Support

After a full weekend away from my boys, I’ve come back home with clearer, more focused eyes and a new perspective on the word “support”.  I thought I understood this word and it’s meaning in my life, but FPIES has brought it to a whole new level. Support for me has taken a total transformation in the last year.  Support is someone telling me that they’ve done some reading and research into FPIES so that they have a better understanding of it.  Support is having someone brainstorm different ways to treat Carter’s cold that don’t involve ingesting medications. Support is the acknowledgement from family and friends that what we are dealing with is real. Support is the understanding that we don’t attach the term “chronic illness” for attention. Someone is someone understanding that there are times where I just want to have a non-FPIES conversation. 

We have been in this maze long enough for our family and friends to see that this is not something we will be free of anytime soon.  They are starting to realize just what the walls of this maze are made of and how impossible it is to break through. They have seen how dark it is in here and how easy it is to get lost. They have seen some of our strongest moments and some of our weakest. And they have shown us the true meaning of support.

I have finally started to share my truths. I used to just mask over our daily struggles. When asked how we were and how Carter was, we were always “Great” “Fine” Happy” “Wonderful”. I figured that most people really didn’t want the truth and I’m not sure I could have been honest with them, because I would have had to be honest with myself. It is support that has helped me see the genuineness in the people surrounding us.  I have realized that in those moments where I felt completely alone; there was always someone with me, supporting me and pulling me through.

 FPIES is a very isolating condition, as is any chronic illness. There are times when going out of the house is too much.  Again, support comes to the rescue with the knowledge of people who will make their homes safe for Carter; who will do their best to understand why it is so scary for us.  People who break through the isolation because the more people who stand in the maze with us, the brighter the light is and the easier to is to see.  I have made some incredible new friendships and have strengthened others along the twists and turns. These are the moments when I realize that with the struggles of FPIES also come the rewards.  So the next time someone asks how we are, I will tell them. The next time someone asks if there is anything they can do to help, there will be something.  And we will walk through this maze together.