help with certain things? Sure. Do I demand my children’s help 24/7? Hell no.

      And to clarify even further… Some of the other people who have commented on this blog are blind parents. Yep. People that follow me don’t rush to judge, because they know me and the kind of person I am. I appreciate your Point of view, but with all due respect Debi, please do your GGB research before you comment. Thanks a bunch!!

      Like

      • Hi Maria
        i Love your response well done you I was reading through the comments of your wonderful article when I came across the above and I’m gob smacked at what she’s said I went blind 14 years ago when I was five months pregnant and I’m now a mother to the most wonderful 13 year old daughter Your words in the article and in your response to the comments are so true And i relate to most of everything you have written, I wish I could be as succinct With words as you are. Being the child of a blind mother is far from easy and it’s great that you’ve been able to take this perspective and put it into words I can’t wait to show my daughter as I think she will Will be able to relate to it in a major way
        Carry on what you’re doing because you’re doing and amazing job and don’t let anyone else tell you otherwise

        Like

      • Thank you SO much Caroline! I appreciate you taking the time to leave a comment with your thoughts! ♥️

        Like

      • This web site features a lot material and a few amazing content too. Men along with women definitely do require a lot on their imiaonatign. Make sure you keep writing, I’m impatient on the next piece of writing.

        Like

      • Maria, I’m sorry you changed the wording of your original blog to appease this jerk. And for the record – I was at the pediatricians office last week, and there was a SIGHTED mom with her leggings on inside out. I politely mentioned it to her, and we both had a good laugh! It happens to everyone – not just visually impaired moms with amazing support!

        Like

    • Hey Debi, let me introduce myself, I’m Molly, Maria’s daughter. As it seems you have written some misconceptions about my incredibly strong and brave mother on her latest blog. WELL since I am a child of a blind parent this blog was directed towards me and my mom had me read through all the points in her blog before she even published it and I completely agreed with everything she wrote, so I am quite confused for why you feel you have any right to speak on the behalf of children of blind parents. When I was young my amazing mother taught me that if you didn’t have anything nice to say, don’t say it all…… so I guess I’ll stop here. (: have a fantastic day and if you have a spare moment you should read some of her blogs because then you’ll actually know who she is and what she is about.

      Like

    • I thought this post was beautiful and so poignant. And guess what, I’m a blind mum too. Your comments are just horrid and judgemental! Good on your daughter, but she’s not a mum yet and you’re not s blind mum – so don’t judge this lady!

      Like

    • Debi,
      Our kids don’t tell us to step up when walking, for example, because we can’t or won’t figure it out. They do it out of love and kindness. Most of us, in our turn, consciously try not to rely on our kids too much. Nun the less, the things discussed in this post do happen. Perhaps you are not blind, or not a parent. If you are a blind parent, put down your dagger and shield and read the post again. It is a wonderful Thank You to the many marvelous children of blind parents who show their love in so many little ways every day, not because they must but because they can and want to do so.

      Like

      • Kelly, you’ve expressed my thoughts exactly. I took this blog as a hat-tip to our kids and a show of appreciation for their different experiences from their peers. While I understand their concerns, there are far too many Judgy McJudgersons in the blindness community. The stereotypes of blindness aren’t going to go away any time soon. The assumption that this one blog post is going to cause CPS to swoop down on all of us and remove our kids from our capable hands is ridiculous.
        People really need to lighten up.

        Like

  7. Wonderful Maria…just wonderful! All the different “To the child that…” were very spot on. My children are young but have quickly become acclimated to helping me out. It is second nature. Thanks for putting it into words.

    Like

    • Thank you Derek! I appreciate you checking out my blog am leaving your kind words!!

      Like

  8. Very thoughtful and touching, Maria. You have a talent for expressing those thoughts and emotions that are hard to put into words. You go, blind girl!

    Like

    • Thank you so much Sheryl!! ♥️ That’s a big compliment coming from you Professor!!

