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In the Fall of 2013 I met Ceci at Hillcrest Medical Center in Tulsa, Oklahoma. We were colleagues in a Clinical Pastoral Education program there at the hospital. From the day we met I sensed something unique and intriguing about her. Her soft eye contact and gentle smile revealed a beautiful loving soul. As the program progressed, we shared our life’s journey in the group setting. Ceci’s life journey created a picture in my mind of a terrain with a path reaching to high mountain top experiences with great joy and hope as well as taking her through deep and at times dark valleys of sorrow and pain. As I learned more about Ceci, I wondered if somehow the broad terrain in her life may have helped to form what I observed to be Ceci’s style of daily living – a stepping out to faith in love with trust in the guidance and care of a loving Heavenly Father. So, when Ceci asked me to consider writing about what has brought me hope, healing, and/or wholeness…I knew immediately. What has helped to carried me through the ‘toughest of days’ was a simple song I learned as a little girl.
In the beginning of the ‘toughest of days’ our family of five; Scott, myself, Kaylinn(10), Kenneth(7), and Kelsey(4) enjoyed a fun filled life with school, church, and playtime with friends. I was a stay at home mom with a full schedule of activities. Kaylinn enjoyed dancing and dolls, Kenneth enjoyed playing outside on riding toys, and Kelsey enjoyed a weekly routine of therapeutic horse riding, warm water physical therapy, speech therapy, and occupational therapy. You see Kelsey’s body was weaker than average child’s due to what at the time was thought to be mild Cerebral Palsy while her mind was sharp and witty and she adored learning, participating in groups, and especially loved snuggle time.
February of 1999 began the ‘toughest of days’ with my diagnosis of breast cancer followed by surgery, chemo treatment, and the loss of my hair. Then, in the Fall of 1999 Kelsey began to stumble and slur her words. After extensive medical tests and a trip to Houston the conclusions were finally revealed in January 2000. Kelsey was diagnosed with a rare genetic disorder called Neurodegenerative Brain Iron Accumulation. Along with this devastating news, the doctor also informed us that she had an expected 6 months to 1 year to live. Our lives came to a screeching halt! We began to live life one moment at a time and each moment was precious. I remember feeling intense agony, struggling to breathe and crying myself to sleep every night. I was in constant communion with God begging, crying, and desperately seeking His strength, courage, hope, comfort. As I desperately tried to trust Him through the chaos of emotions and circumstances… and softly the lyrics would come to mind and bring feelings of comfort for my soul and give me strength for another breath. Yes, Jesus loves me.
Scott and I knew one thing with certainty. It was going to have to be God getting us through the days ahead. He was our only hope. Our family of five chose to trust God to care and provide for Kelsey and our whole family. And, of course we prayed for miracles! And did we ever see miracles… Kelsey lived 6 years longer than the doctors predicted. Within the first month we agreed upon a scripture for the journey. Psalm 118:24 “Today is the day the Lord has made, I will rejoice and be glad in it.” An you can imagine, every moment of every day was treasured.
In March of 2000 my husband took our older children to see a Disney movie for a special treat. Kelsey and I stayed home for special mommy/daughter time together. Yet, this night was so different…we were now faced with the life and death of our precious baby. I vividly remember lying next to her on a blanket in the living room floor. As I shared with Kelsey how much I loved her, tears flowed down my face…just as they are now as I reflect back on the precious memories. I softly sang, “Jesus Love Me” replacing “me” with the word “you” as I proclaimed Jesus’s love for Kelsey. And even though she had heard the song so many times before, I needed her to understand the true meaning of the words. I wanted her to feel the warm and tender love of Jesus and to experience His peace that surpasses all understanding when the circumstances contradict. I began sharing God’s promises of hearing and answering our prayers, always being with present with us, giving us strength when we are weak, making a way when there seems to be no way, preparing a special place for us in His presence, and His promise of a day when there will be no more sickness, pain, or death. etc.
As I softly stroked her hair and shared my love and faith something unexpected happened… my words began to weave into a simple tapestry to the tune of Jesus Loves Me…
Mommy loves you, yes she does,
Says her prayers to God above.
Asks that He will guide your ways,
Hold you in His arms always.
Yes, God hears our prayers. Yes, God hears our prayers. Yes, God hears our prayers.
He answers every one.
In God’s Word we can have faith,
In His kind and loving ways.
He will give you strength for sure,
That will help you to endure.
Yes, God cares for you. Yes, God cares for you. Yes, God cares for you.
He loves you very much!
We will see you once again,
For it is in God’s great plan.
You will walk and talk and play,
Without limits of today.
Yes, we will miss you. Yes, we will miss you. Yes, we will miss you.
We love you very much!!
Over the years I would often sing the first and second verses of the song to Kelsey. These words expressed the hope and assurance we so desperately needed for our difficult journey. Then, as the end of her life drew near I would include the final verse; expressing our hope as believers in Christ. As she took her final breaths in the lap of her daddy, I was kneeling by her head gently stroking her hair with tears running down my face while singing our song of hope and assurance in God’s promises and His plan.
This simple song of faith for the ‘toughest of days’ continues to give our family Hope, Healing, and Wholeness for our daily journey through life.
Blessings, comfort, and peace for the journey,