To end our mini-series on “parenting”, we’d like to offer a chance for our readers to win a free reading assistance software, Kurzweil 1000 version 7, $1000 value (this version was released several years ago, but can be upgraded to a newer version if desired). The software is new, in package, and still shrink wrapped.

Here’s the challenge… this is for either parents of kids/adults with visual impairments or kids/adults with visual impairments to answer:

Kids/Adults:  Share a story/memory about how well a parent or teacher handled a situation involving your vision.

or

parents:  Share a favorite memory of how your child handled their vision challenges with humor, wisdom, a positive outlook, etc.

Email your submission to joy@doublevisionblog.com by Friday, March 2nd.  Submissions can be brief or detailed– it’s up to you!

We will post our favorite one as well as a runner-up to doublevision and will send the winner this software.

Friends and I have often joked about what current parental mishap will surely send our kids to therapy someday.  I usually laugh and then cringe inside because there are just so many, many moments of parenting– and they all add up to just one childhood.  Which moments will my girls remember as adults?  The ones where I am frustrated and nagging or the ones where we are snuggling up reading a good book together?  As a parent, I of course want my kids to have the best possible memories of their childhood,  and I feel angst when my 5-year-old says things like “No one ever plays with me” after my husband and I have spent the whole day hanging out with her but have taken a 20-minute break to do housework.
It’s interesting what our minds choose to hold on to– out of the 1,440 minutes in a day, sometimes only two  of those minutes will filter down and make it into the “keep this” category.  While I sometimes wish I could program my kids’ filter system to hang on to all the good memories and throw out the bad, I of course know that I can only help them learn how to process the harder memories and perhaps help them remember aspects of the not-so-fun memories that are redeeming.  My mom, while not on active parental duty anymore, still helps me do that on occasion.
A couple months ago I received a nice comment on our blog from a mother, Amy, whose 10-year-old son has RP and responded very positively after being told his prognosis. Amy writes:
“When we explained everything to him that the retina specialist told us, his response was, ‘Well, Mommy, I guess you’ll have to be my personal chauffeur for life.’ He has such a positive, optimistic attitude and view on life in general, so he is a great example for my husband and I when we start to feel sorry for him.”
I lamented to my mom that I wish I’d had that kind of personality as a child.  My mom replied that she remembers me as that kind of child and went on to say that after realizing I couldn’t get my license at 16, I said, “That’s okay, mom.  I have a great family, a nice boyfriend and get good grades in school.  I couldn’t ask for much more–I have it pretty good.”  Now, whether that was a cover to mask my true feelings at the time or whether I really meant it, I’m not exactly sure.  But it’s strange how when I think of that day– the one where the driver’s ed instructor spoke in low tones to my parents in our front entryway- I remember it differently.  I remember fleeing to the neighbor’s house where I was housesitting.  I remember changing their cat’s litter box with tears streaming down my face and sinking onto their red velvet sofa in sobs of disappointment and self-pity.  But my mom’s recollection of this event puts a slightly new spin on that difficult day in my mind and makes me feel kind of….. strong.

Amy just shared another snippet about her son’s day-to-day dealings with RP that said:
 “I thought about your blog the other day when Nathan came home from school and said he got hit in the face in gym class three times with basketballs. His glasses were broken and he had a substitute teacher that day, so he walked around with no glasses on with his friends sticking close by him. His one friend even had Nathan dictate his answers to him and wrote it out for him as the boxes were to small for Nathan to see and the teacher wasn’t there. Nathan, Mr. Positivity, came home and had his first meltdown over his vision, saying it was the worst day ever. Poor guy! He was so proud of himself, though, that he held it all together until he got home that day!”
I really loved how she ended the story with him being proud of himself for holding it together until he got home because that’s the piece her son may not remember when thinking back on his difficult day– that he was strong.  And she can remind him of that.  And I think that will make a difference in how he views himself.  

And that’s something we can all do as parents – whether our kids have RP or not- help them see that little piece of their story that seems hidden to them.  And hopefully someday they’ll help us do the same if we’re beating ourselves up about what we could have done differently as parents (after they’re done complaining about us in therapy, that is!).  

So I first started working on this post 2 weeks ago, but was only one sentence into it when my 5-year-old woke up vomiting.  An hour later, my 22-month-old began vomiting, and thus began an entire night of fun.  The next morning I got sick, and though it was a quick bug, I haven’t been able to get back in the swing of things since.  It’s these kind of dreaded times as a parent that give me a newfound respect for my own parents and the long nights they spent cradling sick children and cleaning up puke.  I don’t think I ever fully appreciated or even thought of these moments until I became a parent.

