Conversations between Marley and me about bblindness 11/14/18

I sometimes say that I graciously shared my eye condition with my daughter. I have not written much about our Marley and me story lately. This one will be short. It actually took me a few days to share with my husband, and now I’m sharing it with you.

A few days ago, Marley randomly asked me, “Mom, are you going to lose all of your eyesight and be totally blind One day?”

I answered to her, “I don’t know baby. I do know that I have lost a lot of eyesight since I was your age. You can see a whole lot more than mommy can. It’s possible that I could lose all of it one day.”

Marley thinks about my answer for a quick minute and then she asks me, “Mom, am I going to lose all of my eyesight and be totally blind one day?”

My honest answer to her, “well baby, that’s a possibility.”

Just like that, my beautiful girl takes my response in stride, and continues on. I love that I am able to have these conversations with her. I love that she is able to ask me anything that may cross her mind. I hope this continues Ahn in our relationship as she grows.

Advertisements

Race Weekend has arrived and I am Filled With Gratitude

the weekend I’ve been working towards is here!

in this photo, I have just picked up my race packet and I’m holding my race number.

Did you know there is an app where you can follow me on my run? Download the Rock’n’Roll Marathon Series app, and track my progress.

I am number 3711.

Today, I have the opportunity to be 1 of 4 athletes interviewed on a panel during the Las Vegas rock and roll marathon series press conference at the race expo. After the press conference, I was asked to do a one on one Facebook live interview. You can watch these interviews on Blind Mom in the Burbs’s Facebook page Where I have shared them.

Currently, I am hanging out with my daughter watching snow white while we wait for some friends to arrive from Salt Lake City to hang out for race weekend.

Tomorrow, I am hosting a pasta carb loading dinner as a thank you for everybody who has supported me throughout my training.

Sunday, we run!!!!!!!

I cannot express my gratitude to everybody who has been a part of this journey. I cannot express enough thanks for all the support I have been given. This has truly been a team effort. I will be channeling all of you, your love, your strength, your support to make it through that notorious marathon wall at mile 20, and to get me across the finish line. If there are tears, they will be tears of gratitude mixed with joy.

Lastly, to my guide Kim, who will unfortunately not be running with us because of a broken foot. Thank you 1 million times over for all of your hours and miles you have contributed to this training.

Please excuse any typos I may have neglected to edit out. This post is being published from the WordPress app on my phone.

26 Ways of Being During a 26.2 Mile Run

 

 

It was almost a whole year ago when my phone rang and some guy by the name of John was calling me in search of blind runners.  He had read an article about a blind runner who did the New York Marathon with the assistance of a sighted guide from Achilles International.  John wanted to bring Achilles to Las Vegas, and he happened to call someone that morning who wanted to get out and run.

photo of John and I after our first run on 11:30:17

On November 30, 2017, we met up at a nearby park and Achilles Las Vegas hit the ground running.  That first morning, we walked /jogged/ran about 2 miles.  He asked me if I had a running goal.  I told him, “I want to run the Las Vegas Rock and Roll Marathon.”

Today is November 8, 2018, and in 3 days, I will be running my first marathon.

Wow! I seriously just teared up writing that last sentence.

It has been quite a year.

From running the Resolution 5k Run on New Year’s Eve with a sea of yellow Achilles Las Vegas supporters, my brother, sister-in-law and 2 nieces running it, and our family waiting at the finish line.

To Marley running her first 5k with John and I, along with other Achilles volunteers at the Vegas Cares About Rare Kids Run.

To my first half marathon on the first hot day of the year, where I finished in 2:49 at the Recycle Run.

To a spur of the moment run with my Achilles crew in the beginning of summer at the Elemental 5K.

To beginning my official 16 week marathon training in the end of July, where we had to run at the butt-crack of dawn since the temperature rose to above 100 as soon as the first ray of sunlight rose.

To challenging the low expectations of a race director who did not think it was safe for a blind runner to do the Red Rock Half Marathon, where I not only safely ran with my guides and our tether of choice, but I set a PR of 26 minutes, finishing in 2:23, and 2 other blind runners ran their first 10K races.

