Untraceable Paths: Sleep is Over Rated

Early Easter morning, four and a half years ago, life for our family changed forever. I awoke to the sound of an otherworldly noise and Tina’s body convulsing uncontrollably. That event began us onto a path where we would discover that Tina was suffering from late onset Epilepsy. That path would include long periods of Tina being home-bound and a non-stop roller-coaster of trying to figure out which medications would strike the best balance between controlling her seizures but also limit the debilitating side-effects of chronic fatigue and loss of focus – that effort has only been marginally successful.

On July 14th 2010, our path took another turn when Tina underwent a five week long surgical procedure where doctors at University Hospitals in Cleveland Ohio implanted multiple electrodes into her brain in the hope that this would allow them to locate the spot in her brain that is responsible for her seizures and then surgically remove that spot in an attempt to control her seizures without medication. Unfortunately after 3 surgical attempts to locating this seizure focus, the clock ran out and the risk of continuing this procedure became too great, so they removed all of the electrodes, and sent her home with very little to show for our 5 weeks in the hospital.

When we left Cleveland two summers ago we couldn't imagine that we would go back anytime soon. Those five weeks in the hospital were very disappointing for Tina and difficult for our kids. However, over the course of the last year and a half, Tina's seizures have become progressively more frequent, and medications have become progressively less effective at controlling her seizures. So, after consulting with Tina's neurologists, it is clear that we are in for yet another turn in the path of life.

We will once again be making the trip to University Hospitals in Cleveland, and on Wednesday January 11th, Tina will once again undergo the same procedure to implant electrodes in her brain to monitor seizure activity in the hope that they can determine the physical location of her seizures and surgically remove it.

This is not a path that we went looking for nor did we anticipate how sharply our lives would change literally over night when four and a half years ago these seizures began. There have been days when we have wondered as to why these things were happening and what God was up to in this. What we have learned is best summed up by the Apostle Paul in his letter to the church at Rome where he said that the paths that God lays out for us are "beyond tracing out." We may not understand this path or where it’s leading us, but what we do know is that we would rather follow God’s untraceable path than to follow any path we could lay out for ourselves. This blog is our attempt to bring others along with us as we walk along God’s untraceable path.

Thursday, August 5, 2010

Sleep is Over Rated

The epileptologist just came through and I've now decided that he is a very evil man. He informed us that he was leaving this afternoon for Grand Rapids. I had to peal Tina off his leg as she begged him to take her with him. (Just kidding.) He goes to GR once a month to consult with the epilepsy program at St. Mary's Hospital - where Tina's neurologist is at - so they'll discuss her case while he's there.

The other thing that he recommended was another night of sleep deprivation. He was just full of good news today. Actually it's not that bad. The kids will be here today and tomorrow and that should help keep us going after a night of no sleep.

Both yesterday and today, Tina has been in very good spirits. It is amazing how God has held her up and encouraged her spirit despite the difficult circumstances. Thanks for praying.

5 comments:

Anonymous said...: Matt, it amazes me how strong both of our wives are. I have watched Kari go through some incredibly tough times, through the cancer, through her seizures and subsequent testing, yet her faith never wavers, nor does her resolve. I'm sure she'll be much the same when we have to start the same process you're in within the next few months. May God continue to watch over the two of you and your kids as he leads you through this time of trial.

God Bless,
Scott Leep; August 5, 2010 at 12:54 PM
linusvpelt said...: Actually, after a night of no sleep and three weeks of no kids, I predict 4 hours into the visit (once the novelty wears off) boom! :) JK I know it has been hard on all of you to be apart.; August 5, 2010 at 12:59 PM
Anonymous said...: I am sooo glad the kids are coming. How great for them and for you. God Bless! Aunt Barb; August 5, 2010 at 3:11 PM
Pam Newman said...: Just to let you know I have been quietly following your blog and praying. We are good friends of Dan and Barb. Pam Newman; August 6, 2010 at 11:28 AM
Pam Newman said...: One more thing....this quote from Oswald Chambers has helped me more than once in my life when put in a position of helplessness:

Perseverance means more than endurance— more than simply holding on until the end. A saint’s life is in the hands of God like a bow and arrow in the hands of an archer. God is aiming at something the saint cannot see, but our Lord continues to stretch and strain, and every once in a while the saint says, “I can’t take any more.” Yet God pays no attention; He goes on stretching until His purpose is in sight, and then He lets the arrow fly.; August 6, 2010 at 11:37 AM