I've just been so busy, which I know we all are! Little man's FPIES and complexities take a lot of research and creative endeavors, thinking outside the box, comparing 'notes' with other families, looking for additional specialists to help as we encounter new challenges or revisit old ones....
The other day, I was reviewing the pronouns "who" and "whom" and their correct usage (in our home school curriculum) and the famous "Who's on 1st" skit from Abbott and Costello came to mind. I was excited to share this with my oldest son, who quickly caught on to their humor and we ended up watching a few other skits (thank you YouTube once again); and this one came up...."Hold the Ghost".
And all I can think of is how closely it makes me think of how FPIES makes one feel. I was JUST talking to a fellow FPIES mom about this the other day- how it feels like you're shouting and no one can hear you, or talking a foreign language that no one understands and everyone just looks at you like you're crazy, or maybe even worse- with the deer-in-the-headlights look. You are completely alone, you are spurting, banging the table, barely breathing, yelling in your head and yet- the words are not coming out, the sound is not even there. Help me, someone help me....I'm so scared, my baby is having scary symptoms and is in pain...and I don't know why or what to do about it. So, you wish you could just get out of this haunted place but there is no way out -- if someone could just help you read the map; so you're assigned someone to help you read teh map but they are strangers to this place too and can't quite read by this light, and again you find yourself spurting for words, gasping for breath....and then finally a burst of sound comes out and everyone is looking and the phenomenon settles down....and you look crazy. And then, while everyone is watching closely for the phenomenon to reappear as you said it would, something else pops up in another place and again, you're left voiceless and grasping not only for breath to breathe but the voice to be heard. And finally, someone nods their glance your way- and the phenomenon settles down again; and you are assured that someone else understands but do they really? "Everything is alright". And you look at the map again, and try to find your way....comparing notes with the others in the room. One day, you'll find the way...
