Joy

Congratulations, Natalie!

We spent the weekend in San Diego celebrating Natalie's graduation -- MBA from USD - Incredible.  What a special, joyful day! Congratulations, Natalie. Special to have all the family together for this great day.

Her grandparents - such incredible support. 

Of course, Cricket was there cheering her on and felt special that the grad stopped down to get a picture with her :)!  No smile from Cricket.  She was in a serious, focused mood all the trip - which was great she needed to be.

Culmination of a Great Day

Our day started bright and early for us arriving at theBYU studio  for a radio interview at 7:20 am. This was a new experience, and we thoroughly enjoyed the experience of sharing along with a puppy raiser the journey of a guide dog. I meant to take my camera so Steve could take a quick picture with us in radio interview mode.

Steve and I enjoyed a little breakfast at one of our favorites - Cornerstone Bakery. I then enjoyed meeting two dear friends since childhood for lunch and chatting. I meant to have my camera to get a picture of us enjoying time together.


Back to the office for some appointments.   Followed by returning home to be greeted by our cute little visitor for the night.

Some of my colleagues attended a mindful seminar today.  It didn't fit in the schedule for me to join them.  It sounded great, however, and had me reflecting on one of my mindful quotes:  

It is just simple attention that allows us to truly listen to the sound of the bird, to see* deeply the glory of an autumn leaf, to touch the heart of another and be touched.  Feldman and Kornfield

(*I would add -- have you touched and felt an autumn leaf)

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 :).

Snippets of Patience. Retinitis Pigmentosa

I recall when I quit driving someone said to me ... wow, you will really get the chance to learn patience.  Thanks :).  So true.  Yes there are some things that I just have to let go of and accept that they are done differently. As I've mentioned, yes I would long to hop in the car and get my list of tasks done. Instead with creativity and patience they happen. Sometimes, a little slower - sometimes things become just not that urgent. Recently a new colleague said wow, you are so patient and easy going. I laughed and told her - you may not have said that 20 years ago :).  Steve pointed out this butterfly to me. I said - I need to go get my iphone to take a picture. I was impressed with the butterfly's patience as he was still there when I got back.

Cricket shows so much patience for me in a day.  She is amazing.  I had mentioned to her good job and that she needed a treat.  She came in by her treat jar and patiently waited.

Not only have I learned more patience through this Retinitis Pigmentosa Journey, but I am sure grateful for all those that are so amazingly patient with me!  

Week Two of our training for our marathon.  Light day:  3 miles this morning.  Good thing as I dropped a 2-liter bottle on my foot and my patient husband iced it and helped me be able to run.  My first thought after it hit and was hurting ... Oh, its got to be better by morning so I can run!  Maybe, I'm not so patient! 

Celebrating.

We had a little get together to celebrate Natalie's graduation (MBA!).    The shrimp was a big hit.  The strawberries were so yummy.   If anyone else is celebrating a 2012 graduation there are more sugar cookies in our freezer.  As usual, I had way too much food!  Thanks to family and friend support.  Congratulations, Natalie!  

Three generation picture with two puppies cheering us on as well!  What do you think?  Is there a resemblance?  

Busy, good weekend.  We were able to get in an awesome 24-mile bike ride, too.   I took a picture, however Steve and I were not in the picture :).

Lots of Snippets of Laughter. Retinitis Pigmentosa

I love to laugh - the kind where you are on the floor because you are laughing so hard. The other day in our breakroom a couple of my colleagues had me at that place. It was hilarious. I took a picture of Cricket eating because this little routine makes me laugh on my early morning run days. She gets fed bright and early when I get up to run. I feed her and then turn off the light so that I'm not disturbing Steve although let's face it -- me banging around, sometimes asking him to help me find something generally is a wake-up call. Back to Cricket :), she will be eating and as I turn the dimmer light to off she stops eating and you can hear a pause so I gradually give her a little light. I know she is able to see again when she starts eating. It makes me giggle that she likes to see her food and that inspite of being a 'hungry' lab she will actually stop eating when the light is off.

There are many things that are pretty funny about living life with Retinitis Pigmentosa. Sometimes you just get yourself into little predicaments and have embarrassing moments. I got the giggles the other day walking back from the market when some kids kept asking their teacher -- is that a blind lady or a blind dog :). Children laugh a lot ... as adults we stop laughing so much. I hope you find much laughter this weekend. We are going out with some friends tomorrow night that guaranteed there will be laughter. I'm braving going to City Creek for the first time tomorrow to meet Natalie for lunch -- there will be laughter.

Snippets of Creativity. Retinitis Pigmentosa.

I stood in my closet this morning wanting to be creative -- would that bright blue top go with my animal print belt, etc :) or was it a little 'off'?  Steve was off to an early morning meeting so didn't have the visual okay.    One evening we practiced using our iphones - facetime that could be used for these types of situations (if he wasn't in a meeting :).   I don't need the whole meeting voting on whether my outfit matches.  So I opted for a green top that I knew was a go.  I am loving my Sanduk shoes that my friend convinced me to get ... so comfy and fun.

I spent years with a 10-2 (how is that for awesome hours?) job while the kids were in school.   My guide dog, Pantera, and I rode the bus to work with two transfers.  It was pretty structured - take the 8:45 bus to get there by 10 (many books were listened to and friends made during those commuting days)  2:10 bus got me home by the time kids were home at 3:30 ready for all the after school activities/evening activities.  I even cooked dinner regularly at that point!  Wednesdays were my day off to volunteer at their schools, clean the house, etc, etc. Those were sweet, structured days.

When someone learns that I didn't drive while my kids were growing up they ask ... how did you do that?  Well it was a team effort - grateful for a awesome dad on the team and much creativity.  We rode the bus often, walked, they took their bikes, and at times even though it isn't easy, we asked friends.  We found creative ways to help and contribute without being able to be the driver.  I used to have a play group for the kids of the moms that were carpooling my kids.  As our kids were older, we paid a driver to help us out as well.

Fast forward to life now.  I work lots of hours - sometimes early morning, sometimes into the evening, every once in a while on a Saturday -- the joys of self-employment and setting your own schedule.  It lends to some flexibility and also some additional creativity on transportation.  This week Kendall has been home and is my driver when he is available.  Awesome.  Most of the time Steve can take me and pick me up from work.   Later start days -creativity comes into play.   Sometimes it means getting there early (which is okay, there is always something to be done), sometimes it means calling a cab, or sometimes it means asking a friend for a ride.

Retinitis Pigmentosa hasn't stopped me from doing something ... it just may mean that I need to get a little more creative on getting from point A to point B, in finding that fun outfit to wear, in finding a way to run,  ... :).

Running:  Today was 3 miles.  We are on our 18-week training plan for the Marathon.  So cool!  Creativity.  I think of my friend that sewed my tether.  So special with great memories.  I think of my two friends who run with me now.  I recognize that because I have had to be creative with Retinitis Pigmentosa I have met many wonderful people and have some great friends.