Prophesying in the Midst

It was December 13th, 3 months after coming home to America, eagerly anticipating health answers. Since Asa was born, he had multiple extreme serious health concerns, malaria a few times (which is normal for Liberia), measles, pneumonia, and Hepatitis B. Upon returning home his blood work showed extreme high liver enzyme levels. Our first doctor was not concerned and said it was probably just an infectious disease lingering. We finally got referred to every specialist under the sun and began to narrow down the issue. We finally got to see a neurologist, where he told us based off the blood work he felt it was Duchenne Muscular Dystrophy but needed to complete genetic testing to confirm. I remember when he said it out loud my ears began ringing and I felt like I couldn’t hear anything but the ringing. I could feel my eyebrows flex and my head tilt, thinking to myself, “no, no, no. This doctor doesn’t know what he is saying. He doesn’t know what we have been through.” I nodded my head politely, not accepting anything he was saying and left the appointment genuinely thinking I didn’t even need to know how to correctly pronounce DUCHENNE because I had decided that there was no way it was possible that he would actually have it. “If I really muster up every ounce of faith I have, they’ll call back in a month after the genetic testing has been done and they will tell us, ‘it’s a miracle, your son is fine!’” I got home from the appointment and lost it... When people asked me my biggest fear my answer has always been that one of my kids would get sick... not like a cold or the flu, but sick sick. I had sat beside my mom who had leukemia not once but twice, both times not knowing if she’d make it... That 4 week wait happened to fall on our first Christmas as a family. As hard as I had tried to put it on the back burner and forget about it, the lingering wonder of the test results remains in my peripheral vision....

Four  weeks went by and our family was in Colorado for a sweet friends wedding. Just the day before we got the call from our neurologist our family spent some time with my spiritual mother, Lisa Bevere. When we shared the news of the latest with Asa and what the doctors think the diagnosis may be and if it was how we’d get through it, I’ll never forget her response... “The way you’ve got through every other battle that has come your way, clinging to Jesus.” The next day we were sitting at the Denver airport about to board our plane when my phone rang. The neurologist delivered the diagnosis with tenderness and sorrow, “I’m so sorry, I wish I could tell you it’s not what we thought it was, but it is and I’m so deeply sorry. It’s Duchenne Muscular Dystrophy.” We hung up the phone and didn’t say a word, just hugging each other. I’m not sure what it is about being 30,000 feet up in the air, but it always feels so holy to me... For the next 2 hours up in the clouds I held Asa like never before and wept. I was so exhausted. I was so tired of feeling like our family was always on the receiving end of bad news. I was so tired of wondering what a life without nonstop battles would look like. I was so tired of wanting for one minute an easy road... And in the middle of my pity party, having every reason to partner with hopelessness, 30,000 feet up in the air God started to speak to me about Asa’s future...

I went back into my journals and read the different prayers, visions, declarations I had written down about Asa from before we ever knew him. I read things like “I saw Him bowing low with the poor and praying for blind eyes to open, and they actually opened” “I had a dream last night He was smiling and laughing and just kept singing ‘Revival is happening in me’” I read about the time the Lord showed me The Lion Tribe of Judah pacing back and forth personally protecting him while he was still in Africa and not yet ours. And one of my favorites was reading back nearly 8 years ago before Zac and I were married & I heard the Holy Spirit clear as day say “Elizabeth, you’re a woman with wings.” We named Asa on Christmas Day, 3 days after we had been matched with our children not knowing that he was severely ill. In Hebrew his name means ‘Healer’ and in Portuguese it means ‘Wings’. The day we got that call from the neurologist I wrote this in my journal, “Parts of me feel like my name has just been called to enter the ring and fight and other parts of me want to crawl under the covers and pretend my life doesn’t look the way that it does. But maybe that’s the beauty of having The Lion on my side? That fighting sometimes does in fact look like crawling under the covers. Not all the time, but sometimes... That when I don’t have the words or the strength, He always does. That being a huge ball of tears doesn’t always mean I’m being weak, but actually means I’m just reflecting Jesus.” (John 11:35) The tension of this Duchenne journey isn’t easy and any day you assume I have it together, know that you’re mistaken. My heart is a mess but my hope is that somehow God would use it to display the product of willingness + trust. Hinds Feet On High Places says this, “Help me to trust you, as much as I long to love you.” And that truly is my deepest cry, to trust Jesus, with everything, including my son.

ebie hepworth