~ When you feel like you are drowning in a sea of medical worry, you must let go of what you thought was your sturdy anchor, and learn to ride the waves. ~ 

Part One

It was a dark evening. No one else was up, and I could hear the trees rustling with the stormy winds. My six-month-old son had once again awoken in terrifying screams. As I cradled his feverish little body, I held him close, hoping breastmilk would soothe him. His body was still shaking as he continued to cry and moan. He wanted to be comforted, but I could see he was in pain. It was just after one o’clock in the wee hours of the morning. Like every other night, he then began vomiting. When he was a newborn, we didn’t think anything of it. Babies spit up, no big deal. Yet he never stopped. As he got older, it continued more violently. Doctors told me not to worry about it. “It’s probably nothing,” one said. “He’ll grow out of it,” another had told me. Yet, here I was with a stack of burp cloths next to me, each one getting filled and then grabbing another. He moaned and gripped me as his body convulsed and vomited again. I found myself gently rocking in the rhythm of the trees, and the world seemed to slow down. He’d look up at me, pale and gaunt, sweating and exhausted. His arms and legs covered in blotchy hives, no one seemed to care to help ease his pain. The darkness hung about the room in silence, and I felt so hopeless—so very alone. Closing my eyes, I entrusted him to God the Father. Only our Lord knew what was wrong and could guide us to finding healing. The leaves outside rustled again, but this time the sounds brought peace.

It takes great courage to care for a child who has an illness or disorder that requires specialty care. It is never easy. The initial process of finding a diagnosis, too, can be its own excruciating journey. Once a diagnosis is found, then begins the process of understanding your new normal, your new schedule of appointments, your new list of medications, your new daily recording chart of behaviors, your new worries, your new training in giving injections (or breathing treatments, or you-name-it medical procedure that should probably make you an honorary nurse by now . . .), your new approach to discipline, your new balance between medical and everything else, your new version of motherhood—basically, your new life.

This new life brings so many changes, and you feel—what is this? Are you sad? You think this isn’t right! I should be happy to have answers and be able to help my child. You don’t know why the thoughts come, but guilt begins to creep in with every thought of “I wish my child didn’t have this!” “I wish I didn’t have to do this!” “I wish God could make it all better!”

Here’s the good news: you are perfectly normal. You had an expectation of your life; you had a vision of what your life, your child’s life, your family life “should have been,” and that is gone now. You are allowed to grieve this loss. In fact, it is emotionally healthy to let this grief out instead of pretending it isn’t there. This doesn’t take away one ounce of love you have for your child! For it is only when we allow ourselves to grieve “what should have been” can we come to fully accept “what is now.” It seems counterintuitive, but allowing this grief is how you can peacefully and joyfully move forward to the new reality you must embrace to care for your child.