Year: 2012

Placing First Things First: Part 1– the intentions

I want to freeze time.  To capture the light blonde and brown tendrils that fly all wispy as my daughters dance around the kitchen putting on “dinner entertainment” for daddy . He eats and laughs, more amused by these two under 4 ft. tall than he probably ever imagined he’d be.  I want to put their little sing-song voices in my leftover packing boxes with heavy packing tape so that they will never escape me.  I want these little years– the ones when they want to play all day – and beg me to stop doing laundry so they can just be with me for 5 minutes — to last.

As I was trudging up the stairs exhausted the other night, I tried to recap in my mind all the things I had accomplished during the day.  I became a little agitated because I couldn’t think of many things I had crossed off my growing to-do list.  But then I remembered the important 2 hours I’d spent crawling on colored carpet squares.

The girls and I had gone with Ben to the church where he works because I was meeting some friends there, and since we needed to wait for his meetings to end before leaving, we spent the whole day there.

We went into the K-5 room which has these fun, colorful carpet circles and began inventing all different kinds of games.  I was a chomping alligator in hot lava while they were toads hopping from circle to circle.  I was the leader of a secret “flower” club up on the little play balcony.  We were robots that could only jump to certain colored islands.

We ran and laughed and played till we were slap-happy with fatigue.  And while those 2 hours of fun were clearly not on my list of things that really needed to get done, I went to bed feeling satisfied that night.

I’ve noticed that since living in a walkable area and having the ability to run a lot more of the errands during the day, my days are sometimes packed.  I also took on a part-time job scoring essays from home this month, so the to-do lists seem to be multiplying.

I ended up needing to create a separate list of things entitled “important things”, and I try to make sure that even if some of the things on my regular to-do lists don’t get accomplished, I at least do the important things each week.

Most of the important things involve people, and one of those is my 82-year-old grandmother who lives  3 blocks away and recently was told to stop driving.  This a little more difficult for her because she doesn’t have the strength of a 33-year-old to walk all over town like I do.  So one of the new “important things” on my list each week is to take the girls to visit her– not out of obligation or anything, but because I value time with her and know it helps lighten her day at a difficult time in her life.

Sometimes this means grabbing a 45-minute window of time, leaving the kitchen a mess or a chore undone, to go spend time with her. And while I wasn’t raised to be okay leaving a mess, I think sometimes in order to put people first in our lives– not our houses or material things– it’s necessary.  Obviously, there comes a time when things really do need to get cleaned up, and I don’t want us living in a disgusting mess or anything, but loosening our reigns on how perfect the house should look at all times can open up space for our relationships to grow.

When I’m 82-years old like my grandma, I hope that my phrase of satisfaction reads something like this:  “My life is full because I put first things first in my life.  I put relationships and people in front of my stuff.” as opposed to, “Wow, I have had a perfectly clean house for the past 82 years– how full and satisfying life is.”

So this post used to end right here, and there was no “part 1” in the title.  That was a week ago when I thought that this was the easiest, simplest concept in the world…… when  sunny strolls to grandma’s house trumped dirty dishes in the sink (okay, they still totally do, only I’ve realized that sometimes extra complications arise that challenge our ideals…. and that’s why there’s a part 2, so stay tuned if you can relate!)

 

Moving Forward: And All These Privileges

It’s been a rough few months.  Our entire family took turns suffering from everything from the stomach flu to pneumonia, I went through a miscarriage and bad reaction to anesthesia, and we moved from my in-laws’ house (where we lived for 8 months.) in the middle of it all.  Oh, and did I mention that my husband is in ministry? . . . And given that this all was happening right before Easter, his schedule was pretty crazy.

So this move — though it occurred at a difficult time — was a move forward.  If you’re wondering how this relates to RP, I’ll give you a little of the back-story on why we chose to Continue reading “Moving Forward: And All These Privileges” →

Contest Winner!

