Mothers Intuition

Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...

Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.

And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.

"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."

Friday, February 24, 2012

Motherhood is calling, an FPIES mom...

Last week, a fellow mom shared this letter she wrote to help her family understand what it is to be the mom of a child with life threatening food allergies:

"My son has a severe protein allergy to milk & soy. This is not the same as being lactose intolerant.  This is not the same as colic.  This is a severe allergy that has almost taken the life of my child twice. This allergy is time consuming, life consuming, overwhelming and frustrating.  People seem to think it is as easy as just not giving him milk or soy, but it is not. 

It is label reading.  It is shopping at 4 different stores to get all of his safe foods.  It is frustration of not finding any foods he can eat because soy is in everything.   It is the disappointing trips to the grocery store, and returning home yet again empty handed for this child.   

 It is calling and being on hold with food companies for what seems like hours to be 100% certain that the vitamin E or natural flavoring is not soy based, because soy fat ingredients do not require labeling for allergens.  It is constant cross contamination research to check what foods are run on the same line as foods made with dairy and soy, because I will not let a drop enter his body.

It is constant research, constant planning, and constant thought about what foods to try next and in what order.  It is the facts about food constantly running through my head.   

 It is constant recipe search, trying to find new ideas for the same foods search, and recipe experimentation. It is the constant meal planning. It is food journaling.

 It is frequent trips to the store, since everything needs to be made from scratch.  It is the steaming, blending, storing, cleaning, and repeat, multiple times a day.  It is the not having the luxury to do "fast food" ever, even on those days where you just need a break from cooking.

It is trying to explain to his sister why she can't share her cookie with her brother.  It is the look on his face when he wants to try just a bite of what you are eating.  

It is expensive! All his foods need to be organic, natural, and whole.  It is having to give up the luxuries that are my sanity in order to pay for hypoallergenic formula, because each can cost $39 and one can lasts about 48 hours.  Although expenses are the smallest of the issues because his health is more important than anything money can buy!

It is the constant wonder if a behavior is due to an allergy or not.  He is fussy: is he tired or reacting? He is not eating:  is he full or is he reacting? He had 3 dirty diapers today:  just an off day, or is he reacting?  He is sleeping a lot today:  is he just tired, or is he reacting? He seems uncomfortable:  is it his teeth or is it his stomach? It is the fact that your heart always goes to the allergy, and your head has to try to talk your heart out of it. 

It is the poop checking.  Every day for 7months, poop check.

It is the not having anything in common with your friends anymore, because you eat, sleep, and breath this allergy.  It is talking to people in online support groups that you have never met before more than talking to your friends, because they are the people that truly get what you are going through. 

 It is the prevention and worry of cross contamination in your own home. It is the little decisions about food that have turned into monstrous ones.  It is the selfishness of wanting to introduce more foods then you should for convenience, and then the guilt of even thinking of that.  It is the constant thoughts of food running through your head that have taken all the joy and fun out of introducing them to your child.

And the worst of all is the constant anxiety that you are going to put your baby through a reaction again if you don't do everything right.  It is the constant fear that overwhelms you every time you put something new into your child's mouth."

I reflect on what she is writing because so much of it are my very own thoughts.  There is a connection between FPIES moms because we can so easily relate to one another with this journey we have been thrown into before our babies are even past the infant stages.  Just when you think you're settling into a routine past the infant days, you are thrown into the life of a chronic illness.

A mother is created to nurture, a baby is born completely dependent on that need.  A baby soon grows into a toddler, preschooler, and before you know it, they are off to school.   Children grow up so fast, life happens in the blink of an eye.

Motherhood is calling, and when it calls an FPIES mom it takes nothing less than a woman made of steel- one that can exist on what seems like no sleep to stay up all night comforting a crying baby, one that can push past their own fears to feed a baby food that may end up making them sick in hopes to expand their diet and nutrition, one that has to chart food logs and keep poop journals, one that has to search for a doctor knowledgeable in this allergy -even if it requires them to over advocate for their child, because not every doctor is trained in it and a clinical diagnosis benefits from experience, one that has to put on a strong face when their heart is crying as they watch as their child undergoes procedures and allergy testing to help doctors carve out the individualized care plan their child will need to thrive through this illness,  one that has to stand strong and kindly tell a begging toddler "not for you" when they ask for a food that is unsafe or contains unknown ingredients, one that sets aside their own needs and sits with a sick child for hours or even days just to be next to them because the loved ones touch is the only comfort they have after a chronic reaction and the gastrointestinal stress it does to their body.

Motherhood is calling, an FPIES mom.....


  1. Yes, yes, yes, and agreed.
    I'll never forget when my oldest got to the age where she understood what she was missing out on with dairy. It involved a VERY (hormonal) pregnant me, a little girl who was eating a chocolate chip cookie, and a heartbroken L who didn't understand why she couldn't have one. "I've been good, though Mommy.. *sniff sniff*' I was just beside myself. I'm not looking forward to Liv getting to that stage because it is going to be MUCH worse for her, unfortunately.
    Thanks for posting this. I'm thinking I might pass it on as well.

  2. Linking this to my Facebook page. I'm almost in tears as I read it. That letter hit the nail on the head, and your added comments drove it home!

  3. As I've tried to diagnose and understand my son's food allergies your blog has been a source of encouragement and insight. Beth's story also hit home as I have resorted to a whole foods diet as well. Thanks for everything.