tag:blogger.com,1999:blog-2722680108639788941.comments2016-09-14T09:44:34.011-07:00Are you looking at me? - Living with Stargardt's Disease (a visual impairment)Anonymoushttp://www.blogger.com/profile/03383390823098614455noreply@blogger.comBlogger82125tag:blogger.com,1999:blog-2722680108639788941.post-58228320962876634102016-09-14T09:44:34.011-07:002016-09-14T09:44:34.011-07:00Wow, Heather, I love this blog. You are so right a...Wow, Heather, I love this blog. You are so right about trying to get rid of the negativity in your life. I know you've been trying to help me do the same. I am now more aware of putting myself down because you call me on it. That's a good thing. <br />I think maybe, even at this old age, I will read some of these books. I did start" You're a Badass" and it was funny and great. Life must have gotten in my way. <br />It is difficult enough to be sighted and not second guess yourself. But, having low vision , I imagine would really throw you into a tail spin. <br />You do great, by the way. And, I have noticed that things that used to bother you, bother you less and less. Keep listening to those books. Keep being you, cause you are awesome!<br />Love, MaMary Jane's Playcarehttps://www.blogger.com/profile/09822797178312545832noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-34577117236277413612016-02-28T19:02:52.862-08:002016-02-28T19:02:52.862-08:00Fortunately, I am the only one in my immediate fam...Fortunately, I am the only one in my immediate family who does not need glasses. That didn't stop my parents from dragging me to the eye doctor when I was younger, though. I hate those dilating drops. I have seen my sister deal with the problems of glasses which makes me more thankful.<br /><br /><a href="https://plus.google.com/+Moodyeyes/about" rel="nofollow">Doris Gibbs @ Moody Eyes</a>Anonymoushttps://www.blogger.com/profile/11198302431201217712noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-48923352705313918542015-04-01T10:09:42.840-07:002015-04-01T10:09:42.840-07:00I really enjoyed your blog thanks for writing. I&#...I really enjoyed your blog thanks for writing. I'm a 57 year old that was giving the Stargardt news when I was was 47. Yes does not make sense because we know the definition of Stargardt's. But that is the way it happen. I'm really happy to read what other's have to say. Thanks again. <br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-92106083302634508842015-04-01T07:18:00.160-07:002015-04-01T07:18:00.160-07:00La vida se nos ha hecho difícil a causa de nuestra...La vida se nos ha hecho difícil a causa de nuestra enfermedad, el secreto es hacer de ella un espacio tranquilo y feliz, tú ya lo hiciste! felicidades! Lida Véleznoreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-20219455988432941102015-03-31T15:35:43.629-07:002015-03-31T15:35:43.629-07:00OMG! I can't even put in to words how I feel r...OMG! I can't even put in to words how I feel right now... I'll give it a shot, but there's no way I can fully express this awesome feeling..., I am seriously crying a puddle of such happy tears right now! I love you so much, Heather! I couldn't wait to share this feeling with you! I am so psyched for us both to finally be "un-stuck". You summed it up perfectly. This experience is so positive and so awesome... Just like my awesome sister 😉😘 💜sgangi40https://www.blogger.com/profile/08594535773700868003noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-25536524537290419892015-03-31T13:50:19.238-07:002015-03-31T13:50:19.238-07:00Awesome Heather. I have seen such a difference in ...Awesome Heather. I have seen such a difference in you and Sarah. You are both stronger, happier, and healthier. And we are all supporting each other so much. It truly is fun. I'll never wear a bikini again but I will be stronger and healthier.<br />You guys rock.<br />Love this blog. And love you.Mary Jane's Playcarehttps://www.blogger.com/profile/09822797178312545832noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-28213848579312644822014-07-29T11:20:31.139-07:002014-07-29T11:20:31.139-07:00And again you push yourself out of your comfort zo...And again you push yourself out of your comfort zone. I love your painting. It has great feeling. I bet Sarah loved it too.<br />It is awesome how many different things you try. I am proud of you. You are a great example to your girls. And allow yourself to have fun whenever you can. That's what it is all about.<br />better hang that painting up...Spooky Old Tree. I love it!Mary Jane's Playcarehttps://www.blogger.com/profile/09822797178312545832noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-78029162503490081702014-07-18T20:23:24.670-07:002014-07-18T20:23:24.670-07:00Heather, Jan is so right! And so is Alexis. "...Heather, Jan is so right! And so is Alexis. "Life is Great!" You make life great for your girls. They are full of fun, adventure, silliness, enthusiasm, and joy! They make the world around them shine.