Mothers Intuition

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."

Sunday, February 20, 2011

Doing All Right for the shape I'm in....

Ok, it's no secret...I like music...as do the boys.  And I guess country pulls at my heart strings the most..
The song "The Shape I'm In" by Joe Nichols always makes me think of how FPIES is such a silent illness.   How Little Man can be so sick on the inside but not show it on the outside....doing all right for the shape he's in...

It also makes me think of how much this illness takes from him....but how much he continues to give....doing all right for the shape he's in....

And finally, it makes me grateful for how well he really is doing, in spite of FPIES.   Developmentally, he is on track, socially he is on track.  Especially with a "malnutrition" diagnosis- Little Man has had several developmental evaluations and he always surprises everyone with how well he is doing....in spite of how much he has been through.   You read his chart, and expect to see a very sick and skinny little boy and instead you see a bright eyed, curious, active, smart, perfectly proportioned little boy.  

The song is not about a sick little boy with a rare illness. Actually it is about military wounded.   Our country's strongest men.  Our country's hero's.  Never give up.  Keep going....it will make you stronger.  

Little man may be wounded by food at this point in his life, but one day- one day, this will all be behind us.   And we will thank FPIES for the strong man our little man is in spite of, because of,  FPIES.  We will thank God for putting this in our families path, for giving us the strength and graces to go through it.  For giving us the love, prayers, and support from family and friends at times when we needed it the most.  We will get through this....we have Faith.

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