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.
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.
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.
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!