<br />Those dark times were so difficult, but you'd never even guess you had them by how happy your girls are. And, also, by the way your face lights up when you are with them. <br />As for Rockport....you are the guys who make Rockport awesome. Your girls, Dom and Nessa. Their fan club on Rockport keeps growing. New traditions crop up every year. Now we have Disney nights with Trisha and Joe. <br />You are doing an amazing job, My Heather and I am so very proud of you. <br />As Jan says...."keep on keepin on". Mary Jane's Playcarehttps://www.blogger.com/profile/09822797178312545832noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-67370463391654126752014-07-18T17:11:16.990-07:002014-07-18T17:11:16.990-07:00Heather I have known you since you were your gir...Heather I have known you since you were your girls age and always knew you would achieve greatness, which you undoubtable have. You never let your vision dampen your goals.....being Irish didnt hurt either! You come from a long line of tenacious women that have paved the way for you and your girls. Keep on keepin on! Love Janetjanet moraisnoreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-48925157104096423452014-04-28T00:41:50.149-07:002014-04-28T00:41:50.149-07:00Alanna, you are beatiful...inside and out. You ama...Alanna, you are beatiful...inside and out. You amaze me. You have done such a great job dealing with this news. I heard you have made friends who live near you that have low vision or are blind. I heard you run with a woman who is blind. And, I think, Heather told me you ran a race side by side with her. Heathrr told me all this cause she loves you and is so happy you are doing so well. I am happy that two very sweet and amazing woman have become such good friends. And are there for each other.<br />Thank you for coming into our lives. Someday, I'd love to meet you and your beautiful family. Take care, Honey. And keep on being your awesome self.<br />Love, Heather's Mom / MJ<br />PS...Yes, I am so very proud of her.Mary Jane's Playcarehttps://www.blogger.com/profile/09822797178312545832noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-80169822091578359852014-04-25T10:59:22.031-07:002014-04-25T10:59:22.031-07:00Sweet friend of mine...I miss you and your inspira...Sweet friend of mine...I miss you and your inspiration! You don't know how grateful I was a year ago to know you were there and that I was not alone in this battle. What a blessing you were to me during that difficult time! I have learned so many things since then and no matter what happens, I know that I am not alone. Just got a call yesterday that the Progstar Study is about to begin. Great things are happening. Slowly, but surely. There is hope. I love you and your sweet willingness to reach out and help others. Some day I will do for someone what you have done for me.<br />AlannaAlannahttps://www.blogger.com/profile/15320707974719906150noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-58761219747031338642014-04-24T07:44:31.009-07:002014-04-24T07:44:31.009-07:00Thanks so much for writing this. II was diagnosed...Thanks so much for writing this. II was diagnosed with Stargardt's over twenty-five years ago. Not until I found social media this year, did I have the opportunity to hear from and speak to others with the same visual impairment. There is indeed a comfort and a renewed strength in knowing we are not alone! Myra Hindmanhttps://www.blogger.com/profile/09240153030025866066noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-85687294221952432292014-04-23T19:17:12.097-07:002014-04-23T19:17:12.097-07:00Heather you truly are a remarkable woman. I love ...Heather you truly are a remarkable woman. I love two of the comments you stated in your blog, "you never know how strong you are until being strong is the only choice you have" and the other "focus on what you can do. you will find creative ways to accomplish your goals." I suppose we really never know what it's like to live a day in the life of another but to be with you and see how you are with your children and family, it is evident that you welcome each day with a positive attitude and make the best of each day. You are a true inspiration and your ability to express your emotions so candidly is such a gift, since "you are not alone..."Diana Contnoreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-20013591783919156772014-04-23T18:32:19.661-07:002014-04-23T18:32:19.661-07:00You are not alone! Love this blog. Your words are ...You are not alone! Love this blog. Your words are so strong Heather. It does my heart good to know that you are writing to others with visual impairments. Being able to express yourself so eloquently is such a gift and such a blessing for those of us who read your blog. <br />You write so positively. Sometimes you express anger and frustration. Yes! That's what we all need to hear. <br />People need to know the trials and frustrations low vision people go through. How will we know if you don't tell us? Even those close to you can miss what you are going through at times. <br />For you to share these feelings with others, helps them realize that they too can express how they are feeling. Others feel the same way! <br />Isn't the internet awesome at times? 30 years ago, we were so alone and floundering. But, we did well. You did well! You taught all those around you that you were an independent and capable person. Ok, there were some things you were told not to do....but, running, swimming, soccer, skydiving, white water rafting, and even bungee jumping were obviously not on that list!<br />Hope people read your words and are inspired and comforted. You are an amazing woman, Heather. And your Mom is so very proud of you.Mary Jane's Playcarehttps://www.blogger.com/profile/09822797178312545832noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-7692861265980336662014-04-03T18:18:36.320-07:002014-04-03T18:18:36.320-07:00Ok Heather, you are truly amazing. I love this new...Ok Heather, you are truly amazing. I love this new blog. You have come so far from that sad time. You pulled yourself out and are thoroughly enjoying the kids. Which I must say they are hysterical. Some of my favorite times are when we are in the car and one of them comes out with something that just blows you away. Some new amazing fact Alexis blurts out. Or Ayla talking to her fingers. They are a laugh a minute.