We are excited to share our contest winner, Tracey Westphal’s, poignant and inspiring piece with you.  Tracey has a very interesting perspective, as both her father and twin sons are affected by RP.  As visually-impaired parents, it’s often difficult to think about how our kids view us, but reading Tracey’s memories of her father is definitely uplifting.  And reading her insights on raising children with RP is encouraging for any parents struggling to find the balance between pain/worry and knowing your kids will be okay despite their RP.  Thank you, Tracey, for your honest and hopeful account.

 

 

 

 

Learning Lessons

Growing up with a “legally blind” father may seem like a unique experience but for me and my sister, it was our normal.  Dad took the bus to work every day.  As little girls, we would run to the bus stop to greet him at day’s end.  Our life wasn’t like everyone else’s.  Life was a little different.  My mom was the only driver.  Plus, we weren’t allowed on the grass at all once Dad started the mower.  Still, we stood on the wooden deck and directed him with our shouts when he didn’t mow in straight lines and left “Mohawks” in the grass.  I never really viewed my dad as a “blind guy”.  He was just my dad.  Oh, and by the way, he was blind.

I loved the stories he would tell.  At 15 years old, he had decided not to take driver’s training because he knew he would never pass the vision test.  Apparently, his friends talked him into taking the class anyway and he just turned the wheel and braked when they told him.  “Dad, I can’t believe they let you do that!”

“Well,” he would answer with a smile, “I did pass the class.  They didn’t give you the vision test until after the training. ”  I never thought how sad his teenage heart must have been that he could never drive.  He never mentioned it.

Dad and I would walk to the nearby mall for a “date with dad” and buy dessert.  While shopping, he would sit patiently outside the dressing room for hours while his daughters paraded around in whatever we wanted to try on, usually the fancy gowns people bought for cruises.  “How do I look, Dad? This one is blue.”  “You look beautiful,” he would say.  And even though we both knew he couldn’t really see me, my heart would still fill with happiness and I would feel beautiful and very loved by my Daddy.

But now, I am the grown up.  I am the mom, and my little boys were diagnosed with that same disease last year.  We all talked about it at the kitchen table so my twins are aware of their condition.  Their older siblings often help them find things that fall on the floor or call to them when we are in a new environment.

But I have those mommy moments.  Last September, Marcus ran right into a picnic table bench full speed.  I knew he had seen the table but the bench was outside of his field of vision.  He looked down in surprise after the collision.  I headed over to comfort him but a bruised knee didn’t matter to this active boy.  He just brushed himself off and kept following his older brother’s call.  Yet, my mommy eyes welled up with tears.  I don’t want this for my boys!  My heart seemed to scream.  It doesn’t matter now, my mind reasoned back, and you’ve got to make the best of it.

This pattern still continues as I listen to bedtime prayers, “and dear God, pretty please have a doctor learn how to fix my refinit retinit pigmona!  Please, please”.  My eyes blink back the tears as my heart grieves and my brain says, “Never let them see you cry; be brave and strong for your boys, tell them what they can do, and let them try anything.  Remind them God has a plan.”

Not every day is like that.  My Lucas and I had an early morning cuddle, “Mama, will I grow up to be like blind like ‘Papa’?”

“Maybe,” I answer truthfully, “maybe not.”

“Well, that wouldn’t be so bad,” he answers, “Papa is very strong, and he can even listen to the Bible on tape!”

I am so grateful for an active Dad whom I have never seen wallow about his blindness, but simply accept it and move on.  I don’t think the words, “I can’t” are even in his vocabulary.  As a young man, he exercised as an avid runner, eventually using a sighted guide to finish his races.  Now, in his older years, he loves to snowshoe and sled with my kids, spending hours outside with them until they are all redfaced and chilled.  He has an exercise room in his basement and the kids love to listen to his radio and exercise with their Papa.  It’s even entertaining to me to hear my daughter say, “Oh, my Papa taught me how to hula-hoop, but his record is 392 times!  I haven’t beat it yet, but I will.”

