Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Tuesday, June 22, 2010
What normal looks like...
We try so hard to maintain some degree of normalacy for the other boys...although they do recognize, and are very understanding of the need for our new normal.
My 7yr.old has enlisted himself as little man's personal guardian -- he is building up instincts of his own. He caught little man with a handful of his 2yr.old brothers M&M treat today...I don't even know what made him think of stopping what he was doing to go and check on his little brother but he did and the next thing I hear is "NO-NO-NO!!". Of course, I go running -- pracitically dropping the phone call from the pharmacy that is helping me get corn-free compounded medications for little man today to find that he had a handful of brightly colored shapes. Their daddy had gotten the older boys a treat while out today...but forgot that there was leftovers in the van that was left open in the choas of getting ready for the game and switching carseats and letting the van air out because of the sweltering heat out today. Little man, all boy, loves to pretend to "drive" the van and will grab any opportunity to do so. He has been/is going through so much, I'm not a pushover mom type but I'm not terribly inclined to take away the little things that make him smile. I don't know what made his big brother think to check on him but I am thankful he did- the candy had not even melted in his hand yet--or made it to his mouth. Peanut M&M and choking hazard aside....an M&M ingestion with a dairy intolerance would really set us back.
Close calls are better than accidental ingestions....we've come a long way...but we are reminded that we still need to work on our adaptations and safe environment at home.