Mom, you recently asked a dear friend about your value and belonging now that you have Parkinson’s. You wondered about your purpose as you struggle with no longer being able to serve others in the ways you always have. I am here to tell you on behalf of everyone that has ever known you, that your value and belonging have never been defined by what you could do for others. Your value and belonging have ALWAYS been defined by who you are and whose you are.
You are the most Godly, loving, kind, generous of spirit, selfless, peace-giving, and gracious person I’ve ever known. Parkinson’s will NEVER take away all the lovely and life-giving qualities that make you who you are!
What you’ve always given and continue to pour into your family is an everlasting love…a grace that surpasses a lifetime…an agape love that has wrapped itself around each of us for eternity…a kindness that is warm and unconditional…an endless lesson of how to care for others with compassion and servanthood.
My hope has always been and will always be that I could grow each day to be more like you. This prayer doesn’t change as you struggle with the symptoms of Parkinson’s. Parkinson’s can’t steal your value…nothing can! Mom, your value isn’t in how much you can do…how many hours you can help…how many “yes’s” you can say…how many brownies you can bake (although those are amazing!). Your value has and always will be the beautiful fruit of the spirit that you display every day of your life. Your value has and always will be the heart and spirit that God created in order for you to love others in ways they’ve never been loved. Your value has and always will be from a Father who loves you as mightily now as he did the day you were born.
You must know, and more importantly, believe that your family values you as much today, in this moment, as we did when you fixed breakfast every morning, sang us to sleep every night, attended every choir concert and ball game, took us school shopping, and helped raise our children. It has never been what you do for us…it has always been about how you love us. The love that pours from your soul has not changed with Parkinson’s, and no disease could ever steal our love from you. You belong. You are valued.
There truly are not words to describe how proud I am to call you mom. Jesus is Love and so are you! The love you share shines bright into the hearts of those who know you and that light is passed from person to person eventually touching people you’ve never met. The light you have imparted in other’s lives will never extinguish, nor will the legacy of your life.
For 34 years, I described my faith as “inherited.” I spent a significant amount of my adult life wrestling with my convictions and whether or not my spiritual life was solely a result of my upbringing. I openly shared with other Christian friends the desire to have a faith that was my own, a faith I experienced first hand, a faith I had heard so many others enthusiastically proclaim from the pulpit after encountering a miracle in the midst of their life’s “rock bottom.” I longed for something to strengthen my spiritual walk…I longed to know The Lord in a way so real that there would be no room for doubt….I longed for a testimony that I couldn’t ignore or explain away. I always sensed deep down that to secure my faith, I would need a moment where everything changed….saved by something supernatural, something undeniably bigger than myself. I spent many years praying for that moment and that it would forever obliterate my lingering uncertainty. I prayed for a testimony that I could share with passion and authenticity.
I was 12 weeks pregnant with our first baby and it was 7am on Mother’s Day when my phone rang. I saw that it was my sister-in-law and immediately assumed she was calling to wish me my first “Happy Mother’s Day.” I answered the phone and cheerfully said, “Happy Mother’s Day Nicole,” but in a distant and shaky voice she responded by asking if I was with my husband and if she could speak to him instead. As my husband held the phone, I thought I heard her whisper, “Burt’s dead.” My mind immediately began rejecting the sights and sounds around me as I watched the color drain from my husband’s face and listened to him vehemently repeat, “that’s not funny….stop…why are you saying that?” He left the room and I watched the walls close in around me as the world disappeared. I somehow summoned the courage and the strength to walk from my bedroom to the living room as my husband returned from the porch and somehow conveyed to me that my brother had died in a tragic accident. Reality ripped through me like a jagged knife and I my heart was left severed…barely beating. Soul shattering pain has a sound. It’s deafening silence is filled with cries so raw they don’t sound human. Grief has a taste and a texture. It is sharp and unforgiving. It is bitter but necessary to survive. Tragedy alters your senses forever. I began trembling in an effort to reject the truth as I begged, “you must’ve misunderstood…that could not have happened…he’s probably hurt and in the hospital, but he’s not dead!” I insisted that my husband call the chaplain to get the correct information…information I could live with. I