When my daughter turned 5 last March, I remember the thought dawning on me that she’s the age I was when I was diagnosed with RP.  While I had always grown up thinking about how RP affected me personally, I had never stopped to think about it from my parents’ perspective.  And based on the twinge of pain I feel even when watching her get a shot at the doctor’s, I had a hard time imagining being told that my little girl was losing her eyesight.  I have no idea how I would react.

I remember my dad taking Jenelle and I to an eye specialist at age 5, trying to follow the big bird figurine that the doctor moved from side to side, and having countless tests performed.  As I recall, my sister and I were not the most compliant little patients, and I can only now imagine what a stressful day that must have been for my father by himself (have you ever tried to place hard contacts in a little kid’s eyes before? Two kids?)).  At the time, my mom was pregnant with girl #4 and chasing our 2-year-old sister around, and I’m sure the news my dad brought home after the visit was overwhelming for my mom.  I have no idea how the conversation went or the thoughts that went through my mom’s head as my dad relayed the news from the doctor.

I think Jenelle and I, both now parents, began to wonder what it was like for my parents.  So when we asked them to write a post from their perspective, I think that we were half-way expecting this long, emotional recollection.  And we were both admittedly disappointed when we first read our mom’s article with educational advice to parents.  While her post was probably much more helpful to parents of kids with RP (which was, in fairness to my mom, the whole point!), we selfishly wanted a new glimpse into our childhood.  We wanted to know what I guess every adult kid wants to know: “What were you thinking and feeling as you raised me?  And what did you think of me?”  (okay, I don’t know if every adult wants to know that, but I did.)

The telephone conversations following my mom’s blog entry were difficult– I kept beating around the bush, trying to get more out of my mom– pressing her for more than she was able to say.  I remember my mom’s voice suddenly breaking in one of those phone conversations and her saying, “I feel like you’re wanting me to feel something that I didn’t feel or that I somehow failed you as a parent.”  I faltered for words, clumsily trying to reassure my mom that she was a wonderful parent (something she is always doing for me– encouraging me as a mom– and here I was stumbling to do the same.)  The conversation ended fine, but I was still bothered by it over the next few days.  And my mom was too.  She ended up writing me an e-mail that really helped bring closure to our conversation, and here are some excerpts:

“When I said that I didn’t remember any disappointment, I meant for myself as a parent; I really never felt like I had been dealt a bad hand of cards.  I choose to see the possibilities, not the disabilities.  Yet, now that more blogs are being written and the memory locks are unlocked, I do remember many times of frustration, sadness, and even fear.  I just didn’t want to admit it in my mind.  I have hidden them so well all these years.  It is a protective mode as a parent; protective of my emotions and protective and respectful of your process.  It was difficult to talk to you both about it because you avoided it and were upset whenever we brought up anything to do with your vision impairment.   Dad and I realize now that we should have and could have pushed harder to talk about it.   I never wanted anything we said to convey overprotection, but fear did drive a lot of my actions or comments.   I wanted all of life’s challenges and excitements for you, but feared them and then hid those feelings.   It seems being a parent is also a lot like being an actor.

In your early years I remember wanting you to join in on family or friend volleyball games, Halloween trick-or-treating, and/or other activities, so that you would not feel left out.  We told the family members not to discuss it, just to help you along. Then it turned out to be very difficult for you, but you had fun.  You have a better memory for experiences, but I hope I have conveyed the maternal feelings.

And for all the things we did or did not do to support you in your vision impairment, we are so sorry.  We had no guidance, only scientific talk from the doctor, and misguided learning disability talk from the school people.  We did all that we knew to do, which wasn’t much, but we could have done more, I am sure of that.  I do think you got a great education.  Even without appropriate adaptations you thrived.  College at SPU and further college endeavors was the ‘icing on the cake’ for you.  You are excellent writers and  do many things better than people with complete vision.”

I remember crying as I first read her words, and here I am crying again now as I reread them (if you’ve been following this blog long enough, you probably think of me as the sappy twin.)

Reading her words made me realize how hard we can be on our parents and how I hope my daughters will extend me grace someday when looking back on their childhoods.  Parenting can be difficult and lonely, and we aren’t given a guidebook…. and we all do the best that we can.

I think one of the biggest gifts my mom gave me was actually hiding her fears from me as a child.  I don’t think I would have been as confident or fearless if my mother had been one of those nervous, fearful moms who is always doting.  Yes, because I”m a big proponent of counseling, I think that family counseling to help bring out at least some of these emotions as a family growing up would have been helpful, and I would recommend that to any family dealing with RP.  But just allowing your kids– RP or not– to experience life fully, uninhibited by worry and fear, will allow them to do their best.  And we’re all trying to do the best we can– as parents, kids, adult kids….. so a little grace here and there can also go a long way.