A friend posted today that her son is turning 6, I’ve watched this family struggle with this horrible disease that takes away a childhood and makes parents rethink their entire process. This amazing child has so many fewer safes than Nicole but still his parents are focused on him just living his life.
This is also where we are with Nicole pushing her boundaries in a safe way all the time understanding that this will be her normal forever. There will not be a time when she will sit in a restaurant and simply order off the menu – she will also either carry her food, or request very specific items to ensure she is safe.
I looked at her this past week and said she’d have to live in an apartment when she went to college in order to eat. We are thinking about how we send her to Spain for her Jr. Year of highschool. Nicole is already creating a plan for her to go to college. This is her life, and she gets to live it the way she wants.
I can’t believe we’ve been dealing with the FPIES dx since she was 4 and POTS since 10. Many of our friends are simply going to a holding pattern with the FPIES. No more food trials and focusing on the quality of life for these kids instead of pushing new foods on them. This is where we are as well. She doesn’t need food to make her life better she needs life to do that!
We will focus on the memories we are making and making sure that her life is lived to the fullest!