To the Parent of a Child With FPIES

To the parent of a child with FPIES (food protein-induced enterocolitis syndrome),

I think about you, and pray for you daily. I see you. I feel your frustrations. My heart truly aches for you.

Today your child may accidentally eat something they can’t have. They may vomit so much you have to rush to the hospital. And it will scare you more than anything in the world. But you will get through it.

Today your child may ask for a food others are eating and you will have to say no. There will be tears. Your heart will break in a million pieces. But one day soon, your child’s comprehension and maturity will amaze you.

Today you may feel like you have neglected your other children because you are constantly dealing with doctor appointments for your FPIES baby. But you will see how FPIES gives your other children empathy that they would have never had without FPIES. At a young age, they have learned to embrace differences. And for that, you are grateful.

Today your marriage may struggle. You may not agree on food trials or doctors. You may struggle with finances because you need to buy special formula. You may find that all you talk about is how to heal your child’s gut. It is consuming and draining. But you will find that your spouse is the only other person who truly knows what it’s like to walk these shoes. You will learn to cling to each other, support one another, and your marriage will grow deeper and stronger.

Today, your extended family or friends may think you are being extreme, or they may give you the most ridiculous advice. You will shut down. You will shut people out. And that’s OK. One day you will see that most of them had the best of intentions, and one day they will realize that you were always trying to do what was best for your child. Forgiveness will heal those aches.

Today you may have someone call you a bad parent because your child is eating potato chips for breakfast – solely potato chips — because it’s one of three foods that he can actually eat. You will be hurt, angry, and frustrated for being criticized. But you will learn to look at others differently. You will learn to never judge other parents when you do not know their situation.

Today you may be on a restricted diet yourself because your child reacts to your breast milk. You will get angry that you cannot eat many foods, but then you will look at your child’s sweet face and you will feel a part of motherhood that you have never felt before. This will give you strength to go on.

Today you may call the insurance company to beg for them to cover your child’s elemental formula. You will cry to this lady and tell her how unfair it is that your child cannot eat any food or drink regular formula. You will tell her how you cannot afford to pay for this extremely expensive formula every week. Your begging and crying won’t change the answer. But because of the insurance denial, you will have loving doctors give you bags full of free sample cans. You will experience a kindness you never knew existed when complete strangers send the formula when you needed it most.

Today you may feel like you are the only one going through this. You will feel so alone. But you will soon find that social media can be a good thing, and you will join a small community of other FPIES parents for advice and comfort. Complete strangers you have never met will not only become your friends, but your lifeline when it comes to anything FPIES.

Today you may sweep your floor 40 times to make sure there isn’t a single crumb your child can pick up and eat because just one crumb can send them to the ER.

Today you may feel like you are drowning in tears because your child is falling off the growth chart and you have no idea how to provide nourishment.

Today you may pack a homemade dinner for your child to bring to a restaurant because they cannot eat out.

Today you may make two different dinners and your child’s dinner will have to be specially prepared in their own uncontaminated dishes.

Today you may watch them have to turn down another treat after a soccer game because it’s not safe.

Today you may feel like you are losing your mind. And you will feel this way over and over again for the next few years.

That is OK. Give yourself grace. Before you know it, this FPIES life will become habit.

You will struggle. You will cry. You will wonder if your child will ever eat food, ever have a real birthday cake, or enjoy a slice of pizza. But you will find strength.

You will feel empathy for others you have never felt before.

You will watch your child overcome adversity with perseverance and grace.

Your family will become closer.

You will become an educator and an advocate.

You will all be stronger, kinder, braver, more patient, and more sympathetic.

You see, FPIES will change you, and it changes you for the better.

So hang in there my friend, you will get through this. You are doing an amazing job.

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Getty Images photo via -slav-