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How My Child Inspires Me - By Shawna McClain

And the pain falls like a curtain on the things I once called certain
And I have to say the words I fear the most
I just don't know

It was January 2002 and we were expecting our third child. Signs indicated a difference in this pregnancy. Something had gone wrong. We were sent to Presbyterian/St. Luke's Hospital in Denver; a first of many visits.

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And the questions without answers come and paralyze the dancer
So I stand here on the stage afraid to move
Afraid to fall, oh, but fall I must on this truth that my life
Has been formed from the dust.

The amniocentesis confirmed what we feared the most. A baby, our baby had Down syndrome. More tests, more trips to Denver, more tears, and the ground gave way.

God is God and I am not
I can only see a part of the picture He's painting
God is God and I am man so I'll never understand it all
For only God is God

In the spring of 2002, Shawna's labor was induced and a dark-headed little girl named Helen Margaret appeared. She still had Down syndrome. It seems our prayers went unanswered. But our hearts broke and tears flowed and she was ours.

And the sky begins to thunder

Helen was so lifeless. She needed oxygen, she couldn't eat, a feeding tube was placed down her nose, she was poked with needles and still she wasn't thriving. She was moved to Presbyterian/St. Luke's Hospital in Denver and a permanent feeding tube was placed in her stomach. Heart surgery was scheduled, more needles, x-rays, oxygen. She was all alone. We were all alone. God where are you? We can't fix her, help us!

And I'm filled with awe and wonder
'Til the only burning question that remains
Is who am I?

Our lives were torn from the normalcy we knew. Hospital walls, floors, small windows, hand washing, doctors, nurses, and sleepless nights were our new companions. Days could not be embraced without prayer. God, oh God, Your strength, Your knowledge, Your blessing be on us. We can't do it. Words that were so hard to say, so hard to accept. We can't do it. The future could not be discussed. Today was the only day that remained.

God is God and I am not
I can only see a part of the picture He's painting
God is God and I am man so I'll never understand it all
For only God is God

The world had grown void of all color. The seasons passed with no changes in our surroundings. Our two boys, Glenn and Seth, stayed most of the time with family members. We would try to bring them with us to the hospital but they ended up in the waiting room or in the game room playing computer games most of the time. Every day brought some new test, some new problem, some situation which had to be given to God. It was so overwhelming. Our lives were ripped from our hands. We had nothing. But we had God.

Can I form a single mountain
Take the stars in hand and count them
Can I even take a breath without God giving it to me
He is first and last before all that has been
Beyond all that will pass

In July of 2002, Helen was failing. Her airway had shut down; she was septic and had a temperature of 106. We were prepared to let her go. In fact, we prayed to be released from this burden, this little life that was struggling so. Wouldn't she be better off with you, Lord? Wouldn't we be better off? Helen was trached and for the first time in her life she could breathe. Her little legs lifted high in the air and slammed on the hospital bed. That had never happened before. Helen could hardly move any part of her body before the trach. Her color deepened. Blood was carrying oxygen like it should. God is God and I am not.

And we prayed.

Our little girl was placed on CPAP (continuous positive air pressure) 24 hours a day. This bound her to her small 8-by-8-foot bedroom. This also required 24-hour round-the-clock care in that same little 8-by-8 room. Days would go by before Glenn or I might even place a foot outside the front door of our house. We were wearing our hearts on our sleeve and tears flowed freely. Nights were divided between Glenn and me. I stayed with Helen four nights and Glenn stayed three nights. Most nights were spent suctioning, emptying CPAP tubing of water, figuring out feeding pump malfunctions, buzzers and beepers and oxygen tanks and pulse oximeters and a tiny little cot just two feet away from a little dark-haired girl fighting for her life.

Oh, how great are the riches of His wisdom and knowledge
How unsearchable for to Him and through Him and from
Him are all things

Helen got stronger. She fought many battles, was placed on many antibiotics and medications, and grew. She outgrew her need for CPAP and oxygen. Her muscles got stronger, her hearing got better, and her love for people grew.

So let us worship before the throne
Of the One who is worthy of worship alone

Oh God, you are God and I am not. Our little girl is a great blessing. God answered my prayer. It was a prayer for joy in my life and in my family's life. God brought us to our knees and said, "Take my hand. I have the joy you need." Helen is a beautiful little girl with a warm heart and sweet smile. We meet more strangers on the street, in the grocery store, at Home Depot, etc., because of a little girl that has a smile and a "Hi" for everyone. I have seen large, fuzzy men melt at a kiss that is thrown to them by this little gift of joy.

Helen loves her brothers dearly. She is happiest when she is in the middle of them rolling on the floor, or under the covers on their bed. Her grandparents have a great soft spot in their hearts for her, as well as all of her aunts and uncles and cousins and therapists and teachers.

God is God and I am not
I can only see a part of the picture He's painting

The colors have returned to our Colorado landscape. We are breathing deeper now and even have begun talking about tomorrow and not just today. Helen will be starting kindergarten in the fall. She is an extremely social and engaging child. She is putting two and three words together verbally and signs quite a bit as well. She is a great climber and loves to run and jump on the trampoline. She loves music classes and is quite the tease with her family. What a gift she is!

O how great are the riches of His wisdom and knowledge.

The verses in the above story are by Steven Curtis Chapman from his song "God is God" on his Declaration album.

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