A Warrior and His Protector

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Rod Spadinger

Life begins with uncertainty. Who will you become? What will you become? Why will you become it?

You need a champion. You need an advocate. You need a protector.

One evening at an eatery in North Rock, Kansas, I found these traits in Cystic Fibrosis Warrior mother, Terri Mathieu-Erker, and her nearly two-year-old CF Warrior, Andrew, sitting at double tables, just to the right of the entrance.

Andrew entered the world as a special Warrior, born two and a half months premature, weighing not even five pounds. As he moved about our tables in a curious manner, being confined as best he could by his mom, and by his day nurse and close family friend, Sammy, who was nearing her third trimester of pregnancy at the time, I could not have known his burdens.

In addition to Andrew’s diagnosis of Cystic Fibrosis, he experienced perforated intestines in the womb, and continued with this circumstance after his birth.  This brought about a severe intestinal infection resulting from the bowels being nonoperational throughout his development, as his life and body were forming.

I was fully aware that I was conversing with a CF Warrior mother during my visit, as her passion for the well-being of her Warrior was evident. Terri would tell me that it was difficult to watch her little one struggling to digest his food, fighting to gain nourishment. 

As we talked, Terri would attempt to feed Andrew, but repeatedly he would dismiss it. As if to nod to that behavior and tendency. Waving the spoon away, as would a prince refuse something beneath him. He had better things to do, as a two-year-old.

I was fully aware that I was conversing with a CF Warrior mother during my visit, as she described to me how several months before our visit, Andrew’s lung function was recorded at less than 10%. The combination of medication and her deliberate care over the last year has brought his lung function up to 53%.

The inspiration I gained during this visit was remarkable. It was more than just a chat over burritos, fries and nachos. It was watching the magic that continues to develop between a young warrior, and his advocate and protector.

We made our way to the exit, and I could not help but think about how the stubbornness of this little one who waves away spoonfuls of dinner will one day conquer more than just an unwanted meal portion. 

Life begins with uncertainty. Who will he become? What will he become? 

Andrew will become a champion. 

Why will he become one?

Because Andrew is already a proven Warrior, tried and true. 

And because Terri, his mother, advocate and protector, has dedicated her life to ensure his champion and Warrior status will endure forever. Both because of, and notwithstanding, Cystic Fibrosis.

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Update: In the year since this post was written, Andrew has gone from being in the 10th percentile to currently being in the 90th percentile, a consequence of Orakambi. Further, Andrew’s liver specialist believes his liver is regenerating (!!!), and the CF clinic has cut back on his tube feedings, so as to keep Andrew from gaining too much weight. What a difference a year makes!

 

Help Others Live STRONGER and LONGER- 

    

 

Rod Spadinger, 48, has Cystic Fibrosis. Born and raised in Hawaii, he moved to Dallas, Texas, where he underwent a double lung and liver transplant in August 2017. From the age of four, until he was diagnosed with Multiple Sclerosis as a junior in high school, he ran at least five miles a day to keep his lungs clean. In 2019, and into early this year, he journeyed to connect with fellow Cystic Fibrosis patients throughout the United States, having driven over 26,000 miles with these travels. Inspired by The Lord and his angel donor, Joni Marie, who provided him with her gifts of life, Rod published the memoirs of his post-transplant journey, and celebration of this second life, in the book “A Collection of 50 Stories Inspired by my Ange Donor, Joni Marie”. He is currently compiling a subsequent publication, primarily consisting of documenting his road trip encounters with fellow CF Warriors. Rod also Co-Founded and is the Executive Director of a CF focused non-profit organization, CF Vests for Life Foundation (https://cfvests4life.org/).  Connect with him on Facebook under his name, and on Facebook at Cystic Fibrosis Artists; Two New Lungs, One New Liver – A Year and Beyond with Cystic Fibrosis; Cystic Fibrosis Road Warrior – Ashleigh’s Life Foundation; and CF Vests for Life Foundation.

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

***Please speak with your physician before making any changes to your CF management***

 

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