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.
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!
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!
For a special treat, we make fries, which are slices of avocado rolled in rice flour and fried in avocado oil.
Sometimes he likes to keep it simple and he wants a smoothie. This is made with frozen blueberries and rice milk.
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.
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.
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.
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 🙂
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.
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.