“May the God of hope fill you with all joy and peace as you trust in Him so that you may overflow with hope by the power of the Holy Spirit.” Romans 15:13
Hope, joy, peace…isn’t this what we all long for? We take it for granted when we possess it, but we are starved for it when we are without. I have been without for a large portion of the last few months. Empty and without. Doubting and without. Terrified and without. WITHOUT. There’s something about being without something…that makes it sweeter than ever once it returns. I am in that sweet season now. Praise God! I am so grateful that I can feel God’s presence again…that I can feel hope, joy, and peace. I am aware that His presence never left me, but I spent many days and nights feeling alone, confused, and discouraged. I’ve had many opportunities in my life to learn that my feelings can be all over the place, but my God is unchanging, steadfast, merciful, and thankfully slow to anger. However, I am a forgetful student. The Lord has been patient with me. I think I finally get it! I’m learning to say “no” to the rollercoaster ride my heart tempts me to ride. While the world is telling me to, “follow my heart,” scripture is clear. “The heart is deceitful above all things and beyond cure. Who can understand it?” Jeremiah 17:9
August 3rd, My son, Riley’s battle for his life began. He was terrified by the visual and auditory hallucinations he experienced after going without sleep for 6 consecutive nights. He spent days pacing through our home, lacked focus, and was having difficulty answering basic questions.
On Thursday, August 7th, I took him to our family doctor to request medication to help him sleep. I suspected that his hallucinations were related to the insomnia. The doctor refused to prescribe sleep medication, but did perform some basic lab work. These tests all came back normal.
On Monday, August 11, Riley began to express fear that he was going to commit suicide. We decided to take him to New Hanover Regional Medical Center’s ER. We were concerned that Riley’s sudden onset of psychosis and suicidal ideation might have been the result of a brain tumor or infection. We were dumbfounded when the ER doctor not only refused to perform the tests we requested, but also informed us that our son was now a ward of the state. We were stunned that our parental rights could be taken away so easily. The ER doctor informed us that Riley would be cuffed and transported in a police vehicle to a psychiatric hospital the next morning. We would not be allowed to follow. I was completely shocked and speechless! This ER doctor made it very clear that we would no longer be making decisions about where or how Riley would receive treatment. We begged him to reconsider. He wouldn’t budge. I spent the night with Riley in the ER, dreading the next morning. I am weeping as I write this. I didn’t sleep. I begged and pleaded with God all night to have mercy on us. The situation felt sureal. I hoped that it was a nightmare I would wake up from. The gnawing ache in the pit of my stomach was growing as I allowed my mind to imagine the horror the next morning would bring. I spent the night meditating on scripture and commanding my heart to put my hope in God, but my peace was lacking. I was totally dreading the beginning of the next day. The next morning, we had our first miracle! The police officers assigned to take Riley to Brynn Marr Hospital were both men from our church. They didn’t cuff him, and even told him that they were going to “take him for a ride and listen to music.” They treated his transport like it was a field trip. Riley was treated with dignity and compassion by these two officers. I wept with relief and thanksgiving as I followed the squad car in my van. I was hopeful that Riley could get the help he needed. I had been informed that Brynn Marr was a wonderful facility with a family atmosphere. I was under the impression that I would be allowed to stay with my son while he received treatment.
My expectations were dashed when the intake counselor at Brynn Marr informed my husband and I that we would have to wait until visitor hours (2 hours on Sundays) to see Riley again. I couldn’t believe that they could keep him from us for 6 days. I felt as if the wind had been knocked out of me! I remember letting my head drop between my legs to try to catch my breath. I can still see Riley’s confused face as they took him through the doors that locked him in and us out. Later, I learned that Riley, in his psychotic state, thought that we had disowned him…that he was no longer our son. From August 12-19 Riley was “A Ward of the State of North Carolina.” Our parental rights had been stripped from us. The most difficult aspect of this was learning to trust God to use the hands and minds of people we didn’t know (and many who didn’t know the Lord) to protect and care for Riley without our input. This was the truly letting go part. At times I felt the peace of God wash over me despite my circumstances, but mostly, I found myself chasing after that peace, and that peace slipping through my fingers. I not only missed my son terribly, but I felt as if God had forgotten my family. We pleaded with the psychiatrist to release him so that we could take him to a research hospital where he could get the proper care. We spent the days in the waiting room hoping that we could see Riley. Up to this point no testing had been done to see if Riley’s acute pychosis had a biological explanation. We later learned that the psychiatrist assumed that testing had already been done at NHRMC. He informed us that he wouldn’t have admitted Riley to Brynn Marr if he had know that testing had not been performed.
