How Do You Do It?

“I don’t know how you do it. How do you manage to deal with Carter’s condition day after day?”

I have heard these words many times from many people in regards to Carter’s FPIES. They wonder how I do what I do every day. They try to put themselves in my shoes and imagine themselves living a day in my life. But it is not my shoes they need to step into. It is not my life they need to marvel at, it is Carter’s.  How does Carter do it every day? How does Carter deal with his condition day after day? Those are the real questions.

I am a grown woman who is capable of understanding, rationalizing and adapting to the situation. But FPIES has not happened to me. It has not made me different from my parents or my family. It has not changed my initial experiences with life or altered my formative years.  But this has happened to Carter. I wonder every day how much of this he’ll remember. I watch him look at his brothers and I know he knows he’s different from them. Carter knows his food is in a different part of the kitchen. He knows the milk in his cup is not the same as the milk in his brother’s cup. He knows that mommy makes him a different dinner than the rest of the family. For as long as FPIES is a part of his life, Carter will be different. Both of his brothers went to preschool when they were 3. Carter may be skipping preschool altogether to avoid triggering another reaction. For his entire life, he’s watched his brothers go off to school. I wonder when he will start to ask to go too. 

Carter will be 18 months old tomorrow and he is entering a whole new world of experiences in toddlerhood.  This is not the world of infancy that Carter has sailed through with high spirits and happy smiles. The differences will become more pronounced, the limitations become bigger obstacles. Again, I wonder how he will handle it all. He was born with amazing inner strength and a smile that instantly puts a room at ease. Carter keeps everyone in his little world smiling, even in the darkest of times. It is because of his smile that I am able to do it. But how long will that smile remain? Will the realities of FPIES wear down his strength and blur that beautiful smile?

We used to be able to say that this way of life was all that Carter knew. He wouldn’t miss something that he never had. But we can no longer say that. He knows there is a different way of life, and he knows that living that way could cause him severe pain. He is an amazingly smart little boy who embraces the positive aspects in every moment of his life. He smiles at the world and welcomes every day with eagerness and excitement.  It is not about how I deal with my son’s chronic illness.  It is really about how Carter does it, everyday, day after day, with no malice or animosity. So, Carter, how do you do it?