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."
Thursday, February 17, 2011
After ten years in the military and now five years as a firefighter, I would like to think that I am one of the most resolved persons you would ever meet. I tell the boys that no matter what, we never quit. That dose not mean you won’t fail at some things along the way. If you learn one thing every time you fail, you have not failed. You take that knowledge that you didn’t have the last time and you go at it again, and you never quit. If there is something in your way, you go around it, over it, under it, and through it if need be. But no matter what, we never quit. My wife has taken this train of thought, that I thought she never cared for, to a higher level that I didn’t think possible. So many times I have sat in a room surrounded by the most educated doctors telling me how we need to treat little mans condition. And so many times I have thought that these doctors are the most educated stupid people on the planet. But as they corner us, tell us what we have to do, and try to scare us with horror stories of tubes and malnutrition. My only thought is to knock them on their butts, (through it attitude) because I know what they are telling me is wrong, what they want to do is only going to make little man worse. In steps my better half. Not really better half, more of a better me, period. My wife has in my eyes become the foremost expert on FPIES. She has spent the better part of the last year standing toe to toe with everyone that stands in little mans way. When the doctors start thumping their chest and say we have malnourished little man, my lady thunders right back. Not with pure insults like her husband, but well educated resolve. She has become the only lifeboat that little man has in his storm of FPIES. She has read and reread hundreds of medical files, tests, and everything else she can get her hands on. Sought out people across the nation for answers, and now she is in New Jersey steering little man to a place of hope.
My dad will always be my Hero. As a father of four young men it is my fondest dream that my boys would look up to me, like I did to mine. I grew up with mild to server asthma. I remember the skin testing on my back, the IVs, and my dad always slumped in a chair in my hospital room when I woke up at night. It was my dad that would run into my room with my inhaler during an attack, counting off with his fingers to show me when I could stop holding my breath. Recently I have found that my dad is not my only hero. Doctor visit after doctor visit I have seen little man weather everything thrown at him. It seems he has given up more blood to tests then I have donated. It didn’t bother me the first time or the tenth or maybe even the fortieth time I had to hold him down during a blood draw. Now I can barely stop shaking every time I have to do it. And yet after every test little man grabs for me calling my name, looking for comfort in the one that was helping hurt him. I so desperately want to be the hero for him that my dad is for me. But I have it backwards, little man is the hero, and not only him but my family as a whole. My other three boys have given up so much during little mans journey. Through it all they have not once said anything bad towards little man. It seems little man and his brothers are connected in a way that maybe I will never understand; connected in a way that only brothers understand. Lead by four little heroes and one resolved lady FPIES is an illness that can be overcome, because these five people will never quit. Have hope.