Special Kids, Special Mamas
A young man, wise beyond his years said to me:
Awareness is critical to get research.
Research is critical to help these kids.
Tell the stories.
“Riley is a spunky, sweet girl, who keeps us on our toes. Nothing can slow this girl down!”
“Molly is a petite, social, first grader with the best giggle.”
“Crohn’s Disease messed with the wrong girl!”
“Waylon’s smile is an example of hope.”
“I love my super speedy Matthew.”
They make it look effortless, holding feeding tubes to give their sweet children food. And as strange as it may be to some out there, this is the normal for their family every single day. Scheduled, prescribed. It is hard for me to identify, because when I am hungry I just eat. I personally do not understand, because I love food. I do not understand, because I do not require a hole in my belly to ensure that I get nutrition. You? The majority of the community fits into my category, honestly.
I want to hear their stories though. I want to put myself in the position to learn the why and the how. We should all strive to keep not just our minds open, but our hearts as well to allow understanding. Educating ourselves. Evolving how we see others. It is essential that we attempt in conjoined efforts to provide whatever is necessary for encouragement, validation and inclusion. Stories speak louder than shouting.
(Left to Right)
Susan is feeding Molly through her g-tube using a real food blend diet designed by the John Hopkins Epilepsy Center. Molly does not eat orally, and since birth she has always struggled with coordinating suck/swallow/breath. She developed seizures at age two which caused her to become drowsy. Following the seizures, Molly began to aspirate food. Tube feedings became the obvious choice to help with her body processing. Molly uses the LGIT (low glycemic index diet), and it has given her more energy as well as seizure freedom. Molly may not realize it, but she is certainly adored, and steals the show with her cuteness.
Amanda is holding Bella, but she isn’t pushing food like the other moms. Bella’s tube feeds run continuously through her g-tube 24/7 using Elecare Jr. formula. The back pack she is wearing allows her to wear the feeding pump all day to receive nutrition. Bella has Crohn’s disease, which causes her stomach pain and the inability to maintain healthy weight and growth. This disease makes it difficult for her stomach to process a lot of foods as well. Bella continues to try new treatments. With that smile, I would never know her battles. What a testimony of strength and grace.
Becky is giving a bolus feed to Riley with a puree blend of baby foods and Pediasure Peptide formula. Riley has oral aversion which means that feeding is scary for her by mouth. She also has gastroparesis, which requires a gentle mixture of nutrition to aid in the prevention of discomfort in her belly. Riley has a problem with aspirating which means that fluid or food could go back in to the lungs and cause serious infections. Her dysphagia, or difficulty swallowing, makes tube feeding of course along with everything else, the safest way to get nutrition. Riley loves her drums, books and most of all, her amazing Mom, Becky.
Tubie kids are all different. It does not make them any less human. It does mean that breakfast, lunch and dinner require more efforts to measure, administer and observe. It does take more than just popping a pizza in the oven or hitting the drive thru if someone’s belly is growling. It is longed for by these families that society not fit this subject in a neat little box. You cannot simply just “fix” these children and their complications. It is insensitive to assume. Hours of research done by parents, hours of specialists and nutritionists consulted. Exhaustion is a reality and awareness and understanding, essential.