Wonderful World

Finally, it is up! Many of you know my family from Baby B's FPIES Test Kitchen! Did you know that B has a little sis, C? She is also fun-loving, creative, full of energy (we don't sleep all that much) and yes, she also has FPIES and other non IgE food allergies. Life at our house involves multiple sets of color coded cookware, medicine cabinets full of allergy meds, and a lot of rules for safety in order to lessen exposures and amplify opportunities for safe fun. I started this blog as a tribute to C, since she is her own unque little person, and because like all kiddos with food allergies and FPIES, she has her own unique list of triggers and safe foods. B and C do share a couple common foods but have a lot of differences in their safe and unsafe lists. You will find C-safe recipes here!

Recently, we had the honor of celebrating Global FPIES Day as a family. It was a very meaningful day and more emotionally charged than I imagined that it would be. It is so special to be a part of this community-- if we have to live with FPIES, at least the company is good!! We ordered special shirts from The FPIES Foundation's cafe press shop in honor of the day and both girls insisted on wearing those everywhere we went. C in particular has become attached to her shirt and she calls it her "wonderful world shirt."

When she first called her shirt that, I had to pause. I first thought, that is a strange way to look at it. Global FPIES Day raises awareness to a diagnosis that makes many many things in B and C's lives much harder than they really should be for such small children. But as I thought of it more and more, it really struck a chord. How differently do we see the world living with the first years of C's diagnosis as compared to the first years of B's diagnosis? How has the support we receive changed? How has the medical care available to C from day one been so different from the care that B received early on?

The diagnosis is overwhelming. The diagnosis can bring any of us to our knees. It feels unfair, it feels unmanageable, it feels cruel at times. But seeing the world through her eyes, I realize. She has doctors that she knows care about her deeply. She knows other children and families in the community that are living with this diagnosis day in and day out; she knows the connection and kindness we all share. She knows the special bond that she and her sister share, being able to support one another as sisters and as partners in managing this condition. She knows I will never give up on making each day, each meal, each playdate, as normal and as successful as I can for her and her sister. Even in the face of FPIES, she sees the strengths of the FPIES community as those that create a wonderful world to her.

Thank you for helping her world to be colored this way. :)