Tag Archives: EoE

A Joyful Heartbreak

You know, sometimes life just sucks.

Yeah–that’s my intro to this post.  Mainly because nothing else seems fitting. I know God will give me wise words before I leave you, but for now, this is what I’ve got.

A few minutes ago, we got the official word that Sawyer failed his rice trial.  Typing those words doesn’t even begin to give the situation justice–and I don’t know where to begin to explain it, so I won’t.

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Rice.  A blessing for McCall–an enemy of Sawyer.  The same disease, and yet the same, innocent grain cannot be universal.  I don’t get it.  I truly don’t.  Even Sawyer’s body told us he was better.  No complaining, no stomach aches, no extra sleeping, no diarrhea. He actually gained weight.  A whole pound and a half.  A pound and a half for a Failure to Thrive kid is gold.  Like real, genuine gold.

All signs pointed towards good, towards the reward of keeping rice.  If you’re going through this journey too, you know this–but there is NOTHING that makes sense about EoE.  The only thing consistent about it is its inconsistency.  As soon as you feel like you understand it, WHAM–something like this happens, and you realize you literally can do NOTHING but trial and pray.

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But for the last 8 weeks, I’ve witnessed something I’ve never been able to before.  It was my 3 crazy, chaotic kids sitting near one another, even next to one another and sharing rice.  Rice cakes, rice crackers, rice noodles, rice anything.  It was something that made me cry at first–and then slowly became culture around our home, and I have to admit I forgot about it–began to forget its importance, its significance.  And now in this moment, I long for one of those moments back–just so I could tell it to linger, to stay awhile.  I need it back–the feeling of togetherness, of hope, of little hands reaching in the same little bags pulling out the same little pieces of rice.

Instead, in this moment, I find my head filling only with philosophical questions like, “How can God make rice, but rice hurt my baby?”  “How can God make rice, and rice help my other baby?”

Here’s where it gets difficult.  The true test of a heart.  McCall has passed blueberries.  I don’t want it to get overshadowed by grief, but in a moment of honesty, it has.  A joy blocked by a deep sadness.

Tonight, Andrew and I go into battle.  A family meeting where we collectively and purposely give God glory for the gift of blueberries for McCall.  Even their mere existence takes me back to a place of thanksgiving–as they were the beginning of a life of hope for Sawyer.  Typing these words brings me back to that moment, and I can feel my heart beginning to craft out a spot to fit this joy that is welling up inside of me.

But tonight…we also go into a battle where we explain to our raspy voiced, puppy dog eyed, 2T clothes wearin’ tiny 4 year old Sawyer–who is just now starting to understand what all this give and take means in this disease–that all of his favorites are gone forever.

He will go back to only eating blueberries, turkey, avocado–and then introduce a new food.  We are hoping for corn (wouldn’t that be fun this summer?) so we can try to replace a few things like rice flour and noodles.

You know, once you’ve crossed over, it’s so hard to take your heart back to the place that it was.  There was a time–when Sawyer didn’t remember rice, and was living happily on his 3 safe foods.  Going backwards is hard.  And even harder when you move forward with the other.

When Sawyer was diagnosed, in the midst of grief, I remember Andrew and I talking about the bond these two would have.  I remember thinking–I can’t think of a better, more loving or caring big brother than Kayden McCall Hydrick to walk through this journey with.

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And today, as I prepare my heart to lead our children in another season of this disease, I hold on to 3 things:  1.  My Jesus is greater than EoE 2. My husband is my earthly rock, and we will walk each day together as we celebrate, grieve, and press on.  3.  Even in its vulnerability, God has a plan for our journey and the desire He has given us to share it so openly.

A joyful heartbreak.  That’s what this is.  It’s a consequence of having two with the same disease.  It’s inevitable.  Sometimes it’s beautiful, and sometimes, like today, it produces a pain I can’t handle.

