It happens almost every morning.
As he wakes from his fitful sleep that was interrupted by sweat drenching and gut wrenching, he curls his body around the gnawing ache in his stomach, the one that threatens to wretch and heave, and he clamps his eyes shut tight and prays desperately to God for the strength to rise another day.
He is eleven.
He is my son…and I cannot help him….and it is eating me alive.
I stroke his hair and back and pray healing over his body.
I pray “Lord, help my unbelief.” My head knows You can and do heal, but my heart doesn’t trust it.
My heart rises up to choke out the words, “It’s time to get ready for school,” and he clamps shuts his eyes and nods. “Give me just a minute, Mom.”
Tears well up and I turn away and on the inside I rail at the world and at me and at God because dear God he is only eleven and yet every morning he makes a decision that I, in my age and maturity, would struggle against.
I am transported back to the morning just a few weeks after his sixth birthday. The morning I woke up to find him asleep on the bathroom floor with his pillow and blanket. It was the first time he had not come to wake us when he got sick in the night; the first time he closed the door so we could rest. That morning, as I held his heaving body over the toilet for the third time in an hour, I realized our life would never be the same. And as I rocked him and told him he didn’t have to go school that day…we would stay home and rest, he took my face in his hands and looked me in the eyes and said,
“Mama, this is my life now. I can’t just stop living it.”
He was six….
And so wise…wiser than I. And my heart rose up in my throat, and tears welled up in my eyes, and a mother’s bittersweet pride filled up my chest and I railed at the world and at me and at God.
This journey has been long and arduous, hard for our whole family, and we are not near the end of it. We had the help of doctors and healers in the beginning…until there was talk of stomach tubes and elemental formula and a growing boy who can’t eat and my mother’s heart said no. Then we traveled alone and have for the last few years….feeling out our way….having good months and bad months…and good days and bad days…..But now, it’s been six bad months in a row and countless bad days and every morning is the same heart wrenching and gut wrenching routine.
So would you pray with me today? Pray for Xander’s healing first and foremost, but also for heart and head wisdom for our family. It is time to walk the journey with others again and it takes a good deal of discernment to determine who those should be. It’s time to make some really difficult decisions about our schedule and our routine and make changes that may be painful for all of us, and it is time to face the fear that we may have harder days ahead of us, and frankly, my strength for the journey has been sapped by the miles already traveled.
Thank you, Lord, for this absolutely amazing family you’ve given me stewardship over. Thank you for the wise little soul you knitted into my son, and for the partnership of a man who is rock solid and yet tender and gentle at the same time, and for a place where my heart feels safe enough to say “I don’t feel good enough.” Thank you, Lord, for preparing us for this journey and for walking with us every step of the way. Lord, I know you heal and restore and redeem…I declare that by the blood of Jesus Christ and the resurrection and life of Jesus Christ, that my son will be healed. Lord, I praise you and claim that healing now. In Jesus name, Amen.
Thank you for your prayers. If you’re interested in learning more about Xander’s disorder- Eosiniphilic Esophagitis check out www.apfed.org and here’s a post I wrote several years ago about where we were on this journey.