I don't write much these days. I'm at a loss for words. Fancy that.But that doesn't mean there is nothing to say. The past 3 months have been eventful to say the least but I find myself straining for the time to put it all down. And I'm not feeling particularly creative these days. Still...
It is well worth the effort to state that we have been on the receiving end of a miracle. Last week we went to Johns Hopkins Hospital in Baltimore to see Dr. Hal Dietz. Back in January I wrote of his research in the area of connective tissue diseases. He believes that a significant treatment he is studing now will be widely used within a few years. My twins, as I have written before, have vEDS - or Vascular Ehlers Danlos - a life threatening connective tissue disease. It took the life their birth mother, Anne.
While researching Marfan Syndrome, among other disorders of this kind, Dr. Dietz discovered that the gene for Marfan itself was not the cause of all the damage. What it did was trigger the body to over-produce an enzyme that was eating away at the tissue. With Marfan it is the heart specifically. In Ehlers Danlos, it is the entire vascular system. But all indications are that they operate in a very similar fashion. He further discovered that a widely used medication for high blood pressure, when delivered in large doses, blocks the enzyme and, in the case of Marfan in mouse models, opened the pathway for normal cell regeneration which ultimately allows the body to repair itself. While study is underway for this drug's effect on vEDS, all indications are that it will perform the same way. My twins are now on the medication. And equally miraculous is the fact that their CTA scans and echocardiograms came back normal at this point in their lives, save one vascular episode for one of them that will be monitored but is not cause for tremendous concern right now. And I believe that this is it.
As I have said before, I believe God told me 11 years ago (when they were diagnosed) that they would be alright; that they would not die of this horrible disease that took the lives of so many people in this family. I am alternately overwhelmed by the enormity of this blessing from God and not surprised by it at all. Because I have felt in my heart this whole time that something WAS coming. It just was a matter of waiting. On God's time. And it appears that last week in Baltimore, God's time had come. And so many people have been praying for it.
So I am going to go way, way , WAY out on a limb here and do something I have never done before. I am going to share a "conversation" I had with God. I need to state emphatically that I do not claim that God "speaks" to me - like say, scripture. But sometimes I talk and then I "listen" and I write down what comes into my head and my heart and sometimes it sounds like drivel but usually is sounds like it is something I need to hear. And all I can tell you is that it doesn't feel like it is from me. It feels as though I am taking dictation as I write the words - without thought, for the most part, from me. Not like I was in a trance or anything like that - but just like I was writing down what someone else was saying to me. So with that big disclaimer - I talked to God about what just happened here with the girls and this is what I think He said. And I wrote it down as I heard it:
I am the Great I Am. Do not slumber in your faith. Do not walk in your sleep for the Spirit is at hand and He will do mightier things than those you have seen. Miracles abound everywhere you look - find them and bolster yourself for I am not silent. I am active and working in all things - and mighty things you shall see and you shall claim them in my name and point to Me as the source. Do not be lulled by the explanation of "science and brain" - who is the author of those? What you take for granted would be viewed as unfathomable miracles in days gone by. Again, in My time. The challenge is to see Me is what has become routine. Have faith and understanding, your Father is at hand. Wake up! Revive! For the greatest miracle of all is the miracle of personal salvation - let the Spirit take hold. It will become a tangible thing in your soul, your heart. You cannot know me unless you seek, unless you speak, unless you invite, unless you prepare.
So there it is. To a lot of the people who read this I will probably sound crazy - or at least deluded. But even if I am, I believe God gave my girls a miracle - in the form of research and science and brilliance. But He was behind it all. And I am eternally and abundantly grateful.
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