When my son, Ishan, was initially hospitalized for aspiration pneumonia, failure to thrive, and feeding intolerance, an NG tube was placed. I felt so defeated. I felt terrified. I felt anger. I felt overwhelmed.
I watched my infant son struggle in the hospital to breathe, to eat. I thought perhaps since we were being seen at the children’s hospital, I would get the social support I needed– to feel seen, to get connected to resources like a new childcare option now that the NG tube made it impossible for Ishan to return to full time daycare, and to navigate this new world, but like too many families, that wasn’t my experience.
I was so isolated. Family and friends who expressed their desire to help, didn’t know how. I didn’t have the capacity to tell them how. I was consumed with keeping my son eating, keeping him breathing. Well-meaning family and friends didn’t understand my son’s health issues. It felt like they didn’t care. When the NG tube was placed, people thought he was ‘better’ and any offers of support seemed to stop altogether.
Desperate, I started looking online for support groups and I found Feeding Matters. I requested to be a part of mentorship pairing through their Power of Two program. I was paired with a parent mentor who had ‘walked in my shoes’ with their own child’s with feeding issues. The first time Leilani called, I was a wreck, but her positive and understanding energy was everything to me. She reminded me to recognize the tiny moments I was grateful for. She told me to celebrate every little positive step, to laugh at every laughable moment. I was so burned out but her encouragement and experience helped me to change in small ways and become the mom and healer my son needed me to be.
We left the hospital with the NG tube and began feeding therapy once we got home. Months later, I am happy to share that we are getting ready to wean Ishan from the NG tube. I regularly call and text Leilani with updates, questions, and ask about how her son is doing. It’s heartening to see a parent further in their journey with pediatric feeding disorder, to see that life moves forward and progress can be made.
Ishan is my whole world. He is a fighter. He is a joy. Despite having approximately 20 different diagnoses related to feeding, he is eating orally and enjoying exploring food. I am thankful for every day, every meal, every moment with my boy.