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."
Wednesday, April 27, 2011
But with an illness that is not only chronic but rare, my role quickly becomes nurse, doctor, and even researcher.
I have had to make many decisions on where and how I spend my time. I have to divide it between 4 children who need so much of it. They are only little once...it goes so quickly. Some recent decisions were more tough to make. As I was pondering over the many I was fighting with one particularly rough afternoon, a fellow mom reminded me to not rush my thoughts on my decisions, that it is about "waiting for things to be clear, and for doors to open and shut. Making decisions too quickly before they are clear are not blessed. Blessed choices will be taken care of."
God provides. My Faith brings me that solace, but some days I still need to be reminded of it; and perspective from a mom going through the same stresses I am, spoke very clearly to me....I was (am) moved by her words, her inspiration.
One of the many difficult decisions I was pondering over that day was my return to work. Before Little Man's illness, I was working part-time. I am very fortunate to be in a career that I enjoy every day of. My passion is nutrition, diet, and the body (in particular the gastrointestinal system)- I get to do that everyday I go to work. Not only do I enjoy my work, the little bit of help I provide to the patients I visit during their stay at the hospital, but I work with an amazing team of Dietetic Technicians and Dietitians. My son's illness is surrounded by diet and nutrition and I have been surrounded by support from day one from these fellow Dietetic Technicians and Dietitians. When I needed to be out to care for my son, I could always count on them to understand, and care, and helping me personally, and professionally along this path- sharing any information they would come across about allergies, FPIES, corn allergy, vitamins, etc. When the time came for Little man to have TPN (IV nutrition), I began my FMLA; which was followed by extraordinary/extended FMLA as his care remained complex and full-time. During this time, we tried to weigh all the options and make the decision. It was a difficult decision to make but once I let it go and waited for doors to shut and windows to open, and prayed about it....the decision came to me. I am not returning to work part-time, I will remain on supplemental staff (which I am thankful for the flexibility to be able to do so).
How will we make it without my income? I do not know, but my Faith sustains me that this decision has been Blessed.