      Like

  9. Beautifully said Maria……children of parents with disabilities learn empathy, acceptance and concern for all people. As a mother of an affected daughter, I totally understand your post and know how very hard it is to have to ask for help but please know, that the people that love you are more than willing and want to help whenever needed. Your doing a great job and adding so much help to the LHON community it can not be measured.
    As for the “Debi” that slammed you…..what can I say except it takes all kinds to make the world go round.
    Big Hugs
    Pat

    Like

    • Thank you Pat!! I appreciate your comment! I know not everyone is going to agree with me and that’s okay. There are many personalities in the blind community and I run into my share of them. Like everything else… You take the good with the bad, learn what you can, and move on. Looking forward to seeing you at the conference in June!! ♥️

      Like

  10. maria…i am sorry you got the snarky post…I guess her daughter lost her sight at a young age whist you were mid life and the acclamation you would get from childhood for disabilities you did not have…you are my rock star Maria, still and always

    Like

  11. As I read this inspiring writing from my best friend, I couldn’t help but think…yep, “step down”, “curb”, “over here”, “what’s your number again (Von’s)”, and my favorite…signing your name on the cc receipt LOL 
    I thought…not only is this a glance into your world, your kids it’s mine now too and I totally on board!! But when I read that post from Debi…I wondered if she is vision impaired too? I wondered if she read this to her daughter and her own response to her daughter, probably not.

    Debi, if you’re reading this…WOW, really…you’d actually judge and insult another person like that…while I was reading your comments, my heart felt sad for you and my blood started to boil over. I don’t know the circumstances of your daughter’s blindness but I’m sure in the beginning you helped her out…at least I would hope you did.

    Maria, I’ve known you for over 13 years now, you are just as feisty, inspirational, motivating, independent woman now as you were 13 years ago. Maybe not so much in the beginning, but it was a whole new adventure for you and to see where you’ve gone and taken this unexpected turn in your life…it’s amazing!!
    Love You!! Robin

    Like

  12. As a blind woman without children (who has at times yearned for them), I wanted to take some time and thoughtfully speak to this post.
    Overall, I found it incredibly thoughtful and moving. Let’s face it, there are things that children of blind parents will notice, pick up on, comment on, get away with, or otherwise do because Mom and/or Dad can’t see. That’s a reality. It’s a blessing in many ways, because kids will often tell us things that adults are too scared to say (like the time I had a child point out that the seam in my skirt had ripped).
    I do realize that you (personally) have had to swerve into the skid of vision loss, that maybe (and, please, correct me if I’m wrong) rehabilitation training has not come as quickly or as easily or as conveniently as it could or even should have, so perhaps in some ways, your kids WILL need to alert you to information that you haven’t yet had the years of experience to intuit.
    But, while I was moved by this blog post, I was dismayed as well, because – taken at face value – this blog post speaks to the perception of the “incapability” of blind parents. I have known of couples who have had children monitored or even taken away by social services for no other reason than that one or the other parent is blind. I know that you were speaking to your own experience, and I would never in a million years censure you. But this post does mention a child mentioning if something’s on inside out, or swooping in like a HAZMAT team when a glass of water is spilled. And while it’s possible that the sighted child of a blind parent COULD place that Amazon order in half the time, is it also possible that the sighted child of sighted parents could as well?
    All this to say, you write very well and have overcome a lot. The fact that your daughter spoke to this is a testament of who you are. But some lines in this otherwise beautiful piece have raised red flags to me, possibly because I have spent so much of my own life being viewed as incapable, so someone (parent, friend, child) would have to do things for me.
    Please, keep on writing. 🙂

    Like

    • Thank you…Thank you for your very wise and respectful comment Blindbeader!! I do understand your perspective on some parts of this blog and the validation on other parts. I enjoy your blog, and appreciate your insight and support! ♥️

      Like

  13. Hi Maria, it’s great to read your article and see that you are so eloquently chronicling blindness as you personally experience it.

    As a blind parent to four sighted children, I’d like to offer an alternative perspective. I do so because, while I unreservedly accept that what you wrote is an accurate reflection of the relationship you have with your own children, a number of blind parents have told me how disturbed they have been by your post.

    I write this response because I believe you may not fully appreciate how damaging your post might be if it goes without an alternative perspective being published with it. I can see that in future, some misguided official in a social services organisation, or a lawyer representing a sighted spouse in a bitter custody battle, will use your post as proof that blind parents are dependent on their sighted children and use them as unpaid home help. So to any official or lawyer who might seek to do so, I make the following points.

