Pay It Forward

FPIES can be a very hard thing to deal with...  There is a lot of uncertainty as a parent (particularly a new parent) as to what to do.  There is also a lack of support and information within most of the medical community.  Add on top of all of this a lack of understanding from friends and family that must be overcome with education provided by the family with the FPIES child (I understand why this is - FPIES kids look so healthy on the outside that until you witness an "episode" first-hand it is hard to believe they are sick) and it leads to anenormous amount of pressure felt by the family diagnosed with FPIES (yes, when the child is diagnosed the whole family bears the weight).  These pressures often lead to a sense of isolation.  Not many others really understand what the family is going through...  For my family, this weight has been easier to bear because of some amazing women who care.

FPIES has taught me more about community and compassion in the last 4 months than I learned in the 28 years of life I experienced prior to having an FPIES child.  Thanks to the internet, there is an entire online community of FPIES mommies who provide information, support and resources to one another.  These women have become my heroes.  There is no telling how many trips to the emergency room we would have experienced by now were it not for these women, and no telling how many times Braxton would have gone through shock.  There is also no telling how many days I could not have made it through without these women.  They have prayed for us, cried with us, and been there to give us advice.  They have never judged me nor laughed at the often ill-informed questions I have had.  One of them even sought me out when I had no clue the severity of the situation we were dealing with.  Had she not mentally prepared me for what was coming, I don't know if we would have made it through (Thank you, Joy)!  She even helped us to get our appointment in New Jersey.  The amazing part is, she did all of this while she was fighting for her FPIES child every day.  Another mom, Fallon, has provided me with tons of information on how my family can get assistance with the enormous cost of Braxton's formula.  She also has pioneered efforts to start the FPIES United Family Fund so more research can be done to help find a cure for these children.  These are only two examples of the many amazing women who have stepped-in to help my family;  Women I have never even met... These women helped me to stop being afraid to speak-up for my child and have walked me with me through some of the darkest moments of my life.  They have been our lifeline.

After finally getting an appointment in New Jersey, I asked one of these moms how I could be of service to her family.  After all, she has done so much for mine...  Her reply, "...share your story, raise awareness, help another mom that will come along and read your blog and posts... pay it forward!"  This is the reason I have started to blog: to keep the network of support going; To attempt to repay some of the kindness that has been given to my family.  I can only hope that by sharing my family's experiences, I can help another mom who is searching for answers or another mom who is in desparate need of understanding and support as I have often been during this journey.

Thank you so much to the many FPIES mommies who have taken the time to share your experiences, research, advice, prayers and support with me.  You are some of the most amazing women in the world!