Tenacity

The word tenacious as defined by The Merriam-Webster Dictionary,

“te·na·cious adjective \tə-ˈnā-shəs\

: not easily stopped or pulled apart : firm or strong

: continuing for a long time

: very determined to do something

A tenacious spirit or tenacity is a quality I see in every child I am connected to with an FPIES diagnosis. Of course I see this in my own son, but there are so many impressive kiddos in this community. Almost all of Jack’s FPIES buddies are far away from us.  Actually, he’s never met any of his buddies in person and I haven’t met their parents in person either, yet we are a fierce and tight knit community. There are so many examples of tenacity I could share, but here I will highlight only a small few.

S is a 4 year old boy who lives in the Midwest. He likes to cross country ski with his family.  This week he was out on the trails and need a snack, so right there in the snow he had a liquid bolus feed through his feeding tub and then off he went on the trails. FPIES doesn’t stop S from living and enjoying time with his family, he rocks on!

M is a 5 year old boy who lives here in New England, (we hope to meet soon in person) he likes to hit the slopes.  He’s been trialing some foods and struggling with nutrition recently.  Has this stopped him from skiing with his dad? Nope! Even when he’s exhausted and falling down he wants to keep going, Mom and Dad have to pull him off the slopes.  M is a free spirit and one of the happiest kiddos out there, he rocks on!

W is 2.5 and lives out West.  He’s really struggling right now with a systemic infection. He has no safe foods and his formula is questionable. The medication he needs for his infection makes him react; it’s a very difficult situation.  He was feeling very crummy the last few days and the family was going on an adventure to the Dinosaur “park”.  Mom decided they were going to go to give W a break from the usual.  He loved being there and didn’t want to leave! Mom also held him or “wore” him the entire time. W also participates in extensive therapies weekly to help with his overall development, mom reports even on his hardest reaction days; W is participating in therapy and making strides. He rocks on!

S lives in the Northeast and is 9, she’s been losing what were safe foods recently due to an inflamed gut. This is very hard for a young school girl, who just wants to eat normally like all of her peers. S is incredibly creative and her mother recently posted a video of S in an elaborate pretend play scenario. S was cute, dressed for the part and quick witted. By the way, she made this video all by herself.  She rocks on!

FPIES isn’t rainbows and butterflies, but man do we have kids who teach us daily what it means to live, love and be in the present moment.  Behind every tenacious child with FPIES is a parent, grandparent or caregiver with just as much strength, tenacity and courage. Together we rock on!