    I believe that any relationship between a parent and a child, and indeed any relationship in general, is one of mutual dependence. With parenting, this tends to change as children get older. When my children were very young, they were completely dependent on their Mum and me for every need. As a blind parent, I would walk with them, holding their hands, teaching them about pedestrian safety, helping them learn about the world and answering their constant questions.

    I would read them a story every night. The Braille books I used included descriptions of the pictures, so I could discuss the pictures with them and encourage them to describe to me what they were seeing. My kids still talk fondly about the stories I read them, both reading from Braille and especially by making them up. I learned, much to my delight, that my oldest daughter just assumed that all daddies read Braille, and all mummies read print.

    I was the one who sat by my oldest daughter’s bedside after she had fallen off the monkey bars and broken her arm, regularly getting her drinks and being there when she called for me.

    I taught them how to play piano, took them to the zoo by myself, entertained their friends and helped manage the organised chaos that was their birthday parties.

    I helped them with countless hours of homework.

    I am an IT professional, so I do the tech support around the house. Only yesterday, I spent three hours helping my teenage son configure a new and complex software package.

    My kids usually think it’s pretty cool that I’m blind. When they were little, they would often come home and proudly announce, “we’re doing blind people at school this week Dad,” and take me along to school as a show and tell, where I’d read a Braille story and talk to them about blindness. Their friends usually find blindness fascinating.

    I would like to address a few of the specific clauses in your post.

    If an older child picks up their siblings, it may be true that in some household that is a parental function, but it could just as equally be true that this is a chore they are assigned, just as chores in any busy household are allocated. Perhaps a blind parent compensates for this in other ways.

    We can’t give our children rides, but there are many households where people don’t own a car, or where there is only one car that isn’t available to everyone at all times. Many parents, not just blind parents, make allowances for this through a budget for transport such as uber, or public transport. A blind parent will be mindful of the need for good access to public transport, and will whenever possible choose a house close to good transportation. I accept that this isn’t an option for everyone, but blindness is no excuse for making us dependent on our sighted children for transport.

    When using sighted guide or following effectively, a child should never need to say “curb”, and I would be annoyed if mine did. I mean no disrespect when I say that if you presently need your children to do this, then it might be useful to consider additional orientation and mobility assistance. The same applies to stairs. With good blindness skills, a sighted child does not need to count them. Please know that I am not faulting you for not having blindness skills if this is your situation, I’m merely pointing out that such training is available, and it would make the need for such vigilance on the part of your children unnecessary.

    As mentioned earlier, as an IT professionals, I have spent countless hours getting my kids’ devices out of jams, including completely reinstalling content on their mobile devices. I completely agree with you though, there are, on occasion, times when our assistive technology fails us, and we just need to know what the heck is on the screen. I truly appreciate it when one of my kids gets me out of a serious jam in this way, and this comes back to the mutual dependency that emerges when they get a little older. But how different is this, really, from what goes on in houses with sighted parents? When I was a kid, even though I was blind, I was the one in our household who could set the timer on the VCR. So when my parents wanted something recorded, one of my chores was to set that up, and I got in trouble if I didn’t do that chore. Reading the screen is one such chore we can assign.

    Also, if you have an iPhone, apps like TapTapSee, Be My Eyes, KNFB Reader and others can be of significant value to the busy blind parent.

    Again, I’m wondering whether, if you need a child to tell you that your sweater is inside-out, how well you’ve been served by the blindness system where you are? It’s very easy as a blind person to tell when something is inside-out, because you can feel the seams on the outside. I must say though that I’ve been rescued by one of my kids telling me that I have two different shoes on, but I know of sighted people who make that mistake too.

    Regarding the dinner that’s a disaster, does blindness really have anything to do with that? We all try things in the kitchen that go wrong sometimes, but if they’re going wrong on a regular basis because of blindness, then this, again, to me suggests that you may find additional blindness training of real value.

    A number of the clauses in this post suggest that your children may have had difficulty accepting your blindness, and that perhaps you’re having the same difficulty. This is something I’ve not experienced, and can’t relate to, because I was born blind, but I readily acknowledge that becoming blind must have been a massive adjustment, both for you and them. My kids have never wished I could see, probably because I’ve never wished I could see. Blindness has never stopped me from achieving all I’ve wanted to in life, and having never seen a thing, I haven’t ever wished I could see my children. I say this not in any way to invalidate how you feel, or how your children feel about your situation, that’s not my place. I’m merely offering my very different perspective by way of contrast, so your readers may realise that some of us see these issues differently.