To experiencing foot pain and developing Plantar Fasciitis three weeks out from race day.

To catching the crud the kids brought home from school 6 days from race day, which I refuse to believe is strep throat and battled with my holistic hippy magic and have almost completely kicked out of my system.

To waking up feeling good after 3 days of feeling like crap, ready to get out of a nice 3 mile run around the hood and finding that my streets are being resurfaced today.  Since I resort to running in the middle of the streets in my tiny gated community, because running on the sidewalks means running into poles and tree branches.

I’m choosing to believe all of it is part of the master plan to making sure I get across that finish line on Sunday night.  I was meant to rest my feet and not push too hard these last few weeks.  I am meant to rest my body and conserve energy these last few days.  With the time and training I have put in, I am ready to show up at the start line ready to smash my first marathon.

 

As I run those 26.2 miles, I’ll be counting the mile markers with these 26 ways of being I strive to live by.

  1. Accountable
  2. Brave
  3. Compassionate
  4. Determined
  5. Energized
  6. Fun
  7. Grateful
  8. Healthy
  9. Intuitive
  10. Joyful
  11. Kind
  12. Loving
  13. Moving
  14. Nurturing
  15. Objective
  16. Present
  17. Quiet
  18. Resourceful
  19. Savvy
  20. Trustworthy
  21. Unwavering
  22. Valued
  23. Wholehearted
  24. Exuberant
  25. Youthful
  26. Zany

Whether you are running a marathon, walking the kids to the bus, walking the dog, or strolling the suburbs, city streets, or aisles of Target, remember that it’s you who gets to choose your way of being.  Whatever you choose, choose to smile.

 

The Landscape of Life

I sit here in bed, wrapped in gratitude, as I reflect on how beautiful life is.  The landscape has not always been a picture perfect one.  However, the most beautiful landscapes are not the smooth ones.  The most aw-inspiring landscapes are the ones composed of canyons, peaks, and valleys.  My road of life has taken me up, down, around, and around…

October flew by in the blink of an eye.  Along with orchestrating the 2018 NFB of Nevada State Convention, teaching Braille once a week, assisted with coaching cross country twice a week, running five days a week, traveling out of town twice, maintaining a well balanced diet, clean house, and happy kids.  I deserved all that wine and candy I consumed last night.

People ask me all the time how I manage to do all I do.  Simple answer is, “I love what I do, and I do what I love.”  I also have an incredibly loving supportive husband who puts up with my endless passions.  He may not be cheering loudly on the megaphones, but he’s always there behind the scenes taking care of business.  I could not have asked for a better partner to travel through life with.  Dancing to the beat of his own drum, coloring outside the lines, and choosing to fit in no one else’s box, that’s how the Rupp family rolls.

I invite you to hop on over to The Seed Project, hubby’s blog, check out some amazing landscape photography and thought provoking pieces on mindfulness, and challenge you to be willing to step out of your comfort zone, and dance like there’s no one watching.

hubby and I with a waterfall behind us, This photo was taken on our 14 mile hike day in Big Basin State Park.

hubby and I with a waterfall behind us, This photo was taken on our 14 mile hike day in Big Basin State Park.

 

IEP Revision Day

IEP revision day, and this popped up in my Facebook memories. We’ve been advocating since 2014, this post was written by Aaron Rupp in 2015, and I could not be more grateful for the team assembled around the conference room this morning. However, my heart goes out to all of those students out there who don’t have parents who are on top of advocating for them, the students who have been written off or who have slipped through the cracks. My heart goes out to the parents who are fighting the fight, battling IEP battle after IEP battle, especially at the beginning of every year where it feels like we are starting from scratch to get accommodations that are blind children are entitled to receive. My heart goes out to the good teachers who are completely stretched thin. Wouldn’t it be nice if we could just start the school year knowing that everything will work out, that our kids will get their materials in the format they need, on time, and not have to deal with inaccessible programs and standardized test, low expectations, bullying, and an education system that needs a serious overhaul.

