Full Circle

June 14 of 2010 was my first post on the Baby Center FPIES board. I was reaching out to other moms who knew where we were and where we were headed. Carter had just reacted to rice milk. June 6, 2011. I gave Carter yogurt with Rice Starch in it.  We have come so far, and yet still have so much further to go.

FULL CIRCLE

Next weekend is Father’s Day weekend. It is also my Brother in Law’s birthday. Happy early Birthday J!! It is a time of fun and memory making. Or at least it should be. For me it marks our true FPIES anniversary. It was not Carter’s first FPIES reaction, that happened in May. But it was the moment when I realized that this was a force much bigger than I had anticipated. It was something I could not navigate on my own. It was the moment I realized that we were dealing with something much more involved than a severe case of Milk and Soy Protein Intolerance. This FPIES beast functioned like nothing I had ever imagined.

The Thursday before Father’s Day 2010, I gave Carter a cheese less quesadilla. There were refried black beans and tomato salsa. I checked the product labels carefully to make sure they were free of Milk, Soy and Rice. Carter gobbled them down.

Friday morning, June 18, 2010, he woke up in pain. His diaper was full and had leaked all over the bed and himself. He cried when I changed him. I cleaned him up, consoled him and tried to figure out the cause. Later that day, he had another blow out diaper.  It was full of mucous and burned his skin. After that diaper, I turned to the new found support of the other FPIES moms. Talking it over with someone who is now a great friend, J.M., I realized the connection. Soy is a legume. Black beans are a legume. It was the beans that were causing all the distress. After this realization, Carter had another blow out diaper. He sat in the bath tub screaming while I tried to clean off the pain I had inflicted. I called my husband in tears. I had done this to him. I fed him this horrible food. It was all I could think about. I held Carter and we cried together.

Eric came home from work as fast as he could. His Father’s Day was spent helping to care for a very sick little boy. It was not the last time I called Eric at work, in desperate need to hear a calm voice. It was not the last time that FPIES stole precious family moments.  It has been a year since FPIES became the 6^th member of our family. It has taken me a year to come to terms with the fact that FPIES is not leaving. We have learned many of the rules, but we still make mistakes. We still lose sleep. We still shed tears.

We have also learned to savor those big smiles and bright eyes. We have learned to slow down and focus on making happy memories. We celebrate the little victories like Carter safe eggs from the local Farmer’s Market and we have found a strength we never knew was there. On our 1 year FPIES anniversary, I will not mourn was has been taken, but I WILL celebrate in ALL that we have been given.