    Maybe our kids have to grow up quickly, but I would reframe that same point and say they learn empathy, which is just one advantage of having a blind parent. Empathy seems in very short supply these days I’m afraid, so they are blessed to learn it.

    You write of the child who needs to protect us because we’re blind. I’m really troubled by this. it is not a child’s job to protect a parent. it is a parent’s job to protect a child, and blindness, given the correct training, is no reason to reverse that relationship. Even though my children are older now, I still do all I can to ensure they’re safe, that they know not to travel with people who might have been drinking or worse. If they’re dealing with anxiety due to a heavy academic course, I hold them close, help them to gain perspective, and give them the help hey need. If they break up with their boyfriend/girlfriend and it seems like the world is ending, I’m there for them. I protect them, that’s what parents do.

    I know that I might have to have a very large flame-proof suit on after writing this comment, but I mean it very sincerely when I say I am not seeking to belittle your situation, judge you, or invalidate how you feel personally. But since your post is entitled “to the child who has a blind parent”, rather than “a letter to my children”, there is an implication in your post that all blind parents feel the way you do. I can tell you emphatically that they do not, and that some find what you have written inaccurate and even offensive.

    Thank you for writing such a clear and thought-provoking post. I host a podcast each week that talks about a range of issues from a blindness perspective, and I would love to have you on the podcast along with a couple of other blind parents to discuss these things further, if you would be willing.

    Take care, all the best to you on your journey, and thank you for the opportunity to comment.

    Like

  14. Although I’m not a parent, I’m totally blind, since birth, and I find this post offensive. You make it sound like your children are there for your convenience. Perhaps if you sought blindness training, you’d be able to go farther in life. You’re more than capable of doing things for yourself, with color identifiers, apps like KNFB Reader, Be My Eyes, and others. With excellent mobility training, you’ll be able to navigate your world without people telling you, “Curb!” Blindness should never be a reason to inconvenience anyone else, and that’s what I feel you’re doing to your kids.

    Just my thoughts,

    Chantel.

    Like

    • Thanks for taking the time to leave a comment Chantel. I never ever intended for this post to offend anybody! These are situations that my children have experienced living with myself, a blind parent. My kids have to do things a little differently, just like we have to because of our vision loss. I use a cane, I’ve had O&M training, ride the bus, I use apps, I use a magnifier when possible, Etc. But, if my kids drive me, guide me, describe a drawing or colors of a sunset to me, or even read a menu for me… it’s because they care enough to help me, their mother. My kids have very active lives and I am in no way holding them back. I would do anything for them… and they will do anything for me. I appreciate your point of view, and I truly meant no harm.

      Like

      • I couldn’t agree with you more. I’m riddled with guilt when my daughter points something out to me or says let me do it mum as it will be quicker I’m also aware of how many chores and tasks my sighted friends ask of their sighted children and often think that I wouldnt dream of asking my daughter to do these jobs. I’m amazed that blind parents have had their sighted children taken away from them, there must be underlying issues i didn’t lose my sight until I was 38 and as a child I had chores and jobs to do around the house this wasn’t because my parents wanted a maid/housekeeper, which I feel Debi is implying and like your children Maria, my daughter does things for me because she wants toand not because she has to. I also know whose children will become wonderful, kind, compassionate, loving and understanding adults who will know just how much their parents love them for who they are and not what they are

        Like

  15. Hello,

    I just want to say that at first glance, this read as a sighted parent writing a pity blog post for their quote on quote helpless blind parent. What I mean is, at first glance, it sounded like a pity post for blind people. After rereading it a few times and reading the comment, I now understand that it was written by a blind parent expressing gratitude to their children. I don’t really know how to say this without sounding like a dick, so I’ll just say it. I feel like the more this post is shared, the more the stereotype of a helpless blind person will be spread. Perhaps this is just me, but judging by some posts on Reddit, others feel the same as me. It’s not my intention to bash your piece, not at all, just explaining what it could be misinterpreted as.

