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."
Monday, October 18, 2010
If your child has a syndrome that not many understand, and instead of being acknowledged as a syndrome of confusing symptoms it is dismissed because medicine has no answers....or worse, the parents are made to feel that it is something they are doing wrong and not something that medicine is missing, because it is easier for medicine – that functions on concrete- to be able to say the anxiety of the parents (mom) is more of the issue than the child’s actual symptoms of pain and discomfort. What affect would that have on you and your overall well being? How can this not be anxiety provoking?
FPIES is an anxiety provoking diagnosis. It is one of the things that make it most difficult from day to day.
The anxiety is fueled by so many things - it becomes a sort of PTSD kind of being. Post traumatic stress because of a pain filled baby that you can only watch and do nothing for while he cried and cried and then violently vomited the contents of his stomach, and many sleepless nights of worry and a baby in pain. Post traumatic stress from hospital stays where you were actually accused of causing this pain and distress, and poor nutritional state to this little beautiful boy -- when you were only doing everything in your human (and sometimes superhuman) strength to help him.
Food trials always bring this anxiety to the surface in me. I try to push it back down, I don't like to feel anxious and I don't like it to affect me...so I push back. Although I do find, no matter how hard I try, it is there- just lingering around. I have found ways to help with it. Blogging, support groups, learning from and connecting with other mom's going through the same things, caring people who help and provide hope, having our pediatrician follow his progress and developments with me,....It all comes down to the one thing that is best for my anxiety -- to be/feel empowered.
My anxiety has been my driving force. It is not dragging me down, it is driving me forward. I have found studying and researching everything related to my son's FPIES not only therapeutic, but empowering. I also find helping others to be therapeutic. I have been putting together information for an FPIES Resource page for families. While putting together this page, I was approached to join forces of an organization already established to accomplish this very thing. The foundation needs new mom's to "carry the torch" and I have agreed to help be one of those moms. I have had a drive to pull it altogether, to help more family's. To give resources, support and hope to family's facing this frustrating, anxiety provoking diagnosis. Awareness is educating. Education is empowering. Empowering is healing.
Watch for updates on The PIC Foundation!!