Wednesday, January 23, 2013

Devotional

Russell and I had the humbling experience of being asked to write a devotional for our church's use. Our church is entering into a time of commitment for the payment for one of our facilities. This devotional guide is a 21 day guide written by different members of our congregation to help guide us in thoughts of prayer, God's will and giving.

We agreed to write the devotional and then we began to seek out God's guidance for what we should write. We were given the verse on which we should base our devotional.

Our devotional guide started Monday, January 21, and will run for the next 21 days. Russell and my devotional is featured on day 3, today.

"And the world is passing away, and the lust of it; but he who does the will of God abides forever." 1 John 2:17

Russell and I mulled over many potential topics to write about concerning this verse from our many trips to Nicaragua to share about Jesus, the urgency of the gospel to coaching a basketball team. God directed our hearts through the process of each of these and how this verse can apply. We specifically chose to focus on prayer but even more importantly God's will for our lives.

This is what God placed on our hearts to share. May it be a blessing to many......

Having grown up in the church, we heard much about the will of God. And honestly, it seemd like a pretty simple idea to follow: you go to church, you pray, you read your Bible, and by doing so you are living in God's will. Our little world had not faced many trials until we had our second child. A little over six years ago, our second daughter was born. What joy and blessing we felt had been bestowed upon us again. A short while later our very core and beliefs would be put to the test. We would begin to question, "What was God's will? What was eternal?" Our daughter was born with a condition that has left her where she cannot walk or talk; she is basically still an infant. If we were to "survive" this, we would need to seek out God's will for us. We would need to spend time asking for a conscious awareness of what is eternal.

After much prayer and contemplation, soul-searching and tears, we feel we have begun to grasp the concept of God's perfer will and his eternal blessings. You see, if we only look at our daughtert through earthly or wordly eyes, we see her as imperfect and flawed. We could easily think that this could not be God's will for anyone. However, if we let our Holy Spirit comfort and guide us, we can see that through her life, she is bringing God glory. Her very existence is evidence of God's abiding love and His will that we be in constant and perfect union with Him.

Jesus, help us to focus on things eternal.

Thursday, January 17, 2013

The Answer that Changes Everything

So for a little more than 6 years, our family has been on a journey we never thought we would travel. We have learned so much about ourselves, each other and our amazing bodies and minds that God created. After having much testing done with our own neurologist and traveling to world renowned Mayo Clinic for further testing, we were still left with the unknown. There was no known cause for why Claire is like she is. There was no reason for her seizures, her delay etc. Not that we had given up hope, but we had resolved ourselves that we would not know why. We just learned to accept her as God created her to be. And what a joy and blessing she is.
So much to our suprise, in September 2012, our neurologist asked if we would be willing to consider trying this new panel of genetic testing done specifically targeted at kids like Claire who started seizures so extremely early (weeks old instead of months or years old). We said sure, what do we have to lose. This testing would involve one small vial of  blood that would then look at 38 genetic disorders. Some of these disorders we had been tested for  before and they always had come back negative. We had the testing done and then the waiting began. We actually waited so long we almost forgot we had even had this testing done.
Then on Monday, out of the blue, the Dr. calls. Sure enough, Claire tested positive for one genetic disorder. My mind is still swirling about this possibility. As the Dr. said, this gives us an answer to they question why, but there is no cure, yet.
So this is the answer that changes everything and nothing all at once. We have a reason why she has seizures, delays, trouble eating, small hands and feet and even why she crosses her legs all the time. But for now, there is no treatment.
She has been diagnosed with CDKL5. www.CDKL5.com A very rare, genetic disorder. Only 200 known cases worldwide. Whew! Speaking of being fearfully and wonderfully made. This genetic mutation happened upon conception. It is not based down from the family and won't be passed down to other kids. It truly could only happen as God designed her. What an amazing idea!
We continue to hang onto hope now that some day, wonderfuly doctors will find a cure for this. Something that will treat that particular gene. But even if we never see that day, thank you God for your amazing creativity in creating Claire. Thank you for blessing our lives with her. Thank you for entrusting her to our care. Thank you for this journey you have placed us on.