God made me an emotional person.  I feel deeply. I overflow with compassion. I love passionately.  It’s just who I am.  But, I don’t for one second believe that God made me with a heart to be able to handle this sort of thing.  If I didn’t have to put on a smile for my sweet souls playing in the backyard–as I type at the picnic table–I would crumble into a thousand pieces and wait until I could physically feel Jesus lifting my body off the floor.  But thank God for short naps today, so that my heart doesn’t have a second to think I can do this thing on my own.  Many times, it’s easier to think God will help us through something “big” like a tough financial time or a crazy period of a marriage rather than the state of our hearts.

But I can’t do one day without my Savior, physically or emotionally.  I fight the temptation to hide my hurting heart from Him and to listen to worldly advice like I’m strong enough.  No, I’m weak, and HE’S strong.  I’m sad and HE’S my joy.  I don’t have it all together, and HE picks up my pieces.

The heart is a fragile thing.  And God created it.  He knows.  Tonight, I pray that my words would not be the overflow of my heart, but from the overflow of His love.  And I join in prayer with you, as you tackle this little thing called life–that whatever it is you are facing or battling or scared of–that you would let God in on the state of your heart, for He can heal, and renew, and piece together the brokenness and hurt.

Tomorrow is a brand new day for us all.  No rice, but there’s always blueberries.  I challenge you to think of the “rice” in your life–what it is that looks great on the outside, that might even appear like it’s helping you grow or feeding your soul, but in reality is toxic.  As we get rid of rice tomorrow, start fresh with us, and get rid of yours.  When it gets hard, remember the blessing of blueberries, of sweet, sweet blueberries and the power they have to bring us to a place of gratitude.

As always, thank you for continuing to reach out, encourage, and pray for us on this journey–many of you that we only know through words on a screen.  God has truly blessed us with a community of people who help keep us afloat.  We love you!

 

 


Update on Sawyer Blaine, a Real Life Super Hero

I think about trying to describe this soul to you, and tears replace words. The welling up kind.  The kind that make it hard to see–the ones that leave my top eye lids puffy for days.

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It’s not because I’m sad or because of the stupid disease.  It’s because of him. A 3 year old real life super hero who I get to see in action every single day.

He has a natural swagger to his walk, one hand holding up his ever-dropping pants.  He is the true definition of “though he may be tiny, he is fierce.”  What he lacks in height or weight, he makes up with personality, tenderness, and charm.

In October 2013, our lives changed all over again.  About a year earlier his big brother, McCall had been diagnosed with a rare esophageal disease called Eosinophilic Esophagitis.  It’s been about as terrible as the name sounds.  So that October, when the biopsy results came back that our middle son had this too, we were wrecked, all over again. We started the long process with him, only to find he was getting sicker and sicker, smaller and smaller, weaker and weaker.

We had been at our “end” for a long time–my husband and I switching off good and bad days, so that we could survive in this world.  We were watching our tiny one slip away before our eyes–and we had no idea how to take care of him at home.  We were drowning, trying with all of our might to bob our heads up every once in a while for air to keep us alive, emotionally that is.

I functioned like a zombie, trying to take care of each of our child’s needs, not fully understanding what we were doing.  The harder we worked, the sicker they got.  Stupid, stupid disease.  I was elbow deep in diarrhea, throw up, and exhausted babies.

My sweet husband was like me–but on swing shift work at his job.  His poor soul couldn’t even function from the wacky sleep schedule, and plus, there was no rest at our house.

He was pretty good at being my earthly rock, but eventually every man breaks, especially when it involves your kids.

One night, he was at the end of his rope.  At this point, there seemed nothing in our lives had even a glimmer of hope.  And my man could feel it. Later that night, as I lay deep in sleep, my husband’s body lay lifeless on the smooth hardwood floor that connects our babies’ rooms.  He sobbed a deep, desperate sob as an effort to plea to our God for help, and maybe even an answer.  He wailed. And he cried a lake of tears. And he asked God to heal our boys.  When he couldn’t do it alone anymore, he slowly made his way to me in our bedroom, and this 5 ft 105 pound mama held my big baseball player best friend as he shook and weeped some more.

God didn’t give us any answers that night.  In fact, we still don’t understand why any of it is going on. All we know is that He asked us share His goodness step by step in our journey.  There’s good, there’s bad, there’s really good, and there’s really bad.  And we will share it all, because it ultimately shows God’s faithfulness during all times of this life, and that He truly is Emmanuel, God with us.