    Like

    • Hi Ross….
      I appreciate you trying to understand the blog for what it was. I also appreciate you being honest about how it could be misinterpreted as well. Of course that misinterpretation is not at all what I was going for here!! I have done my best to neutralize some of the crazy and set people straight about my true intentions. You can read the comments to see how things have gone down since you wrote this.

      PS…. I’m posted on Readit?? Wow. I had no idea….

      Like

  16. I am a deafblind lady who has raised a son. I recognize that my son has always helped me, and he does so with grace and total kindness. I helped to purchase his first car, for the thrill of doing this, and so that he could use his vision to help me with shopping and going places. Never has he ever complained. I am his source of strength and have always been active with doing things for and with him. He had to learn sign language to communicate with me, his life is richer for the ability to accurately communicate with me when few others could. Today he still does things for me, out of love and respect, and I do as much for him as I can. Perhaps all children should be taught to do more for their parents, the act of giving freely inriches both the person receiving help and the helper.

    Like

    • Thank you Penny! I really appreciate you sharing your thoughts! I love how you helped your son buy a car so that the transportation issues would be a lot easier to manage. My son did misc. driving for me for many years, and my daughter is very close to getting her license! She can’t wait to run errands for me or hop in the car to go on a spur of the moment shopping trip or day at the beach! ♥️

      Like

  17. My husband and I are blind parents and I just want to say, how dare you write this offensive piece of crap. Do you even realize how dangerous it is to post this utter rubbish of lies? There are blind parents that fight discrimination every day and risk losing their children bc of myths like this. I just spent the month of February calling and visiting my state senators to help pass nondiscrimination legelslation against blind parents. And you completely undermine all of the work of good blind parents by posting this. If this is how you live, I feel sorry for you. Your problem is not blindness, it’s that you are incompetent as a blind person and you abused your children with excessive parentification. If you had a shred of decency you would take this down and publish a retraction. Fuck you! No seriously, fuck you! I usually try to stick by all blind people even if they believe differently than me or have less skills, but this is beyond the pale. You should be ashamed of yourself.

    Like

    • Hi Lisa….
      I commend you on your work on behalf of blind people with your state legislator. I respect people who stand up for what they believe in, instead of sitting at home letting life pass them by. Well, I’m going to stand up for myself here. The things I mentioned in the blog are not myths. They are real things/Situations my children have experienced since I became blind three years ago. I didn’t make them up or blow them out of proportion in hopes that my readers would think us blind parents are pathetic slave drivers. Nope. My kids and I were very close before I lost vision and were even closer now. By my kid driving me or their sibling, Reading the menu, describing the view from the top of a hiking trail, or wishing their friends were more understanding of their recent life adjustment are not myths. These things are real life, and perhaps some people just don’t want to talk about them. Well, I did… and I’m not ashamed. Nothing my kids do for me means I’m an incompetent parent. Nothing your kids do for you means you’re an incompetent parent. We are blind and they have sight. It’s that simple. If a parent is a neglectful nasty crack whoreand they also happen to be blind..well that’s a whole ‘nother situation that authorities can deal with. I don’t believe this small blog post will Will cause the removal of a child from a decent blind parent. I actually help others, more than I ask for help. I teach several group fitness classes every week, I teach Health and wellness classes to the blind at my local Braille Institute, I do podcasts and radio, I put on an annual conference for 300 people about the rare disease that I have every year since my vision loss. I cook, clean, do laundry, ride the bus, go shopping, attend my kid’s music performances…all. by. myself! Becoming independent once again is a process, and I am not sitting on my ass waiting for “My independence” to happen magically!!

      Now, I truly did not mean to offend anyone and I apologize for making you so angry. But, I am not going to take down the blog. I DID go in and edit it to reflect MY children’s experiences (Not all children), in MY (Not every Parent’s) unexpected blind life. I hope there are no hard feelings lisa. Thanks.