was absolutely convinced there had been a horrible mistake…an incomprehensible misunderstanding and that another phone call would clear up all of the confusion, loss, and darkness. With another call it was confirmed that we were now facing the most harrowing weeks of our lives. I fell to my knees in the middle of the floor, crying out in a voice I didn’t recognize, shaking and rocking as if my body was incapable of absorbing another breath. My husband placed a blanket around my shoulders as if my trembling could be rectified with physical warmth. Screams escaped the deepest part of my being, “not my family! This doesn’t happen to us! This doesn’t happen to us!! What about my mom!? Where’s my mom?! It’s Mother’s Day! Not us! Not us! Not my brother! My mom! Where’s my mom?!” Even 3 years later, when I think back to that horrifying day it’s as if I’m separated from it all and watching from a dark detached place. From afar I can see my mom at my front door trembling with disbelief. I watch my little brother kick open the front door, throw his hat across the room and embrace my mom and I with arms that would never hug our brother in this world again. The sorrow is tangible. The pain audible. I used to hear stories of loss or watch tragedy on the news and say, “I can’t imagine!” and I was right…I truly could never have imagined how horrific unexpected grief would be. Even now that I’ve lived through something traumatic, there’s a barrier my soul has created to protect me from fully re-imagining the devastation. When I let my mind wander, I still cannot conceive surviving the kind of loss my family has already survived. It’s as if what we endured that day was from a separate life…a life once removed and even though we made it to the other side I cannot fathom weathering another tragedy like the loss of my brother.
Five months after Burt’s passing, my little brother (Ryan) and I flew to Seattle to tour where our older brother had spent the last year of his life. We ate his favorite food at his favorite restaurants, took his favorite hikes, and visited where he had very happily worked for the year before we lost him.
It was a beautiful and gut-wrenching trip. As we waited in the airport for our flight home we reminisced about the emotional yet healing trip we had just encountered. I was flooded with emotion when I finally worked up the nerve to ask Ryan, “How do you know Burt is ok? How do you know God is real? How do you KNOW that you know?” Void of judgment, my younger brother shared with me that he knew Burt was ok because he knows The Lord is real and that his personal relationship with God our Father has made his faith strong. With the few tears I had left, I admitted to Ryan that I didn’t have this faith but that I had longed for it for years. I confessed, “I don’t know that The Lord is real. I don’t know that Burt is ok or that there’s a heaven. I have so much doubt and I want to have peace. I have no peace and I’m scared.” Ryan and I had a powerfully honest and vulnerable conversation and he promised he would be praying that I would find the assurance and peace I was seeking. There was no way for me to imagine the turn my life would take, the challenges I would face, the fear that would soon flood my heart and mind.
Shortly after our trip I became completely debilitated with a chronic migraine that stole my life for months. I wasn’t just weak or weary…I was profoundly incapacitated. After having our son, Isaac Burton, we moved in with my parents. I was unable to work, unable to drive, unable to run a simple errand or clean my house. I was unable to do most of the things we take for granted every day. The loss I experienced from no longer being able to participate in everyday tasks didn’t hold a candle to the grief I felt due to not being able to care for my one and only newborn baby boy. I couldn’t provide the basic things a mother gives her child. I couldn’t feed my son, I couldn’t bathe him or play with him or even laugh with him. I couldn’t comfort my son when he cried.I was soon on 10 different medications whose side effects made me so ill I lost 40lb in less than 2 months. I saw multiple chiropractors, acupuncturists, reflexologists, massage therapists, dentists, endodontists, 6 different neurologists, visited the ER 3 times and was finally hospitalized for infusion therapy for 3 days with zero progress. It was after this hospitalization that my husband drove his spiritless wife back to her parent’s house while she was swallowed by a dark abyss.
A day or two after my hospitalization my brother and sister-in-law brought dinner over for the whole family. My pain was too extreme and the multiple meds I was on made me too sick to eat, so I retreated to my parents room and laid down on their bed. My brother soon followed to offer me a head and shoulder massage in the hopes that he could give me a little relief from the constant pain I had been living with for months. My brother began praying over me and although I don’t remember his words, I do remember the tears of desperation and hoping with all of my being that the power of his prayer would lead to that miraculous testimony I had been longing for. I was imploring the Lord for a miracle.
