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."
Saturday, April 16, 2011
Little Boys & Big boys...
The big boys have shared a room since they were the little boys' ages (3 and 1)- even if we have the extra room in the house, we feel it is important for their brother bonding to share a room....even if they do put the invisible line down the middle of the room!
When our T. (our third son) was born, he had his own room, for a bit; but once we found out we'd be adding a little man #4- we knew the arrangement for rooms would be nicely divided: Little boys and Big boys.
The little boys shared a room for only a few short months and then Little Man's sleep was becoming increasingly disturbed. We decided, for the rest of everyone, that we would move his brother into the room with his big brothers....just for awhile. We put a twin bed in Little Man's room and the nursing/co-sleeping began.....until we were down to a few mere hours of actual sleep a night before his sleep was just too disrupted from pain. We've done a lot of night time dances....living room recliner, living room couch, living room floor, if he would've slept in our bed- I would've done it in a heartbeat but he didn't like our bed!
All this time, his brother is still in the big boys room. We made the best of it, the big boys- although too big to admit it- enjoyed story time as we had done in years past with them- in the days of Dr.Seuss and Berenstein Bears- before Boxcar children and Magic Treehouse. Nighttime prayers while cuddled under warm covers, everyone all in one room; with no fear of waking Little Man with our night time routine.
A few months ago, desperate for more sleep, and to establish good sleep habits at the same time. I, once again, moved the twin bed into Little Man's room. There is where I slept, no longer nursing him, but assuring him that his room IS where we sleep, is where we are comfortable and safe. And, specific to Little Man, right there to warm up a middle of the night bottle when it is needed (and 2-4 are needed through the night to maintain his weight). A few weeks of this and Little Man has finally started to sleep better, or at least not be so scared or lost when he does wake up. He wakes because he is hungry (outside of food reactions- those remain long nights of disturbed sleep and tummy aches).
The other day, I decided it was time to move his brother back in the room with him. The first thing T. said was "W. and J. will be so happy"!! And they were. Over a year ago, we didn't ask them to share a room with their little brother, and they didn't complain. But they sure showed their excitement when they got home from school and discovered the move! Just another piece of the everyday of this chronic illness that we don't question, that the boys dont' question, but when we can get some "normalcy" out of it, some reprieve from the extraordinary circumstances, we all have J.'s reaction "YES! Finally!"