Feel Me Brave

Yesterday, I wrote about this incredible book that I’ve been honored to help along the path to publishing. It is called Feel Me Brave written by Jessica Stout and her father, Walter Horak.

What is it about? I’ll let Jessica tell you. This is an excerpt from her introduction. The drawing of the dancing little boy was created by Walter.

Introduction to Feel Me Brave
©2015 Jessica Stout

Illustration © 2015 by Walter Horak
Illustration © 2015 by Walter Horak

Parenthood universally ushers in surprises, discoveries, unforeseen challenges and delights. With that said, my initial experience as a parent seemed to fit within the bounds of “normal” expectations.

Even with the perilous delivery of our second child, my husband and I ultimately found ourselves grateful and content with a healthy daughter, Jane, and son, Ryland, roughly two years apart as planned.

Our life course changed dramatically, however, soon after Ryland’s second birthday. We observed subtle yet progressing weakness on his left side and following the advice of his pediatrician, we brought him to the hospital where an MRI revealed the cause as a Diffuse Intrinsic Pontine Glioma, a tumor in the brainstem.

This was a devastating discovery, as the prognosis for DIPG is poor: Most children die within nine to twelve months and very few survive past two years.

The location in the brainstem threatens vital functions and renders this tumor inoperable. Treatment choices are limited and non-curative, and the typical progression of this disease and the way it steals functioning cast a horrifying shadow over the future.

Clearly, my husband and I had had altogether different plans for our future as a family. We had moved to Vermont with the intention of creating a healthy lifestyle with strong connections to nature and the outdoors. As parents we made choices with the overarching goals of security and stability for the family.

I suppose that from this place of deliberate planning came a certain assumption that life would unfold in a way that cohered, at least loosely, to our vision. This vision stretched well beyond our home. It included relationships with extended family members who were experiencing the joy of welcoming first grandchildren into the family fold.

Certainly for these loved ones too, there was a powerful vision for how this chapter of life should look: joyful visits and holidays together, a steady parade of milestones to witness and celebrate, from walking to biking to reading to hitting a baseball.

We also had close friendships with other young families, and in those relationships too were the shared expectations of many fun times together and the hope for lasting bonds between our children.

So this relatively small yet overwhelmingly powerful tumor struck our family at its core, with a profound and far-reaching impact outward.

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