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, June 14, 2011
The support started early, the irony of a social networking sight...yes, I'm talking Facebook.
Who would have thought Facebook would be such a support arm for me for such an isolating diagnosis? Not me. 2am darkness, isolation, can anybody hear my cries for my baby? The doctors were not hearing. Friends and family were. The support from the beginning has been the humbling experience of a lifetime for me, I can't imagine forgetting what it felt like to know everyone who knew me, who heard my words, trusted them and trusted me....that if I was crying out for help- I meant it, I needed it. Heard in my "voice", my plea for strength, and wisdom, and prayers...all of which I received- family and friends not all living near but always close. A gift of community, a gift of family, a gift of friendship. A darkness given light. I wish I had adequate words to describe how much this has meant to me.
Recently, my sister gave our Little Man a Benefit (where do I even begin to show gratitude to my sisters for helping me in the trenches....for helping our family dig out of the trenches -- or at least get good breaks from them!). The financial trench is a deep and wide one, and although we don't like to think about the money when it comes to health....our little boy's health is priceless. Finding the right doctor, the right foods, being in the hospital, paying for his formula, making our own formula with special ordered ingredients, many months of caring for a constantly crying baby - while trying to meet the needs of 3 growing boys....all take their toll on digging that trench further and wider. Again, a cry out- this time given in support and financial assistance as well as fund raising for awareness and answers for this little known, yet so severe, allergy. Where do you find words to give thanks? I pray all that have helped us, helped us dig out of yet another trench this diagnosis has put us in, not just knows but feels our gratitude.
No one has ever disappointed us, in fact many have surprised us....praying just when we need the strength and graces from Above, offering a hand when we need it most, providing a shoulder when the load was so heavy....there has always been someone there. God has watched out for our family, given us the graces to get through each day- the good and the long.
We are so blessed....