Dear Sarah, I just didn't know about FPIES. Food Allergy Awareness Week 2013: A Guest Post

I shared a post the other day on Food Allergy Awareness Week, and what it means to me to bring awareness to FPIES. Today, in the midst of Food Allergy Awareness Week, I am very touched by these beautifully written words, expressing so much of the frustration, anguish and most importantly, forgiveness we must give ourselves, as mothers, that we are doing the best we can everyday.  This is shared by a fellow FPIES mom, whom I have had the honor to 'met' via a Parent-to-Parent support group.  Jenn Booth has given me permission to share her letter to Sarah, here, on my blog. 

Sarah, I just didn't know about FPIES.

If I had known that you could look adorable on the outside, but be very sick on the inside, I would have known how much you needed me to help you.

If I had known that your newborn tears were from pain, I would have complained less about being up all night.

If I had known that feeding you baby food would put your life at risk, I wouldn't have spent all day trying to get you to eat it.

If I had known that you were desperately trying to tell me it hurt your body to eat noodles, I wouldn't have made you finish them before I got you out of your highchair.

If I had known that you had no other way to tell me that you were suffering, I wouldn't have punished you for hitting me.

If I would have known that you didn't just "get the flu" more than other kids, I would have questioned the doctors more.

If I would have known that your tantrums were a cry for help, I wouldn't have let people label you with a "behavior problem".

If I would have known how close we were to losing you, I wouldn't have wasted time brushing my teeth before taking you to the hospital.

If I would have known that the cookie I gave you at lunchtime could make you throw up 4 hours later, I wouldn't have gave it to you.

If I would have known that food allergies don't always show up on allergy test, I would have tried an elimination diet earlier.

If I would have known that anaphylaxis is not the only kind of life threatening allergy out there, I would have demanded faster treatment at the E.R.

If I would have known that your vomiting, bloody diarrhea, screaming, constipation, hair loss, pale color and passing out was from food, I would have eased your pain sooner.

If I would have known the juice I was mixing your medication into was the reason you were constipated, bleeding rectally, malnourished, vomiting, and bloated in first place, I would wouldn't have force fed it to you.

If I would have known that pediatricians, children's hospitals, specialist, and feeding clinics could all be wrong, I would have sought help elsewhere.

If I would have known that there were other kids like you out there, I would have tracked down their families and compared stories sooner.

If I would have known that the scopes weren't going to show much because the prep for the scope is to stop all FOOD days before the test, I wouldn't have put you through it.

If I would have known that not all kids with FPIES outgrow it, I would have prepared better for the long haul.

If I would have known that some kids have NO safe foods, I would have been less freaked out about only having 27 safe foods.

If I would have known that not all ingredients are listed on labels, since you can never be sure how each ingredient is derived, I would have called food companies earlier.

If I would have known, if the doctors would have known, if anyone I rambled on to would have known, it wouldn't have taken 6 years to diagnose you.

If I would have known that at 7 years old you would be in so much pain and feel so "not normal" that I would overhear you pray to go to heaven early, I would have explained sooner that there is no such thing as normal and reassured you that it will get better someday.

If I would have known how embarrassed you are about a medical need to wear pull-ups at 8 years old, I wouldn't have waited to tell you that I was a bed wetter until 5th grade.

If I would have known how isolating, scary, confusing, frustrating, and financially debilitating it is for families living with fpies, I would have reached out to give and receive help sooner.

If I would have known how many well-meaning people would offer you treats, I would have stopped them before you realized you were missing out.

If I would have known how many good people we have in our community, I would have asked for help sooner.

If I would have known there was a place we could get information, support and understanding, I would have contacted thefpiesfoundation.org sooner.

If I would have known you were suffering from food multiple food allergies, I would have found you help sooner, saw you smile more, and kept you safer. Because I love you, because you are my child, because we are in this together, we will be okay.

Love,
mommy

Please spread the word. It is Food Allergy Awareness Week and these kids and their families don't need to suffer. This is a rare type of reaction to food, and most of the medical community are not aware of it, or don't clearly understand all the symptoms.
If you ever asked how you could help or if you know and love Sarah, please repost this, like this or whatever....after all, I did just tell you that I peed my bed until fifth grade. :)

Awareness is Action! Food Allergy Awareness Week 2013

If you follow this blog, you are likely aware that I am BIG on raising FPIES Awareness.  Maybe it's my personality, but I have always viewed awareness as an action. I am not simply raising awareness to the diagnosis but in what it means, and what ways we can be stretched to learn, and to be helpful.   To be empowered, and to empower others.

