Relaxation and Realities

We are getting a weekend away . . . Just me and my husband. The boys will be staying home. I need this, we all need this, that’s what I keep telling myself. I say this as I arrange a list of Safe foods for Carter.  I say this as I write up a care sheet for his meals. I say it as I pack up his medicines, with a huge note of caution not to get them mixed up with the medicine for the Big Boys.  I will continue to say this until I have dropped them off and are too far away to turn the car around and bring Carter with us.  I know he is in good hands, amazing hands.  But there is a very real danger of him having an accidental ingestion and a reaction while we are hours away. 

Another FPIES mom wrote today about the realities of FPIES, the hidden realities that are seldom talked or even thought about.  There is no such thing as relaxation anymore.  It has nothing to do with having children or being busy maintaining the house.  It is impossible to escape this condition.  I do not mean that I obsess over it or try to think about it, but it has forever changed my views on the world around me.  We were out to dinner one night at a favorite family restaurant, a favorite for their soup. My husband loves this soup! It is one of the main reasons we go.  As we were eating, I looked over at the next table to see a little girl sitting in a high chair. She was at least 6 months younger than Carter.  Her mom was giving her tastes and bites of soup. A soup, I realized, that Carter may never get to eat. Those are the moments where my heart breaks for him.  It is the experiences like that, ones that remind me of what he is missing. 

I realize now, how much of live is focused, center and surrounded by food.  How many “Baby’s First” moments involve food? First Fruit. First Veggie. First Holds a Spoon. First Drinks from a Cup. First Birthday.  I am learning to shift the focus away from food.  This hasn’t been an easy process. My father was a chef.  Growing up, life was all about food. Holidays are so much about the food.  Halloween. Thanksgiving. Christmas. They are fast approaching and I am already trying to figure out how we will handle them. It is yet another hurdle that I never imagined. Maybe that is one of the scariest realities. What is out there that I haven’t even thought of yet?

Carter amazes me every day with his warm and sunny personality. He is learning so much about the world around him, adding new words to his vocabulary and finding new ways to interact with his world. How does a little boy who has lived so much of his life in constant pain, greet each day with such hope? There is a smile on his face every morning when I walk in his room. He stands there in his crib, so happy and so full of life.  It seems to me that he was given this personality to help us all cope with the FPIES reality.

I am amazed that his body didn’t just shut down in those early months. I am baffled that he doesn’t fear the doctor or his sippy cup. I am honored that he has put his trust in me and kept it there, even though I am the one who has fed him the foods that made him so sick. He is so strong in ways that far exceed his age.  All I want to do is provide the life he deserves and to try to give back to him for all that he has given me.