About Us

Joy & Jenelle

Our Kids

Sometimes we laugh about it, sometimes we cry about it, sometimes we share news and medical articles about it, sometimes we avoid talking about it altogether, but it’s always there.  We’re identical twin sisters who have grown up with RP.  We’re now 34 years-old, both married to amazing guys, and have sweet little daughters.  Although we look a lot alike on the outside and share the same challenges of vision loss, we often have different perspectives on the disease and each deal with it in our own way.  We wanted to create a blog mainly for other people with RP, as we find it helps to feel connected when facing the day-to-day challenges of living with RP.

We also hope that it can give family and friends of people with RP, Ushers, and other similar diseases a glimpse of what it’s like to live with these types of challenges.  And frankly, this is therapeutic for us, so even if no one (besides our mom) reads it, we’re gonna write it anyways!

A little background on us individually:  Jenelle (the eldest by 4 minutes!) has a BA in Communication and Sociology from Seattle Pacific University, spent a number of years working in the non-profit sector, and most recently owned and managed a clothing boutique.
She is now the “24-hour-personal assistant” to her two children, Cora Jean (5 years old) and Benjamin (one year old).

Joy studied Sociology, English and Spanish at North Central College, has an MA in Education, and spent several years teaching 7th grade Language Arts.  She now spends her days teaching, among other activities, her 8-year-old, Lucy, and 4-yaer-old, Elliana.

Though we live 2000 miles apart (Jenelle in WA and Joy in IL), we talk almost daily and hope that this blog will help bridge the gap in miles.

15 thoughts on “About Us

  1. Hi Joy and Jenelle, I followed a link from the RP Facebook Group and have been reading your blog. I’ve really enjoyed the subjects and reading about your struggles with RP. I am insanely jealous that you have each other to compare stories/laugh/cry and commiserate together. LOL. I have very similar vision as both of you but wasn’t diagnosed until 5 years ago. I thought that little window is what everyone saw….I’ve always compensated by scanning. I am looking forward to your stories of parenting with RP and maybe one day sharing my stories of parenting 3 teenagers…it would be easier if I could see all of their face at once to tell if they are lying to me…but their hesitant speech usually gives them away! Thanks for sharing your lives…your girls are beautiful!
    Sandy Sommers (Ohio)

    • Hi Sandy – thanks so much for you kind words! So glad you enjoy reading our blog. We will certainly need your parenting advice on the teenagers down the road, so please take notes! I am curious to know your perspective on telling people about RP since you were diagnosed much more recently than us? Also, were you somewhat relieved to finally have an explanation to why you didn’t see certain things that other people could see?
      Jenelle

  2. Joy–
    Dan Deneen (aka uncle Bro), here is Richmond Hill, GA. Sister Pat sent the link to the blog which I just read and enjoyed very much.
    I clearly recall a moment similar to your Kleenex ordeal when I was in first grade and bullied repeatedly— that memory, although fading somewhat, is still there, Billy K. waiting for me and punching me in the guy– happened daily— ….. although I do not have visual impairment, I do have sad memories of such past experiences. Those I looked up to let me down,
    As a teacher here at the local high school, I deal with several kids that have problems related to diabetes, physical limitations, etc—- I really try to be as sensitive as I can as their advocate. It seems that in this evil world a greater number of people (sadly, teachers and administrators included) are so self absorbed that they blow off the significance of those with special needs.
    It seems the bullying is diminishing a bit at our school (great legislative move for the feds and state folks….where were they when skinny old Bro was teased daily at St Stephens school in the late 50s LOL )…..anyhow, my task is to be the guy that the kids at school use as the go-to man when the dull and thoughtless teachers have hearts of stone. My faith prohibits no less……please keep me posted on the Canada plan, our family will be praying that it is successful….please know that an open invitation is in place for your family to visit us in GA, it would be great! Tell Ben I enjoyed the video Pat sent me of his church introduction a while back.
    He is a great speaker and his faith is clear— those folks are fortunate to have him!

    Sincerely In Christ– Dan Deneen

    • Thanks Dan/UB! I wish there were more teachers out there with your same mindset and values, and I am so thankful that your students have such a wonderful role model and someone to turn to. I am sure your experiences as a child are what fueled, at least in part, the compassion that you have for your students today.

      We will definitely keep you posted on our treatment in Canada– we plan to blog on it daily while there! We really would love to come visit GA sometime, so thanks for the standing invitation (maybe once our youngest is a little easier to travel with!)

      Thanks so much for reading our blog– glad you enjoyed it. Take care, and God bless! Joy :)

  3. I have RP, a two year old beautiful, vivacious blonde boy and a 3 month old delightful baby girl. My wife is the love of my life, a woman I chased around the world before she would finally acquiesce. In spite of this, I feel the weight of the world crashing down on me because I suddenly feel totally inadequate and fear I will not be able to provide for my wife and kids. I am a 32 yr old man and because of this enormous new challenge, feel like a 90 yr old man. I was diagnosed two years ago, and just last month sold my house and left my job to enter a 16 month accelerated bachelors of nursing program, all this in order to hopefully find some career that will accommodate my diagnoses and support my family. I stumbled across your blog and I appreciate seeing that I am not alone. Thanks
    Chad

    • Thanks so much Chad. I am so glad that you found our blog and have found it encouraging. I definitely know the feeling of the world crashing down. It sounds like you’re a very motivated, caring father and husband who is not allowing RP to stand in the way of your goals. Wow– nursing– I’m impressed you can do that with low vision, so kudos to you. What was your career before?

      Definitely feel free to e-mail us personally if you have any specific questions or anything! Joy :)

  4. So happy to find your blog. My twin boys, age 7, have XLinked RP, my dad is blind, and I am affected as well. I have given up night driving and have trouble recognizing people from a distance. I also have an affected daughter and a ten year old unaffected son. I hope to gain encouragement here. Thanks for sharing your stories.
    Tracey

    • Thank you for reading our blog and sharing about your family, Tracey. I met a woman from Canada last week at treatment that has x-linked RP and 2 of her 5 children are affected by it and her dad went blind from it. She is really an amazing person to talk to and knows so much about the history of x-linked RP, so please let me know if you’d like me to pass your email address on to her.

      I hope you find hope and encouragement and some good laughs from our blog.

      Best,
      Jenelle

  5. Hi girls,

    I’m 30 and I’m from the suburbs of Chicago and I was just officially diagnosed with RP today by my optometrist (the possible diagnosis was brought up a week ago). I’m still waiting to see a specialist but it pretty much looks like I have Ushers II (I was born hard of hearing but didn’t notice my vision going until I struggled with night vision in my 20’s). All I’ve been doing is crying all week but I came across your blog tonight and I have to say it was the first time I found something on RP that was reassuring, inspiring, and hopeful. The fact that you guys have had rp your whole lives and you still live a fulfilled life with kids gives me hope. I’d like to email you with personal questions but I can’t find the contact info. Could you give this to me? Thanks girls and keep up with the amazing work!

  6. Joy and Jennele,
    You are two very special people. I can’t imagine the ‘Double Vision’ blog by a person of limited vision. Your writing is clear testimony to the double vision.
    Keep it up
    Paul (Author, Into the City Church)

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