      Like

  18. I always love your posts Maria! As I read this post it was very familiar to me. I happen to be the daughter of a mother affected with LHON , I am also the mother of a daughter affected by it. I have had the rare opportunity of both points of view. As I read all the things that your children do for you, it warmed my heart. My mother was affected at 8 yrs old so I never knew her with vision, my daughter was affected at the age of 24. I did many of the things for my mom that your kids do for you and I can make a list twice as long. I have never looked at any of those things as a negative. I am grateful for everything that my mothers blindness taught me. You see my siblings and I feel like we were very blessed to have a blind mother. These are some of the things that taught me and molded me into a better person. Here are a few. I learned to have respect for those that have to work harder at things than I do. I learned responsibility because I couldn’t rely on my mom to see a paper and remind me to take it to school. I learned compassion for those with any disability or any other difficulty they may be going through. I learned to be creative, you see my mom couldn’t see to read us stories at night so she would make them up. She painted a picture with her words that gave us the gift of seeing everything in those stories even though it was in our mind. She taught us independence, we had to be a little more independent than our friends did, that was a big benefit! One of the best things she taught us was to have a sense of humor and to be able to laugh at yourself. The list that she taught us could go on forever. Not once did I ever feel like it was a disadvantage having a blind mother. All those things she couldn’t do, doesn’t hold a candle to what she could do! I will always be grateful for all she taught me! So now I have a daughter that I get the opportunity to serve! She has also made me a better person. While I do many of the same things for her that I did for my mother, I would not want give it up for anything. The driving, the reading signs that she can’t see, seeing my grandchildren more than others probably do. Her good attitude rubs off onto me. The list again could go on and on. This has all taught me to be very aware, of what is going on around me. I was told by someone that they had never seen anyone so aware of their surroundings. Yes another gift from my mother and daughter. I have an imagination that has served me well, maybe to an extreme! Thanks mom! So my point is that I believe all the things that I had to do for my mother, and now my daughter is not a fraction of what I get back! I remember one of the hardest things that I ever did was when my daughter was just days into her blindness and we were still learning her new normal. Her toddler son needed a shirt ironed, I could have done it but in the back of my head I could hear my mom saying that she had to do it, there is no feeling sorry for yourself, just carry on. I will never apologize for what I did for my mom and daughter, and neither should you. In reality We are the ones receiving!

    Like

    • Thank you so much Colleen!! I appreciate your support and you bring up some wonderful points based on your own life. I loved reading them and they make total sense to me. I hope your comment helps others to understand where I’m coming from!! ♥️

      Like

      • Maria, you continue to inspire me. As the mother of a son with LHON’s, I can identify with many of the statements in your blog. Most of all I see a love among you all which has grown over the last three years! Keep up the great blogs! I look forward to hearing from you beautiful lady!

        Like

  19. Just so everyone knows… I am not taking down this blog post. It’s not my fault if it gets misinterpreted as highlighting how incompetent a blind parent is. That’s ridiculous! Why would I write a blog like that? Why?

    After much thought, I decided to make some small edits to the blog title and body. And I have added this to the bottom of the blog.

    “This blog post does not reflect anyone else’s experiences, abilities, or competency as a blind parent. I am not speaking for anyone else but myself as a mom who went blind, in a matter of months, at the age of 50 (3 years ago). My children read this blog post before I published it and they said it was pretty accurate to them. That should’ve been my clue that this was reflecting MY family’s experiences… NOT that of my fellow blind parents and their children. I never ever intended to offend anyone in the blind community, or give our families a bad rap as was suggested in recent comments. Instead of succumbing to the angry threats or taking the blog down as requested, I opted to make edits to further personalize and clarify the intention of the post. I hope this will calm the storm. ~ Maria”

    Like

  20. Maria, I appreciated your response to Lisa who truly slammed you. You are very talented in traveling the journey you’ve been led to by your blindness at a your age. I have daughter who is blind so I do understand some of your experiences. Your children are compassionate and have beautiful spirits coming from a strong Mom.

