Another walk is upon us. This has been a tiring year, as we just had our second child!! A little girl, Sophia Grace. Lucky for her, she will never have to know the sadness of having to lose her vision. She will; however, learn some day that she could also be a carrier of this awful disease and that she too could have a son with RP. That will not be an easy thing to tell her. Ethan LOVES his baby sister, and Jason and I are really hoping that his love for her, and her love for him, will help him through this process. He will have another visit to the specialist at the Cleveland Clinic in September, just before the walk. We are trying to make it an adventure by scheduling it around a camping trip in the area. We want to make all of Ethan's experiences with RP as positive as possible. We know that we are fast approaching the day when Ethan will ask us why we attend the vision walk and what Team Ethan really means. That day will be so hard. How do you tell a young boy that he will someday lose his vision? What does that conversation even look like? What details do you share? What do you leave out for the sake of not scaring him? These are the reasons that I am so thankful for the community that I have found on Facebook Social media isn't exactly my cup of tea, it broods a lot of unnecessary drama; but, it has led me to a lot of other people who have RP and/or know someone who does and those connections have allowed me to get some real answers to some of the hardest questions.
Signing off.... tired momma!
PS: If you want to become a part of Team Ethan or simply donate, please visit our page marked shirts/donation, or join the fight and be a part of the cure!
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I am the proud mommy of Ethan! My husband Jason and I decided to start up this web page as a way to stay connected with our friends and families and share our story!