The next day, as I was taking a shower, fear hopelessness and suffering poured out of me in angry and desperate cries. This moment became the darkest and most isolating time I have ever experienced. The minor physical relief I felt while in the shower magnified the emotional pain of knowing that this relief was only temporary and that my quality of life would once again disintegrate as soon as I stepped out of the shower. I began to sob so uncontrollably that my mom and dad heard me from the living room. My mom opened the bathroom door and hesitantly asked me if I was ok and I could barely choke out a “no.” She offered me an over-sized fresh towel, but I was well beyond physical comforts. Soon, my husband came into the bathroom. He pulled back the curtain and said, “Renee’ talk to me.” All I could utter, over and over and over as I held myself in the fetal position on the shower floor, was
“I can’t go on….I’m giving up…I can’t go on….I’m giving up…I can’t go on…I’m giving up.”
I explained that if this was living, then I did NOT want to live and that Isaac deserved a mommy who could care for him, play with him, laugh with him. I told him that the only future my mind’s eye held was one where I lied in a bed watching Isaac grow up while he watched me whither into nothingness. I had come to believe that I if I went on living I would do so without being a part of my son’s life and that I couldn’t bare the thought of deteriorating in front of him. I can say without any dramatization that in that moment I wanted to die and I was ready to go…begging The Lord to take me and my suffering and the suffering I was causing and would continue to cause to those who loved me. With fear and determination in his eyes, Pete said, “I will not listen to you talk like this! I will not let you give up or let go. You’re going to get dressed and we’re going for a walk right now.” We took that walk while I barely had the strength to hold myself upright but I could not be convinced there was hope so I continued to repeat,
“I can’t go on….I’m giving up.”
Before my hospitalization I had been gifted a massage with a therapist who travelled to her client’s houses. Having had no improvement from the help of some of the most prominent neurologists in the country there was nothing to lose so I called the therapist and made an appointment shortly after my discharge. Just a few hours after I had proclaimed I was giving up and could not go on, the therapist (Valerie) arrived at my parents house and we met for the first time. She set up her table in my parents room and then asked permission to pray with Pete and I. The three of us stood together in unity and Valerie prayed that the massage would be physically and most importantly emotionally healing. My eyes were almost swollen shut from crying as I laid down on her table. Thirty minutes into the massage Valerie whispered, “I’m going to say something that will probably sound really strange and I hope that’s ok. I’ve never had anything like this happen before, but I feel like I need to share something with you.” Not knowing what to think or expect I tentatively responded, “ok?”
“I feel your brother here and he’s saying that you have to keep going and you can’t give up. You have to keep going! You cannot give up! Have you been thinking of giving up?”
In that instant, I was released from the claws of darkness that had extinguished my hope. In that moment the belief that all was lost was replaced with a promise for the future. In that breath my faith was set in concrete and my doubt was destroyed. Without any knowledge that just hours before I had uttered those exact words, Valerie spoke Truth to my shattered heart. As tears soaked my face, I soaked in the certainty that I would see my brother again and that I would one day be an active and healthy mother to my son. Valerie continued, “Burt and The Lord want you to know that this is just for now. It is not forever. This trial will equip you to be there for others in a way that you would not have been able to without this experience. The Lord is preparing you to be a witness for others…to give hope to others. This is just for now. It is not forever.” She then asked me a question I never would’ve considered. She asked if I had believed the lies of hopelessness…if I had let the spirit of suicide into my thoughts. When I confirmed that I had been consumed by fear and despair she offered me the chance to repent. I had never before thought of the need to repent, but I realized then that I had spent months choosing to believe words from the enemy instead of the promises from My Father. Valerie lead me through a prayer asking for His forgiveness and for His strength and grace to keep my eyes on Him no matter how long my pain lingered. We prayed that I would never again enter that place of desolation and that He would make his plan for my life come alive.
I need to be clear that this supernatural experience didn’t come with physical healing. My pain did not go away. I did not start taking care of my son. I did not go back to work. This was a mental, spiritual, and emotional healing that could be physically felt by those around me. My mom later shared that after my massage she felt a dark cloud lift from our home. My husband agreed that he felt a peace in me he hadn’t had a glimpse of in months. I was a new woman inside. I had a gripping faith. My heart and mind were filled with radiant hope. I had experienced the Lord in a way I never had before and I knew I would one day be whole again. I knew my brother was with our Lord and that he was with me…with us and that one day I would see him, laugh with him, embrace him again.