In the beginning of this journey, I was privileged to have a pediatrician for our boys that was good about knowing what ways she could empower me.   One of those ways was (and some may not understand this but thankfully she understood enough about me to know I needed it)....was to say she was stumped.  After week upon week of bringing Little Man in to her office, repeated visits for new symptoms or to review current symptoms, practically begging and often crying for help, thinking that if I just told her about this new symptom or did I forget to mention that incident; will I get closer to some answer she in her knowledge and experience, is considering?  Then, one day, she sat down and said, "I just don't know". Words probably easier for me to hear than for her to say (yes, words easier for me to hear).  I remember that day still so well because it changed my thinking, it changed me from waiting for someone to have an answer, to me finding an answer. It empowered me. She didn't know, but I did. I didn't know about FPIES then; but I knew my son, and I knew something wasn't right.  I would research day and night,and write down everything,and read every journal article I could get a hold of (which was only less than a dozen at that time).

Once we did finally find the diagnosis, I entered support groups, and I found myself surrounded by families in so many similar situations.  The need to be empowered to know how to care for this child with this rare, little understood allergy is so great, it is so needed. A mother has the intuition to care for her child from before they are even born....a connection so deep- poetic words (that I do not have) can only begin to describe.  What we don't know instinctively  we instinctively know where/how to learn.   But then, your child has this allergy that doesn't follow any rules and that robs you of the basic need to nourish them and you feel like you're standing alone and your toolbox is empty, or the tools you have in it don't fit at all and you lose time trying to use them, trying to make them fit.

So, during Food Allergy Awareness week, above other times in the year, my awareness is increased and I hope yours is too, and you will help spread the information about Food Protein Induced Enterocolitis Syndrome so that more families and more medical providers, are empowered to learn more, and become equipped with some basic tools for thriving through this disordered allergy of the gastrointestinal system.

Awareness is key, Awareness does matter. Awareness is Action. 

For when I am weak, I am strong....

"But He gives a greater grace. Therefore itsays, "God is opposed to the proud, but gives grace to the humble." James 4:6. 

I'm not a big 'scripture person", meaning I don't necessarily memorize or quote scripture but of course am familiar with passages and gospel stories and am reminded of them in so many area's of life, in the everyday.  God uses whatever means He needs to to speak to us- sometimes in the voice of our children, in the eyes of a small child, in the cry of a wounded soul, in the wake of tragedy are the times we are listening most for His voice-but He is always there.  I learned this as a small child, something my dear grandmother taught through her example. And it was impressionable on me. It was a gift-directly given from her but indirectly given from God....He knew I would need this gift.   

I came across this post today, "When you give up, and you break, you've made it.",from A Holy Experience on the heels of my last post trying to express what it feels like to be filled with graces, the graces to sustain, the graces to see the works before me, the graces to appreciate the painful days and even more so the graces to be so grateful and humble for the so.very.many.blessings.  

These words from the (above) post...."But here comes the upside, the so unbelievably bright side: when you are just done, and broken, and tired, you’ve made it.

You are now about to experience the most profound, amazing, life-altering, freedom and grace that will set you so free you are going to fly.

I mean it.

I mean it.

When you are broken enough and tired enough and angry enough that you just can’t mold yourself, fix yourself, do better, be better, when you are just done, grace is lavished on you like nothing you’ve ever experienced."

Wow. Wow. Read more, trust me.  Let the words wash over you.   

The title of the post isn't what grabbed my attention though.  I don't feel like I've given up- or that I am ready to.....but that doesn't mean I don't think about it when I am weak, or broken, or learning. 

What grabbed my attention in this post,was the first words...‘"I don’t want to be a servant –I want to be a Caroline.” So says the three year old wonder-child who humbles me as a parent and makes me think deeper about life."

My 3yr.old humbles me as a parent, too.  Last week, I was working on an article, and decided to also do a slideshow to illustrate along with the article (I love pictures!) for Feeding Tube Awareness Week 2013.  Little Man was watching the video with me, as I edited it.  We came to this picture:

And, he said- "mom, what's this" (pointing to the heart).  I said, "it's a heart".  He said, "no, this" (pointed to the same place). I said, "it's your feeding tube but inside is the heart, do you see it?".   He said, "no, that's not a heart- that is a kiss".  

Almost a year ago, he had that tube placed. Although I would say it was love- a symbol of love, of tough love at that time, but of love; I would not have said it was a kiss.  Today, through a multitude of graces, I know it is.  A kiss from an angel. A bridge to saving his life, to restoring health and quality of life in our little man. A way to get nutrients, medications, hydration in without constant chronic inflammatory reactions.