In November 2013, we began a journey in our EoE (the short name for the rare disease) world that we dreaded.  Because he was so ill, Sawyer was taken off of all foods and survived on medical formula, water, ice, sugar, and salt until May of 2014.  He went through every single holiday, including his birthday eating “pretend” food on his plate and chomping on ice. I can’t accurately describe the despair each of us felt as we watched our favorite brown headed kid struggle and cry every single day.

At two years old, he slept more than he should–and tried with all his might to be the joyful kid he was deep down in his soul, but he just couldn’t understand what was going on.  And neither could we.  To protect our sweet Sawyer, we had to back off from life.  Sometimes isolation worked, and sometimes distraction worked.

At one point, doctors believed he had childhood depression, and it was a daily battle to keep his spirits lifted.  On the outside he was mischievous and smiling, but at the core–he knew something was wrong.  He knew he was different.  And man, was he hungry.

Thanksgiving wasn’t the same. Christmas wasn’t the same.  We didn’t even celebrate his birthday.  Judge if you may–but until you walk in these shoes, you don’t know the pain.  We didn’t have the emotional energy to explain why there was no cake.  He’d never even had cake.

After about nine months of drinking formula exclusively, we were cleared to begin food trials.  He failed a few foods (pretty devastating), but over the course of the next year, he gained three foods.  It sounds simple, but even that year was more arduous than we could have imagined.  A different kind of emotional.

Currently, his safe foods are blueberries, avocado, and turkey meat.  I know the list is small.  But when you’ve been where we’ve been–when you’ve seen the despair of hunger and daily pain–you truly can give thanks for these three.  Blueberries were his first “safe” food and will forever be dear to my heart.

The day the biopsy results came back on blueberries, I remember falling to the floor, sobbing a sob only a mother of a sick child could sob.  In fact, the sob was indistinguishable from that of a bad phone call.  There was that much depth–that much relief–that much pain–that much joy.

I see blueberries, and I see hope.  Blueberries alone would never satisfy that sweet child.  But it was our hope.  Then one by one…avocado….turkey….hope in many forms.

They each represent something to us–but those blueberries.  They are somethin’ else.

Now, he is trialing rice.  This means he will eat rice for 6-8 weeks, then will go in for an endoscopy and have biopsies of the esophagus, small intestine, stomach, and top of the colon.  If the biopsies come back clean, that means that the food is “safe.”  If the numbers are above 10, the food is unsafe, with 5-10 being a grey area.

This is the process for each and every food he trials.  You can see how long and frustrating this process can be.

He’s almost done with his 8 weeks on rice.  In fact, surgery is next week.  But I felt compelled to share some of the creative ways we’ve been keeping him happy.

One of his favorite breakfasts is pancakes.  I use rice flour and rice milk to make the batter, and then fry them in avocado oil (which is a whopping $13 for a small jar!!!).  He tops with a product called Brown Rice Syrup, which is a sweet syrup made from rice.  I have to admit, these don’t taste awesome.  But he really does love them!

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For a snack, I make something called “popcorn” which is broken up rice cakes drizzled in brown rice syrup and baked in the oven.  It’s the number one snack around here!

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For a special treat, we make fries, which are slices of avocado rolled in rice flour and fried in avocado oil.

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Sometimes he likes to keep it simple and he wants a smoothie.  This is made with frozen blueberries and rice milk.

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Some nights we make turkey nuggets by cutting up a turkey breast, rolling it in rice flour, and frying it in avocado oil.  You see two pans here because our oldest son McCall can’t have avocados, so we fry his in grapeseed oil, since grapes are a safe food for him.

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You’d be surprised how hard it is to actually find plain turkey breast!  It’s like a gold mine when we find it 🙂

Another favorite is “mac and cheese.”  I make a “roux” from avocado oil and rice flour, add rice milk, then pureed avocado.  I mix this with rice noodles for a very St. Patrick’s Day looking meal.