Shortly after this life-changing event I shared my story with a dear friend. We both cried as I recounted the supernatural change that had taken place in me and then she told me something that made my encounter with The Lord even more genuine and powerful. I didn’t realize it at the time, but she had been at my parent’s house the night my brother prayed over me. She had stopped by to drop off groceries and was told I was in my parent’s room laying down. I recalled someone had been holding my hand while my brother prayed and at the time I assumed it was my mother. My friend shared with me that when she walked into the room there was a wall of suffocating darkness and that it felt like she had walked into my funeral. She said the oppression was palpable and in that moment she knew I was fighting a spiritual battle as well as a physical one. When she left the house she told her husband, “we have to pray for Renee’. She is in a fight for her life.” That night, my friend sensed the destruction I was succumbing to. She had a glimpse of my desire to give up. As she told me her experience I was overcome with awe at the realization that her visit that night and the desperate prayers that followed were a spiritual intervention that literally lifted me from the cold shadows my heart and mind had staggered through for months. It was the very next day that my life was changed forever and I was saved from fear, wariness, and death. When I didn’t have the fortitude to pray there were so many others interceding for me and I will always be grateful for their faithfulness because it was their belief that saved me from my disbelief. It was their conviction that lifted me up to meet and know my God and Savior in a way that transformed me from the inside out.
Even with my heart and soul altered forever I was still living with constant pain and In mid-February, I received a dreaded call from my employer telling me that if I didn’t return to work in 1 week then my job would no longer be protected. As I heard those words from HR, I had 2 thoughts: “This is it, the life I’ve known is over” and then, “Renee’, this is it, God has a plan for your life and you are not in control.” I don’t memorize Bible verses, but my massage therapist later quoted Jeremiah 29:11, “for I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope.” I didn’t realize it at the time, but that verse came alive for me and was branded on my soul the split second I heard that I was days away from losing my job. I finally embraced the realization that if I could will myself well it would’ve happened months ago. I acknowledged that I was not in control of what life doled out, but that I could choose how I reacted to the hand I was dealt. I had a choice…I could crumble, lose all hope once again, and accept that the life I dreamed of was over, or I could let it all go, step away from the helm and TRUST that God had a plan for my life and that His plan is always good. Again I felt that supernatural peace and strength wash over me. I realized during that phone call that I truly had no authority over how my life would proceed, but I knew without a shadow of a doubt that I was surrounded by love, and that no matter what happened to my health or my job, The Lord had a plan and he would give me the strength and grace to see that plan through. I felt this truth (Jeremiah 29:11) in my inner core…a truth that gave me a peace so real that I can only describe it as being from God. I spent the rest of the day struggling with how I would tell my husband that I would most likely be unemployed soon, but when I finally gained the courage to say the words out loud, he also sensed that same inexplicable, “crazy” peace. We just KNEW that we KNEW that we would be okay. My husband and I decided that I would attempt to go back to work the following week and we remained prepared to accept that this probably would not be a successful endeavor. The day before my return was like every other day had been. I had the same level of pain and found it difficult to imagine that the next day of waking up early, getting ready, driving myself into work and starting a brand new job would be any degree of manageable. The night before, I took my regular handful of sedating drugs and my nightly bath, but then something different happened. I went to bed with more peace than I had felt in 5 months. As I fell asleep I said a prayer of gratitude. I was thankful that I no longer felt the urge to control what happened to me and that I could unreservedly rest in The Lord and His plans for my life. I could see that He had used my brokenness for something good. He had used this chapter in my life to deliver me from the prison of worry and fear. Releasing apprehension and anxiety from my daily routine was a freedom I had never had in my life. Roman 5:3-4 says, “we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope.” I was nowhere near rejoicing, but I could finally see how He was using this time in my life to transform me, and I could finally lean into my faith with confidence, because He had made himself so real to me through this trial. The weight of worry had been lifted and I felt lighter.
