At the conference we heard from doctors who are leading the way on research for Sturge Weber. We sat through their presentations and were even able to have one on one consultations with two of the docs. We learned that there are over 7,000 rare disorders worldwide (and that's only the ones we know of). Many are not researched and little is known on why they occur or how to treat them. We are very fortunate to have skilled physicians and other academics give their life's work to studying and learning more about Sturge Weber.
With that said, we walked away with the realization that there are more questions than there are answers in regards to Judah's condition. Every case of Sturge Weber is a new case in the sense that there seems to be no repeated pattern for how this syndrome plays out in the individual life of the one with Sturge Weber. I was again reminded that we are fearfully and wonderfully made by a Creator who at times leaves many things a mystery to us. This is very confronting for me and Lawrence alike. Will we choose to trust that our loving, merciful Father works all things together for our good and His glory and to give thanks no matter what the outcome of Judah's Sturge Weber? This is our challenge and what God is calling us to as we live each day with Judah, one day at a time.
Lawrence felt that we had met our "new" family after spending four days with the folks at the conference. We realized that these were the folks who God has called us to walk out life with, in one sense. We have the families to whom we were born; we have our church family, and now we have our SWS family. We don't know how many of these families know the Lord, but we anticipate having the privilege of sharing our lives with some of them, demonstrating the gospel through our care for them and through our response to our life's circumstances. We can begin to dream of all the ways God will use Sturge Weber in our lives for our good, for the good of others and ultimately for His glory! We can only begin, though, because God's ability to redeem all things, even things that are so horrible according to man's standard, is really beyond our imaginations.
Please pray that:
- we will continue to walk in faith, claiming the truths of Scripture
- we will guard our hearts from anxiety over what may be down the road (Phil. 4:6) and guard against anger or bitterness for having been handed this lot, remembering rather that the boundary lines have fallen for us in pleasant places (Ps. 16:5,6)
- we will chose praise (as my friend, Carole, often says), knowing that we have been spared the wrath of God and instead been given every spiritual blessing (Eph. 1:3) and eternal life in Heaven with Christ.
- we will be faithful ambassadors of the gospel to our "new" SWS family (2 Cor. 5:20)
Please thank God with us that:
- there is a Sturge Weber Foundation (only 20 yrs old) that provides resources and a forum for doctors and families to learn more and grow in our collaborative knowledge and experience of this syndrome
- there are medical professionals and others who are willing to give their life's work to learning how to effectively diagnose and treat SWS and its related syndromes
- there are generous organizations, government offices and individuals who are willing to help fund research