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I love turkey meatball and rice night because everyone can eat it!  I take ground turkey and add a little rice flour, roll in balls, and bake in the oven.  Served with plain brown rice.  Andrew and I cried when we took this picture.  Because it was one meal, and they could share, and it was even, and we were overjoyed, and so many more reasons.  It would be easy to do this every night, but they get bored VERY easily–and with Sawyer we always run the risk of him not eating.  For a child with Failure to Thrive, my number one goal as his caretaker is to help find him ways to eat lots of calories so that he has the potential to grow.

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For holidays, we try to do fun stuff.  We make “rice krispy treats” out of puffed rice cereal and brown rice syrup.  It doesn’t stick very well, so using the cookie cutters helps 🙂

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For his Easter party at school, the other kids had Chick-Fil-A nuggets, so we brought Sawyer’s special turkey ones.  He loves them, and he felt like he belonged.

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You know, we don’t have answers as to why.  At this point, I think I’m over that question to God. It doesn’t matter why–it matters WHAT.  What we do with it. We know this is our life.  For a long, long time, it will consist of doctor visits and constant hospitalizations and isolation and a sadness mixed with joy and thankfulness for the ever so small things and helping people understand and battling everyone’s opinions and so on.

A bad attitude will not make this go away.  It won’t make your marriage better or your wayward child come home.  It won’t make your daddy better or your sweet mama remember who you are.  These are all things in this imperfect life that will drive our core to heartbreak.

I promise you though, there is hope.  Some days, the only hope I lived with was the hope of a perfect place called heaven, where I knew these sweet souls would join in the banquet table with the rest of us, Jesus at the head, and chow down.

But ya know, I give thanks for that.  Because on those days–it brought me closer to my maker–who provided this promise land for us.

And then–when I had to live in reality–that this life is HARD–and that it probably always will be–for most of us–I realized I had to make a decision.  I could use this story to show God’s never ending supply of grace and help or I could show that I could do this all on my own.  God gave me more than I can handle.  I know that’s against most loving advice, but He did.  There’s not one day in this journey that I feel like I have a handle on.

But what my sweet Jesus taught me is about this thing called moment-to-moment living.  It’s choosing in each moment to look up and seek him.  For moments add to minutes, and minutes add to hours, and hours add to days, and days add to months–and months to years–and years to a life spent close to my Jesus.  It isn’t the big picture that matters.  It’s the moments.  If Jesus has my heart in the moments, he has my heart for a lifetime.

Bless you, sweet Sawyer Blaine for teaching me how to love this little thing called life.

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Cheating and EoE

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These past couple weeks, I’ve really been feeling the urge to talk about something specific- cheating. And no, I’m not talking about the relationship cheating; I’m talking about the food cheating. You know, when your child isn’t supposed to have wheat, dairy, or soy and yet you catch him with his hand in the cookie jar. Or, if your child is on the elemental diet and sneaks something as small as a piece of popcorn.

Personally, I have been on numerous restrictive diets, as well as the elemental diet. Before you scold your children for eating something they shouldn’t, let me say this: Sticking to a super restrictive diet is one of the hardest things I have to do in my life. Harder than the SAT’s, harder than running sprints, harder than writing a term paper. When I’m on a diet, being 100% clean is extremely difficult. It’s not as easy as saying, “Just walk away, just don’t do it.” It’s easy to sneak a bite when no one’s looking. It’s easy to steal a scrap when you convince yourself that one bite won’t make a difference. However, it’s hard to walk away when you feel like food will make you happier. It’s hard to leave the scene when you miss chewing (if you’re on elemental.)

Sadly, I’ve cheated on a few of my diets. I’ve snuck food, hid wrappers, and covered up crumbs. And let me tell you, afterwards, I feel HORRIBLE. Not only does my body wreck havoc on me, but also I am pulled into an emotional guilt-hole. I hate myself afterwards, telling myself how I should have more self-control and how I’m weak. I tell myself how I’ve let my parents down and how they must be so disappointed in me.

If your children are anything like me, then chances are they’ve felt some of the shame, guilt, anger, weakness, and complete and utter hunger that I’ve felt.

