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!

 

 

 

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.