So while my mommy grief threatens, my mommy hope is proving stronger.  These happy boys who I love so much will someday grow into men.  What their sight will be then we do not know, but I hope and pray their vision for life will be strong, just like my Dad’s.

 

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Honorable Mention:  Jean Porter (note:  With the driving issue being such a difficult one, this story definitely resonates with any person dealing with the hard, disappointing facts of vision loss.  Thank you, Jean, for sharing your son’s realization and acceptance.)

From a very young age my son, David would comment when we were out in the car, that when he was old enough he would help me out with the driving.

At the time I was divorced with 4 small children and each time he mentioned it I would wonder how on earth I was going to tell him that his eyesight was not good enough to drive.

When he was about 9/10 years old we were heading home one evening, there was just the two of us in the car and he suddenly asked where we were. I told him where we were and he just said “Mum, they won’t let me drive, will they?” I said “No David, I’m sorry they won’t.”

He never mentioned helping me out with the driving again and I breathed a sigh of relief knowing that he realised himself that his sight was too poor to drive and I didn’t have to tell him.

He’s 21 now and recently we talked about his vision and finding a cure for Retinitis Pigmentosa. He told me that he would be happy if someone could stop the deterioration so that his vision wouldn’t get any worse, but he biggest regret is that he would never be able to drive!

 

 

 

Rare Disease Day

In case you haven’t heard, today is not just Leap Day – it’s also Rare Disease Day.  “Alone We Are Rare, Together We Are Strong” is the tagline for this campaign, and I think it’s a brilliant idea.  Public awareness can help living with diseases like RP a lot easier.  For example, I recently heard about a woman with RP and her guide dog being asked to leave a restaurant because the owner saw her reading the menu.  He didn’t believe that the guide dog was necessary since this woman could see enough to read.  He had obviously never heard of RP or being partially-sighted.  Many of these diseases, including RP, are rarely included in mainstream media, so it’s no wonder that the public remains ignorant of these diseases. “Most of the conditions the Foundation targets are considered “rare” because they affect less than 200,000 Americans and stem from defects in nearly 200 different genes. According to the National Institutes of Health (NIH), there are nearly 7,000 rare diseases affecting approximately 30 million (or 1 in 10) Americans” www.blindness.org

I wish that I could say that having RP has helped me not to be as ignorant as the previously mentioned restaurant owner.  However, a few years ago I had an experience that showed me how insensitive I can be.  When I worked for a consulting firm in Seattle, one of my main responsibilities was planning social events for the consultants.  I remember feeling slighted because one of my colleagues always left the events early and never brought her husband to any of the activities I planned – she always had a different lame-sounding excuse as to why he couldn’t join us.  But after I got to know her better, I learned that her husband has early on-set Parkinson’s disease, and was too embarrassed about it to come to the events, and that she frequently had to leave events early because she needed to get home to help care for him.  I remember feeling so ashamed of myself for assuming that she was just a flake and not giving her the benefit of the doubt.  I know this is something that we’re all guilty of to some degree.

My husband and I were just chatting with some friends over brunch on Sunday about how RP has affected our lives and my husband shared some really good insight.  He said that my RP has caused him to give others the benefit of the doubt more.  If someone bumps into him on the street, he doesn’t automatically think, “What an inconsiderate jerk!” or “Watch it buddy!”.  Instead, he thinks to himself, “Maybe there is a reason that person accidentally bumped into me that I don’t know about”.  You really never know what someone else is going through, so why not have a little extra grace for that stranger, neighbor, co-worker, family member, friend, etc. that does something that you find a little bit odd or even rude.  A little compassion goes a long way.

In addition to public awareness, Rare Disease Day aims to encourage politicians to increase funding to the National Institutes of Health and the medical research it conducts.  Join me in participating in Rare Disease Day by signing this petition now.

Accessibility Software Giveaway (first-ever doublevisionblog contest!)

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.

How to Not Mess Up Your Kids (too badly)

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!).  

