I barely slept last night. The last two days, my eyes have been poofy, welling up with tears while I fight to hold it in. I've felt beaten, overwhelmed, and very alone...
We received more diagnoses about Carson this week. We found that he has scoliosis (curving of the spine) and a hip deformity that is common with cerebral palsy, and can lead to hip dysplasia (hip slipping out of the socket). Both are "mild" at this point so we are not being referred to a Orthopedic specialist yet... yet... yet, not the most encouraging word sometimes. There is nothing that can be done to fix what has occurred in his body... and nothing that can be done to "stop" it at this point... we are in yet another 'watch and wait' mode. My heart and mind could not take in and process this new information well this week. On top of this new information - we are struggling with making some major changes to his physical therapy program and are having to work through some other major issues which are difficult in themselves.
Its funny (figuratively speaking) how after a major 'valley' in my walk as a special needs mommy, I sometimes feel my faith so strong, that I am like Peter who says, "call me to come to you on the water." I boldly step out of the boat, and walk towards the the Lord, even on top of rocky and crashing waves. Then other times, such as this week, I find myself being distracted by the crashing waves, the darkness, the wind, the cold water - and I begin to sink and drown. I struggle for awhile, going under the water, being crushed and tossed around by the waves and finally I see a small, blurry image of the Lord, standing on top of the water. I finally say, with water spewing from my mouth, "Master, save me!"
And what does He do? He doesn't hesitate. He reaches down and grabs my hand. Then He says, "Faint-heart, what got into you?"
Matthew 14:28-33 seems to be a picture of me... bold, courageous, then scared, overwhelmed and faint-hearted, leading to my crying out and being saved once again by my Protector.
What stands out to me when reading this passage is that God saves me, oh wait, Peter, by reaching out and pulling him up... he DOESN'T save him by stopping the storm and calming the waves (that doesn't happen until they are safely back in the boat). So this week as I cry out, I realize that God pulls me out of the waves and the freezing waters, He doesn't stop the storm. Jesus, thank you for not hesitating. And thank you for the constant reminder of asking "Faint-heart, what got into you?"
Are you faint-hearted? Do you need to call out to Him to save you without hesitation?
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Meanwhile, the boat was far out to sea when the wind came up against them and they were battered by the waves. At about four o'clock in the morning, Jesus came toward them walking on the water. They were scared out of their wits. "A ghost!" they said, crying out in terror.
But Jesus was quick to comfort them. "Courage, it's me. Don't be afraid."
Peter, suddenly bold, said, "Master, if it's really you, call me to come to you on the water."
He said, "Come ahead."
Jumping out of the boat, Peter walked on the water to Jesus. But when he looked down at the waves churning beneath his feet, he lost his nerve and started to sink. He cried, "Master, save me!"
Jesus didn't hesitate. He reached down and grabbed his hand. Then he said, "Faint-heart, what got into you?"
The two of them climbed into the boat, and the wind died down. The disciples in the boat, having watched the whole thing, worshiped Jesus, saying, "This is it! You are God's Son for sure!"
So we desire surgery just to get an "answer" to the problem we are facing. The issue is that a new shunt does not make the real problem, the hydrocephalus, go away. With a new shunt and another surgery, we run the high risk of post-surgery infection, having the new shunt malfunction, over-drainage, increased pressure... a new shunt doesn't remove the risk, doesn't remove the worry, doesn't remove the issue....
