My little red tether is my anchor in running with my friends. A beautiful guide dog has been my tether/anchor in mobility and independence for 17 years: 1. Pantera 2. Cricket, and now my beautiful 3. Georgina (Georgie). A life of family and friends is my joy and anchor in life.

The human spirit is stronger than anything that can happen to it. CC Scott

Monday, May 6, 2013

Motherhood. Retinitis Pigmentosa.

 
After I posted this, I received feedback that someone might like to read my short essay written for American Mothers, Inc. This feels a little awkward to post ... what I hoped to convey is my deep love and appreciation for my children and the role as a mother inspired me to move forward through vision loss with joy.  


Thirty years ago at the age of 18, I was diagnosed with Retinitis Pigmentosa.  I had recently started dating Steve, my husband of now 29 years at that time.  I wondered how this diagnosis would impact my dream to be a wife and mother.  (At the time, I did not have any mentors who were blind - I now know many wonderful mothers who are blind.)  He told me we would achieve our dreams together.  Indeed we have.  So very grateful to have an amazing, supportive husband.  Steve and I married and were blessed with two beautiful children.  They were our world and inspired me to find every tool that would help me be the best mom that I could be while my world was going dim.  I learned that my children simply needed my love and blindness need not change the joys nor responsibilities of being a wife and mother.  I experienced many losses as a young mom: driver’s license, ability to even feel safe walking with my children, the joy of sitting down and reading a book to them, even recognizing their faces.  My children were my inspiration to continue to dwell in the many possibilities in my life.  As vision declined, they were my motivation to begin to use a cane to get to that parent teacher conference.  The desire to walk confidently as their mother into that orthodontist appointment  (and so much more) was worth the sacrifice to leave for a month and train with a guide dog. 

Victor Frankle’s words come to mind:  the last of all human freedoms: the freedom to choose one’s own way, to choose one’s own attitude given any set of circumstances.  My incredible husband and children inspired me to choose joy and gratitude.  Thanks to them, we learned the bus system so we could go meet dad for lunch, take a visit to the zoo, get to doctor appointments and so much more!  I embraced a tandem bike and found ways to be creative to continue to be actively involved in their lives. 
            On a vacation to Jamaica as a family, we were receiving instructions on the zipline. The guide was discussing visual instructions – such as you want to keep an eye on the tree so you stop yourself before you run into it! My son Kendall said, ‘my mom is blind, what is an alternative way that she can do this activity’.  In that moment I knew I wasn’t going to get out of going on the zipline, but I also recognized that perhaps I had given my kids the gift of being creative and embracing our challenges with optimism.  If so, I am grateful to them for inspiring me to see life in that way
            It is not uncommon on a morning of an important meeting for me to pull out my phone and send my daughter a picture of me in my outfit.  Not being able to see myself in the mirror, she can quickly give me:  looks good mom or those colors don’t quite go together.  I love the moments of connection and times of laughing together shopping for school clothes and prom dresses. 
            Memories of seeing my children help others at local and national Foundation Fighting Blindness conferences has shown me how these beautiful children channeled their mother’s disability into lives of empathy, compassion and helping others. 
            Being a mother is a beautiful gift that I treasure each day.  My family gives deep meaning to my life.  I hope my children know of my  deep love and admiration for them as they are now incredible, compassionate young adults contributing to their families and communities.  My parents instilled in me the love of learning.  I hope that my passion and hard work in obtaining my bachelor’s and master’s degree was a part in my children’s love for learning.  Natalie has a bachelor’s degree in journalism and an MBA.  Her accomplishments as a young woman are inspiring.  Even more so, as a mother I am grateful for her compassion and empathy for others.  She has volunteered in her community in various ways and received awards for her activism. Kendall will graduate in May with his bachelor’s degree in political science.  He reaches out to others and volunteers at a refugee center.   They are both educators and advocates for people with disabilities.  
           I am so grateful for an incredibly supportive husband that has been there for me every step of the way.   As a young mother who was blind who also wanted to further my education, he was there watching the kids so I could go to class, helping with transportation and assisting with reading textbooks!  Our love and commitment to our children has always been a team effort.  He has managed his own successful career while supporting me in my dreams.   He juggled carpools and his workload so that our kids could be active and involved in extracurricular activities.  Perhaps, our tandem bike is an analogy of our relationship.  It might be easier for him to ride a single bike but when that was no longer the safest option for me, he embraced a tandem bike and the experience!  He gives me the gift to still be able to enjoy riding a bike.  I feel like I can soar with my dreams as he tells me ‘I am the luckiest guy in the world to be married to you’.   Just like a century ride on the tandem together, motherhood might have some challenging climbs at times but also has given me a beautiful life full of many times of screaming whee down the hill.  Perhaps, those joyful downhills are even sweeter from the climb.    
         I grew up seeing my parents set the example of service both in our home, in our church, and in our community.  Following their example, I have served my family, my church, community and selected a profession that also has given me numerous opportunities to give back and serve.  

