Feeding Echo and Finding Purpose – Our Life with FPIES

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A few weeks ago, our local news station asked our family to do a news segment on FPIES.  We talk about FPIES almost weekly here in an effort to raise awareness around food allergies, and I’m all about raising awareness wherever and whenever I can. So, of course we said yes.

{Watch our story here.}

Our awesome story teller, Kerry Tomlinson.
Our wonderful story teller, Kerry Tomlinson.

I love the story, I love how well they captured the sweetness of my boy, his gentle, joyful spirit, and most of all his interaction with his dad. The news got about 85% of the story right, and I’m grateful for that.  But they missed a few details, and one major detail that I want to express:

Echo’s illness changed everything.

From the ashes of that first year, a new life was born.  I don’t mean a human life, (although we were terrified of losing our baby for the first 18 months of his life).  But this.  This work, this site, this whole idea was formed from the grief.

Hospital
Echo, two days old and fighting for his life after a stroke.

In the summer of 2014, my long-time friend, Jessica, asked me to write our story for The Leaky Boob.  I was in the middle of dealing with massive PTSD, chronic mastitis from exclusively pumping milk from boobs that just wanted to quit, a crumbling marriage, and figuring out a way to keep our son alive and thriving in the midst of an illness nobody, even specialists, know much about. He had three “safe” foods at the time: TED breastmilk (wherein I was limited to 12 foods at one point in time), coconut oil, and spinach. Nightmares of feeding tubes and bankruptcy and divorce tormented my sleep, while emotional paralysis, physical pain, and extreme anxiety plagued me during the day.

Echo's second FPIES vomit-to-shock reaction.
Echo’s second FPIES vomit-to-shock reaction when he was 8 months old.

I said yes to telling our story.  Beyond the fear and the trauma, I knew other families were dealing with the same issues.  They were dealing with the despair, discouragement, and constant barely-subdued terror that their child might not make it.  And what if their kid does make it?  What kind of life and wounds will this struggle indelibly imprint their little bodies and spirits with? I started three drafts, scrapped them all, and then Echo had a vomit reaction to green beans in the middle of it all.  And that was it.  The impetus I needed to get it all out in real time.

This season. Trying to keep it all together and almost losing our marriage in the process.
This season. Trying to keep it all together and almost losing each other in the process.

Our story isn’t just for FPIES families, though.  It is for every family who has faced unimaginable obstacles and trauma.  Maybe it looks like FPIES, maybe it looks like unknown illness, maybe it looks like a brain tumor or infant hearing loss.  Maybe it looks like a massive struggle with self-care or divorce or being a terrible friend for a season.

EchoandLance
Echo eating for the first time at a chain restaurant.

Telling our story gave me access to the power I needed to find my way through, even though I never quite knew the next step until I took it.  It gave me just enough Brave to inch ahead of my Scared, and continues to fuel the heart of this little corner of the Internet where I believe Everyone deserves a seat at this table.

Thank you for being a part of this community.

Thank you for continuing to give us, and other families, a voice.

Thank you for sharing posts that are relevant to you with people you love.

Thank you for enjoying the food and laughter and tears and gathering here to have a human experience. This doesn’t happen without you.

Thank you.

Love,
Carrie, Lance, and Echo

FamilyTwoyears

“Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. They come together and they fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy.”

― Pema Chödrön

Adi Hears {#Tiny Triumphs}

This is Adi.  She is a smart, bright, curious, and wonderful ray of sunshine to everyone who meets her.  She was born with profound hearing loss, and even though technology is advancing, it is unlikely three year-old Adi will ever hear without an aid of some sort.  In fact, recent hearing tests have concluded that her hearing is deteriorating in spite of the latest technological and medical advancements.

Even though genetics cause hearing loss about 50% of the time, the cause for Adi’s moderate to severe hearing loss is completely unknown.  

Hearing aids are costly.  The price for one aid is between $4,000.  Imagine putting that on a toddler’s head. Imagine communicating to your child, who cannot hear, that the hearing aid is precious and needs to be cared for with gentleness and the utmost care.  Imagine the anxiety and heavy burden of cost associated with the process of helping your child hear.  Adi attends speech therapy twice a week, and gets her hearing tested once a month. 

Adi Hearing Aid
Adi’s Hearing Aid

The kicker in all of this is insurance doesn’t cover a dime.  Hearing aids are lumped together in the same category as vision, except there is no hearing aid “plan”.  Adi’s parents get resourceful to cover her ever-changing needs, and continue to hope and search for a way for Adi to hear without a hearing aid.

Focusing on the small victories help keep Adi’s family’s spirits up, even while they face the monumental task of helping their daughter hear.  The small sounds we take for granted? Adi discovers them, brand new, every day.

Adi’s mom shared this great moment with us.

“Just the other day, she heard the soft sound of a dove singing. She asked me what it was – I explained and then she quietly listened – and heard it again! It’s those moments that make my heart happy that my daughter isn’t missing out on the simple sounds in life.” —Christie, amazing mom to Adi

This is Adi.  She is a smart, bright, curious, and wonderful ray of sunshine to everyone who meets her.  She was born with profound hearing loss, and even though technology is advancing, it is unlikely Adi will ever hear without an aid of some sort.    Hearing aids are costly.  The price for one aid is between $4,000.  Imagine putting that on a toddler's head.  Imagine the anxiety and heavy burden of cost associated with the process of helping your child hear.  Adi attends speech therapy twice a week, and gets her hearing tested once a month.   The kicker in all of this is insurance doesn't cover a dime.  Hearing aids are lumped together in the same category as vision, except there is no hearing aid "plan".  Adi's parents get resourceful to cover her needs.    Focusing on the small things help keep their spirits up, even while they face the monumental task of helping their daughter hear.

May we remember to relish the songs of the birds, and the sound of wind in the trees.  Thank you for reminding us, Adi.  We are all cheering you on!

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Do you have a #tinytriumph you want to share? Do you think your little moments of victory might inspire other families to keep going? Do you want to find out how to contribute?  Click here to learn more.