It does not define us...

It is natural to pull away from things we don't understand, even to be a little afraid.  A friend/family member has a little one with a chronic illness too complex to keep up with, so you don't say anything because - where are the words?  The words they lacks to explain how it feels and the words you lack to express how much you care.  What if you say the wrong thing?  What if you say something offensive?  

Let me be the voice of a mom of a child with a chronic illness and say that if your thoughts, prayers and encouragement are coming from a place of love and support- there is no such thing as saying the wrong thing.   Your words will never be offensive, your encouragement will always be appreciated, and your prayers will always be felt.  

I have a dear friend, who in the beginning of this- didn't ask how she could help, she just helped in ways she would want to be helped if it were her in the situation.  She has stayed by my side through all the many ups and downs of this chronic illness of my son that has rocked our worlds.  She grounds me, she knows "Joy" is still there- even if buried under the weight of FPIES some days.  We talk about "normal" things in life...and I enjoy it.  Not only do I enjoy it, I am thankful to her for it.  I still have "normal" things to worry about, to get done in a day, to think about...I have 3 other boys with all of their individual growing needs and personalities; I have a husband with whom I share a history stronger than a chronic illness but it still bends us some days; I have a large extended family who, without their compassion and understanding of our place right now, we would fall apart from; I have supportive friends- near and far, whose support and prayers we feel daily. 

One of the main reasons I want to do the benefit for Sam & FPIES is to raise awareness, not only of what FPIES is and looks like for those that don't know; but of what our life is within it.  To help others understand it even more, and that even though it encompasses a large piece of our everyday lives right now - to keep Little man thriving, growing, and happy; it does not define us.   We are just a family- made of the same people we were before FPIES- wading our way through this in the same ways anyone would if they were in our shoes.