Happy Anniversary

Yesterday was Ben and Joy’s lucky 13th wedding anniversary, so I would be remiss if I failed to congratulate them on this accomplishment!

And today, July 18th, I want to say Happy Anniversary to doublevisionblog! It may be faux pas to wish ourselves a happy anniversary, but we’re doing it anyways.  It’s all part of redefining normal as our so-called “blog tagline” goes.  When we started this blog one year ago, we weren’t really sure what would become of it.  We had a general idea of what we wanted to write about, but the blog has evolved from there.  We have been encouraged by our readers to continue to share through our writing.  I want to thank my sister, Joy, for continuing to post over the last six months.  Frankly, I just haven’t been in the mood to share.  But I am sitll glad that Joy has kept the blog going because her writing continues to inspire me and others.

The response we’ve received from our friends and family has been overwhelming to say the least.  We are so grateful for your uplifting comments and interest in our posts.

On our anniversary, I wanted to take the time to collect a few of the comments from complete strangers that have been especially touching to us this past year.  If it seems like we’re patting ourselves on the back here, that is exactly what we’re doing.  We’re proud of what we’ve created and the small yet meaningful impact it has had on others.

“So well written….. My wife’s (Anne) RP was diagnosed the first year of our marriage. We have now been married for 22 years. She has about 13 degrees of visual field and had to stop driving about 13 years ago now.  Reading your blog is real helpfiul to me. It is so much of what we experience and I felt such a sense of “yup we experience that too” ….just went walking tonight and noticed the sun had begun to set earlier…keep up your blog and thanks again.” – Steve 8/18/2011

“I just came across your blog…my wife has RP, so I am reading up on how others live with the disease. I saw that you live in Leavenworth…my wife is from Wenatchee and we currently live in Bellingham, WA. You and your sister are doing wonders through your writing by just sharing. Thank you.”
– Ryan 8/31/2011

“Dear Joy and Jenelle, I am SO glad I found your blog!  I have Usher Syndrome, Type 2…which, as you know, is both hearing impairment and RP.  My sister, three years older than me, also has this.  Our stories, though, are very different from each other – in terms of when the RP was diagnosed, how slowly or quickly it progressed (over the past 22 years for me, but only three or so years for my sister), and how we cope with it. My sister created a Facebook page called Usher Me In – she is sharing her experiences.  I have not decided to do anything yet, but after reading your blog, I am inspired to do a blog of my own – or perhaps ask my sister to do it with me, just as the two of you are doing! I cannot even tell you how many of your stories resonated with me!  And I laughed at many of them, even though they caused such embarrassment and tears for you…and for me in my own life…but I laugh because I thought “yes, exactly!” and recalled my own experiences that were so similar – I sometimes thought you were writing MY story, even your word choices were perfectly applied to me at times!  So I laugh because it’s more cathartic than crying, most of the time anyways.  And I feel your pain, your shame, and your strength to write about it and hopefully laugh about it, at least after the fact. And also, you’ve given me the “lingo” and the joy of calling myself another VIP….we may be visually-impaired people, but I think we are also very important people, very inspiring people, very independent people…and I’m sure I’ll come up with more! Thank you and keep writing please!”
– Roberta 9/4/2011

“Firstly, “hello from Australia”, I am a new reader. Secondly, thank you. Thank you for taking this courageous step and sharing your letter. I’m sure that anyone with RP or similar conditions will find at least one thing in this letter that truly helps them by way of knowing that someone else gets “it”. The value in that is monumental and by you being generous with your emotional journey, you are giving a great gift. I took a step in sharing the details of my eye conditions on my blog some months ago and it felt great. While I had always said that I was legally blind, it felt freeing to share the specifics. I have more to share in time when I am comfortable with putting it out there. I am thrilled to bits to have found your blog.”
– Lucent 9/16/2011

“I juat got done reading this entry and I can tell you from probably line 2 of the letter you included I was crying. I feel all those things but rarely say them and surely do not write them down. Reading this has helped me understand that I need to face all those things I hate about RP and move on so I can be a better and productive mom, wife and just person in general. Thank you so much for sharing this!” – Becky 9/16/2011

“This has truly been the answer to a prayer…I continue to pray to find someone who experiences RP in the form that I have.  I am “highly vision impaired” but I do teach every day.  Unfortunately, many people want to use your vision loss against you…so tired of feeling stupid all of the time…I have goosebumps reading what you wrote. It is so on target with how I feel…” – Linda 9/22/2011

“I am late to this blog…..I am late to most things due to RP…..this is the greatest representation of what daily life is all about with RP that I have ever read. I will be reading this blog for as long as I still can see the screen. You two are the greatest. Thank you for providing information to the masses that us shy people just cannot bring ourselves to do. Greatness. Thank You.” – Scott, 6/28/2012

Top Ten Reasons You Too Should Become A Walkin’ Mama

Living in the suburbs, where honestly – people pretty much drive down the driveway to get their mail, I have had some of the strangest and funniest reactions when people have found out I’ve walked places.  When Ben and I were first married, we lived 3 blocks from North Central College where I worked, and co-workers would always ask incredulously “You WALKED to work?” as if I’d just run a marathon despite the fact that they knew where I lived.

