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, August 8, 2010
Speaking of Support....
Simply put, I am not sure how we would be getting through all of this without the support from family and friends. Too many FPIES mommy's talk about how their family is unsupportive - mostly because they simply can not comprehend such a food allergy as FPIES. I am grateful everyday when I can turn and find support from so many directions: sisters who move in to help out, sisters who drop everything to be here when needed, family who calls or is available for a phone call to hear (yet again) another segment of little man's symptoms and struggles, friends who check in DAILY - just waiting for the day when I had good news to share, friends and family who remember us in their prayers and prayer groups, colleagues that pick up extra work because of my need to stay home with my ill child, colleagues who give great support and advice for a child with multiple food allergy's, our firefighter "family" continued support, neighbors who are available for babysitting and all the family and friends who have been a listening ear to my anxiety filled days when my little boy was so sick and no one knew why or how to make him better.
Thank you to all our family and friends that are helping us through this difficult time in our little man's life.
Another great avenue for support (besides this blog and my facebook page) has been the online support groups I am a part of (ok, I am a big part of - sort of in an addicted way!). The other FPIES mommy's have SO much knowledge, experience, insights, and just empathy for going through shared experiences. I have "met" so many great moms (and FPIES kiddo's) this way. I have found a few that live near us even! But there are one's that live across the country- and also across the ocean! We share a common ground and speak a common language- so much so that often feels like they are following me around, our kids go through so many of the same things!
That will bring us right into my next post....Mom driven diagnosis....