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."

Monday, July 11, 2011

From the outside looking in?

I am the mother of a special needs child.   He doesn't look it from the outside, but he has special needs to maintain his health.   He has special diet needs, special allergen needs.  Special needs to keep him thriving on his restricted diet,  to avoid his very severe and sensitive allergens, to ensure adequate caloric/vitamin/mineral intakes while on a restricted diet, to monitor closely for signs of intolerance's to new additions to his diet...

We have had to lead a fairly sheltered life due to Little Man's needs, although with 3 other active boys, it doesn't always feel like it!   That is until we are in situations where we are not sheltered and and then I can't help but wonder what it looks like from the outside looking in....

....what it looks like for a 2yr.old to be drinking from a bottle?
....what it looks for a 2yr.old to be on an infants schedule?
....what it looks like to be dining out, feeding our other boys but not allowing Little man to even touch the food, especially if we haven't brought his millet puffs or have access to ice?
...what it looks like to have to leave in the middle of a function or event because of the needs of Little Man?
....what it looks to decline a function/gathering altogether because it involves too much food?

We were at a restaurant recently (while traveling) and I caught the glances of a father with 2 young children, and later said to Little man's daddy, "I wonder what other people must be thinking when they see us sitting down to eat and not feeding Sam".  To which he, in his wisdom, replied, "who cares.   What does it matter what other people think?  We are doing what we know we have to do to keep him safe".  Which I know, but it still makes me wonder....


  1. I totally understand what you are feeling. I think the same way. My LO is 11 months. Its so hard to go out to eat or to functions and not be able to feed her. I have been wondering what people are going to be thinking when they see her with a bottle still after a year. Her EleCare is her main nutrition. She only has 4 safe foods. Turkey, Banana, Apples and Strawberries. Just know that there are lots of mommy's that feel the exact same way.

  2. Looking @ that picture, he looks like he's a great, happy boy! Doesn't look like he's suffering at all. I know our LG hasn't had FPIES for long, but in no way are we going to 'pigeon hole' her into thinking she is 'special needs'. You gotta be more optimistic about this! I've seen special needs, I have a friend that adopted an autistic downs-syndrome boy from guatamala, that had my friend not acted, he probly wouldn't have lived past 5, who is now 12 years age & does not let his challenges hold him back. He plays on playscapes that healthy kids would be intimidated by. Sure my wife & I know we have to be specially carefully about not letting our LG eat things at parties. Or that we bring food into EVERY restaurant for her because we can't be sure they can even prepare fruit safely, but we also know that we can't let her think she's weaker, or needs to be afraid of trying things because of FPIES.

  3. oh Joy...this is exactly what I am working through as Ellie near's her second birthday. These milestones are hard and I just battle making her 'fit in'. Why can I not enjoy her for who she is and who God made her? Because everyone else fights it and it makes it that much harder. I want that 'dad' ability to say 'who cares!' Because more than anything that is what I want her to learn. So....WHO CARES! :)