You're Not Alone - There is Light at the End of the Tunnel

This past week, a new mom sought me out because she believed her child might have FPIES. She asked me to meet her for lunch. She was very kind and sweet. She said my blog had helped her "immensely". I was so touched.

I answered all her questions, as best as I could. I gave her some recommendations and pointed her to some resources. But I told her that support was the most important thing at this time - her and hubby needed to be on the same page, and she needed to have a safe place to discuss FPIES. As such, she joined a few FPIES groups on Facebook.

If there is any advice I can give, please comment and let me know. It would have meant the world to me to have a BTDT parent to talk to about it. In the case of this new mom, I was thrilled that she lived quite nearby as well and offered to help her any way I could. I also think it would be nice to meet another couple with a baby with FPIES and for Matthew to have a friend with FPIES so as he grows up he wouldn't feel so different. Any play-dates would be a dream come true! No need to remind people to wash hands, eat in one place, avoid cross-contamination, clean food areas immediately, not feed any trigger foods, watch for reactions, continually explain what FPIES is etc.

Her anxiety and barrage of questions reminded me of myself, brought me right back to those days, early on, and reminded me also of how alone I felt. In a way I felt lucky because her son's case seems to be more complicated (chronic) than Matthew's (acute). But, it also highlighted how much better I feel now. If there's any advice I can give you, and I know you might not be able to accept it right now (because I couldn't at the time), but just know you are not alone and there is light at the end of the tunnel. I do hope this blog helps you too.