    Like

  21. Maria,
    Your edits are great. In fact, I found the edited post more moving.
    Keep fighting. And kudos to your children. 🙂

    Like

    • Thanks Tiffany!! In hindsight I should have written it that way from the start! Live and learn!! I appreciate your kind words.♥️

      Like

  22. Hi Maria,
    I just wanted to say thanks for editing. While I never would’ve slammed you like some others rudely have, your original wording did make me angry. I’m a blind mum of a six year old daughter, my partner is also blind, we live in the UK.
    I help run an organisation called blind mums connect – your post has created much discussion amongst our members.
    My issue, quite simply, is that as someone blind from birth I would never try to speak for you, or make statements about your life, so I really had a problem with the fact that the original seemed to generalise blind parents. I didn’t like the fact that so many people were reading it and would assume that it applied to my own life too, which in so many ways it doesn’t. I deal with a lot of social workers and other proffessionals in my role, and reading the original could’ve potentially been quite damaging to how they viewed someone.
    I think one of the big points here is I’ve been blind since birth, you haven’t. I had many years to be blind before I became a mum, it’s all I’d ever known. Looking at how the post divided people, it really did seem that those of us born this way were the ones who found your original difficult.
    Anyway, I’m glad you didn’t remove it, written how it is now it’s a very moving piece, and I wish you all the best going forward in your sight loss journey, with your wonderful family.

    Like

    • Hi Kim….
      Thank you very much for your respectful comment. I understand exactly what you are saying. Id like to ask you a favor. Would you please give a message to the brilliant women in the organization? Tell them that I apologize for sparking any anger and frustration surrounding this blog post. I would never purposely slam, Undermind, or insult the abilities (or inabilities) of blind parents. Reading this blog without knowing who I am or what I’m about has caused a huge Misinterpretation of my intent. I hope that the other women will take the time to read some of my other blogs. Keeping in mind that I have been blind for just a little over three years, I hope they find them interesting, relatable and at times entertaining. Thanks again for your respect and insight Kim.

      Like

  23. Although this post has been editted, I still find it a little disturbing. Even though I understand your words reflect your own experiences, and going blind quickly is never an easy thing. BUt the way most people view blogs, they will take this on face vallue and think all blind people are the same. I don’t mean to offend but you really sound like you need a lot of professional training to able to cope better as a blind person. Tehre is 0, and I mean 0, need for a blind person to be putting a sweater on inside out if they know how, 0 reason. There is 0 reason for a child to say curb, 0 reason. The more I write the more I dislike this post, I’m sorry for your situation, I commend the obvious love you have for your children, but I can’t help but say that this post leaves a horrible taste in the mouth.

    Like

  24. Please ignore any narrow minded bigots out there, what you’ve obviously gone through in your life is a tragedy. For your children to be there and support you is obviously down to you being a wonderful mum prior to becoming blind.
    Whether you knock a drink over- who cares, whether you put a top on the wrong way around-just laugh and say who cares.
    It takes a very special person (male or female) to carry on and build a life and have such wonderful supportive children who WANT to help there mum, I wish my kids where just as kind.
    So to all you bigots out there keep your thoughts to yourself and get on with your own miserable existence….goodbye, stay safe and be happy x

    Like

  25. Can I just say, I am really upset at the negativity that has surrounded this post…having lost my sight at the age of 19 very suddenly, I had never experienced blindness or knew anyone blind…what a learning curve that was. I had to rely on people to help me regain my independence and I feel that with Maria being so newly blind, some of the comments that have been thrown at her are unacceptable and extremely unjust. Maria is one of my best friends and the proudest and most loving mother I know and I would ask that people be a little more understanding of the fact that she has lost her sight in her 50’s very unexpectedly, very recently and is heartbroken about how it has affected her children. To say that she is dependent on her kids is just nonsense, that post was a loving and thankful tribute to their support. I find it absolutely incredulous to think that her children wouldn’t be affected by such a trauma, regardless of what she does or doesn’t ask them to do. My brother was 11 years old when I lost my sight and at the age of 32, he still feels the pain of that moment. Is it so different that I had my 11 year old brother or my mother helping me when I lost my sight? Yes, I am independent now, I work, look after my home, cook, clean etc, but it didn’t happen instantly. I needed help with all the things that Maria mentioned and more, until I had built up the confidence to do things for myself.
    Everyone is different and copes differently, some people are born blind and maybe find it a little more difficult to understand why Maria would need a little more help in the early stages of her sight loss and some people like myself, understand that when something like this comes along unexpectedly and rips the rug out from under your feet, a lot of healing is involved, and who are we to put a time limit on that healing?
    Maria is slowly but surely coming to grips with the card that life has dealt her, she does everything in her power to help others in her situation, offering advice, encouragement and support at times where all she needs is an arm around her shoulder and a little support herself. Please don’t malign this lady and crush her confidence at this crucial time, we are all different and all have different ways of coping, but I can tell you something for sure, for any of you who think that Maria is treating her kids like slaves, you couldn’t be more wrong. Maria’s children, who incidentally have and are just about to leave school, are the most well adjusted, strong, brave, funny, intelligent, empathetic, caring, understanding, strong, happy and sassy young adults that you could ever meet and considering they were both in their teens when she lost her sight, have battled on to become such success stories and achieve the most remarkable things including college scholarships, and that is down to Maria holding it together for them and supporting them at a time where she just wanted to fall apart.
    I have spent hours on the phone with Maria, sometimes laughing, sometimes in tears because we still hurt that our sight has gone, and even though I am now 21 years blind, I still get so much inspiration from Maria and she is only a fraction through the journey that I have been on.
    Please people, don’t be so quick to judge, Maria’s words were all gratitude from the heart to her beautiful kids and to read some of these comments has really reduced me to tears as she truly is the most thoughtful, loving and beautiful person both inside and out. I love this woman, she is like a sister to me, please don’t hurt my friend, be kind as she would rather die than intentionally hurt someone