<br />We did watch Josh Blue and he is really funny. Great sense of humor.<br />And Growing up Fisher is truly a wonderful, delightful way to help people understand the everyday life of a blind person. Though I have to say, I love Mel and his ability to find humor all around him. Would have loved to meet the real Mel!<br />So, Heather, keep on laughing, as if you have a choice with Chip, Jon, Sarah, and Dad in your life. <br />And so glad the cheetah curtains are now coffee cup curtains. Love ya mints, Honey. Your MA<br /><br /><br />Mary Jane's Playcarehttps://www.blogger.com/profile/09822797178312545832noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-81012521770383695892014-03-03T13:47:31.754-08:002014-03-03T13:47:31.754-08:00Ok, Heather, you know me and know I am rarely at a...Ok, Heather, you know me and know I am rarely at a loss for words. But, right now my mind is so full of thoughts. <br />When Alexis had to go for her check up, I was a mess even though I knew it was unlikely to be Stargart's. But, see, UNLIKELY. When you and Chip got back with Alexis you knew what I was thinking. And I could see in your face that you too were worried. All those appointments came flooding back. God, please. Then you told me her retinas were fine. Immediate relief.<br />You know me so well, my Sweetheart. I didn't even tell you what I was so very worried about....you knew.<br />Yes, we should be ashamed at ourselves for being sad that she has to wear glasses. You would think that after wishing since you were 9 that you COULD. wear glasses to help you, that I would seriously not be sad. But, I was. Strange, Jon had to wear a back brace,. It bothered me but I knew it had an ending. and he could wear it in the privacy of his home. <br />Well, we are pretty sure Alexis' eye will strengthen but will she still need glasses? Mostly likely not for awhile anyway. But, I guess my point is that she has to wear them around her peers. Who will tease her? Will they all accept the change? We all know kids can be cruel. And our Alexis is so sweet and so private. How will she do? Well, she's done amazingly well! And who couldn't love her in those gorgeous glasses she picked out! As parents it is so difficult for us to not let go. It is so hard to see our children struggle, even if it isn't a huge struggle. <br />And, you Heather, have had to deal with so many struggles. Like you said, you felt like maybe your girls would be free of your struggle. Good news is Alexis only has to strengthen one eye. We are lucky. Blessed and relieved. <br />Thank you for all your kind words about your Mom and Dad. You were the brave one. We took our cues from you!<br />Looks to me like your two beauties are turning out to be just as brave, as thoughtful, as loving as you.<br />Let's just hope Ayla doesn't go sky diving first chance she gets! (Had to lighten myself up!)<br />Great post as always. Sorry, you have to relive all this. Very proud of the way you held yourself together during this with Alexis. <br />Love ya mints, your MA<br />Mary Jane's Playcarehttps://www.blogger.com/profile/09822797178312545832noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-7882841339181252452014-02-03T14:17:55.997-08:002014-02-03T14:17:55.997-08:00Heather, this post is a good reminder to everyone ...Heather, this post is a good reminder to everyone to be kind to everyone they meet, because you never know what challenges they have! A great post!Kerryhttps://www.blogger.com/profile/11826212924130421399noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-14577574002565265812014-02-02T18:42:28.908-08:002014-02-02T18:42:28.908-08:00Wow, Heather, this one will help so many others fe...Wow, Heather, this one will help so many others feel less alone. It breaks my heart that everyday you encounter some negativity , but I have watched you shake it off and move on. Seriously not an easy thing to do. I am so proud of you. Having children does change your perspective. Life becomes less about you and more about the kids. You've done a great job of embracing that. And that those little girls are proof of that. But, the responsibilities of 2 children can make life overwhelming for a non- disabled( personally I think we all have some kind of disability) person. But, you and some of the people you have become friends with amaze me!<br />So, as I said at first, this blog will help others know that they are not alone in their daily struggles. That others feel the same frustrations and ,yes, embarrassment. Hopefully, you all will come to understand that the people who embarrass you are not important. Mostly, they don't understand, but some are just plain rude. It's your own community, the ones that know, forget, remember again, the ones that care about you. The ones who love you and want you to accept their help without embarrassment or frustration, they are the ones who count and will always be with you.<br />Your children will be stronger and more empathetic....they already are. They will always be able to accept people who are "different". <br />You are strong. Stay strong. Understand that you are amazing! And you are so loved, Ma.Mary Jane's Playcarehttps://www.blogger.com/profile/09822797178312545832noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-70536874011773572352013-12-31T11:10:46.019-08:002013-12-31T11:10:46.019-08:00And much love to all of you.
