Wednesday, February 22, 2017

Retreat Scholarships

Our retreats last year were life changers.  It was amazing to experience with so many remarkable women who are blind.  We are hoping to expand our circle and make these retreats available to more women through scholarships.  If you'd like to learn more:  visit our website at:

More scholarship info is at:

Thank you!!

Wednesday, February 15, 2017

Saturday, February 11, 2017

Love Story. Retinitis Pigmentosa. Look up, move forward

Thirty three years ago on Valentine's Day Steve and I talked about marriage.  A few excerpts from  my book:  Look up, move forward.  my journey of losing vision and finding resilience: On Valentine's Day I told Steve I didn't want to date other people.  He surprised me by responding,  "Does this mean I can't date anyone else?"  My heart sank and I looked at him in shock, hoping he was joking, but he held out.  "Well, I'll have to think about it,"  he said.  I wanted to hide.  He smiled slyly as he took my hand.  "Yeah, I think I can agree to that."  He admitted that he actually hadn't been dating anyone else for months.  He'd already cleared his schedule and had been patiently waiting for me to clear mine.  (Love his sense of humor)

     Steve scheduled a visit to the Merrill Library to request my dad's permission for my hand in marriage.  In this conversation, the two  men I admire and respect the most discussed how they would be there for me in the coming year.  My dad told Steve that he and my mom would always be there to support me, and us, in the journey ahead.  (Love his respect for my parents.)

     Steve had timed my tour so that after a moment near the temple, we could drive off into the sunset, and that's exactly what we did.  (Love his romantic side :).
     As Steve and I pulled up to the Capitol building just after dark, the city lights twinkled below us.  He wanted to start our life together the same way  his parents had begun theirs, and his admiration and respect for them made me love him even more.  We climbed the stone steps and he led me to the third pillar.   He lifted me onto the huge stone base and took my hand.  "Will you marry me?"  There was only one thing for me to say, "I'd love to."   (Love his love and respect for his family, tradition, and always putting me on a pedestal :).

      He calmly listened every time, and then informed me, again that he loved me and that we'd be there for each other, no matter what our future held.  "I'm the luckiest guy to be marrying you,"  he'd say.   (Love his friendship, support, and belief in me.)

     When my fears returned, I borrowed Steve's courage again and again until I gained my own.  

     As I prepared for our wedding, I didn't think much about details like my dress and flowers and decorations.  My biggest concern was how I would navigate the receiving line.  Not only would I be greeting my friends and family, but Steve's friends and family, too.  I wanted very much to do that with confidence and ease.  When I shared this worry with Steve, we came up with a plan.  We would tap my elbow when someone had their hand extended, and I would know to extend my hand, too.  Simple!  Though it was a minor problem we solved in a matter of moments, it was the first of many, many systems and workabouts that we have developed over the years.  (Love our teamwork and creativity.)

     That evening each time Steve tapped my elbow served as a sweet reminder that he was on my team, for always.  

     I love when someone tells me this book is a love story.   

 #LoveStory #Rpjourney #lookupmoveforward

Monday, February 6, 2017

Surrendering into Serenity

(blog post from May 2014)

This is what I am faced with right now in my life's journey. While I'd like it to be different, I must allow myself to face the reality of what is happening -- when you surrender you release attachment to how you feel your life should be and invite yourself to be in the presence of your life exactly as it is. While naturally difficult to do, surrender is an act of courage. Dr. Alan Wolfelt
Picture of the family - all Aggie gradutes now.  I have no idea why the photographer had Kendall 'not quite' sit on Pantera in this picture :). 
 In the spring after my diagnosis actually around this time,  we travelled to UCLA for a consult with a specialist in Retinitis Pigmentosa.  In the gift shop at the UCLA Medical Center was a magnet with the Serenity Prayer. Grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference.  At the time, it didn't mean a lot.  I was engaged and even though I was sitting in a retina specialist's office, blindness seemed far into the future. The message of Surrender began to come much sooner than I anticipated.  After I turned in my driver's license as a young mom,  I felt a heaviness and a sense of being alone.  I recognized that although I had wonderful support, Retinitis Pigmentosa was mine.  I had the choice on how to respond. The last of all human freedoms, the power to choose one own's way given any set of circumstances.  Victor Frankle  To bounce back and have joy in my life, I would need to surrender to the changes/losses that were happening as my vision continued to decline.  I could learn new ways to complete my education.  I could learn new ways to travel independently.  I could learn new ways to manage my home.  I could learn new ways to enjoy the activities that I loved to do. Although the world was going dark for me physically, I could create so much light in my life.  

