|"Once cooked, twice fried, potatoes coins", frozen and ready for their 2nd fry|
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, April 7, 2013
Saturday, April 6, 2013
April is "Caregiver Mental Health Month" at Complex Child E-Magazine. A fellow FPIES mom (Cradlerocking Mama) wrote a great article about her Tips to Thrive for Parents of children with special needs. I also recently wrote an article for their tube feeding awareness segments in February (Overcoming The Small Percentiles: Our Super Tubie). It is a great e-magazine where parents submit real-life experience and insight articles to share among other families that have children with complex diagnosis. FPIES is complex just from the shear nature of it, no test can define it, no test to find out what foods your child is allergic to, and then there are differences in how acute and chronic FPIES presents.
Insights and experiences on different and new ways to cope with this rare, and often times complex, allergy are shared graciously among the other parents going through this with us. There seems there is always something new to learn, even if you are expected to be a 'seasoned veteran". I remember the seasoned veterans on the babycenter boards when I was first logging in, how much more sure of themselves they seemed. They had learned to trust their instincts, go with their gut, follow their child's lead, learned life outside of the restrictions that FPIES can initially put on your family/lifestyle. Now, armed with the skills and tools needed, they were on to thriving with the new knowledge gained and new perspectives, but graciously continued to come back to the groups to share their insights and experiences, and even their continued frustration of some new challenge that was needing to be overcome. I remember well something a fellow mom had said one day that stuck so well to where I was at the time....give yourself time to process. Allow time to process through the new stages, the new information, the changes that may need to be made in your home or lifestyle. Not in a negative way, but in the 'give yourself time to process' and find your way to thrive scope. Give yourself time. That is what I would add to CradleRocking mama's list. When faced with a new diagnosis of any kind, or any stage in the journey, it is ok to give yourself time to process; allow yourself that.