What strikes me from this post (above) is the first lines and how my own 3yr.old said those very words to me just yesterday. "I am not a supertubie, I am Sam.....I have a tube, see- right here (lifting his shirt and pointing to his gastric tube).  My tube is super. I am Sam".

Feeding Tube Awareness Foundation put a lot of thought into the Tubie logo, and it has amazing symbolism needed to bring compassion, understanding, empathy and most importantly, awareness to medically necessary feeding tubes. The word tubie in the logo was coined (and the logo trademarked by Feeding Tube Awareness Foundation) to bring the "human" to the tube (in the words from  Feeding Tube Awareness Founder for this awareness article on Complex Child EMagazine) "...logo embodies what we are trying to do.  Re-position tube feeding from something that is scary, icky and complicated to something that is friendly, approachable and beneficial--when it is medically necessary...... is why we chose the term "tubie" over something more clinical like "enteral feeding."  Words matter in communications..... The emotional connection is important, too.  It needs to be personalized.  The heart is pure tubie love."  

Beautiful. I thank Feeding Tube Awareness for this logo, this symbol of love.   


But in this instance, in a time when my mind is struggling with this chronic illness and the up and down effects on the quality of life of our family; it was simple words from a 3yr.old that reminded me of the importance of not naming the illness of a person.  The illness is not a person, the person has an illness.  The illness doesn't define the person, the person defines the illness.   Sam is a child with a severe food allergy of the gastrointestinal system, he has FPIES.  He is a child with FPIES.  He is not an FPIES child.  Can you hear the difference?   Medical Sociology 101: Do not define a person by their chronic illness.   Do not let a chronic illness define a person.   The medical field relies on the definitions and naming of an illness is to allow understanding of common symptoms, and to help define the illness by grouping symptoms.   However, in so doing, we risk taking out the individualism.  That very individualism that is needed in a complex subset of symptoms that ties together a syndrome called FPIES. 

Building blocks...

An creatively brilliant FPIES mom created this inspiring FPIES logo for our United Family Fund. It is a fitting logo and symbolizes so much.   And I am thankful for Amanda for creating it and to Fallon for choosing it for the Fund logo.  

To me, it is a reminder of the building blocks we are learning about our kids and this rare illness....learning together, building from one other's experiences- with food trials, with diagnostic tests, with research studies, with doctors- knowing and unknowing, with food allergies- typical and atypical.   So many variables to learn from so many families.  Too many families having to experience the same things we have experienced.  And all surrounding such a simple thing....feeding our children.

It also symbolizes us: the families- building on each other.  Every one of us brings something unique to the table- whether it is a recipe shared, an experience with elimination diets and breastfeeding or formula tolerances and food trials.  Or, if it is in fund raising for the United Family Fund for further research, or in sharing knowledge gained with other moms just beginning this journey, or exploring new paths not yet traveled on.   We are a community of building blocks.  No one person can do it all, but we all can build off each other- each bringing our building blocks forward- not placing them by themselves but linking together for the cause....for our kids....

Maybe we bring our block and leave it, placing it there for others to build on, but unable to stay with it- because we need to care for our sick child, or the welfare of our other children, or simply just enjoy a much sought after baseline with our child....with our family.    But that block placed will not be wasted, it will be built upon- added to.   And then when we come back to the blocks, we add another.  Today you care for your sick child, while another family raises money for the fund.  Tomorrow you raise money for the fund while another family explores a new path and shares their experiences.  Next week you explore new research while another family takes time with their family.  Amidst all of this, life goes on, and every few days a new family is joining the community.   We need to continue building on what is known, we need to further the research. We are stronger together.

I, personally, would not be where I am today without the community I have found and formed online with other moms.  It is the other moms I credit for my knowledge gained, for help with our puzzle pieces, for the drive to push on and on.   I thank all of you who have helped me understand and cope with this illness.

FPIES Experts

I've had this post sitting in "edit" since Dec.22.   I sat in the hospital room with our Little Man, recording his daily activities (intakes, outputs, symptoms, etc) in my logs as I always do, watching over the plan laid out by doctors, checking on ingredients of things to be put in his body or on his body.  I wanted to trust doctors, doctors who I know have my Little Man's best interest in mind but also doctors who have no experience or prior knowledge with FPIES- or really anything like it.  Instead, I have had to become knowledgable in FPIES.

I've been finishing this post in my head with how I want to desribe what an FPIES expert is.   Lets start with the definition of Expert from: merriam-webster.com: "having, involving, or displaying special skill or knowledge derived from training or experience".   Well, my training is in nutrition and my experience is a 4th time mom with first-hand, deep-in-the-trenches FPIES experience.