While my two children were in preschool through high school, I served as a volunteer in their classrooms, in school activities, field trips, chaperoning school dances, etc. From their elementary school to high school years, I was accompanied by my guide dogs – first, Pantera and then Cricket. 

I served as a Girl Scout Leader, Webelos Leader, and teacher for the Communicator and Disability Awareness Merit Badges.  I volunteered time teaching the 7th grade curriculum on blindness for several years and other classrooms as requested. 

My husband and I served for several years as Co-Presidents of the Foundation Fighting Blindness, Utah Chapter.  We have had several opportunities to speak at the national convention on topics of Thriving with Vision Loss, Managing Family Life with Blindness, and Recreational Options for Visually Impaired Adults.  We have also mentored other chapters throughout the country.  Our children were involved in all the activities and learned to help and support other families affected by Retinitis Pigmentosa.  We have had the opportunity to speak throughout the country at their conferences.  We happily volunteer our time.  When we receive a call that someone has been diagnosed with Retinitis Pigmentosa, we love to visit and offer support.   

As a member of the national leadership board of Guide Dogs for the Blind Alumni for the past three years, I have served this school that has given me such freedom and independence with my two guide dogs.  As a member of the speaker’s bureau, I love to speak to schools and organizations in the community educating about Guide Dogs for the Blind.  I have had the opportunity to speak throughout the country on my journey and the gift of a Guide Dog.

As a person with a disability, I have experienced times of discrimination that increased my compassion and empathy for others and also my resolve to further educate and be proactive when this occurs.   This is an opportunity to turn lemons into lemonade, and I see it as an opportunity to educate on the Americans with Disabilities Act.   Recently, after a store denied Cricket and I access we had the opportunity to turn this experience into one of education.  The experience concluded with a group picture reminding me once again the power of positivity.   Each of us can make a difference and can do hard things. 

Through the years we have tried to create opportunities for our family to serve.  Kendall receiving his Eagle was an opportunity for our family to be involved in service to the National Ability Center.  One of my favorite family memories was our weekly visits to a local nursing home for a few years.  I reflect on another experience, shortly after I had lost most of my vision.  The request was made in church for volunteers to visit and help a woman who could no longer feed herself.  I recognized that besides the challenge of finding transportation to get to her, I could do this!   I remember sitting there with my guide dog by my side while her and I laughed as I tentatively at first got the food to her mouth.  A special friendship was formed.      

In my profession I have worked at several agencies that help families.  I worked at the Moran Eye Center helping patients and their families adjust to a family member who was losing their eyesight. I helped create the video – Adjusting to Vision Loss for Family and Friends that is shown each month at the Moran Eye Center.  Working at Lifeline Adolescent Treatment Center and LDS Family Services as a therapist was an opportunity to bring families together and help them heal.   

In 2006, with the support of my husband, we founded the businesses: Resilient Solutions, Inc & Resilient Center for Grieving Families to further the support that could be offered to families.  

I have served my church in various capacities and am currently serving in the Stake Primary Board where I just completed chairing an effort for the Hser No Moo Community.  

In 2011, I received the Wasatch Woman Award.  I was touched and honored by this special award.  As I reflect back, the most special part of the award was that my daughter nominated me and spending this special day together with my family!  Another joyful blessing of this experience is the other women that have become friends.  
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If you have reached the end and are still reading, thank you :)!    
  
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KSL Clip with my wonderful kids and dear running friends.

Happy Monday!!   

7 comments:

GOOSE said...

Thank you for posting this. We enjoyed reading it and loved getting to know you better.
Blessings,
Goose

S.DAY said...

Great post! LOVE reading about your love of motherhood and love for life. And the KSL spot was awesome!

Grandma & Grandpa said...

What wonderful days for all your family! Congratulations to Kendall, to you, and to the whole family!

Leslie said...

Wow... you are an amazing woman and I really enjoyed reading your story. Thank you for sharing it with all of us. You have reminded me that "joy" and "gratitude" is a choice we make in our lives. Thank you...

Da Googler said...

Wow is right, you are truly an inspiration. I too have retinitis pigmentosa and am about at the point where I should get a cane and maybe look into a guide dog. All I can say, is optimistic attitude is really inspiring! I think I might have to make a copy of this and any time I'm feeling bummed out give it a read. Really appreciate you sharing this. Many kudos to you!

Ellen said...

Thank you for the inspiration that you are! And for the reminder to turn lemons into lemonade. You are an amazing person!

ojdoherty said...

Amazing! I don't know what else to say