I asked God to heal my son, surely He would do as I asked...
I couldn't believe that after a miscarriage and almost 3 years of trying to conceive again, God blessed me with a healthy, happy baby boy, we named Richie. He was my whole world and I loved being a mother.
Richie had big blue eyes that expressed delight in everything he saw and experienced. It seemed like everywhere we went someone stopped us and commented on how beautiful he was and how healthy he looked.
I remember the day when that all changed and my joy turned to unspeakable anguish.
Richie was taking his nap and I spent that time looking through his baby book which included professional pictures of him that were taken every month. As I lovingly looked through those pictures, a sense of fear suddenly gripped me and I realized that in each progressive picture I was actually giving Richie more head support (behind the scenes) instead of less. He should have been getting stronger, not weaker, as he got older.
I immediately called Richie's pediatrician and told the nurse what I had noticed. The sense of urgency in her voice as she said, "Bring him in immediately", made me realize this was not just an overprotective mother's imagination.
I woke Richie up, wrapped him in a blanket and drove as fast as I could to the doctor's. They took him in immediately. As the doctor examined my little boy he said he wanted to do some bloodwork. When I asked him why he said he wanted to rule out Muscular Dystrophy. My mind went to work overtime, wasn't Muscular Dystrophy the disease they had that telethon for each Labor Day Weekend?
Flashes of children in wheel chairs, on respirators--children who did not have long lives--that's what Muscular Dystrophy was. How could my blonde-haired, blue-eyed son--the one who was always being stopped by strangers because he was so beautiful and healthy looking--have Muscular Dystrophy?
As I waited for what seemed like hours, I prayed and asked God for a miracle "Dear Lord, please don't let Richie have Muscular Dystrophy".
I was so engrossed in my plea to God I didn't hear the doctor come back into the room. "Preliminary results say we aren't dealing with MD. I believe the next step should be to take him to Children's Hospital in Chicago". The doctor was to call and make the appointment and then get back with me.
I left the doctor's office and went immediately to my good friend, Lisa's, house, all but collapsing in her kitchen as I stumbled through the door with Richie. I saw the look of disbelief in her eyes as I told her, "The doctor tested Richie for Muscular Dystrophy but preliminary results seem to be pointing in another direction".
We both cried, hugged each other and held Richie. Then we prayed to God for a miracle.
The 3-1/2 weeks it took for me to get Richie into Chicago's Children's Hospital seemed like a year. If I just knew what it was I could deal with it--fight it head on. After all, if it wasn't the worst--Muscular Dystrophy--how bad could it be? Once we got to that hospital, and all the test results were in, I would have given anything to go back to that time before I knew what was wrong with my precious son.
He was given a death sentence. The disease he had, Werdnig-Hoffman, was a rare, genetically transmitted disease for which there was not only no cure but no treatment protocol either. The doctor's parting words, "Take him home and enjoy the time you have left with him", seemed like they were being said about someone else. How could my blonde-haired, blue-eyed, healthy looking boy be dying?
Even though there was no plan of treatment for my son's disease I spent endless hours in the library looking for answers in medical journals (this was long before computer search engines). I also made phone call after phone call trying to find any agency that could help my son with therapy, treatments--anything. I had to fight for my son, he could not do it for himself.
Above all I prayed and asked God continually for a miracle--a miracle of healing for my son.
I lived and breathed finding a way for my son to survive. At night I even dreamed of ways, impossible ways, that I could have kept this from happening.
For almost a year we struggled, my little boy and I, to keep our now almost inevitable parting from becoming a reality. Long hospital visits were the norm and I gladly spent endless days and nights in the hospital just to be close to my little one. If ever two hearts beat as one it was during that brief time we had together as earthly mother and son.
For almost a year I loved more intensely, fought more fiercly, prayed almost unceasingly than any other time in my life. Yet, there seemingly was no miracle.
I was in his hospital room the morning my son quit breathing. I refused to leave the room and prayed as the hospital personnel tried to resuscitate him. I willed him to live and I prayed again for a miracle. Then his heart monitor came to life. My miracle had happened. I silently thanked God.
Richie was moved into PICU and after all the monitors were hooked up I stood next to him holding his hand. As I looked into those big blue eyes I could tell my son was not completely there. I don't know how else to explain it but he seemed to be hovering between earth and heaven. There was a dimness in his eyes and a faraway look I had never seen before. When he closed his eyes I knew he was gone.
It was at that moment I knew that--for almost 2 years--I had been living a miracle. The miracle of having my son, Richie.
For Richie
August 26, 1978-April 3, 1980
Fly high my little one,
Though you soar on broken wings,
Weighed down by handicaps,
And other earthly things.
Fly high my little one,
Till you reach heaven above,
Where every broken thing,
Is mended by His love.
Shepherdess Blog
April 11, 2012
Copyright 2012 Jackie Deems
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