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.

Tuesday, July 13, 2010

On Your Mark...

We arrived in Cleveland around 10:00pm Monday night. We weren't able to leave quite as early as we had hoped. I had to make an unplanned stop to see my dentist at the last minute (stupid tooth), so we got a bit of late start. The trip down was completely uneventful, just the way we like it.


After a poor night's sleep, we got up to a smoggy Cleveland sunrise, and headed out to the hospital for our 11:00 appointment. Tina spent a couple of hours getting poked, swabbed, and submitted the contents of her bladder for testing to make sure she was good to go for surgery tomorrow morning. We haven't heard anything from the hospital so we assume we've got the green light for tomorrow.

Tomorrow we need to be to the hospital by 6:15. She will be taken to pre-op where she'll get her IV and that lovely hospital apparel - oh yeah - and get her head shaved. From there she'll be given her general anesthesia and taken down for an MRI which the surgeon will use to know where to insert the electrodes. I think the procedure is fairly quick and then she'll go into recovery for a few hours and then over to the EMU (Epilepsy Monitoring Unit). This is where we'll spend the next 7 days as they monitor the electrodes for data to inform the surgeon as to what part of Tina's brain is causing the seizures.

Please pray that Tina's brain will produce adequate and accurate data from which the doctors can make a proper assessment. Please also pray for our children. We got a call from Meg last night about 11:00 wanting us to come home. She misses Tina and is already counting off the days before we'll be home - to her it feels like an eternity.


Tina is still doing well with the reality of surgery tomorrow morning, although maybe a bit more nervous than before. I find myself much more on the anxious side of things. As we talked with the surgeon's nurse and she ran us through what to expect for the next two weeks I must admit that I am not without my worries. It is not an easy thing to think about your wife with a big zipper going down the center of her head from her forehead to the back of her neck.


There is true comfort in knowing that it is in God's plan for Tina to be a zipper-head (sorry if that sounds insensitive but... well... get over it), at the same time there is the reality that this world is also full of pain and difficulty and no sane human ever relishes being in the middle of those painful and difficult circumstances. So lest this sound more "spiritual" than it is, know that I am still learning to follow what my Lord's half-brother said when he encourages us to "consider it pure joy...whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything." (James 1:2-4)


It is my desire to be mature, complete, lacking nothing, but I must admit that I still have a way to go because I'm not sure that I can look at my path or Tina's path for the next two weeks and consider it pure joy. I trust my God and I believe he is good and that he will use these trials to make me into the man he wants me to be, but I am not sure I can stand on this side of this trial and consider it joy. However, I do believe that there will be a day, with God's help, that I will be able to look back and joyfully recognize God's sovereign hand upon Tina and my life as we enter into the reality of brain surgery tomorrow.

6 comments:

Glenda said...

Praying for the peace that surpasses all understanding. The Lord has brought you to mind several times over the last few days. Thanks for the posts!

Woman With Windows said...

Praying constantly. And like Glenda, you've been laid on my heart & mind heavily and I'm praying every moment HE puts you there. And I'm praying for your precious kiddos --- and specifically for Megan & Tina's heart while you're all apart.

Thank you for posting Matt & for keeping it real. HE is in the details and we'll pray very specifically.

Much Love!

Anonymous said...

We read your blog with tears! You know our hearts and prayers are with you. We, too, have anxious thoughts and find ourselves constently submitting to God's soverignty. we are praying. If you need us to be down there now, we will come.

Christa said...

We love you! Praying!!!!

Unknown said...

You are in our thoughts, we wish you all the best. We are here for you, if you need anything, just ask.
The Wengers

Becky U said...

You are in my prayers/on my heart