tag:blogger.com,1999:blog-2722680108639788941.post5977799196089679868..comments2016-09-14T09:44:34.011-07:00Comments on Are you looking at me? - Living with Stargardt's Disease (a visual impairment): Back to SchoolAnonymoushttp://www.blogger.com/profile/03383390823098614455noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-2722680108639788941.post-15726267834983466562013-08-21T19:13:46.330-07:002013-08-21T19:13:46.330-07:00So, Heather, I went down to get your beauties. Wel...So, Heather, I went down to get your beauties. Well, they were upstairs all tucked in and comfy and Auntie Sarah was on her 3rd reading of "Goodnight Moon". One precious Sweetheart was asleep and sweating, the other on her way. So, no worries. Good night, Honey! Love yaMary Jane's Playcarehttps://www.blogger.com/profile/09822797178312545832noreply@blogger.comtag:blogger.com,1999:blog-2722680108639788941.post-91700475414266892592013-08-21T18:55:02.758-07:002013-08-21T18:55:02.758-07:00I have been trying on and off all day to respond ...I have been trying on and off all day to respond to this amazing testimony! I am overwhelmed. Was in tears. I know you appreciate my help, Honey. Even though I know it is difficult for you to accept sometimes. <br />But, I must say, in regards to your school years, you made me the advocate. I would watch you and see how determined you were. No one was going to take that away from you....not if I could help it. You worked so hard to keep on the same page as everyone else. As a Mom and a teacher, I knew that you could have easily done the work and more, if you did not have your low vision. Teachers would say to me:she is doing so well. And I would say:imagine if she could really see! All the tools you needed upset you so much. Made you different. Imagine if the iPad was around then. Boy, would your life and studies have been easier. I love APPLE for what they have done for you. <br />Fears: I am going to tell one short story that may help others understand. In the 8th grade your class went to Washington on a trip. Every night, Nancy (my sister) would listen to my fears. So many. How can I let her go? What if she loses sight of her group? What if she can't find them? How is she going to order food from those fast food neon menus? On and on. Well, Nancy finally convinced me to let you go. She even went with me to put you on the bus (probably afraid I was going to back out). So, we waved you off. Went back home. Sat in the kitchen. Looked at each other and cried. Nancy was just as scared as I was but knew you had to go.<br />You are right to tell the parents to expect high anxiety when school starts. Here we go again. Letting new kids know, getting teachers to understand, going out on the playground and trying to find your friends. In high school, knowing which halls were one way. Ok, enough. You all get the point. It is not going to be easy for your child. They will have changes in behavior at this time. Some will get real quiet, some angry, some extremely anxious, most will snap, get frustrated, etc. This is a very difficult time for them and for you. You, because your heart is breaking. Good luck. And if anyone wants to talk to me, Heather will give you my number or email.<br />Back to you, my Heather, sorry for rambling on. Hope that was ok. I am so very proud of you for doing the trials. For making yourself available, even if you think it might not help much. You are right, every tiny bit of information they get is important. I am proud of you for this blog. You are helping so many. You are helping parents, who if they are like me, feel lost and almost helpless. You are helping those who have just been diagnosed and those who have had low vision for a long time. Why, because of your spirit, your attitude, your humor, and your love of life.<br />I better go, your kids need to go to bed....if I can get them away from Bobbo. And you and Chip need to enjoy your camping trip. I am jealous of the kayaking and bike riding plans. And I know you probably won't dance in the dark. <br />I love you with all my heart, Sweetheart. Great blog. And thanks for making an old lady feel so appreciated. Kisses<br />Mary Jane's Playcarehttps://www.blogger.com/profile/09822797178312545832noreply@blogger.com