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."
Tuesday, September 13, 2011
Fully Rely on God
The day had gotten so long, and I was so weary. I even went to bed "early" (9.30)- just didn't have any more to give, my babies were all sleeping, so I gave everything to God- assured that I would wake up refreshed and renewed, that God would give me the strength to keep fighting this fight....to keep fighting for our Little man's voice, and not only his voice but the voice of so many other kids who experience many of the same symptoms he does with foods- symptoms that don't fall into where the research has been for FPIES, symptoms we're not sure if/when the research will cover; but more and more I read and learn about these symptoms being recognized and tied together. I am hopeful. Research takes years, and it takes multiple studies to create evidenced based medicine from. FPIES research will benefit most from multiple Food Allergy Clinics and Research centers as well as published papers from physicians learning about this horrible food allergy. It is comforting to know that there are already food allergy clinics all over this country, doing active research right now. Doctors all over the country (and world) are learning more about FPIES, and really good and compassionate doctors are recognizing they need to learn even more. I continue to be in awe and amazement over the compassion so many good doctors have with this illness.
FPIES children now can, and do, teach doctors just as much as research will in the future and we can be their voice to help. That has been a piece of my "fight" for my Little man's FPIES for quite some time....when some doctors shot us down turn after turn, after turn- telling us he wasn't really "that" sick, or not sick at all, or even suggesting on multiple occasions that it was just me- even trying to see if his daddy would tell a different 'story'- because it really couldn't be that bad with the foods we were trying to give him, or the formula that 99% of kids tolerate and grow and thrive on.
I believe God is giving me this learning experience, (with my mouth and resolve) to use our experiences to help other children. I believe I had a "calling" to the nutrition profession, for my boys. I believe if we maintain our resolve, we can help our physicians learn one by one, about this horrible diagnosis. Personally, my resolve is to take it a step further, hearing the voices in the support groups I have been a part of (and have become a part of me), into my work with The FPIES Foundation. These kids and families need the help now, the research needs to come from as many Food Allergy clinics as it can, and of extreme importance- the awareness needs to be raised....not only to the existence of FPIES so that every practitioner that has heard of it thinks they understand it from the research that is out so far; but that they hear from the voices of the children living through it right now....that voice can be unified and magnified in The FPIES Foundation....a place for support, education and empowerment.
Now, why did I name this FROG's? My 4yr.old's first day of preschool was yesterday. The concept they learned was FROG: Full Rely On God. It was the message I needed. A gentle reminder that He is in care of everything. "....above all, remember....act as if everything depended upon you, and pray as if everything depended on God" (SH Payer). I pray everyday (and continue to ask for prayers from everyone) to give our Little Man the health he needs to thrive, and his daddy and I the graces for strength, wisdom and resolve.
Full Rely On God....simply concepts, vast meaning.