The Venable Four is just us: Stephen, Karli and our two boys. Stephen and I met each other at the House of Prayer in Kansas City. In many ways, it was love at first sight. Several months later, we were married at sunset in the mountains of Colorado. We vowed before our closest friends and family to love Jesus and to love each other come what may – on mountaintops like that night and in valleys, some of which we have already known – until the day we see His face.
The verse the Lord gave us for that glorious day is a verse that really seems to be the banner over our lives together: John 1:14 concerning Jesus, “And the Word became flesh and dwelt among us, and we have seen His glory, glory as of the only Son from the Father, full of grace and truth.” It is truly Jesus who is the foundation and first love of both of our lives, and He will always remain at the very center of our journey together. Three wonderful years later, we met our first little miracle: a 7 pound little boy, who from day one has left us beside ourselves with wonder, joy, and unparalleled love. And a few years after that, the Lord would surprise us with a second miracle, our fearless little adventurer who never stops surprising us.
In this blog, I often speak of my health and of suffering, and many have asked why or what is going on. I have a very rare form of a genetic skeletal dysplasia called spondyloepiphyseal dysplasia congenita. I have had it since birth obviously (since it is genetic), but I was officially diagnosed when I had my first surgery as a toddler. I spent a lot of time in hospitals and in body casts between 2 and 12 years old. During that time and since then, I have had multiple surgeries on my joints and joint replacements. Because of some abnormalities in my spine and bones as I grew, as well as chronic degeneration of cartilage (or precocious osteoarthritis) which is all part of SED, all of the joints and spine in my body are degenerating with time, which causes quite a bit of pain as well as limitations and immobility. Like most diseases, especially genetic or degenerative illnesses, there is a spectrum of severity for those with SED, and I somehow ended up with the short straw in the genetic lottery. In the last few years, doctors have advised me to replace both knees, both shoulders and to fuse part of my ankles, and I need to have spinal injections and other joint injections a few times a year as well. It was our hope that moving to Colorado would be beneficial in prolonging that particularly brutal to-do list, and thus far, it seems as though that is a real probability (thankfully). But I still have to have other procedures done and take a handful of medications in the meantime to prolong those surgeries and to enable me to stay mobile as much as possible. In the spring of 2015, a series of biannual MRI’s and images of my spine revealed multiple problems as a result of the advanced degeneration throughout the entire length of my spine (cervical, thoracic, and lumbar). The most troubling news was concerning my cervical spine (neck). The MRI showed that the degeneration of my spine has now infringed into the spinal canal in my neck and is dangerously compressing my spinal cord (cervical spinal stenosis). I have some neurological symptoms already, but they expect that those will continue to worsen with time and as the spinal canal continues to narrow (losing more function of arms, legs, other organs) until it is necessary to go in surgically and try to fix whatever they can (which means really major surgery and because of the shape of my whole spine, probably many, many surgeries once that ball starts rolling). Meanwhile, the doctors have said that any trauma or big movement of the head and neck area, anything from a minor car accident or a little fall could be life-threatening or cause paralysis. This news was a total surprise and huge blow to our family, and is something we are still navigating and trying to process… and even trying to decide what the next step is. There isn’t really a simple solution to any of the above, and so we lean into Jesus and trust His leadership and listen to our doctors and pray for wisdom, and above all, for grace to face it all.
It has been and continues to be quite a journey, one certainly marked by pain and growing limitations, but over which His banner of love and sufficient grace waves extravagantly. Though I may not have won the genetic lottery, I absolutely won the grand prize in the husband lottery. I am amazed at Stephen’s capacity to love and serve both me and our children in the ups and downs of a chronic degenerative disease. And I have also won the lottery when it comes to our friends and family and our community. We are overwhelmed at the love that surrounds us on all sides. Despite the struggle and the enormity of our circumstances, we are rooted deep in love and overflowing with gratitude for Jesus, for one another, and for our friends and family.
Together we have devoted our hearts and our lives to loving Jesus through the ministry of night and day prayer and worship, to missions, and the preaching and teaching of His Word because we are absolutely convinced of Jesus’ worth and supremacy. We served at the International House of Prayer Missions Base in Kansas City for almost 14 years. We now live in Colorado and help with the leadership of the ACTS (Antioch Center for Training & Sending) School located at Every Home for Christ in Colorado Springs, which is a student missionary organization sending teams to some of the hardest and darkest corners of the earth as witnesses of the worth of Jesus Christ.
Because ACTS is a missionary organization, much of our income comes from raising support. If you would like more information on supporting our ministry, Email Us anytime.
For more information about Stephen’s ministry or for resources such as teaching, notes or articles, visit http://www.beholdingjesus.com