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?

Lessons

Things FPIES Has Taught Me . . .

·         Two year olds have more compassion than the average 30 year old.

·         Walking around wearing a shirt with vomit stains really isn’t that embarrassing

·         It is possible to go a whole day with poop on your shirt and not know it and not care

·         Doctors are human too, which means they are fallible

·         Doctors don’t keep up with the latest research in their field of expertise

·         Crumbs are scary

·         “A taste of this won’t hurt” is completely untrue

·         The internet is amazing. You really can find anything!

·         Mommy instinct should always be acknowledged

·         Poop really is a four letter word

·         The American culture is completely intertwined with food

·         Support is essential to sanity

·         Passing a food feels like a kid on Christmas morning

·         Failing a food is heartbreaking

·         Just reading food labels will not keep our kids safe

·         Seeing your child’s face covered in food can bring tears of joy to your eyes

·         A birthday cake doesn’t have to be made out of flour or even food

·         Every sunrise is a chance to start over, full of possibility

·         Strength is tangible

·         Sleep is optional

·         It’s amazing how creative you can be with foods

·         No matter how many children you have, you are never prepared for this!

I’m sure are more, but this is a start! Any others that you want to add? Add them as a comment!

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.

Come out come out wherever you are!!!

The more I research, the more soy I find. I find it in things that should never contain it in the first place.  It’s in our soaps, our baby foods and even in the wax that is put on our fruits and vegetables can contain soy. I have worked so hard to rid Carter’s diet of all offending foods.  I have taken away all the foods that I know to be bad. I have spent countless hours reading food labels and coming up with new menu ideas.  I have bought all the right soaps and lotions.  Yet, it doesn’t seem to matter.

We are still dealing with random and unexplained diarrhea diapers.  They only happen once or twice a day, but they burn his skin and cause him pain. As soon as I pick him up and tell him it’s time to change, he starts to squirm. It is not a playful or even a stubborn squirm.  It is the all too familiar, “Mom, this is gonna hurt” squirm. He cries and pulls at his legs while I wipe him. Once he is clean and gets his new diaper on, he’s back to his happy self.  I wonder if this is our “normal”. Is this how he will live his life? Is there really nothing more I can do?

Carter had some cantaloupe not too long ago. I thought this was a safe food for him. I was wrong. Within a couple hours, he was screaming in pain. It lasted for an hour before he finally went to sleep. The next morning his diaper was full of cantaloupe with small streaks of blood. 

Blood. It is never supposed to be in your child’s diaper. The first time it happened, Carter was two weeks old. It was several small streaks.  At it’s worst, Carter was about 9 months old. I opened his diaper and it was full of bright red blood. Raw, hot fear filled my body. I have never felt anything so strong. I cleaned him up and looked for the source, sure it was just a case of bloody diaper rash. There was nothing on his skin. The blood had come from the inside. I spent the rest of the day staring at my baby, waiting for the problem to worsen. We were lucky. It never did. But it ignited the fear deep in my soul, a fear that clawed it’s way through when I changed that cantelope diaper.

I am not sure whether it was the cantaloupe or a crumb off the floor.  I have noticed that whenever I reintroduce a food into Carter’s diet, even a food I thought to be safe, he has some sort of reaction. It is not a severe reaction, but a lesser one involving bad diapers and screaming pain.  It seems as though his system is rejecting all foods other than those he has on a regular basis.  Is this initial reaction normal for an FPIES child? Should I push through and see if the reaction worsens? I cannot, in good conscience, do that. If his body is rejecting the food in a small way, why would I push to see if it’s just an introductory phase, risking a full blown reaction?

I do not like the helplessness that has overwhelmed me. These are the moments where I feel that I will never help my little boy to be completely pain free. I will never know exactly what causes his pain or how to help him manage it. These are the moments where I think that I’ll be sending him to college with a list of safe foods he can eat. I know that in these moments, the best thing to do is allow myself to feel these feelings and grieve through this because at the end of it I will find the strength to keep moving through this maze and find a way out.