The content for this post is taken from a daily journal I started this year. Writing is my therapy. Sentences following were cautiously selected . Some of my notes were too painful to share. The ache comes from my soul, the smiles from my outside voice. My son has Parkinson’s.
I feel God told me to share my story with Dr.XXXXXX. What? Little old me….when there are thousands of Mothers, women,men….with this story and perhaps their story would make a bigger impact than mine….
No….I just need to tell this Dr….perhaps he needs to know, perhaps he can suggest a way to keep my heart from breaking, so I write him this letter…(it’s never mailed)
I went to a therapist earlier this year…thinking she had some magical words to fix my emotions. After all…I only have a mothers feelings. It is my son who is physically suffering. She couldn’t help. She hugged me, cried and said I don’t know an answer.
June, 2017…My Darling Lynn….. in Franklin I watched my son lay down for a power nap on the couch in a room adjacent to the stage. He fell into a light sleep……
Lynn….his wife….dear Lynn she looked at him sleeping and her compassion ripped through my emotions so much love it was tangible…..I wondered what her thoughts were but her expression was kind,loving, maybe full of apprehension or wishing he didn’t feel the call to work to share his message……. I do know, I saw the love in her eyes and felt her love for my son. I am so blessed to have Lynn in my life. This family is so blessed to have Lynn .
July…2017 I only know this morning my tears as I write this flow like the small stream outback.
Why? God Why? Why Ray? …..well to answer my question then who should it be?
I would take his pain……his apprehension could I bear his thoughts? How can I help.. I must help…How…I don’t know How and I feel lost.
July 19, 2017 What part of me is still a Mother? What does a mother do? Pray….I need to remember to pray and pray.
I am in pain….more pain than I have ever experienced on a constant basis in my life. Oh….when Ray was born, that was a new painful experience. For 3 days….I was in labor, low in my back. Then, they thought it was “normal” for a woman to travail. Family members took turns rubbing my back. He was a Big baby ….I was a little person…By today’s standards he would have been a c section….Not then. Delivered with forceps.
I hurt…I hurt the pain was so bad, but I knew it would end and I would have a real live baby, I knew the pain would stop….
It did…..I had the most precious bundle of joy ever…..NOW….did the forceps do damage that caused the Parkinsons? Did the water at Camp LeJeune cause the Parkinson’s? Am I in some unknown way responsible for Parkinson’s?
I can’t fix Parkinson’s. I think of Lynn…..do I relate to her since I have really endured some tough things in life? What does she think, feel, hope?
I would take his pain……his apprehension could I bear his thoughts? How can I help.. I must help…How?
My son has Parkinson’s Can I tell him how to get well? Nope, Can I give him money? Nope, don’t have it. Can I live close and “make” him, them happy or happier? Nope.
I wake up and need to go to the bathroom. I dread to move so bad…knowing each of the 32 steps I take will make me feel like the bones in my foot are breaking…..One pain, I have called a bone is probably a nerve. Tears roll. I have a high pain tolerance. This is more than I can bear without tears. I attempt a step….and think of Ray.
I think of a visit to Ray’s house. Lynn needed help with the dog and he attempted to run down the hall way….I SAW his struggle It felt like someone was raking a fork through my heart shredding it beyond repair. I saw and felt his pain, frustration, maybe fear. I scurried to the guest room and cried. Visions of me and Ray when we could run…stomp, dance…I cried for what used to be. What I wanted to do was make him small, hold him and make it all better.
I am still the lying Queen of Denial…..I Cannot Accept Parkinson’s…I hate it….I will pretend it isn’t real and face the day and facebook with a smile.
I feel joy…it’s all okay.
He appears to be coping with the disease that somewhat restricts him. I am coping with being at an age when some members of my family died and also others lived for another 35 years………..Hmmmm…..
Joy….I am so excited. I will be going to the team meeting in California in November just before Thanksgiving. I almost declined. I just know it’s an answer to prayer. Sometime there, I will be able to talk to him and Lynn and Sean and tell them about the love in my heart. It will be a joyful meeting. I can for a few minutes tell them I hate Parkinson’s every minute of the day I hate it with the constant restriction of my foot…I hate it hate it….Oh…maybe I shouldn’t go….Ray leads with enthusiasm and positive thoughts. Hate isn’t positive. I am Going!
An answer from God for me is: The joy of the Lord is my strength. The world needs Joy….Happiness is different. with Joy there is peace and peace I take with me to California…..
Joy, joy, I look forward to California. Presently, my mind spins in turmoil.
