Today’s lessons from first year EA/TEF parents come from guest bloggers Katharine and Jake Kaczmarowski. As is often the case, their advice will benefit more than the EA/TEF crowd. It will resonate with parents of children with a wide variety of disabilities. Perhaps it will resonate with you.

Our family’s story began at our son’s 20-week anatomy ultrasound when our son Mason was diagnosed with congenital hydrocephalus. This condition causes an abnormal buildup of cerebrospinal fluid in the brain causing a wide range of developmental delays. At birth, he was unexpectedly diagnosed with another birth defect where the esophagus and stomach are not properly connected, called tracheoesophageal fistula and esophageal atresia (TEF/EA). He spent 6 weeks in the NICU, as he needed multiple surgeries to repair and manage these diagnoses.

It is hard to believe that we are approaching Mason’s first birthday. We have adjusted to a busy schedule over the past year. We attend regular developmental therapy appointments and see many medical specialists, both in our local area and over 2 hours away. Our son is delayed in meeting most developmental milestones. However, he is resilient and makes progress each day. There have been some bumps along the road, including unexpected hospital stays and new challenges, but seeing his bright smile every morning is our greatest motivation.

These are four lessons our son has taught us in his first year:

#1: Celebrate the “inchstones.”

It can feel discouraging to focus on big milestones, like head control, sitting independently, and walking. It is difficult to do other things in our life, like housework or hobbies we enjoy, because it feels like he needs our attention all the time if he’s going to make progress. We remind ourselves that he is developing at his own pace. Instead of the milestones, we celebrate each small incremental stride our son makes while working on those bigger goals.

#2: We are his greatest advocates.

While we are surrounded by a great medical team, we know our son best. At each appointment, we learn all that we can about his condition and how each provider can help our son. We constantly ask questions and give our opinions. Ultimately, we come to a collective decision with our son’s providers to make the best medical decisions for him.

#3: Try it again, try it differently.

Our son came home feeding mostly from a gastrostomy tube (G tube). We tried changing so many things and thinking outside the box to improve his ability to drink from a bottle. Eventually, with the right combination at the right time, he succeeded with the bottle at four months old and now enjoys purees. Mason is always changing. We constantly reevaluate what he needs to succeed and are not afraid to return to things that previously failed.

#4: Remember all the good.

This is hard. Some days can be very hard. The stress and the difficulty of this experience can be overwhelming, especially when you are comparing it to what other parents experience or your own expectations. But no matter the added challenges, the smiles, laughs, and love are still there, perhaps even more so. Embrace it all, most of all your lessons as first year EA/TEF parents.

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Image courtesy of Katharine and Jake Kaczmarowski