Today Tina is headed back in to reassemble her head. Sometime around 1:15 today they'll dig her skull out of the fridge, pull the electrodes out of her brain and snap everything back together. I expect that they'll give her a day or two for recovery before we head back home which means that we should be home either Friday or Saturday - my guess is Saturday.
Yesterday seemed like a very long day. It's like when you've gone on vacation and it seems like it takes you twice as long to get home as it did to get there. That's what it was like for us... except without the vacation. Once they told us that they would be putting Tina back together and sending us home, we just wanted to be done and get out of here - Tina more than me.
Yesterday we both were a bit numb and in a daze. Tina slept quite a bit, and I got some work done, but overall we just wanted to get the day over with so we could get her head put back together and go home. We're still trying to sort out all of the implications of what it means that they're not able to perform this surgery on Tina. All of the doctors and nurses are stupefied that the head neurologist is stupefied. Tina's surgeon came up yesterday to talk us through the surgery for today and he is simply amazed that the neurologist is at a loss. He said that they'll be talking and writing about Tina for years. (Now if there was only a way we could capitalize on that...) Not exactly the way you want to spend your 15 minutes of fame - the person that stumped the experts.
Overall I think Tina is handling the situation well and is determined to make the best of it. Of course anything sounds doable when compared to sitting in a hospital bed for another 4 weeks. At this point she'd tell you she could jump the Grand Canyon if that meant getting out of the hospital. One of the nurses asked us if we would consider coming back - Tina and I just laughed. Honestly we're not sure what the next step will be for us, but for right now our goal is to just get Tina back together, get back home to our kids, and get settled back into life. We'll see what comes next.
A very good friend of mine often reminds me of two things that always come back to me in these situation. The first is that God promises to give us what we need for today. My friend constantly reminds me that if I'm grounded in God's word it will be a lamp for my feet and a light for my path but not a gigantic spotlight on what's a mile down the road. The second thing he often reminds me of is that when I finally do get a mile down the road God will still be walking right beside me and he will still be illuminating my next step.
Too often I can get caught up in fearing what will happen in the future. I can easily project my fear into what might happen and what circumstances might bring and the unknown difficulty that awaits down the road. However, it is hard to remember to project Jesus along side those circumstances and future difficulties. It's hard to remember that God is not just the God of the present but he is also the God of the future. The future is not unknown to God and he will be as much with me in the future as he is in the present. If I can trust God to walk with me today, I can trust him to walk with me tomorrow and the next day and the next.
These truths serve as a huge encouragement to me: God gives me what I need for today, and no matter what happens in the future, He is not surprised and he will provide all that I need then as well. (Thanks Jim.)
Please continue to pray for Tina. Pray for her safety during surgery, a speedy recovery, and that discouragement would not creep in. Please also pray that through this all Jesus Christ would be made famous and that his glory would shine through us.
Romans 8:18 I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.
This is our great desire that we would keep our eyes on the reality that our lives tell but a small piece of a much larger story and it is only in the context of this larger story that our lives have any significance at all. You see, this larger story is the one that God has been telling since the beginning of human history. It is one in which he loves mankind and is on a rescue mission to save us from ourselves so that we can be with him forever. When I can keep my eyes on that reality it is then that I can say with the apostle Paul, "I consider that my present sufferings are not worth comparing with the glory that will be revealed in me." You see, in the light of eternity our present sufferings don't even register because of our hope in the salvation that comes through faith in Jesus Christ.
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.
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.
4 comments:
you both are such an encouragement to everyone who reads your blog. Praise be to the God of the universe for His continued comfort to you both during this time. "Be still and know that I am God" has been a comfort to us. love you so much, dad and mom L. P.S. from dad: remember, honey, "that didn't hurt" xoxoxox
2 days later, it still feels like a punch in the gut. These experiences are even a wake up call for those of us on the sidelines because to see your faith in this and see you suffering well is pointing us to God. In prayer for the surgery today. Get home quickly and safely, my friends.
Matt - for the past two days I have been reminded of those times after practice that you and I could be found at the end of a long hall sitting next to each other talking or at times very quiet, praying and at times crying together. Then, as now, trying to find an answer to a hard yet short question - WHY? When it was finally time to leave we would remind each other "Once and Eagle, always an Eagle! But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." (Isaiah 40:31 NIV) Time to go - love you both, Matt! Coach
Praying! Aunt Barb
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