A Precious Boy
It was a beautiful late November morning. The frosty grass and trees sparkled in the early winter sunlight. Payton’s big blue eyes filled with joy and excitement as he ran through the grass, kicking chunks of snow leftover from our first snowfall. His vibrant red hair was getting sweaty with all of his hard work! He simply ran and ran and ran with a giggle in his voice and a smile on his face. His mom, chasing him and trying to keep up with her vivacious toddler, also kept a cautious eye on him. On the outside, Payton looks like every other rambunctious three-year-old boy. Every stick he found became a sword, every puddle “needed” to be jumped in and he enjoyed the mud that was now covering his pants and shoes!
On the surface you would never suspect the struggle that he has endured for the past three years of his life. Since the day he was born, Payton has been hospitalized countless times. He was diagnosed early on with congenital hypothyroidism, but this did not explain the host of symptoms and ailments that he was struggling with. In just his first year of life, he was admitted to the hospital over 11 times for continuous infections, both environmental and food related allergic reactions, pneumonia, breathing problems, seizures and stomach ailments. In addition, Payton was not thriving because it appeared that he could not process his food. He simply couldn’t keep anything down and his crying was constant. After much trial and error, they were able to find a medical grade type of formula (which costs $50 a can) that he could tolerate and which he still depends on for his nutrition today.
The worst part? The doctors could not figure out why Payton was struggling so much.
Courtney is a young, single mom who cares for her son deeply. Payton’s father left when things got too difficult in caring for him. Because Payton was so susceptible to infection and in the hospital so often, she had to quit her job and move in with family. She explained to me her struggles not only in caring for her son, but in simply finding doctors who would simply listen to her and work in partnership with her. At first, she thought it was because she “looks” very young and naïve. She said that she had to learn to put her foot down and struggled with being an advocate for her son.
Doctors wanted Payton to have his tonsils out, but she feared that he would not tolerate the surgery well, but felt pressured to do it. Payton did not respond well to surgery and got an infection that almost jeopardized his life. Payton also developed a C-Diff infection. The colitis from this type of intestinal infection is thought to occur when C-Diff bacteria replaces normal gut flora that has been compromised, usually following antibiotic treatment for an unrelated infection. After a fecal transplant at the Mayo Clinic went terribly wrong, once again putting his life in jeopardy, Courtney almost gave up all hope. She decided there has to be a better way. She went to the University of Minnesota and was connected to a doctor who has since changed their lives. She says that for the first time, she has a doctor who listens to her, who is an advocate for Payton, and for her. This doctor is also helping to put all of the pieces together. After three years of struggles and pain, doctors have diagnosed Payton with a mast cell disorder, hypothyroidism, and sensory processing disorder. He is undergoing treatment to control his symptoms and undergoing genetic testing to decipher a cause.
Despite his illnesses, Payton is a fighter and has a smile that is contagious! Despite his developmental delays (he started walking at 16 months and at 3 is now starting to rattle off full sentences), his mom only sees his huge accomplishments. He dances, plays and laughs. She treasures his smile and his beautiful words. At night he says “Mommy, I love you to the moon and back.” And, in the morning, “Good morning, my eyes are awake.”
In fact, just having a name to define Payton’s issues is a comfort to her because it has given them a starting place from which to move forward. With the support of a doctor who advocates for them, a family who surrounds them with love, and a bond with each other that will carry them through anything, she now sees a hopeful future for herself and her son. She looks forward to the day when she and Payton can go out and not worry about getting sick or for him to develop social skills that will allow him to interact with other kids and not fear being touched by others.
Courtney is a dance teacher and now works evenings so that she can care for Payton during the day. She lives in her own apartment again and has a yard where she and Payton can run and play. Payton has started a preschool where he is starting to develop social skills with his peers. She wanted to share her story so that others would realize they are not alone. Her greatest comfort has been when she is able to connect with other special needs parents and simply share stories. It’s in the sharing that we know we are not alone and others are able to benefit and be blessed as well.
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God.