(Aaron Rupp, September 4, 2015)

Sitting in this chair, my heart is pounding. Seriously pounding, to the point that I have to consciously focus on breathing to stay calm to be able to conduct myself and stay focused at this critical moment. But the pounding is almost all I hear and feel..,

At the table with me is Terri Rupp (my wife) and Marley’s (my daughter) educational “team”. And sitting across the table from me is the school district’s cane travel instructor, discounting me and my wife, every time we speak.

The discussion surrounds the selection of which cane Marley is to use, we want the longer, lighter white cane, while she feels that a much shorter, 3x heavier with a que ball end cane is the “best choice”. Every time we speak about what the white cane means, or mention the philosophy of advocacy and higher expectations/ standards we live by and expect for ourselves, including Marley, a look of sheer disgust smears across this teachers face, followed by a heavy roll of the eyes and pulling of her brows as high as she can, finishing off with a sarcastic smile to the others (Marley’s principle, kindergarten teacher, low vision teacher and special services coordinator) CLEARLY saying without using words, “who the fuck do you think you are to make decisions for your daughter, & I can’t believe we’re wasting our time listening to his shit folks”.

The words she IS using is, “what training and credentials do you have in orientation & mobility (O&M)” (to have a say in the course of your daughters independence development). She says, “I have a masters in O&M, and YEARS of experience”, she says, “Marley’s white cane with metal tip is a danger to others”.

I look at these divine and almighty credentials of hers as a hindrance, she has had 6 years of formal training on how a sighted person tells a blind person what’s best for them, and has been teaching sub prime methods that do not encourage confidence nor allows them to navigate through life at equal pace with their peers.

What does the short cane mean to me?

~First of all it is shorter, so instead of picking up on obstacles and landscape variations several feet in front of the user, they discover steps and walls when they are LITERALLY INCHES in front of their toes. It sets foundation for slower, less confident walking, and that is a fact.

~The standard cane is heavier (2-3 times heavier) than her long white cane, with a weighted stub at the end, that is meant to be push/drug, grinding against forward motion with every step, and catches on every crack, rock and twig the user encounters. This does not allow the user, or my daughter, to move freely or on par with their peers, and again, reinforces the foundation of lower expectations and standards. That is a fact.

~Most importantly, the difference SYMBOLICALLY from the short, red ended heavy cane vs the long white cane. The standard cane originates in the UK circa 1921, by James Biggs, who found himself newly blind and painted his walking stick to become more visible. (White cane, Wikipedia.org). The long cane was developed in 1958 by the Iowa chapter of the National Federation of the Blind, designed to “enable us to walk faster without diminishing either safety or grace”(The Nature of Independence by Dr. Kenneth Jernigan, NFB.org) One was created from a “discomfort from the amount of traffic around his home”, and designed for the purpose of “being more visible”. Of its entire development from England in the 20’s, to France in the 30’s and the lions club in America in the 50’s, the main theme from its inception, to its development and adoption into law, is the concept of “visibility”, alerting others of a blind person. In contrast, the long white cane was created from a dissatisfaction for “the short, heavy… type, and we youngsters associated carrying a cane with begging, shuffling along, and being helpless”, and designed for the purpose of “advancing on the road to freedom and independence”(Jernigan). And THOSE are facts…

~In short, one symbolizes “look out, I am a handicapped person, and I can’t get around that good”, while the other symbolizes “look out, I’m a handicapable person, and I’m coming through!”

This lady’s perspective and decisions regarding the training and foundation for Marley, and countless other children, are based on conventional education, and only values input that supports her lower expectation standards. Our perspective and decisions are compassed by a lifetime experience, Terri being blind since childhood, and me having been partnered with her for the past 11 years. Terri as a child went through a system that enforced the negative promotion model of blindness. She learned on a short cane, and Braille was not encouraged. When we got together, she was in college, staying up all night trying to keep up with the required reading with her face pressed down into the book on the table reading at 15-20 words a minute, and walking into light poles & fire hydrants! It wasn’t until she adopted a positive promotion model that she dared to have the audacity to live the life she wanted. She got the PROPER training, and now runs 5k’s, navigates airports solo, is an amazing mom and reads faster than George W. speaks!