Parents are experts in their own children, they know their moods, their cries, their personalities, their likes and their dislikes.  To add to that, the parents of FPIES children quickly become experts in FPIES.  We have to, there is so little known.    Yes, there are studies, such as FPIES caused by Solid Food Proteins and FPIES: Case study presentations and management lessons but there is only so much everyday information that one can gather from these studies.   At this time, the most I have learned is from other moms, found in online communities for support.   We would all like to see that changed, so future children do not have to suffer as ours have - searching for a diagnosis, a direction, a baseline.

A few days ago, I did a post on what FPIES has taught me.   Of course, having a son with a chronic illness has taught me a lot about patience, advocacy, perseverance, strength, love, and all that life has to offer.   But I am talking about what FPIES, first hand, has taught me about Non-IgE food allergies, delayed-gut, food allergies.   About digestion and GI health.   About food, and how it is made,processed and produced in this country.   All these things, I have been taught/trained in- I have a degree in Nutrition....but none of these things I understood the way I understand them now, having learned things from experience.   What I haven't learned first-hand, I have learned from other moms- with first hand experiences.  Connecting all this together for real FPIES information, real help.  

This brings me to my daily question: if I'm an "FPIES expert"- then why is my son struggling so much to find a diet?  To tolerate foods?  God is giving me a very important, and strong life lesson.  He sent Little Man because He knew he was strong enough to endure this- to teach me, to teach his daddy, to teach his doctors, all to help other children.   He knew that with my background, and my nature to want to help others- He could use me as an instrument. 

If Little Man hadn't been as sick as he was, in pain daily we would not have made the trip half way across the country to take him to an expert Allergist,  if he had tolerated the Elemental formula, if we didn't have to fight with him to eat just half of his needed calories from that formula, to remain on it exclusively- keeping food from him for 5mo. with only worsening symptoms (and inflammation) - I would not have had the drive to make my own formula for him.  If Little Man didn't have continued intolerance's, making his illness complex - I wouldn't have pushed for 2nd opinions and a change in doctors on his Medical Team for his care.  If we hadn't done a soy trial- would we have known about the villous atrophy component of his FPIES?   God is putting all this in our path, all the atypical FPIES experiences in one Little boy so that his doctors will learn and help other children; and so we will learn and pass along what we have learned in hopes of helping other children/families. 

We, the moms, are FPIES experts, and the learning continues daily....

The Invitation

I have been connected with an amazing woman's website.  It is a website aimed at support for families with rare childhood diseases, here is her website: rare disease support. It is filled with great support and resources for families and caregivers.   One of her blogs devoted space to this poem.  It spoke to me and I wanted to share it.  Inspiration is coping.  Emowerment is coping.  Paying it foward and helping others is coping. Bloggins is coping, to me....

Oriahmountaindreamer

The Invitation
 by Oriah

It doesn’t interest me
what you do for a living.
I want to know
what you ache for
and if you dare to dream
of meeting your heart’s longing.

It doesn’t interest me
how old you are.
I want to know
if you will risk
looking like a fool
for love
for your dream
for the adventure of being alive.


It doesn’t interest me
what planets are
squaring your moon...
I want to know
if you have touched
the centre of your own sorrow
if you have been opened
by life’s betrayals
or have become shrivelled and closed
from fear of further pain.


I want to know
if you can sit with pain
mine or your own
without moving to hide it
or fade it
or fix it.


I want to know
if you can be with joy
mine or your own
if you can dance with wildness
and let the ecstasy fill you
to the tips of your fingers and toes
without cautioning us
to be careful
to be realistic
to remember the limitations
of being human.


It doesn’t interest me
if the story you are telling me
is true.
I want to know if you can
disappoint another
to be true to yourself.
If you can bear
the accusation of betrayal
and not betray your own soul.
If you can be faithless
and therefore trustworthy.


I want to know if you can see Beauty
even when it is not pretty
every day.
And if you can source your own life
from its presence.


I want to know
if you can live with failure
yours and mine
and still stand at the edge of the lake
and shout to the silver of the full moon,
“Yes.”


It doesn’t interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.


It doesn’t interest me
who you know
or how you came to be here.
I want to know if you will stand
in the centre of the fire
with me
and not shrink back.


It doesn’t interest me
where or what or with whom
you have studied.
I want to know
what sustains you
from the inside
when all else falls away.


I want to know
if you can be alone
with yourself
and if you truly like
the company you keep
in the empty moments.

By Oriah © Mountain Dreaming,
from the book The Invitation
published by HarperONE, San Francisco,
1999 All rights reserved