Sometimes, especially in high school, I would ponder the thought…”What if I had been born ‘normal’?” Normal to me would mean--normal hearing, normal speech, and normal facial structures… You see I was born with a syndrome named Treacher Collins.
A syndrome I knew nothing about until we were expecting our first child.
I grew up knowing I was different--somewhat like my father, yet not quite the same. I had my rationalizations for why one ear was smaller--”I slept on it too much as a baby..” As for my voice--”one day I’ll have surgery and it will all be fixed.” And with child-like faith, I would go to bed at night, saying my prayer that when I woke up, I would be healed. There was no doubt in my mind that the day would come and I would be restored to my ‘rightful’ body. After all, somehow, I knew that I was beautiful. I would be a model. There was a stage with my name on it--and didn’t everyone want to hear me sing. So there it went, the voice of God whispering my name, I was loved, and was born for something. I wasn’t sure what, but I knew it was big.
Today, I have five children. Two of whom were born with an even more severe expression of treacher collins syndrome than mine. With a fair warning, that only the Holy Spirit could give, I prayed with all my might during labor with Michaela for strength in whatever lay before me. She turned purple in my arms as the nurse whisked her away to PICU for oxygen and to be monitored. She was trached only a few days later, the Friday after Thanksgiving. To say it was a trying time, would be an understatement. It was stressful, guilt ridden and full of worry. Somehow, God pulled us through, and showered us with other material possessions to make the time easier. We had been living as a family of five without a car--now six, with so many medical appointments and special equipment to cart around, the Lord saw to it, that we had proper transportation. People were placed into our lives, doctors, social workers, nurses, and therapists. Many of whom became friends. As I look back, I can see the grace of God leading us through the maze of trials, troubles and time of new challenges.
Wyatt came along 14 months later. He is the angel/light and companion to Michaela. Wyatt, though, unexpected to us, was chosen and expected by God. I still have the little red playsuit with his name on it. Wyatt was at University Hospital receiving his trach, and other procedures to make his life easier, when a nurse presented me with a playsuit that her sister just happened to have gotten at the LandsEnd outlet store as a deal. When she heard a baby boy had arrived with the name “Wyatt” she gave it to us. For me this is a sign, that, despite his troubles, Wyatt was destined and planned for his stint here on earth.
There are moments when I wish, it could all go away. Moments, when I wonder, what we would be if there were not the physical difficulties we experience. Just this morning, Wyatt asked me. “If God made me, why would he make me have problems?”
Good rationale. How could a God who is so perfect in every way, make me--not perfect?
So, I told Wyatt, that we are born into a ‘not perfect’ world, and that problems are a part of this world. I told him, that God would use his problems for His own purpose .I also told him that his gifts are special and that God had great plans for him. Most of all, I told him that someday, he would live with God and he would be perfect in every way. This excited Wyatt most of all. “You mean, I’ll have new eyeballs, and I’ll hear and not have any holes in my stomach!?” I nodded, yes, and he ran off with great excitement.
My life is far from perfect. I have troubles, but better than that, I have good times too. There are miracles which are so much more meaningful than if I looked like a movie star or had perfect hearing and speech. He gives me the opportunity to rely more closely on him. Sure, I have an ego, and get cocky about the things I can do. But these imperfections of mine, keep my life in check. When the speech I give at toastmasters moves people, when I win 1st prize in an area humorous speech contest, or am invited to tell my story, I have to chalk it up to a wonderful, awesome God who leads me on.
Would I trade it in? Oh, its tempting…, but, nope, because someday….as I told Wyatt, I will have my rightful body. For now, I am His servant. And, you know what? It is a wonderful life.
View my website:
www.justcarmela.com
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