My Dad Led Me Out On A Limb
Notes From The Road

One Day At A Time - Dealing With Usher Syndrome

So often the phrase "one day at a time" is only associated with sobriety. However I have found the phrase to be helpful in all facets of my life, especially when trying to deal with things I completely can't understand and are out of my control -  like why do children get serious illnesses and suffer? It's just impossible for me to wrap my head around why bad things to happen to innocent children. 

Zoe at visionwalk 2012 - edited
Zoe at VisionWalk 2012. This year she is a youth co-chair!
This week the boys and I are on a road trip. Our final destination is Kansas City to participate in the Kansas City VisionWalk. We are proud to participate and support Team Zoe. Little Zoe is the daughter of my cousin, Katie Kaemmer Murrow, and her husband, Wayne. Austin is Zoe's very cool and supportive brother. 

 

After years of visiting doctors and doing their own research in an effort to figure out issues with Zoe's hearing and sight, in early 2012, Zoe was diagnosed with Usher Syndrome, something I had never heard of until Katie and Wayne explained it to me last year. And as they calmly explained Zoe's symptoms and prognosis, I was stunned to learn that such a little sweetheart had to deal with such a viscious condition.  You see, although born with the ability to hear and see, Zoe is now losing both her hearing and vision. 

I know I am not the only one who has wondered, why Zoe? Why any child? Is it better to be born with the ability to see and hear and then lose it? To know what you are missing? How must it feel to have your world become a little more silent each day?

See a little less of God's creations month after month? There are no answers to my wonderings. And worse, to date, there is no cure for Usher Syndrome. 

Zoe at her lemonade stand -edited
Zoe raising money to fight blindness with her own lemonade stand.

What can be done?  Because everyone I tell about Usher Syndrome wants to FIX it, stop it, or at least slow its progression! Unfortunately, finding a cure is beyond the capabilities of most people I know. We are counting on the sharper tools in the shed on this one. Luckily the Center for Fighting Blindness is funding research projects that have resulted in great achievements. Zoe's family puts trust in their work and therefore has become heavily involved in the largest fundraiser for the Foundation Fighting Blindness: VisionWalk, which takes place in over 50 cities with almost 100,000 walkers.

This year Zoe is a youth co-chair of the event and will take the mic and courageously address the crowd on Saturday. Her strength and spunk will inspire all present, including my three sons who are already moved by Zoe's story. And as a result, have mushier hearts and want to help effect change.

 

It's free to register and walk Saturday, June 22 at Frank A. Theis Park on Oak Street and East 47th in Kansas City, MO. More importantly, contributions are needed to support the center for Fighting Blindness in their mission to find a cure for Usher Syndrome. I hope you will consider making a contribution to this important event on Saturday.

In the meantime, I must remember to take one day at a time to cope with the unknown of the future, the questions I cannot answer, and enjoy the precious moments put in my life's path. No doubt Saturday's VisionWalk, as part of Team Zoe, will be one of those moments.

For details on the walk or to make a contribution, click here.

Now if you want to be moved, check out this poignant video Zoe's cousin, Kassidi Kaemmer made.*  It truly shows that Zoe is just your typical little girl who likes to goof around, dance, and enjoy the love of her family. However, we all know Zoe is hardly your typical little girl. 


  

*Not available for viewing from a mobile device. 

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