Do you think a formal education experience ever landed this teacher in a room of several thousand successful blind people cheering at the top of their lungs in celebration of their independence, or meeting blind doctors, Harvard graduates, Everest climbers and elite triathletes? Probably not, which is why her expectations and view of the blind is unwittingly discriminating, and is exemplified by her insistence on sub prime, and archaic teaching methods.

Cane travel skills are like handwriting skills, am I to expect my 5 year old to be writing in cursive? Of course not, it is a development of fine motor skills that she is working through. I would be unreasonable to expect her to execute impeccable discipline and precision in her cane usage either. But forcing her to use a tool that will not serve her in the future, will slow her down in the present, and set a life trajectory of lowered expectations on a deficiency model, is like forcing her to learn only large bubble letters before she is allowed to learn Braille. No!!! We have high standards for our life, and we expect the same for Marley! I was expecting to be met with a different philosophy and lower expectations for a standard of independence, but

I wasn’t expecting to be met with condescension and disgust.

This is not the first time some stranger in their own ignorance has attacked Marley’s progression. Past actions from the school include refusing Braille, physically taking her cane away and holding her hand instead of letting her run with her classmates.

At what point does life experience have any validity in the face of a “formal education”? My words are worthless because I don’t have a degree in o&m?… What am I supposed to do, get a masters in every aspect of my life to be able to advocate for my daughter? If there is any term I can think of that depicts what my daughter is up against, it is institutionalized discrimination…

#speakingovermewontstopme

It’s time to take what you love, and run with it.

Yesterday, I finished up week 4, making it 1/4 of the way through completion of my marathon training. I’ve had my good run days, and my tough run days. Yesterday’s 10 mile run was a great run day.

I feel pumped, my head is clear to start a purposeful and productive week.

Here’s what week 5 looks like.

Monday, rest

Tuesday, 4 miles

Wednesday, 7 miles

Thursday, rest

Friday, 6 miles

Saturday, 4 miles

Sunday, 13 miles!

What are you waiting for? Time to get up, get out, get active. Time to work on that goal you’ve been thinking about. You don’t have to run a marathon, but you should stop dreaming, and start doing. It’s time to get those creative juices flowing and share your Beautiful self with the world. Your time is now ❤️. Take what you love, and run with it. 🏃🏽‍♂️🏃🏽‍♀️💕✨

#ForTheLoveOfRunning

More hours in the day please

Humpty Dumpty sat on the wall.

Humpty Dumpty had a great fall.

All the kings horses, and all the kings men

Couldn’t put Humpty together again

I’m feeling like Humpty Dumpty. I’m teetering on the edge of a wall. I’ve got so much to do, and I feel like I have so little time to do it in.

You would think that as a stay at home mom with two kids in school full-time that I would have all the time in the world, right?

Wrong!

Can I just have a few extra hours added to my day?

I don’t want to fall off of that wall and come crashing down.

I am not ready to give up any of my extras. However, somethings got to go. Instead of giving something up, I keep finding myself getting excited about more projects, more goals, and more to do’s.

I love goals, calendars, checklists. I love the feeling of completion. I love feeling productive.

What I need, is to find balance. Balancing my passions, and balancing my role as a present and engaged mom.

This means running when my kids are still asleep in the morning, or after they’ve gone to bed at night.

This means getting all my business done as the president of the national Federation of the blind of Nevada while the kids are in school.

This means putting myself out there on social media to promote my blog.

This means finding time in my day to start writing my book.

This means putting in the research for a project my mind is spinning around to empower blind children through the love of running.

This means keeping a clean and tidy house for a slightly OCD husband.

This means, this mom starts her day with a good cup of coffee in the morning and ends it with a Great glass of wine at night.

As I teeter along like Humpty Dumpty, I continue to run and write, as those are the two things that keep me balanced.

What keeps you balanced?

Questions to Fellow Stay at Home Moms

Dear fellow stay at home moms who are also blind, and also to those moms who can see too,

I have one question for you. Well it’s more like two.

What do you find you struggle with most? Your answer does not have to be blindness related or to parenting at all.

What are some things, tricks, tools, techniques you use to help you get over those hurtles?

I’d like to really spark a conversation here.

XOXO,

MamaRupp

Photo of me