The evening of August 19, Riley miraculously came out of his psychosis (for about 5 hours) and the psychiatrist released him. By the time Riley had been discharged, he’d lost 25 pounds in a little over 1 week.
We drove straight to Chapel Hill and spent the night of August 19 in the UNC Emergency room waiting for a bed to open up. Through the night Riley slid back into mental confusion. He would spend the next 25 days at UNC as the doctors performed various tests and tried to stabilize him. He endured several EEG’s, MRI’s, and constant blood work ups. Each test was extremely stressful for him, because he thought the doctors and nurses were trying to hurt him. His brain was still so sick. One of the tests indicated an equivocal reading for the tick borne disease, Rocky Mountain Spotted Fever. The infectious disease doctors doubted that there was a correlation between this result and Riley’s symptoms, but reluctantly put Riley on a course of antibiotics. We began to see improvement.
Hundreds of people had been burdened to pray for Riley from the East to the West Coasts and many places in between. I even had a friend tell me that Riley was on her churches prayer chain, but she assured me she didn’t put him on it (and I don’t personally know anyone else who attends her church). We have another friend who had shared the prayer need with an African American pastor of a country church outside our community and this pastor, who did not know Riley, insisted that my friend join him in fasting and praying for Riley. The Topsail Young Life Committee instigated a 24 hour round the clock prayer. One of the most obvious evidences of God’s provision occurred when a dear friend and prayer warrior connected us to a Physician’s Assistant named Teresa Holler. She did not personally know this physician, but had heard that patients had experienced healing from illinesses like Rocky Mountain Spotted Fever under her care. Jon had Riley’s medical records sent to Teresa so that we could work with her when we returned home. My parents held down the fort at home as we cared for Riley at the hospital. My best friend came to stay with us and my cousin left her own family and came to help my parents. We had meals provided for weeks by friends in the community. Riley received cards and goody bags from his Topsail Young Life family and the friends in the band at Topsail High School. We cannot express how much the prayers, encouragement, and care meant to us during this dark season.
Jon & I orchestrated our lives’ around visiting hours. Riley continued to think that “the police were after him” and that “he would never graduate” “he would be homeless” and that we would “ditch him.” He asked the same questions everyday, sometimes repeating his concerns several times in the same hour. It was exhausting! We had to patiently correct his thinking and reassure him that he was going to be ok. When we engaged him in a logical discussion about many of his unwarranted fears, he would recognize that the fears didn’t make sense and that the accusing voices in his head were false. For much of his stay at UNC, Riley was unable to perform basic selfcare. For instance, he sometimes forgot to rinse the soap off his body after a shower and couldn’t dress himself. He had a hard time deciding what to eat. He spent his days lying in his bed, looking off into the distance, pacing, and scared. However, I got little glimpses of God’s presence in Riley even in the midst of his mental confusion. One of those involved a discussion on religion among the other patients. I can still see the poster with a quote from Buddha, “YOU ARE YOUR OWN SAVIOR” plastered on the wall above the table where the discussion was taking place. Riley sat quietly with a blank look on his face as the conversation progressed. Quite unexpectedly, Riley interjected, “It’s not about rules and regulations. It’s about relationship with Jesus.” This was one of the few times Riley engaged any of the other patients. He immediately got up and walked away after expressing his opinion. Finally, we began to see some improvement in Riley’s mental health. We are so grateful to the doctors and nurses at UNC. The majority of the care he received was awesome! Thankfully the doctors decided that Riley might improve more quickly if he were allowed to return home.
We returned home on Monday, September 15th. I was filled with a mix of joy and apprehension. Riley was still very sick. He was no longer psychotic or catatonic, but he had been reduced to a shell of the person we remembered as our son. He was so paranoid that leaving the house was almost impossible and he would freak out if anyone came to the door. Although the delusions were absent, he had a persistent empty feeling and was paranoid. He had to force himself to do the things that used to bring him such joy. We used a timer and encouraged him to play the drums for 15 minutes at a time. He usually couldn’t’. His hands constantly shook, making eating and playing the drums extremely difficult. He was having difficulty concentrating.
