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, August 24, 2010
I am driven because of my son's needs. I am his mommy. This is my job. My other job? I am a Registered Dietetic Technician. My life is all about food and nutrition. I now hate food. Ironic situation I am in.
My perspective from a DTR has made this both easier and more difficult.
It makes it difficult because I have seen things from the clinical perspective. I have seen kids much more sick than my little man. This is why it took me so long to ask for help. But I have a sick child too and he deserves every chance at health that any other child does. It is also more difficult because I don't always hear just what the doctors saying to a mom, I also "hear" what they are thinking as clinicians. Right now, I know they are thinking I am being reckless with my baby boy's health and that maybe I'm even a little bit crazy at the expense of keeping him pain free. And that by building him a formula, I am depriving him of nutrients yet to be identified. Little man has a clinical diagnosis- based on symptoms. The labs and tests that guage his illness are in the symptoms that the parents tell. This makes it difficult because the medical community is taught- is centered and anchored on the concretes. No one can just "take my word" and they can't "measure or biopsy pain", or measure "inflammation from pain".
Having a clinical nutrition background has also made it easier. The world of allergies is not foreign to me. The world of nutrition is my "second language". My interest, and the reason for getting into dietetics, has always been the GI and digestion component. My two worlds collide with this little known diagnosis of FPIES. I have a deep rooted faith and I know God has given this little child to me for a reason. It is because I am driven for his care that I have come this far in helping him. I am driven as a mom to help my son, I am driven as a dietetic technician to help as many other FPIES kids as I can. It's what I do, it's who I am. I am driven.