Now years later looking back; joy, relationships, experiences, lessons learned have come into my life from surrendering to my life which includes Retinitis Pigmentosa. And yes, there are still days when I miss hopping in that car.

Right now I am experiencing a different surrendering.  I love to run.  I have some amazing friends that through the use of a tether are my guides.  I have run a marathon, many half-marathons and 10Ks.  One of my dreams has been to run the Boston Marathon.  I missed the qualification by 12 minutes at our last marathon.  Last year while training for a Marathon to qualify, I broke my foot.  This year we are six weeks out from a marathon.  I am experiencing IT band issues.  Is it time to surrender into serenity?  Not ready to surrender on this one ... searching to make sure I'm doing all I can in the process while trying to be still and listen to what is best.  Surrendering.  Searching.  Serenity. I'm in the space of sadness on this one.  I'll be there for a bit and then will be ready to surrender if that is what is needed.  My head knows there are many new dreams I can create if this one isn't a possibility. 

What has been your experience with surrendering into serenity? 

(**This was a blog post from May 2014.  Thankfully, through lots of work my foot healed, I qualified for Boston and am still running!  Grateful that was not something at this time I have had to surrender ... just times as an injury comes.)

Monday, January 16, 2017

Retreats for women who are blind/visually impaired

I am so thrilled to share our upcoming 2017 retreats for women who are blind and visually impaired.  I am so grateful to my colleagues:  Nicole Wall, a Certified Daring Way Facilitator as well as a LCMHC and Lisa Bradford, LCSW who will take us through this journey.

You can read all the details here:

Retreats for women who are blind/visually impaired

Last year our retreats filled up fast, so don't hesitate to email me with questions:,

Monday, December 12, 2016

"Thriving" with Vision Loss

After a recent invite to talk on this topic again .. sharing a blog post from a few years ago on

Thriving with Retinitis Pigmentosa

Several years ago I had the opportunity to present on the topic Tools for Coping with Retinitis Pigmentosa in Chicago. I felt like I was sharing some positive tools in the adjustment process.   A few minutes into my presentation a woman spoke up and said something that I have always remembered.  I don't want to cope.  That sounds like I am just getting by.  I want to thrive.  I thanked her and wholeheartedly agree and shifted my presentation to thriving tools.

Today Cricket and I went to the Moran Eye Center for an eye exam.  I have incredible support in my home, but chose to go alone to this appointment.  It becomes a looong appointment by the time they do all the work and didn't want Steve to have to take a day off for this -- he has done so many, many times and will do so in the future many times, I'm sure.  I would much rather us be able to take the late afternoon off tomorrow and get on the bike.  Perhaps, that is thriving.

Some thoughts on the appointment today.   I sat in the waiting room with many other people visiting a retina specialist.  Spending all morning together we got to know each other infact, when one patient finished he said good bye to those of us in the waiting area.  I visited with one patient - his first visit just learning he had a degenerative eye disease.  I listened to his story and hopefully offered some hope that he would indeed thrive and continue to enjoy life.  His wife indicated to me -- you seem happy.  Perhaps, that is thriving.  Another woman had a friend that had RP and didn't know much about Guide Dogs - I offered my number to share and told her many stories of the joy of a guide dog.  Perhaps that is thriving.  We wished each other well as we went into our eye exam, back for photographs, over to get a visual field , or an injection.  It seemed we had a sense of understanding of what this journey was like and were cheering each other on.   We were thriving in our own way.  The retina specialist encouraged me to be healthy and active and take my omega-3.  He liked that I was running.  He liked that I was using my iphone when he came in the room :).  I shared some of the unique symptoms that I have been experiencing and he confirmed that is part of RP.  I liked that and felt validated.

The cab picked me up.   He was impressed with Cricket's ability to find the door.   He asked me about my eyes, and I said I had an eye disease called Retinitis Pigmentosa.  He said -- disease -- oh that's bad.  (It was funny because generally I don't use the word disease rather condition and after his reaction I know why!)  He was chatty and soon was telling me about he just had given up on his dreams.  I said - oh that's sad!  I encouraged him to not give up on his dreams!  He said he was here just making the best of each day.  I told him he was resilient.  He liked my word :).   I realized I missed a little bit my days of riding a cab frequently in the city.  As he dropped me off at Gateway in front of the cookie shop for a raspberry cookie I asked him to wait a minute.  Cricket and I ran in (well the best we can run in :) and bought him a raspberry cookie.
Time to crash for a bit after all those bright lights and various drops put in my eyes.  Perhaps it is thriving to also take some down time after an exhausting day :).

I wrote more about this experience in my book:  Look up, move forward.