Last weekend, I snapped a photo of my 15-month-old son sitting on my husband’s shoulders, as we walked leisurely on the pier of a local beach. My son, Malachi, smiled serenely as the ocean breeze brushed his face, watching the planes fly above him. I sauntered behind, wishing we could press the pause button, and have this sweet moment last a little longer.
Sixteen months ago, my husband and I welcomed our beautiful baby boy into our lives. The first two days were full of tender, joyful moments of becoming new parents—learning our baby’s movements and facial expressions, as we embraced being a family of three.
In the days and weeks that followed, this sweet, new adventure became a roller-coaster ride of uncertainty, fear, and sorrow. Our son was found to have a rare case of newborn jaundice, and in his first six weeks of life, he underwent numerous blood tests, two nuclear scans, a liver biopsy, and finally, a nine-hour surgery to diagnose and treat a rare and chronic liver condition, called biliary atresia.
As new parents of a child with a chronic and progressive illness, the sweet and joy-filled moments are outnumbered by moments of sorrow, fear, and worry.
There is a familiar dread and heaviness in my heart every time we drive in traffic to the ER for another fever, hold him while he screams as he is being poked and prodded, hand him over to be taken to the operating room or wait at home for the next infection or complication. I have never been more grateful to sleep in my own bed after contorting my body to fit into the hospital crib to cuddle with my son the night before a procedure. We have been exhausted to the bone, desperate for healing and reprieve, fighting against isolation and hopelessness.
We didn’t ask to be in this story. But this is our story, and hospitals, IV antibiotics and a possible liver transplant are its major characters. Suffering has been a constant since we began this journey of parenthood.
Many times I have asked the Lord to take this cup away, and in the early days of his illness, I assumed that He would. I would tell myself: His liver will be healed. The nuclear scans will be normal. The lab made a mistake and his liver markers are fine. The surgery will fix everything. The antibiotics will work this time. But He hasn’t.
On the worst days, life feels like a series of Gethsemane moments—a desperate plea to the Father to remove the pain and suffering and the uncertainty to come.
The cup has not been taken away, but the Lord has been teaching me how to grieve through my son’s illness. I have learned that grief is the acceptance and surrender to a loss of a person, thing, hope, or expectation, and I have grieved losses in many different ways this year—through anger, frustration, the kind of crying where sobs have shaken my entire body, and in silence with only tears flowing.
I have wept in the middle of the night holding my son in his hospital room after an emergency that could have caused significant hemorrhage if the nurse hadn’t come in to check on him. When he was just six days old, I howl-cried in the arms of my husband and mother after being told the results of his nuclear scan—that bile wasn’t draining from his liver to his intestine.
I have been frustrated at God about unanswered prayers, questioning his care and love for my family, as we have ended up in the hospital over and over again, sometimes without a chance to recover emotionally from the last hospitalization. I have surrendered my son into the Lord’s hands (and the hands of the surgeon and anesthesiologist) the night before his nine-hour surgery when he was five weeks old and barely ten pounds.
I have been angry when we have had to cancel trips and miss quality time with good friends and family because we were in the hospital. I spent Malachi’s first Thanksgiving, Easter and Mother’s Day this year, holding my feverish son on a hospital gurney. I have lost hours of sleep because of machines alarming in the hospital room, because of staying up late and waking up at the break of dawn to connect him to his IV medication, because of worrying about what may happen in the next hour, day, or week.
In grieving these losses, I have allowed the Lord to enter into my heart, my suffering, my process.
On most days now, I have come to accept that walking with my son through his illness and whatever may come will be part of the story God is writing for me—even if it means spending holidays in the hospital, losing more sleep, healing in the form of a liver transplant, waiting longer than expected for my prayers to be answered.
In ways I don’t fully understand, releasing this grief to the Father has given my heart more space to see beyond myself and the plight of Malachi’s condition, to feel emotions other than dread, hopelessness, and pain.
Through the mystery of surrendering to this story, I experience freedom.
Freedom to be grateful for the simple things: watching Malachi sleep peacefully in his bed, enjoying his squeals of laughter, being together at home as a family, cuddling with him without being entangled by lines and monitors.
Freedom to celebrate the small victories: a miraculously quick and painless recovery from his nine-hour surgery, an excellent response to antibiotics during each infection, taking his oral medicines without a fight.
Freedom to accept love and help from friends and family.
Freedom to connect with and embrace others who are suffering.
Freedom to let go of the outcomes and the future I can’t control.
Freedom to enjoy the sweet, tender moments like the one above, knowing that sorrowful moments may come.
Freedom to hope for healing, but to experience mercy when it is not yet here.
Freedom to say to my Father, Not my will, Lord, but yours be done.
Thanks for your prayers for Malachi’s healing and blessing. For more on Malachi’s condition, it is explained HERE
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