Mothers Intuition

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, March 6, 2011

Building blocks...

An creatively brilliant FPIES mom created this inspiring FPIES logo for our United Family Fund. It is a fitting logo and symbolizes so much.   And I am thankful for Amanda for creating it and to Fallon for choosing it for the Fund logo.  

To me, it is a reminder of the building blocks we are learning about our kids and this rare illness....learning together, building from one other's experiences- with food trials, with diagnostic tests, with research studies, with doctors- knowing and unknowing, with food allergies- typical and atypical.   So many variables to learn from so many families.  Too many families having to experience the same things we have experienced.  And all surrounding such a simple thing....feeding our children.

It also symbolizes us: the families- building on each other.  Every one of us brings something unique to the table- whether it is a recipe shared, an experience with elimination diets and breastfeeding or formula tolerances and food trials.  Or, if it is in fund raising for the United Family Fund for further research, or in sharing knowledge gained with other moms just beginning this journey, or exploring new paths not yet traveled on.   We are a community of building blocks.  No one person can do it all, but we all can build off each other- each bringing our building blocks forward- not placing them by themselves but linking together for the cause....for our kids....

Maybe we bring our block and leave it, placing it there for others to build on, but unable to stay with it- because we need to care for our sick child, or the welfare of our other children, or simply just enjoy a much sought after baseline with our child....with our family.    But that block placed will not be wasted, it will be built upon- added to.   And then when we come back to the blocks, we add another.  Today you care for your sick child, while another family raises money for the fund.  Tomorrow you raise money for the fund while another family explores a new path and shares their experiences.  Next week you explore new research while another family takes time with their family.  Amidst all of this, life goes on, and every few days a new family is joining the community.   We need to continue building on what is known, we need to further the research. We are stronger together.

I, personally, would not be where I am today without the community I have found and formed online with other moms.  It is the other moms I credit for my knowledge gained, for help with our puzzle pieces, for the drive to push on and on.   I thank all of you who have helped me understand and cope with this illness.

1 comment:

  1. Beautiful! Could not have said it better! I can not even imagine where my Ellie would be right now if it were not for the other moms and having a place to start finding answers and support.