Monday, March 21, 2011

Mama Will Never Let You Fall

B has been fairly enamored with climbing up and down the stairs lately, normal for her age right? Sadly, she inherited her mama's clumsiness, so we keep a careful eye on her and walk behind her when she climbs. Yesterday, she looked back and smiled at me as we went up the stairs and said, "Mama will never let you fall."

I have been telling her this since she was tiny, whenever she seemed nervous about climbing higher on the playground, riding in the sling as we were running towards the train (ahh, sweet memories), or walking through the snow. Even when she was very little and we couldn't figure out what was wrong, I always told her, "Mama will help you. Mama will figure this out." I always wanted her to feel safe, to know that I would be there to help her if anything went wrong, to catch her so she wouldn't fall.

We have had a blissfully happy break from food trials since the peanut butter fail and now that birthday celebrations, visits from company, and important doctor appointments have come and gone, it is time to get back on the horse again and try. Try something new. Try and figure out new ways for food to be accepted by her body and her emerging picky toddler tastes. Try and not hold my breath too much and over analyze. . . And most of all, to be there to catch her and to keep her from falling.

We have been lucky in the scheme of things-- she may have 20 fails at this point but she also has 13 safe foods. She may have had shock reactions to some foods, but many failed foods have been pulled in time and left much less damage in the wake of a reaction. I have been able to nurse her with a very easy elimination diet. She has even finally accepted the Splash, 6-8 oz a day. Her weight is awesome, even though her height percentiles are slowly creeping downwards. Fails are still a very big reality for us, however, and we haven't seen a change in fails vs. passes since we started solids now over 18 months ago, in severity or in frequency. As she gets older, I stop and wonder if I will be able to catch her every time she "falls" and has a reaction. I feel as if we have reached an age where we need to begin teaching her how to help catch herself and to help keep herself safe.

I like offering "yes"es with "no"es. We keep things simple--- "That food will make your tummy hurt; THIS food will be yummy for you!" For crumbs found on the floor-- "Those are for the birds; THIS food is for you!" But the reality creeps in--- I know I can't keep her from the unsafe foods forever and with playgroups, preschool and hopefully one day siblings down the road, we need to find ways to give her tools to cope with this reality, whether it be permanent or temporary.

When I worked as a therapist, that was my mantra: "Give them tools." I always focused my sessions on tools that could help my patients cope with everyday life and relationships, whether they stayed institutionalized for most of their lives, went on to group homes, or were able to live independently in their communities. It is my goal to approach B's FPIES with the same concept-- give her tools to not just survive but thrive, with or without reactions, with or without lists of safe and unsafe. So slowly and in age appropriate ways, we will begin introducing the concept of how to tell mama/daddy when her tummy feels funny, reinforcing who is safe to take food from, and how to tell mama/daddy if she eats something she isn't supposed to (this being the biggest new thing to work on).

With FPIES, I don't feel like there is a way to truly "win," but I do believe there is a way to catch my girl, to not let her fall, and to help her not only grow, but thrive, in the face of this pointless disorder. With these tools, I hope to give her more time to be herself and less time to be a child overshadowed by a diagnosis. FPIES, you will not define us. And I, her mama, will not let you make her fall.


  1. You are amazing, I love this! We have also already started trying to teach our B (and her older brother) what is safe and what isn't. I know we have a long road ahead of us, but it's so great knowing we are not alone. Thank you!

  2. This is so insightful! I always appreciate those ahead of us on this journey sharing their experiences, tricks of the trade, insights....and I can always count on you for that for us. Thank you Amanda for being my mentor! :) Baby B is so lucky to have such a wonderful mommy she KNOWS she can trust- what a great gift she gave you confirming that your parenting is helping her thrive in so many ways!!

  3. Thanks ladies! I don't know what I would do without all of you guys!