And much love to all of you.<br />MEhttps://www.blogger.com/profile/01099821776272139022noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-50469750570258634682013-12-31T07:35:23.551-08:002013-12-31T07:35:23.551-08:00Focus is a funny thing. When jumping on horseback ...Focus is a funny thing. When jumping on horseback you are suppose to focus on the top rail of a fence then switch your focus a few strides out to something like a tree in the distance. That way you are looking up where you are going and maintaining proper balance on the horse. So basucally I try to focus on stuff I can't see. It took me forever to get this cause I kept focusing on what I could see. Namely the top rail as we were going over the fence When I finally taight myself how to focus on nothing my mare jumped better. She was willing to fly for me. .Sometimes it is so easy to fall into the trap of focusing on what we can see/focus on we forget there is a whole world we may not see clearly but is waiting to be experienced in other ways.Trishnoreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-44882824308527607062013-12-31T06:52:40.493-08:002013-12-31T06:52:40.493-08:00Happy New Year, My Heather! and a Happy 5th Birthd...Happy New Year, My Heather! and a Happy 5th Birthday to our precious Angel.<br />Well, you did it again. What a poignant blog.<br />You have helped some very special people this year, Heather. And have added new friends to your life. 2014 is going to bring more friends. And you are going to help many more people. You are even venturing out to help those who are visually impaired navigate the iPad and make their lives better. I am so very proud of you.<br />You have also helped your family understand the struggles you go through day to day. This can grow into an understanding for many others. Thank you, Heather.<br />You are also correct about 2013! What a disaster of a year. The bombings hurt so many both physically and psychologically. <br />Outside of the bombings, we have lost some very precious people.<br />You and the rest of this amazing family have been a great support to me with the loss of my Irish Twin, Nancy. I will try to follow Sarah Ben Breathnach's advice. It is great advice! Of course, you know, what helps my sadness is my awesome grandchildren. <br />Thank you, Sweetheart. As, Alexis says, I love you more than as far as the last star in outer space!<br />Happy New Year to all! Love ya mints.<br />MAMary Jane's Playcarehttps://www.blogger.com/profile/09822797178312545832noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-11333707090194944342013-12-07T09:58:43.000-08:002013-12-07T09:58:43.000-08:00Every experience we have good or bad affects us an...Every experience we have good or bad affects us and sometimes haunts us, but not ever <br />define us. I love reading your blog.Anonymoushttps://www.blogger.com/profile/00790100236896857699noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-52809917886023984572013-12-07T06:33:53.266-08:002013-12-07T06:33:53.266-08:00OMG, Heather, I so remember your experience with t...OMG, Heather, I so remember your experience with that class. You going early to class. Me asking you why you had to set up!! Haha. Then that very negative experience. You, my Heather, have ALWAYS been focused, especially if it is something you want to do.<br />One of the "problems" with some visual impairments is that the person who has the impairment does not look like they are visually impaired. Remember we met the man at the Fair the other day? Well, we knew he had impairment but we did not realize he was truly blind. Never seems to end. <br />But, you, do so well at life ( even though you question that) even those around you forget how difficult your life can be. Sometimes that's a good thing, sometimes not so good.<br />I guess I am trying to say that you are not defined by your eyes. There is so much more to you. But, because of this, people who really don't know you can say seriously hurtful things. As must be the case with some of the people reading this blog. Please just remember this is not because you lack something, it is because they lack sensitivity. Like with that "instructor" , in hind sight wouldn't have been great if you said to her:" I am focused, you seemed to lose your focus ....remember I told you I would do this?" <br />Hindsight is so awesome.<br />T25.....wow! I watched you transform yourself in 10 weeks. Talk about FOCUS!! Two little munckins running around in and out of your workout, and you kept going on. When the 10 weeks were up, I had to ask myself: why did I just watch you do this and not do anything myself. I am so impressed.<br />You are truly a wonder, Heather. And I love this blog. I bet there are many others who have had that negative experience and appreciate reading that someone else has been there, too. I also like how you show how you get around all your obstacles and forger foward.<br />Love ya mints, Honey.Mary Jane's Playcarehttps://www.blogger.com/profile/09822797178312545832noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-7786111393266146262013-11-25T11:48:59.221-08:002013-11-25T11:48:59.221-08:00Yes, Kerry! thank you. She would be a world of he...Yes, Kerry! thank you. She would be a world of help to those who have just learned that they have low vision. She cares so much.Mary Jane's Playcarehttps://www.blogger.com/profile/09822797178312545832noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-76895054723910254322013-11-22T19:12:02.032-08:002013-11-22T19:12:02.032-08:00WOW, Heather, this email is incredible. You shoul...WOW, Heather, this email is incredible. You should be come a vision assistive therapy consultant!Kerryhttps://www.blogger.com/profile/11826212924130421399noreply@blogger.com