Tuesday, January 25, 2011

Clay

Street had his parent commitment this past Sunday at our church. I couldn't wait to see what they would come up with for the meaning of his name, and as I expected they used the meaning of his middle name "Michael". It means "like unto the Lord". I like to think that Street's name means light. For some reason I am always thinking about him being a light unto this world and rocking him to sleep with "This little light of mine." He's definitely a light in our lives!

He looked so handsome in his little sweater.


Last week we saw a geneticist at Texas Children's Hospital and we really liked her. She actually showed some compassion and general interest in Price. Of course, her opinions on what Price might have were just devastating. They are degenerative conditions, most with a very shortened life-span. Nathan and I listened, I asked a ton of questions, and she told us she would talk to an expert radiologist about the findings on Price's MRI and get back to us. We left there calm and discussed what she had said on our car ride home. No one should ever have to discuss the possibility of losing a child to some devastating disease. How humbled we are. We just prayed and once again offered up our son's life to the Lord. His will, His plan, His perfection.

We had an email from the geneticist yesterday saying that the radiologist does NOT think Price has a leukodystrophy (a degenerative disorder that destroys the myelin in the brain). Basically, everything the geneticist had offered as a possibility was ruled out by this radiologist and she was unsure of what was causing the changes in Price's brain. (They are very subtle changes but still changes.) I finished reading her email and thanked the Lord and laughed. Yes, I laughed. Laughed because of course they do not know what's going on with Price. Never has one thing a doctor said to us been right. Not once.

I was reading my devotional today and it discusses the verse, "Like clay in the hand of the potter, so are you in my hand." (Jeremiah 18:6). It talks about how we are involved in a life-long art project. We want our lives to turn out the best possible way for us and we are diligent craftsmen. We want the perfect family, the perfect job, etc. However, there is a craftsman more skilled than us. If we would trust Him to shape us into something more beautiful, He would. He has a grander vision of beauty than we do. The work of the Potter is not a comfortable process most of the time, but the finished product is glorious. We must trust Him completely because there is nothing more beautiful than His artwork. {Worship the King by Chris Tiegreen}

We are trusting!

8 comments:

Kiki said...

He looks adorable!

It is so good to have a great Potter!

Amanda said...

I'm so sorry you were carrying that "news" this weekend and I didn't even know it. Praise God that it turned out to be wrong. Everything you said at the end of this post gave me chills.

cindy gatewood said...

You are putting some mighty powerful stuff out there for us
all to read! Thank you!
From the God Issues blog -....
"God is using your suffering to grow
you spiritually and one day we hope
to understand what we cannot comprehend today. God suffers as we suffer and gives us strength to
withstand and even redeem our pain. He is present with us now
in the hardest place of life. He will
never allow us to face more than He will give us strength to bear..." Your Nanny used to tell
me that too - :)
I Love You and I am so proud of
you, my daughter!

Mom

Tabaitha Kaye said...

There's comfort in the fact that God knows the initimate details of Price. Beautiful reminder.

Rachel said...

a sweet friend of mine has a daughter who doctors believed had leukodystrophy. price reminds me so much of her little girl 8 years ago . . . after many, many appointments and doctors and tests and trips to Johns Hopkins, they have diagnosed her with congenital muscular dystrophy. not something we would choose for our children, but a much better diagnosis to what the early reports said. this weekend that miracle girl is traveling with my daughter (her best friend) to a dance competition . . . to compete . . . they were told she might never walk, never speak, yet, with therapy and her amazing disposition and perseverance, she is out there dancing and you would never be able to guess that at 18 months we wondered if she would live to be 5. Johns Hopkins has some wonderful muscular and neurological specialist who love their jobs and respond to this friend faster than the nurses call back at our local peds office. I am sure you are sick of hearing about people's friends' cousins' neighbors, but I am drawn back to your blog to follow Price's story because we were walking through something so similar with my friend 8 years ago. Praying for you all. Hoping this gives you hope.

Kristen said...

Rachel,
Thank you! I love hearing others stories. It really does give me hope! I tried to email you but couldn't find an email address. Thanks again for commenting and for praying!

Rachel said...

It's Rachel again . . . you can email me at rachelbass2002@yahoo.com anytime and if you ever want to talk to the other mom, i know she would love it!

The Ward's said...

Thanks for always sharing your story. Your post always bring tears but are so inspirational. We are praying for your beautiful family.

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