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."
Wednesday, May 30, 2012
How to Help an FPIES Family
We are so fortunate that our friends and family have been so incredibly supportive through the many stages of this journey. Family, long time friends, new FPIES friends and even those whom we know nothing about.... There have been times when I read an anonymous comment on this blog and wonder if that person even realizes the impact of their kind and supportive words. There have been times when we have received anonymous and not-to-anonymous donations to help us through some rough times providing for a family through a chronic and rare illness. How do I even convey what these gestures- no matter how seemingly simple they may seem to the giver, mean to me- to us. Nothing goes unnoticed or unappreciated when the small things are the big things- like an illness that takes away your ability to feed your child.
If you're looking for a way to help and need some idea's, please read How to Help an FPIES Family Today
And thank you for all you do for our family, for your kind words, for your prayers, for your positive thoughts and comments left on this blog and sent in e-mails, and for the monetary donations for our family or for The FPIES Foundation to help them help other families, and for the time spent helping us with our other boys, and for the RV loaned for the long travel to specialists, and for the weekend (and longer!) visits to help watch our boys, and for helping purchase the Vitamix that now makes Little Mans' food every.single.day, and for the grocery help,and for the acceptance of our restricted schedule and our special needs to keep Little Man safe, for the care packages sent to his brothers- especially when he is in the hospital and our attention is so divided and energy drained; and for watching our boys while we go to appointments for Little Man or picking them up from the bus, and just for simply understanding the adjustments we have made to help our Little Man thrive, and for multitude of other ways you have helped!