Friday, April 17, 2015

while he lay sleeping...

"When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you."  Isaiah 43:2a
Jude is approaching 10 months so quickly. Rolling around the room is his preferred tool of navigation. He is a clever boy already learning to sign. Huge smiles revealing lots of big teeth often delay us from completing our chores.

Though he is still a cuddle-bug, he is now bothered by our attempts to rock him to sleep. He strongly protests until we simply put him in his crib. Listening to music and hearing his brother and sisters sing to him always delivers sheer delight.  

For now, he is just a baby. Today, he is innocent to all that is occurring around him. He is unaware of his physical limitations that accompany a lifetime of overcoming. He's unconscious to the fact that many in this world despise the disabled, the helpless, the "useless." He doesn't know that Dr. Phil, along with many Americans, advocate for the disabled to be annihilated.

And just yesterday, a routine neonatology follow-up for Jude to determine his development productivity, left me spent as it lingered into a two hour discussion regarding his future. Through a series of reflex tests and examinations, Jude was formally diagnosed at nine months with moderate hemiplegic/quadriplegic Cerebral Palsy.

We didn't anticipate it so soon. Most CP children are diagnosed around the age of two. It was a blessing however, because our share plan couldn't begin publishing his medical needs until diagnosis was affirmed. It is real. We have boarded the train.

Along with this appointment came more hard news. Jude may become deaf. I was unaware that CP children are at risk for this. Depending on the depth of the brain injury, medications administered in the NICU, and ventilation insertion in infancy, hearing loss is a possibility. Jude is a candidate.

Right now, while he lay sleeping, I wonder if, when, and how suddenly this all occurs. Would he remember the laughter of all his siblings together, joyfully frolicking around him? What about the sweet sound of his own voice as he cackles out loud with excitement when they include him in their delightful affair of singing, dancing, and playing?

Could he ever tolerate such bleak silence after knowing the sweet sound of music playing and the voices of his family singing cheerful baby lullabies throughout the day? What about the sound of peaceful hymns that bring a concentrated stillness to his spirit as he listens in awe? Or the sound of the whirling wind or springtime songbirds chirping with glee?

Will he be old enough to remember my voice and how it sounded when I whispered, "I love you, Jude?"
The seesaw of hope can be exhausting. Eleven months ago, we were preparing for a child with CDH. Now, that same child is dealing with a completely separate diagnosis.

Just recently, on the threshold of all that is currently happening, came the unexpected news of another baby. Despite the medical advice to terminate, we have chosen to trust God with the outcome. While we are thrilled about the hope of another baby, we have reason to be concerned about the pregnancy and delivery. 
I'm reminded of Corrie ten Boom's testimony of a train ride she once took. She was very scared to take a trip due to the fear she had of trains but she traveled with her father and enjoyed the trip completely. Her father asked her, "What happened to your fear?" "Oh, I wasn't thinking about being on the train," she replied, "I was thinking about being with you."  
During these challenging past eleven months, God has led us to face some hard realities of life. But He alone knows where we would have been if He had not sent these trials. So, I can say without doubt that this journey is for our good and ultimately for His glory.  
We are grateful for your prayers during this season of uncertainty and, Lord willing, we will celebrate the precious life of another Olson the first week in November.  ~Jen


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