My journal entries
September 15, 2014 Psalm 13 “O Lord, how long will you forget me? Forever? How long will you look the other way? How long must I struggle with anguish in my soul, with sorrow in my heart everyday? How long will my enemy have the upper hand? Turn and answer me, O Lord my God! Restore the sparkle to my eyes or I will die. Don’t let my enemies gloat over me, saying, “We have defeated him (her)! Don’t let them rejoice at my downfall. But I will trust in your unfailing love. I will rejoice because you have rescued me. I will sing to the Lord because He is good to me.” Lord, I don’t know if I trust your unfailing love and I am tempted to stop rejoicing. I don’t know if you will ever rescue Riley. Forgive me. Who am I that you are mindful of me? That you love me? Help me to believe that you care and that you even know what we are going through. Are you a God who is far off…unengaged? That is how I feel. As I read scripture, I know this isn’t true. But my heart is broken, weak, melting. My faith has been attacked from every side.
September 20, 2014 How long Lord? How much more? I am weary. I am discouraged. I feel alone. My heart feels as if it will melt to nothing. My faith is waning. In Your word, you have made me promises, but I don’t see them being fulfilled for Riley. He loves you Lord. He has remained strong, choosing you. Why do you allow the tormentor access to his mind and body? I am having a hard time trusting you. My son, who You so fearfully and wonderfully made, wants to end his life. Why does the tormenter rage on? Why don’t You come quickly? I beg for mercy Lord. I don’t understand. Please show me the root. Please show me what I need to do.
On September 23 rd, we met with Teresa Holler at Victory Health. I remember her words so clearly. She spoke with authority and gave us hope. “Riley, you are not crazy. You do not have a mental illness. The doctors in Chapel Hill saved your life. Do you know that a large percentage of people who contract Rocky Mountain Fever die? Those doctors saved your life, but now we’re going to make you whole and well.” We left her office in tears with instructions to head to the lab for more blood work the next morning. I was cautiously optimistic. Riley’s lab results indicated several bacterial infections in addition to Rocky Mountain Spotted Fever that were probably caused by a tick bite he had in June. We were also surprised that he had celiac disease. We immediately began eliminating gluten from his diet and a course of antibiotics and herbal remedies as well as vitamins to build up his immune system. To be honest, I was skeptical but desperate. I want to make it clear that I did not have incredible faith. If anything, I was more often fearful, angry with God, and lacking trust. I had several pity parties everyday and my mind was undisciplined. Despite my lack of faith, Riley made a miraculous recovery 5 days after he began to follow the regiment Teresa had prescribed. I learned so much as I watched Riley’s mind return to wholeness.
I learned that there is not a “one size fits all” controlled method to healing. There are not identical step-by-step instructions every patient must follow to be healed. Most importantly, I learned that Riley’s healing did not depend on my great faith or effort. Honestly, I was so unfaithful and doubted on so many days. The Lord has taught me that He desires for me to be dependent on Him, pressing in, honestly expressing my fears and anger. He desires intimacy with me. Though I doubted His goodness, was angry, even threw my bible on the ground and walked away refusing to read it out of frustration, I never turned completely away from my Creator. My face was set toward Him, and even in my doubt, a miraculous thing happened. I fell more in love with Him.
Riley is a walking miracle. He is back in school and participating in all the things he loves (surfing and playing the drums). We were able to titrate him off all his pharmaceuticals under the supervision of 3 of his doctors. Today I refer to the doctors at UNC and the medical professionals who cared for him when we returned home as the “Dream Team.” They were great, but I really believe it was the Lord guiding them as they nursed Riley back to health that brought the healing. Jesus is worthy of all our praise! We were all surprised at how quickly the healing came. It felt as if the prayers of God’s people had filled a bowl in heaven and the healing poured out over Riley.
The Lord has been faithful. Thank you from the depths of our hearts for standing with us in prayer and for believing and trusting God for a miracle, when we felt hopeless.
“There is a time for everything, and a season for every activity under the heavens…” Ecclesiastes 3:3
The Season of Singing has come!