What We Realize About Our Parents When We Become Parents

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.

Advice: From Parent to Parent

Yes, I am still alive and well in case you’re wondering why I haven’t posted in quite awhile.  I am going to blame it on this busy season of parties, baking, shopping, sledding, and sneezing.  As if it’s not bad enough that I’ve taken so long to post, I am not even writing this post by myself.  This one has been in the making for quite some time, and it is a collaborative effort between Joy, myself, and our mom.

After receiving a lot of great comments and emails from parents of children with RP, Joy and I decided to create some blog posts that offer advice and encouragement to these parents and their children.  We started by asking our parents for their perspective, which sparked a number of interesting discussions and emails.  This process was really eye-opening for all of us, but more challenging than we expected.  I think any time a family takes a trip down memory lane, it is normal to have different memories of the same events.  Not to mention the fact that children process life events very differently from adults.

Now that Joy and I have children of our own, we are well aware of the fact that kids do not come with guidebooks.  And while this post is intended to offer advice for parents who have children affected by RP, we recognize that each child is unique.  There may be suggestions that are effective for one child, and yet not useful to another child.  Especially given the spectrum of RP.

With that said, the biggest piece of advice we can offer you is to have on-going open communication wtih your child regarding their vision.  While that might seem simple and easy to some, it can actually be a challenging process.  Based on information we’ve read and experienced, children who grow up with disabilities or anything that makes them feel different than other kids, often feel a natural sense of shame and want to hide it.

As Joy and I have expressed in this blog, we often felt secretive about RP.  Looking back, we appreciate the fact that our extended family didn’t make a big deal about our vision and just helped us (which we know now was what our parents sincerely requested of them),  But it was talked about so little, that when it did come up, we felt awkward because we didn’t know how to respond.  Even the sweet innocent comment of a younger cousin, “I’m sorry about your eyes” felt devastating to hear as children.

Our mother, Judy Derpack, has some more advice, relating specifically to education.  In addition to being a parent of two children with RP, Judy has a degree in Early Childhood Education and many years of experience as both a classroom teacher and parent-educator:

“Here’s what I have gleaned and learned (but didn’t always do well): In all situations, look for adaptations.  Your child does not want to be left out of anything (probably with the exception of PE class!)   Be creative.  Find a way to include them.  Make your family, friends, and educational community aware of how they can help your child.  Follow through to make sure adaptations are actually being followed. Lastly, and most important, YOU are your child’s best advocate!  Don’t let pride, ignorance, or ineptness keep you from advocating for your child.  Use your emotions and education to guide you as you advocate for your child.  I am so darn proud of my daughters that I can’t even find the words to describe the feeling.”

Joy and I would like to tag on to our mom’s words of wisdom.  Please also make sure to actually sit down and ask your child what they need.  Some of the adaptations we received in school were really not helpful to us at all.  RP is very different from many other visual impairments, so doing things like blowing up worksheets can actually make it worse for students with RP.  Especially at the beginning stages of RP, there may be very few adaptations that your child really needs, besides the awareness of the teachers.  Forcing adaptations that aren’t helpful to your child can make it even harder on your child (i.e. pushing books on tape when they really are fine reading on their own.)

Also, along with being included in the classroom, your child doesn’t want to stand out or be singled out, so find ways for the adaptations to be seamless and natural– not obvious and forced.  This just adds stress to what is probably already a challenging school environment. Always check in with your child to see what is actually going on in the classroom and beyond.  Teach them to be their own confident advocate so that you don’t have to do the talking for them.  One of my biggest pet peaves to this day is when someone asks another person to assist me when I am standing right there.

As previously mentioned, this is the first post in what will be a series of blog entries about raising children with RP.  We hope that it is helpful for families affected by RP, and we welcome your questions and comments.  We also want to acknowledge our parents for their role in creating this series of posts.  We know that sharing these feelings and revisiting these memories that have been tucked away was not easy, so Joy and I really appreciate their willingness to share with such humility and retrospect.