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• It has been 2 years!
• Posted: 2008-02-08 08:39:02 By Katie V
• Hello all. I don't post often but I come in here regularly to read your posts. I do have contact with some members of this site and they are incredible.
  
  I was just thinking that it has been 2 years since my daughter Meghan was diagnosed with RP. WOW time flies. She is going to be 13 next month and doing fabulous. She is wonderful and has really made RP easy for us.
  
  Meghan has 20/25 central vision without correction, strong color vision and 40 degrees peripheral left. She is totally night blind but it does not bother her at all. She plays soccer, sings and just loves life. We volunteer with the Canadian FFB ( we live in Ontario Canada) and the Ride for Sight. We feel it is important that we are involved in helping raise money for research. Meghan is under the care of a fabulous Dr at the famous Toronto Sick Children's hospital. We do believe she will see a treatment or cure in her lifetime. Now whether it helps her we won't know.
  
  I guess after her RP diagnosis I thought that life was over as we had known it. Well it is not, different but not bad . RP **** but it has changed us in a good way. We don't sweat the small stuff anymore. We travel waaaaaaaaaaay more with our girls, we volunteer in the community ALOT and we do not take things for granted. RP is obviously not what we wanted for Meghan. She will have her issues and troubles because of it. But in the meantime we do not enable her or let her use that as an excuse. I truly believe she is going to be just fine.
  
  Anyway I just wanted to let you all know that after 2 years we are still here. Sometimes life just kicks you in the butt and you realize you never know what is going to happen. I guess that is what makes it interesting.
  
  Thanks everyone for you posts and thoughts over the years
  
  Cheers
  
  Katie

• Re: It has been 2 years!
• Posted: 2008-02-10 10:46:24 By Natalie C
• That is so great to hear Katie!!! Love the attitude and the fact that Meghan and your whole family are taking charge of life. My best to you and your family--I wish every RPer had a family like yours!

• Re: Re: It has been 2 years!
• Posted: 2008-02-10 10:54:26 By Katie V
• Thanks Natalie
  
  I figure you can mourn the loss of something you cannot change or decide to not let it take over your life. As her vision gets worse it will be tough but I firmly believe that we will just ride the wave and have lots of ups and downs and continue to enjoy life. Fundraise, laugh more etc. It is easier to be sad and depressed than happy. Life goes on.
  
  Katie

• Re: Re: It has been 2 years!
• Posted: 2008-02-10 10:54:30 By Katie V
• Thanks Natalie
  
  I figure you can mourn the loss of something you cannot change or decide to not let it take over your life. As her vision gets worse it will be tough but I firmly believe that we will just ride the wave and have lots of ups and downs and continue to enjoy life. Fundraise, laugh more etc. It is easier to be sad and depressed than happy. Life goes on.
  
  Katie

• Re: Re: Re: It has been 2 years!
• Posted: 2008-02-10 11:10:48 By Natalie C
• I was diagnosed at age 12 and had vision similar to Meghan's at the time--good acuity and decent peripheral. I got my license, played high school tennis, went to college, led a normal life and just made adjustments as needed. I was fortunate enough to have a supportive family and a great group of friends, so my outlook was always positive as well. In fact my only 'down time' was when I gave up driving three years ago. It was a big adjustment, but also propelled me to where I am today which is back to my normal life filled with tons of activities as a mom and enjoying a positive outlook on life. I think a large part of the difference in my outlook vs. others is the fact that I do have such support from loved ones. That is how I know that Meghan will be all right as well. She will go on to do many wonderful things in life -with or without vision-and that will be in no small part to her circle of support. But in the meantime, I'm with you-let's raise money and find that cure!!

• Re: Re: Re: Re: It has been 2 years!
• Posted: 2008-02-10 11:49:55 By Katie V
• Thanks Natalie
  
  It is good to know that someone was diagnosed about the same age as Meghan and did so well. How old are you now and what are your visual fields now?
  
  Meghan will never drive. In Canada you cannot drive if your peripheral fields are less than 120. The good thing is she knows that now and will have to make sure that she lives where there is good transit.
  
  Thanks again
  
  Katie

• Re: Re: Re: Re: Re: It has been 2 years!
• Posted: 2008-02-10 12:13:27 By Natalie C
• I am 38 now and my field is less than 10 degrees in each eye. People who don't know I have RP can't tell I have any visual problem at all because I have adapted so well over the years to the gradual loss. I have finally come to the point where being in crowds or places with lots of little ones running around stresses me out a little because I don't have a cane or anything and I need to scan with my eyes so much. But even that doesn't stop me from doing anything I want. I went ice skating a few weeks back with my girls and I hope to get back on the ski slopes one of these days. I am co-leader of 14 Brownies (Girls Scouts), I work one day a week as an accountant, I'm president of our local FFB chapter and I have two energetic daughters (7 and 3). So when people ask, 'How do you do it?" my thoughts are 'how can I not?'. Life is too fun and too busy for there to be any other option. I take a day every now and then to mourn the loss of my vision, but it is short lived and, I think, part of the natural process. For me, the key is to stay busy and try to focus on helping others. My boss through out the saying the other day, "I cried because I had no shoes until I saw a man who had no feet." I think that sums it up perfectly! Anyway, I know I'm rambling here, but feel free to ask questions anytime you want.
  P.S. I had a good Canadian friend I met when I lived in Europe and she was from B.C. I hope to get there someday soon as well! Keep up the traveling!

• Re: Re: Re: Re: Re: Re: It has been 2 years!
• Posted: 2008-02-10 12:39:17 By Katie V
• Natalie
  
  Thanks for your reply. I am 41 with 2 girls. My oldest is 14 and in grade 9 and Meghan is 12 though she will be 13 next month and she is in grade 7.
  
  I am so glad that you have shared your story with me. You are living your life how I want Meghan to live hers. Most people do not realize her vision impairment or they think we are lying as she does so well. I so want her to get through high school and university with good useable vision. I do worry about her but then that is my job. If I begin to worry then I think to much and that is when the mind goes crazy.
  
  Why have you chosen not to use a cane?
  
  It sounds like you are living your life to the fullest. Good for you.
  
  Yes we will travel and have fun. Meghan is very musical so she is very involved with that.
  
  Thanks again
  
  Katie