My Littlest Hero: The Journey Continues

“My Littlest Hero: The Journey Continues”
by Steve Stowe
August 2008

Jared was nine months old when “My Littlest Hero” was written. Kathy and I have learned one thing for sure about Shaken Baby Syndrome, never commit your beliefs to what is right in front of your face. The time has passed so quickly I am not going to even try to date any of the events that have followed. If anyone really wants to know, you will have to ask Kathy. She has documented every breath that Jared has taken from day one.

Our hopes were high to say the least when the doctors began talking about the possibilities of removing his Tracheotomy. Everything had seemed to fall into place as if God was taking us into the next step of the miracle. Mary Ann, Jared’s physical therapist was elated to see his progress, and to learn that Dr. Chris Connolly, a Chiropractor no less, was treating Jared with amazing results. Jared’s charm had begun to win over everyone who came into contact with him.

Out of no where one evening, Jared began to experience uncontrollable seizures. The docs worked with his anti-seizure drugs at a rapid pace in order to at least slow the seizures down. I never knew that my faith could plummet at such a rate.

On my knees, in tears, I begged God to let me change places with my grandson. I bargained with Him, reminding God, as if he didn’t already know, that only by His grace had I lived this long. With help from Kathy and a wonderful spiritual advisor, I came to realize that I could not play God.

The seizures would begin to show up every seven to nine minutes. Kathy never slept more than an hour for days on end.

Jared was hospitalized again while Kathy stayed by his side night and day; reminding the nurses to just lay his meds at the foot of Jared’s bed and she would take it from there. There were times that I would cry so hard that I wondered if I could catch my breath. Kathy, in her relentless stage of faith, almost angered me at times. Finally, the appropriate anti-seizure cocktail started to work. Jared would pull through another near-death experience, but some consequences would take place.

A severe sleep disorder is disastrous for a child with a chronic seizure disorder. It is now at a point where the potency of the medications makes it nearly impossible to keep his stomach at ease. Jared will probably never walk, he will probably never get rid of his tracheotomy, and he may never speak a word out loud that is understandable.

Jared’s unremitting stamina coupled with his Nina’s commitment to put his care before everything has made it possible for me to completely change my perception of life on this earth. What used to be big deals seem to vanish with just a chance to hold Jared after a nap, when he seems so peaceful. I creep into his room early in the morning just to smell his scent and listen to him breathing and I am overwhelmed with the presence of God.

Jared’s mother has left for now. Her grief seemed to overwhelm her ability to care for Jared at times. I am not one to judge someone unless I have traveled in their shoes. Kathy, through her effort, has really always been his Mommy, Nina, Caregiver, and Soul Mate. That will always be Jared’s reality. Jared will turn two years old on October 6, 2008. We have started a non-profit corporation, Shaken Baby Syndrome of Virginia, Inc. We are committed to making parents aware of the consequences of this silent killer. Through education and awareness, we hope to protect as many children as possible.

We thank our many fiends for their prayers. We also thank our volunteers and generous vendors who have helped us put together our vision of hope.

We will keep those of you who to care to learn, informed on Jared’s progress.

Steve Stowe
President
Shaken Baby Syndrome of Virginia, Inc.