By God’s wisdom and grace, I was born with a bone disorder called Fibrous Dysplasia. Fibrous Dysplasia weakens your bones and causes deformity. For me, it affected my left leg. For 34 years I battled the symptoms of this disorder. Pain, increasing deformity and frequent breaks were just a part of life. Eventually, Fibrous Dysplasia rendered my left leg useless below the knee. Finally, at the age of 34, that portion of my leg was removed.
For most people, childhood revolves around school. Time is measured with the coming and going of different grade levels. Children move from Kindergarten to First Grade and from First Grade to Second and so on... Their young lives are marked by progress. My childhood revolved around surgeries. Time was measured with the coming and going of different procedures. I went from the first surgery to the second surgery and from the second surgery to the third and so on… My life was marked not by progress but by pain. Or so it seemed to me.
Pain, yes, there was a great deal of physical and emotional pain. Yet, there was also love and joy. I hurt. My parents suffered. They loved me, and I knew it. They wished they could take away the pain, but they couldn’t. They wished they could stay with me in the hospital, but it was just not possible. Dad had to work hard and long hours to support us, and Mom had to care for my three younger siblings. For the weeks that followed a surgery, that left me alone. In those long and lonely weeks the best and worst moments of the week fell on Sunday afternoons. On Sunday afternoons my parents and siblings would drive from where they lived in Longview, Texas to The Shriner’s Hospital in Shreveport, Louisiana, where I lived and recovered. The best moment of the week was that moment I first saw my family enter my room and surround my bed with conversation and love. They often wheeled me into a large gymnasium area where my brothers and sister could play. O how I looked forward to those precious moments together! The worst moment of the week was that moment when my family would walk across that large gymnasium, turn, smile, wave goodbye, turn again and continue out the door, out of sight.
Pain, yes, there was a great deal of pain. I tried to comfort myself by thrashing my head from side to side in my bed. It was in these moments of anguish I found my LORD and my God. No, it was in these moments of anguish that my LORD and my God found me. At some point in my misery an Invisible Hand would stay my almost uncontrollable thrashing. This Great Hand was strong and full of love. An unheard Voice would whisper into my heart, “You are loved. I will use you for my glory.” I had a hope and a future! I could not see it, but God had spoken. “For thus says the high and exalted One who lives forever, whose name is Holy, ‘I dwell on a high and holy place, and also with the contrite and lowly of spirit in order to revive the heart of the contrite.” Isaiah 57:15
And so I thank my LORD and my God for parents who loved me and suffered with me in my pain. I thank God for The Shriner’s Hospital in Shreveport, Louisiana, and for all of the Shriners, Doctors, Nurses and Physical Therapists who worked so hard to mend my broken body. Most of all, I thank my LORD and my God for His gift of Fibrous Dysplasia. My pain was my paidagogos, a tutor that led me to Christ. I praise the high and exalted God who lives forever, whose name is Holy. I am profoundly grateful for the One who dwells on a high and holy place and yet also comforts little boys in great pain. To God be the Glory both now and forever. AMEN.
Thursday, November 19, 2009
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2 comments:
What a heart wrenching yet inspiring story...thank you for sharing. My nine year old daughter also suffers from FD in her head and legs, a complication associated with McCune Albright syndrome. She is so blessed in that she has yet to have the need for surgery...a fact that even her doctors attribute to a modern day miracle!
My heart breaks for you and your parents, as I truly understand your anguish. Wishing I could reach back in time and even now, to give a loving embrace to you all!
I too came to realize through Lauren's disease that God has such great plans for her... and us, her family. But, at first, when she was diagnosed, I hated him... Thankfully He is a forgiving God! Now I see He holds her in His grace everyday... and you too I am certain.
My thoughts and prayers will remain steadfast for you, and I ask that you too remember my little girl, Lauren. You were such a brave little boy, and now such a strong man... husband and father. I am happy to know that you are so blessed in your life. May God continue to bless you and hold you safely in His grace.
Warm Regards,
Tanya
Tanya,
I will remember you and Lauren in my prayers. Remember, God doesn't promise to make the storm go away, but when He, in His wisdom, allows the storm to rage He promises to go with us through it. That makes all the difference! Remember, He has promised He would never leave us or forsake us.
In Christ,
John
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