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."
Sunday, October 24, 2010
Just a mom wanting to be heard....
Sharing this website again. A good resource for Rare Disease support. Just a mom wanting to be heard, that has been me for months. To see there are so many other mom's experiencing similar things (with other illnesses) is disheartening and encouraging at the same time. Encouraging that I am not alone, but disheartening that others' are not finding the right avenues to navigate with doctors to hear the cries of a mom for her child.
I do tire of the "fight"....I wish it didn't have to be such a fight to just have help for a child with an illness- even if rare and little understood. I struggle with the "why does it have to be this way"? I just don't understand why someone can't hear me, what I am not saying- what am I portraying wrong? Is my patience being perceived as my son being healthy and not really needing the care? I know it is a rare illness and a clinical diagnosis and I have tried to be patient. But the fact that little man's illness becomes more complex is driving me to 'push' more - not only for him but for his brothers....who all deserve some normalcy in their lives.
Normalcy that can come, despite having to cope with a chronic illness. Normalcy I can provide, coping I am doing....but everything I could do better and with a less heavy heart if there was more support regarding his unique illness and needs surrounding the complexity of it. But my mind does not turn off....always planning next steps, always worried about next steps, always wondering if he will get more and more sick if we don't continue to find out the right things to do to help him. Always researching of what those right things might be. Research more and more about allergies, about digestion, about nutrition, about food families and carbohydrate intolerance's, and now also about how to get a toddler to put food in his mouth when he has not had food for 8mo. and textures and tastes are becoming foreign. And then when he does put it in his mouth, his stomach cramps he associates the eating with pain....and maybe he trusts me a little less.
Tomorrow, we have hope. We see a new GI doctor that has managed a few FPIES cases over the past few years.....although likely none as complex as little man since he works in conjunction with Allergist #3 and that was his comment when reviewing little man's history. We will hold on to to hope that he can provide us with some support for continued management of this illness. The missing pieces in the management of this illness involves just a mom wanting to be heard....