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, November 16, 2010
Quality of Life
FPIES is a chronic illness. Finding a quality of life with a chronic illness is a big part of managing the illness....for the patient, the care givers and the family. A care plan for the medical team helping assist with this is a helpful tool. What goals do they have as a medical team? What are our goals as caregivers/parents? What are Little Man's needs? What do we do to help maintain his baseline and prevent ill effects from his illness? What is the plan when he suffers these ill effects?
I have had a goal to find a quality of life that we can maintain for Little man's illness but not only for little man- but just as much for our family, for his brothers. We will be coping through FPIES and all of it's restrictions and sufferings to Little man for the next couple of years (maybe longer but Faith allows me from worrying about that far ahead), living with constant worry or anxiety or devoting all time and attention to his illness will not help him achieve a quality of life and will do nothing for his brothers' quality of life. Our recent goals have been surrounding this. Recognition that FPIES is a chronic illness, recognition that we can do everything in our knowledge and power to keep him healthy but his illness is still there, lingering around and he may suffer ill effects from trigger reactions and intolerance's to many foods, but it isn't because we aren't doing enough to help him or keep him from those reactions. Realizing that his care will take more of our time than his brothers at times (many times mostly) but that doesn't mean we aren't doing everything everyday to help them continue to thrive as well, and that Little Man's illness doesn't run the household. Realizing that we are a family and we're in this together, even if it means we all give up a few things to help Little man. Realizing that we have so much support from so many family and friends,so many people just holding us up in prayer for continued strength to help Little man.
We will always look for better ways to cope with this chronic illness that affects not only Little man but our whole family, we will always look to be better about accepting help that is offered because it is better for Little man and our other boys, we will always look for ways to accept the humility God sends us. We continue to strive for a better quality of life through our FPIES.