...The baby woke every 20 minutes last night with belly pain and you're pretty sure you nursed her back to sleep 17 times. There may have been one stretch of an hour and a half of sleep but there's no way to know for sure and it doesn't make a difference because either way you feel like that sacrificial mouse your cat left on the doorstep as a sign of devotion. As you slug your third cup of coffee to fight back the waves of hopelessness on this millionth night in a row of crap sleep, you pause to utter a prayer that it's not the coffee…."Please God let it not be the coffee that she is reacting to!! It can't be the coffee. Do they grind other things on the equipment? What type of oil are the beans coated with?? What else goes into the roaster?? What grew in that soil BEFORE THE BEANS??!!" As you make a mental note to locate and email the growers and processors of your favorite coffee beans you realize that the coffee comes from Honduras, and that it will be impossible to speak to the farmers in Honduras because 1) you don't speak Spanish anymore, and 2) you are far too tired to explain why you need this information. And come to think of it if you actually had the farmer on the phone you may end up crying to him about how disconnected we all are from nature and that is most likely why we are having these problems with our babies anyway.
This is what life looked like in my house a year ago, and it could be the life of so many parents of kids with FPIES. The level of sensitivity happening inside of these children is difficult to grasp even for me, and I am looking at it every day. FPIES has dished up some serious mind games that have misled and confused us at times. In my experience it has been nearly impossible to follow food reactions as clues in solving this puzzle. So much so that we recently decided to go back to the beginning of the GAPS diet protocol to see if we can heal this little girl's insides properly. We have been dancing around the diet and doing it halfway for months. Now it's time for her to have the complete healing she deserves. If I look at it as a clearing of all she has been carrying for two years, it feels like a fresh start.
More on that soon, but on this Global FPIES Day I want to shine a bright light on all parents who are holding, carrying, and loving beautiful children with different needs. I know that the walk can be lonely and that it's easier to not talk about it sometimes rather than to risk feeling overwhelmed or misunderstood. Connection and community have been so important to me and I want to share a piece of that with you. Today I am reaching out to say I see what you're holding and I know it's a lot. So give yourself permission to take care of you too. Take a moment or a day or a week or whatever the heck you need to feel whole. Because this work is not for the faint of heart.
"Healing takes courage, and we all have courage, even if we have to dig a little to find it."
- Tori Amos