When I woke up the next morning I was pain free for the first time in 159 days!
I arrived at my new job and although the familiar pain visited me throughout the day, it never came close to what I had withstood day in and day out for 5 months. February 28th, 2014 was the day I finally saw a glimpse of the goodness God had in store for me and I believed God wasn’t just going to give me the strength to live through the pain…He was going to see me through to the other side, and all the while I would be made stronger through the journey. On my way home that day I called the same friend who had been my prayer warrior for so many months and I cried as soon as I heard her voice. I was so overwhelmed with disbelief that I could barely get the words out, “it’s a miracle! There’s no other way to explain it. It’s a miracle! My pain level is manageable! I’m going to be ok! I worked….I can’t believe it…I worked! God is so faithful!” It had been so long since I had been capable of functioning at this level, that I couldn’t stop repeating, “I can’t believe this!” When I walked through my parent’s front door I saw them standing in the foyer anxiously waiting for me to return. I don’t think I was able to get a word out before we were tightly holding onto each other. I realize now that they were there because they knew I would either be ready to celebrate or in urgent need of comforting. I was finally able to tell my parents that I had turned a corner and that one day I would be myself again. The gratefulness, relief and joy we all felt stunned us into silence. The following 7-8 months, I continued to have significant daily pain, but NEVER resembling those previous distressing months. I continued with medications that made me feel terrible and injections in my head to help control the pain, but none of that weighed me down because I was ecstatic to be living again and to be walking with The Lord. We moved back home and began to see our little family develop the way we had always envisioned. I felt nothing but gratitude on the days I would work long hours and then arrive home to take care of my son, because this was far more life than I thought I would ever be capable of living. Even with chronic pain, I was finally in a place where I could be a mother, I could spend time with my family and friends, I could work again!
With several years passing it has become easier to forget how far I’ve come and how much has changed. I must remember what I’ve survived. In 2017 and for every year hereafter, it is my desire to use these lessons in life to shift my perspective to what really matters and avoid complaining about the things that don’t. I also want to use these lessons to remain mindful of the many priceless yet mundane experiences that make up this crazy life. I want to BE PRESENT. I must always remember that right here, right now is precious and beautiful and should never be taken for granted. And, when dark times visit again (which they most certainly will in this damaged world), I must remember that no matter how torn I feel or how dark the clouds around me, The Lord has a plan for my life and it is always good. I am thankful for a testimony I can share with passion and authenticity!
A few years back I had some suspicious symptoms which lead to several cardiac tests that made me feel older than I am….or reminded me that I’m older than I act. First, I had to wear a heart monitor for 24 hours that would sound off a dramatic series of beeps each time it detected something irregular (like intercourse), then I had a stress test (which is as yoga-like as it sounds), and finally I was scheduled for an EKG.
The day I went in for my EKG a nice young nurse took me into the exam room and explained that I needed to undress from the waist up and put on a cozy hospital gown with the opening in the front. She also instructed me to lie on the exam table on my left side with my left arm straight above my head, and my right arm behind me and out of the way. When she left the room, I did as I was told, and being the prudish woman that I am, I fussed and fussed with the opening of my gown to make sure that both my nipples were covered…OMG, I’m such an old maid that even typing the word “nipple” makes me blush! Let me try that again…I fussed and fussed with the opening of my gown to ensure that all confidential areas were kept off the record. I was in just the right position to retain my dignity when a young, very handsome, MALE technician walked into the room. I was mortified at my vulnerability as he professionally proceeded to administer the EKG (in my chestal region OR what my best friend and I fondly refer to as the boobelarea, which sounds like a disease you can contract in Africa). With his hands so very near the “twins,” I felt out of sorts, sweaty, violated even…but in a 50 Shades of Grey way. As if he had done this a thousand times he asked, “What symptoms were you having that prompted the cardiologist to order this EKG?”
I smoothly responded, “I was having shortness of breasts.”
SOB!!!<Apparently there are many interpretations of this acronym!>
This slip of the tongue did NOT make things LESS awkward, but it sure did make for a good story once I got the heck out of that office! My advice to you: When you’re in an uncomfortable situation, use “private parts” puns (intentionally or unintentionally). If you don’t laugh then…you will most certainly laugh later! J