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."
Thursday, January 20, 2011
I've been finishing this post in my head with how I want to desribe what an FPIES expert is. Lets start with the definition of Expert from: merriam-webster.com: "having, involving, or displaying special skill or knowledge derived from training or experience". Well, my training is in nutrition and my experience is a 4th time mom with first-hand, deep-in-the-trenches FPIES experience.
Parents are experts in their own children, they know their moods, their cries, their personalities, their likes and their dislikes. To add to that, the parents of FPIES children quickly become experts in FPIES. We have to, there is so little known. Yes, there are studies, such as FPIES caused by Solid Food Proteins and FPIES: Case study presentations and management lessons but there is only so much everyday information that one can gather from these studies. At this time, the most I have learned is from other moms, found in online communities for support. We would all like to see that changed, so future children do not have to suffer as ours have - searching for a diagnosis, a direction, a baseline.
A few days ago, I did a post on what FPIES has taught me. Of course, having a son with a chronic illness has taught me a lot about patience, advocacy, perseverance, strength, love, and all that life has to offer. But I am talking about what FPIES, first hand, has taught me about Non-IgE food allergies, delayed-gut, food allergies. About digestion and GI health. About food, and how it is made,processed and produced in this country. All these things, I have been taught/trained in- I have a degree in Nutrition....but none of these things I understood the way I understand them now, having learned things from experience. What I haven't learned first-hand, I have learned from other moms- with first hand experiences. Connecting all this together for real FPIES information, real help.
This brings me to my daily question: if I'm an "FPIES expert"- then why is my son struggling so much to find a diet? To tolerate foods? God is giving me a very important, and strong life lesson. He sent Little Man because He knew he was strong enough to endure this- to teach me, to teach his daddy, to teach his doctors, all to help other children. He knew that with my background, and my nature to want to help others- He could use me as an instrument.
If Little Man hadn't been as sick as he was, in pain daily we would not have made the trip half way across the country to take him to an expert Allergist, if he had tolerated the Elemental formula, if we didn't have to fight with him to eat just half of his needed calories from that formula, to remain on it exclusively- keeping food from him for 5mo. with only worsening symptoms (and inflammation) - I would not have had the drive to make my own formula for him. If Little Man didn't have continued intolerance's, making his illness complex - I wouldn't have pushed for 2nd opinions and a change in doctors on his Medical Team for his care. If we hadn't done a soy trial- would we have known about the villous atrophy component of his FPIES? God is putting all this in our path, all the atypical FPIES experiences in one Little boy so that his doctors will learn and help other children; and so we will learn and pass along what we have learned in hopes of helping other children/families.
We, the moms, are FPIES experts, and the learning continues daily....