Monday, March 4, 2013

The Journey of a Thousand Miles

Hey friends! Appreciate your prayers more than you'll ever know.

We are less than 5 weeks from launch and there are lots of fun things to knock off the list. Just pray for sanity and margin. Pray that we don't lose our souls in the rush to gain a church. Pray for protection for Shaina and myself that our relationship would maintain its hotness even in the chaos of the next months.

Pray for God to bring the Celebration Catalyst He is calling to Columbus and to C3. Shaina is going to help lead the worship in the short term, but ultimately we need someone to run this and perhaps be the apprentice who eventually plants our second church.

Chaia's trip to the Cleveland Clinic went well. The team is interested in working with her. The scenario they are pitching to us is going to Cleveland every other week to try and work on getting her off the feeding tube. Based on what they've seen with other patients, they think that it will likely take a minimum of 2 years to get her weaned off the tube and eating food orally.

Not what we wanted to hear. The biggest stressor of all Chaia's medical issues hasn't been the hasn't been her hasn't been the 11 or so meds she is on around the clock.

It's the feeding issues.

2 more years of that.

That's around 50 trips from Columbus to Cleveland and back to Columbus.

Five hours round trip.

2 more years of watching this beat up our family?

Obviously a big decision.

Part of my soul defaults to despair. Waking up from deep sleep to the sound of the kiddo gagging at 3 in the morning. Having to do loads of laundry seemingly daily to keep up with Chaia's throwing up. 2 more years? Are you kidding?

Then I think about the promise and then had to trust God for decades to see it come to fruition.

Or Joseph...who got the dream...then had to endure slavery and prison for 20 years to see it come to fruition.

How much am I staking the claim in God's answer to my prayers? Am I willing to believe the promise of Ezekiel 36:26 even if it takes 2 more years? 10 more years? A lifetime of years?

This is the story of LIFE...that hardship and suffering will test our resolve to believe desperately in God's glory. Will we be satisfied in Him even when the storm rages?

Not only to persevere...but to be satisfied?

Not only to survive...but to thrive?

Not only to carry on...but to carry joy?

No idea where this story goes...but I know I trust the Author.

Chaia wins when we kneel.

1 comment:

Anonymous said...

Ben and Shaina,
I have followed your blog since shortly after Chaia was diagnosed and have had the honor of holding your family up in prayer. I am the Telemedicine Coordinator for the University of Kansas Medical Center. Telemedicine, or meeting with your doctors over an encrypted video connection, is used to connect patients at a distance to providers with services they need. At KUMC, we actually have a telemedicine Feeding Team that works with rural patients with issues like Chaia's. The patient goes to a site, often their local hospital, to use ITV equipment that connects them our doctors in Kansas City. Labs and other tests can be done at the local hospital, with results being forwarded in advance to the distant team. Feeding logs, bet you are familiar with those, are also sent in advance. I am not suggesting our team, but I do know that both Columbus Nationwide Children's Hospital and the Cleveland Clinic have telemedicine services available. I do not know if their Feeding team or doctors that Chaia sees are available by telemedicine, but it might be worth a few of those 5 hour drives to ask them. m-Health, using mobile devices like iPads and smartphones for telemedicine, may also help your family. Here a link that may give you more information.

If I can assist further, you may contact the KU Center for Telemedicine & Teleheath at 913-588-2226.
Joy Williams