Ray, I want to relive his childhood….What would I do different? I would never let him out of my sight. I would protect him as in a bubble, how silly is that……Drawing from my memories…. I wanted him to win the spelling bee. He did. I wanted him to win the speech contest in High School and he did….went to the next level and his class mate hung out the window of my car screaming for Ray as we rode to the next event…..I wouldn’t change the competition. I traveled with him and his teacher to DC to compete…..yes Mama needed to go along…. my heart almost burst with pride. Oh, the little Theatre in Middlesboro……meeting Lynn for the first time…their wedding…..no if I had not been the role I played he wouldn’t be in his.
The first time he learned to float in Myrtle Beach South Carolina……It was our first family vacation…I was so excited although we lived 20 minutes from Onslow beach, we were going on vacation! I was pregnant….Ray and Mark were excited. We got there and realized we had forgotten to load our suitcase….only the clothes we had were on our back. Don’t remember where we found bargain clothes, but I do remember crying and some woman asking me why….I told her and she laughed. She shared:
It was her first time to the beach with her husband of several years and they had gone out into the ocean to play…his teeth washed away…..And she found humor….so special. Another lady there taught him to float……………..Precious memories.
His first flight alone on a jet………………go Ray go and the pilots name was Ray Edwards……………..I think he was 12.
No….I don’t know all the special memories he has but I sure have plenty….memory of conflict too. He always wanted to run away….did 2 or 3 times…why? I don’t really know but I take full responsibility….It was and is what it is…… did not cause the Parkinson’s…………………….
He played the role of the Angel on the Step latter…when he was 12. Such a sweet little angel.
I do wish I could have relaxed more…..just enjoyed being with my boys instead of feeling I needed to make more money…do more, go to school, have the perfect house.
Noon! July 26
Watched my handsome son on Facebook live….He is beautiful to me Did you know men are beautiful? When he was born my biological father was there and he declared to everyone present, all 21 members of the family that Ray had the head of a President and would lead the country one day… Several smiled. My half brother didn’t….but Kell, said, Just you wait and see……I see it happening now. He is a gifted, called man of God, leading others to Christ and sharing with everyone teachings to provide for themselves and family
Was I was a good mother? I tried. It’s nice when people say…..That’s Your Son? You must feel so Proud. I feel humbled and amazed that you survived me and found your role in life, a wonderful wife and even more……an incredible Son!
I find myself almost consumed with the hidden denial that things aren’t “normal” with you. Sometimes on the phone, your voice is a bit weak. Once or twice I noticed it was a struggle to coordinate the eating utensils..I pray my expressions doesn’t make you uncomfortable. My heart cries inside and I want you and Lynn to hear it, to know that I realize you all have a mountain to climb. I will always be a phone call away if I can help.
Sometimes, I want to call sharing happy news from your brothers, from Soleil or Eliana….or that someone in the family is ill and I think this isn’t a good time.
In this public post I want to acknowledge, the journal is filled with notes about other family members, a couple of friends who shared my thoughts. I love and appreciate each one of them. I am proud they are part of my life!
Wish List…..my notes are filled with statements of wishes…wishing I could be transparent and you could See and Feel what I feel….had planned to attempt to share in California…..I am sharing now and Thank You for your recent podcast
I have listened to this over and over. First time, I had a total melt down. By the third time, I felt a release. I love you just the way you are. Yes, I still want to fix it. I can’t. Thank you for being you, for being transparent, for being honest. Know as long as I live I am a phone call away if I can ever to anything to make life easier.
Your honesty has opened my heart to say keep running your Race Son, you are a Winner! I love you just the way you are and I love you just the way you will be. Hope you will love me just as much when I am old, wrinkled and perhaps cranky!
A President is a leader, loved and hated respected and feared. As Ray delivers Gods message, I believe he invokes all these reactions.
This picture of me and Ray was taken in Franklin, Tennessee.
I have read the draft for this post several times and deleted many statements. It would have been too long. Many statements included other family members. . This note is about Ray. This note is about me. It is for other Mothers facing challenges in their lives they can’t fix.
These shared thoughts aren’t in order. Forgive me, you must skip around. It’s life. I will help Ray by helping others with Parkinson’s who live near me. This is the seed I sow and I know if Ray and Lynn need help, it will sprout near them and someone if not me will be there to help. For now, whatever state of health, mind or location we are in…
go forth and prosper,
Notes here are mostly verbatim from my journal this year. In December the journal will convert to a book…perhaps for the family, perhaps for public. We, each have a story. My feelings may not align with your story or vision of my life. It is written in truth as I see it today.