If you catch your child cheating, or if they come to you and tell you that they ate something that they weren’t supposed to, take a deep breath. Yes, it sucks. They’ve either messed up a scope date or hurt their bodies or both. It’s not only time-consuming but it’s money consuming. It benefits no one and only frustrates you more. I get it. But please, realize how difficult of a time your child is having. In a perfect world, sneaking food wouldn’t even be a thing. And yet, in the world of EoE, it seems criminal to take a bite of chocolate. When (not if) your child sneaks food, talk to them. Explain how it hurts not only their bodies, but also the process of healing them. Ask them why they wanted to sneak food; were the hungry? Upset? Lonely? If they cheat when they’re hungry, try leaving their “safe” food in a easy to reach spot. If they’re upset, leave out paper and pencil so they can write down their feelings, and have them throw it in a basket and hopefully that can replace cheating. Figure out the emotions behind the cheating, so you can try to prevent the cheating.

Also, it helps if you keep temptation away from them. Don’t leave fresh apple pie on the stove, don’t leave chips within eyesight, and don’t leave the Kool-Aid in a reachable spot.

Cheating is a hard thing to deal with. If you talk to your child and figure out why they are sneaking food, you may be able to divert their attention to something else and curb their cheating tendencies.


Presents with a Purpose–The Bird’s Nest Collection

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A few years ago, when mounds of medical debt swarmed our lives and when everything seemed too much, I came across a blog about how to make a bird’s nest out of wire.

From there, the idea was born to make these pieces as a way for people to participate in our lives in a tangible, real way.  We have encouraged our friends and family to purchase these pieces and wear them in honor of the boys as a way to share the love of Christ through our family’s story.

To read the full story about the meaning behind the necklaces and the scripture they represent, read this article.

We’ve been in a few months of transition trying to decide how we wanted to go about getting the jewelry in your hands.  So I’m so excited to announce that we have a HUGE online event this Thursday, December 18th at 8 pm on Facebook.

To join the event, join our GROUP on Facebook here!

On Thursday night at 8pm, come back to the group to see all the pieces for sale.  Items will be shipped Friday morning December 19th if you need something shipped for Christmas.

Join us in giving a present with a purpose this holiday season!


Alternatives to Halloween (just a little late)

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Hello again from Columbia!

As midterms and group projects are coming and going, leaves are starting to turn, and scarves are being brought out from the closet, one thing is certain- it’s fall. I love fall. From the weather to the apple cider to the pumpkins, it all excites me. But, (there’s always a but), there’s one thing I could certainly do without- Halloween.

Don’t get me wrong; I love costumes and scary ghosts and all that jazz. The thing I could do without on Halloween is all of the candy. The simple concept of another holiday focused around food angers me more than one may imagine. This country as a whole worships food and schedules their whole day around it. Don’t get me wrong- food is important. But food should be about nutrition, not about socialization. However, I won’t go off on a tangent on my opinions about America and its food obsession…that’s not the point in this article. Today, I want to talk about some alternatives for Halloween trick or treating.
One alternative is to take your child and do something that they like to do. When I was on the elemental diet, and my extended family would get together for big meals, my mom would take me on a “date.” My go to activity was shopping. We would go to a few stores, walk around a little bit, and I would get to pick a special treat. It was a way for me to get my mind off of the delicious food I was missing while spending quality time with my mom. But you could do any activity with your child! Let him/her dress up in their costume and take them to the movies! Take them to putt-putt! Or ice skating (if you live up north.) It’s a fun way to take the focus off of candy, while still having the fun of dressing up.

Another alternative is more on the service side. One thing that can happen to a lot of older children is self-pity. And while I understand how hard it can be, I also believe that too much self-pity can be a dangerous road. I always remind myself that there is someone else out there who is terminal, or who is in pain worse than mine. Back to the alternative- take them to a local children’s hospital and let them pass out small toys or stickers or candy. You can purchase a big bag cheaply, and yet it can make a big impact. It not only feels good to give the kids in the hospital an experience that they can’t have right now, but it shows your child how, not only are they blessed even though they go through hardship, but that they can help another child in need. It can be a wonderful night that will be much more memorable than walking around a dark neighborhood.
I hope this article helps a little bit with the dilemma of food-centered holidays. Be expecting more when Thanksgiving and Christmas roll around!

Love always,

Danielle