And when I lived 2 blocks away from the middle school I taught at, I constantly had teacher-friends insisting on driving me to or from school because they felt bad that I had to walk even though I never complained about walking (I liked it!).  I know they were just being thoughtful and kind, but it sometimes seemed like they were actually uncomfortable thinking of someone walking a few short blocks.

One of the few persons I know who is able to drive but prefers to walk a lot is my sister-in-law, who grew up in Europe where walking was a part of daily life.  She’s the only person who used to brave the 1.5 mile walk to the Plainfield library with our kids and me back when we were at our old house.

I’m hoping that with the rise in emerging urban design movements like “new urbanism” and sites such as walkscore.com, community planners will build more suburban neighborhoods within walking distance to more places (some friends were recently laughing sadly when they saw that their house has a “walkscore” of 3!)

But even if there’s only one place (i.e. a park, friend’s house, drugstore, etc.) to walk to where you currently live, here are ten reasons to walk instead of drive there:

1.  Better for the environment (What’s that you say?  You drive a Prius?  Believe it or not, your legs leave an even tinier footprint on this earth than even your Prius!  Preaching to my husband here…)

2.  Save money (gas, wear and tear….. it all adds up in this economy!)

3.  Good Exercise (and, unlike the treadmill in your basement, the scenery actually changes!)

4.  Fresh Air for Your Kids (Being a busy mom, it’s sometimes tough to fit in outside playtime, so if you’re walking somewhere AND they’re getting fresh air, win-win!)

5.  More face-to-face interaction for the kids (mine face each other in the wagon and play games– yeah I know this can backfire occasionally, but that just teaches them conflict management!)

6.  Nature vs. Screen-time inside a car (Okay, so I know not all people who cart their kids around all day in the car have built-in dvd players, but I tend to resort to handing my kids my iPhone way less when we’re outside than when we’re in the car.)

7.  Time with Friends (Most families these days aren’t able to all fit in a car together on the way to outings, but if you make plans to walk somewhere w/ a friend– whether to the park, farmer’s market, or another neighbor’s house, you have time to chat in person while you walk!)

8.  Opportunities to meet new people (you can’t tell me that a wagon decked out like a princess float is not a conversation-starter!)

9.  Give your town/neighborhood a friendly look (there’s nothing that says “hey, this is a safe and fun place to be” more than people out walking, especially with kids.)

10.  No chance of getting a speeding ticket (I love to brag that I’ve never gotten pulled over!)

BONUS REASON: Less Stress (Okay, this one may be the most debatable because it’s situational and could be stressful if you’re late walking somewhere important and it takes 3 times as long, HOWEVER, everyone I know who commutes to work comments on how stressful it can be…..just think of road rage and not having to deal with other annoying drivers!)

NOTE:  Yes, I live in the United States and realize that very few people live in areas where they can walk to all the places they need to go in the course of a day.  But I have also lived in the ‘burbs long enough to see a lot of missed walking opportunities.  How many people live in the exact same neighborhood as friends but end up driving to play dates at their neighbors’ houses I know, I know — they may have somewhere to be right after the play date.  If you’re one of those people, maybe try adjusting your schedule to leave a little earlier or later once in awhile.  Your body, pocketbook, earth, kids, mind, etc. will thank you!

Mama On the Move

Here’s a glimpse of how the girls and I wheel around town in all seasons:

Yup, this is our version of a double stroller– it keeps us moving nice and slow, and people have a lot of grace for us since it’s clearly a challenging task! Looking into used sit-and-stand strollers on craigslist…..
To keep out the rain and hot sun, this roof does the job!
For cold and windy weather, there’s nothing like a fleece blanket! (note: last year I carted the kids to a friends house on a sled in the snow….looking into a sleigh or double-intertube this year!
This netting (formerly Lucy’s fancy princess canopy that collected too much dust over her bed!) is perfect for keeping out all kinds of bugs during mosquito season!
For those perfect, convertible-worthy days where the sun isn’t too hot and the wind is a breezy bliss! (2 or 3 days out of the year in Chicago!)