Wednesday, May 9, 2012

Super Freak....She's Super Freaky.

The story, as we have understood it with our daughter Chaia is that both Shaina and I carried the same abnormal/mutated gene which caused her to have GACI and be a 180 out of 7 billion oddity.

Things got stranger this week.

Got a call from the geneticist who originally diagnosed Chaia's disease. The disease is correctly diagnosed, but how she got it is a little perplexing.

They tested Chaia's blood against both her parents.

I am a carrier of the mutated gene.

But Shaina is not.

The new working theory is that there was a spontaneous mutation that happened in utero that caused Chaia to get this disease.

I asked how often something like that happens, and the geneticist said it is very rare.

So she has a disease that makes her 180 out of 7 billion. And the way she got the disease very likely has made her one of a kind.

And the thing I am stuck on is that even though doctors are befuddled on two continents (German doctors are doing some of the genetic testing), God is not surprised.

I don't know why I lose sight of this, but God has orchestrated Chaia's existence. He has knit her together cell by cell and gene by peculiar gene. She is fearfully and wonderfully made. She is His. His craftsmanship is written all over her. From her calcified arteries to her dysfuntional heart, to her 40 inch eye lashes, she is His.

And the uniqueness and oddity of this diagnosis further displays His glory.

Yes it is a hard road, but the joy and peace that can be found in Christ in the midst of suffering are perhaps the purest encounters with His Presence we have had.

Believing and demonstrating God's goodness is easy when circumstances and blessings point the way. Believing and demonstrating God's goodness in the midst of the darkest of nights, however is a fierce battle for God's glory to be put on display.

Have your circumstances caused your faith to be deepened or derailed?

(as a sidenote, we love Chaia deeply and cherish don't read any post about mutants or weirdness or freaks and think we are creeped out by our kid. We are enthralled with her and count it a great privilege to steward her back to God for as long as He sees fit.)


Jackie Thompson said...

We've always known she was a special little gal. The tests just confirm it. Blessings to you all. Prayers continue

Grandma Cindy said...

I'm so thankful you used the phrase 'purest encounter of the presence of God'. Truly, this experience has been a revelation extraordinaire of the love, purpose, power, and person of God the Father.

He chose with precision you & Shaina, to steward this child.

He chose Chaia to exemplify His awesome presence at work on this earth.


I praise Him for each of you and love you dearly.

Erica said...

Cohen is a mutant, too. Neither Brad or I carry the mutation. Therefore, Cohen and Chaia's are a match made in Heaven. Super freaky kids :)

Steph said...

Chaia did what 7 billion people couldn't. God's hand is all over her.

Anonymous said...

Confirmation that the Great Creator knew what he was doing when he made that little miracle and even more so that He has His hand on her and there is no better place for her to be:) Still kneeling in Springfield!!!