The Love of a Boy

Today was a big day.  It started out great! Carter woke up without being covered in poop for the first time in over a week. No 8 am bath. No stripping the bed and airing out the room. He’s been so happy today too. Running around and pestering his brothers.  It was so nice to see the happy Carter this morning.

 I also sent out a message to our allergist for some insight on Carter’s most recent food fails. He has successfully passed both banana and cantaloupe in the past. He hasn’t had banana in over a month because I was worried that he was getting too attached to them and wasn't interested in eating anything else. So a couple weeks ago I gave him some banana again. He was such a happy little guy. He was walking around the backyard with his banana, all smiles. Unfortunately the happiness didn’t last. That night he screamed for an hour and a half, completely inconsolable. He had a rough night of sleep and a horrible diaper blow out in the morning.

It’s the exact some story with the cantaloupe, so I was hoping the allergist could help, or at the very least ease my concerns.  I sent the message first thing this morning and got a prompt response back. But it wasn’t anything other than helpful. She didn’t tell me anything I didn’t already know. There weren’t any suggestions or thoughts as to why this happened. Instead she suggested not giving him the food anymore or giving small amounts. Really?!? Hadn’t thought of that one. She also mentioned that fruits can cause generalized tummy upset.  Ok, well when his diet is mostly fruit, what am I supposed to do about that? Her e-mail emphasized in capital letters that this is not an ALLERGY. Every time she used the word it was capitalized. I am not a child, but the e-mail made me feel like one.

FPIES is so much about the search for continuing support from the medical community. It’s a constant desire for a doctor to help you find the answers and help determine the next steps. It is not about dismissing a child because he is gaining weight or because his chronic illness does not pose an immediate threat to his life. Instead he faces the threat of a build up reaction, the inability to absorb adequate nutrition, blood loss through the GI tract. So maybe if he gets so sick that he can no longer gain weight or eat, then the doctors will take him seriously.

It was just more than I could take. I was deflated and defeated. The emotions overcame me and I just sat on the floor and cried.  In the mist of my tears, I felt a little hand on my leg. Carter was kneeling down beside me. He lifted his little hands to my face, and pulled my hand away. “Mommy?” He saw my tears and touched them with his little finger. Then he climbed up into my lap and wrapped his arms around my neck.  The sweetness of that huge hug from those tiny arms. And once again I am blown away by the compassion and unconditional love from a 17 month old boy.  He gives me the strength and courage to keep going.He manages to smile through all the pain. He reminds me everyday to celebrate the little victories. He shines the light through this darkness.

This is why I do it. This is why I look for answers and demand help. No one should be in pain from eating. No one should be dismissed because their condition is not fully understood by the medical community. One day I know there will be tears of happiness as I watch my boy eat a double cheeseburger.  Until that day, we venture onward.