    Like

  26. I really loved this post Maria , and for people to leave nasty comments and be offended by it baffles me. I was brought up by my mum as a single parent. She was diagnosed with epilepsy , years before I was born. As soon as I was old enough I helped her without asking or being asked or told. It’s what you do without realising , because of the love for your mum. People may say I was asked and told and shown how to do things , but if I’m honest I don’t remember but it just felt natural, and I stayed with her for 17 years and never complained.
    Fast forward 20 years , i now live with the love of my life my wife Jill. She is blind. Yes there is spills , drops , trips and stand on’s, but there is also laughs ,loves , journeys , and hope. Jill amazes me everyday with how she copes and I admire her strength and independence. She runs rings around me , she surprises and encourages me every day.
    I can only imagine how I would like to think I would cope being diagnosed with a life changing disease or condition. It would take enormous bravery and courage. Anyone in this position would need all the help and love from the closest of people they know and it’s natural for these people to help , not because of they feel they should be , but because they want to. Keep doing what your doing Maria. You inspire me , Jill and so many more people. Loads of love to you and your family ❤

    Like

    • Hi Ian
      I am a new listener to Jill’s program on connect radio, Have just emailed her. You are so right in what you say, we do things for our mothers because we love them not because we have to. I am lucky enough to have my mum and wouldn’t be with out her and will always do all I can for her, I am totally blind but it wouldn’t stop me from doing things for my mum. You sound like a great guy, Jill is very lucky.:)

      Like

  27. Hello I heard about your post on Jill’s show, I am from Australia and listen to Jill on my victor reader, I have just started listening. What you wrote reflects so much on my own story with my children, People need to remember they do things for us because they love us and not because they have to. My children do some of the same things and I love them so much for it. I am sure you are a great mum and sounds like you have great kids. Would like to email you if you are interested.
    Tracey:)

    Like

    • Hello there!! Thank you for your very kind and supportive comments Tracey! You can press the “contact me” tab on the pink banner across the top of my website and it will shoot me an email… I would be happy to get connected with you that way!! You can also find me on Facebook at my “girl gone blind” page and send me message there!! xx

      Like

  28. Hi Maria,
    Sorry about posting a third time. I really feel so very strongly about some of the rude and thoughtless comments you have received for what I read was thanking your children. I hadn’t read all the comments before this post but I know from experience that not all blind people function the same. Unless you people who have been so rude to Maria know her really well, HOW DARE YOU BE SO DISRESPECTFUL!!! Her children are not slaves, they are not forced I am sure to do the things they do, they just love their mum. Could someone please tell me when that became a crime!!!, Maria has done nothing wrong and her children are not suffering they just want to help, they will be better people than the ones that have been so rude, I as a blind person and a parent hate ignorance as I am sure most of you do so am very upset for Maria that a blind person who should know better could behave like that. If you are not a blind parent then you don’t really know and as I said everyone is different and no one is any better than anyone else just because they may not be always feeling confident. PLEASE Maria don’t let these people upset you too much, you have lots of support and I for one will support what you wrote it was lovely.:)

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: