Small Steps

May 5, 2011 at 10:35 pm | Posted in Grief, silver lining | 4 Comments
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As I wrote about in this post I have great admiration for bereaved parents who continue the legacy of their children.   We have not yet started non-profit or a run.  However, we did participate in the March of Dimes walk last weekend.  We have walked almost every year since Jake died.  Our team had been called Jake’s Journey.  This year our team’s new name is Jake’s Journey and Sawyer’s Strides.  

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Thank you to all those who supported our team this year and in past years.  We appreciate your kindness and generosity.  I do believe that the March of Dimes is making a difference and saving babies. 

The walk we did started at the Mattie J.T. Stepanek park.  At the age of three, Mattie started to write poetry to cope with the death of his older brother.  Mattie and his brother suffered from a rare form of muscular dystrophy, dysautonomic mitochondrial myopathy.  Mattie died a month before his 14th birthday. His sister and two brothers also died from the disease during early childhood. His mother has the adult form, diagnosed only after all four of her children were born.

Mattie’s mother, Jeni, spoke before the walk.  I was able to meet her afterwards.  Her strength and courage is remarkable.  She continues to spread Mattie’s message of peace and hope.  I am going to do my best to share and honor Jake’s and Sawyer’s lives. 

Facing the Future

Every journey begins

With but a small step

And every day is a chance

For a new small step

In the right direction

Just follow your Heartsong

by Mattie J.T. Stepanek


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  1. I cannot imagine the strength that is needed to move forward after the death of four children and then face your own mortality with such a horrible disease. When is the next walk and please let me know how to contribute.


  2. I think it’s great that you are out there with Fletcher and Alyssa — and I love the pictures of them stretching! Please let me know how we can support your team.

  3. Thanks so much for posting this message and the pictures. Fletcher and Alyssa are truly adorable!

  4. […] you so much for again supporting our team this year and in past years.  We appreciate all of your amazing kindness and […]

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