Home

It was a week ago today that we packed up our room in Cleveland, said good bye to our new found friends in the EMU and headed home. For Tina it was the first time and for me only the second time in 5 weeks that we felt the direct rays of the sun and breathed fresh air. We didn’t get more than a couple of blocks down the street before we ducked into a Burger King…

We took our time driving home. Tina wanted to stop at Cabella’s in Dundee but I talked her out of it – after laying in bed for 5 weeks she had a hard enough time just getting to the car let alone walk around the gigantic Cabella’s store. Now I know that most of you probably don’t believe that it actually happened this way (Tina wanting to go to Cabella’s and me talking her out of it) but I assure you it is true – my wife is definitely unique, which is part of why I love her. We did end up stopping at TGI Friday’s in Brighton for a New York Strip that tasted absolutely unbelievable. After 5 weeks of eating nothing but hospital food I can’t even describe how great it was to eat a medium rare steak.

By the time we got home we were both pretty exhausted. The inactivity had definitely taken its toll on Tina’s body. She struggled to step up into the house and just walking around the house wiped her out. That first night home was very unsettling for me. Before we left the hospital the nurse went through all of Tina’s care instructions and she warned me about all the things to watch out for – cerebral fluid leaking out of her incision, bleeding, infection, neuro-responsiveness, falls, cleaning, etc. – all of these thing were constantly at the forefront of my mind.

Going to bed last Friday night was the beginning of one of the most fitful nights of sleep I’ve had in a long time. When we were in the hospital there was a certain sense of security that I took in knowing that even when I was asleep there was someone in the other room watching Tina on the video monitor and could see exactly what was going on inside of her brain. As odd as it may seem, you get very used to being able to look at a monitor to know what’s going on with someone. But of course, we don’t have any of that at home and so I constantly was waking up wondering how Tina was doing. (It didn’t help either that our bedroom is on the second floor and it was 95 degrees, 98% humidity and our house had been shut up with no AC for more than a month.)

Our kids came home on Sunday afternoon and my mother-in-law came Sunday night to stay with Tina and the kids while I went back to work. It has been great having her there to help out and give me some peace of mind while I was at work. Throughout the week Tina has continually gained more and more strength. She no longer get’s too winded walking around the house and she’s able to go up and down the stairs without fear of falling down them. She still has a fair amount of swelling in her face and she’s still pretty bald, although her hair is growing quite well – besides she’s beautiful bald.

This week has had its ups and downs as our family settles back into normal life. The adrenalin has subsided, the immediate stress is gone, and the normal everyday issues of life are starting to return. (kids fighting, the cat bringing dead mice to the door, complaining, bickering, yelling, crying – kind of like your house.) At the same time we have enjoyed being back together as a family. (watching a movie together, eating together, playing games, wrestling, cuddling, family devotions and nighttime prayers.)

The question I get the most often, now that we’re home, is whether or not we are disappointed and discouraged with the outcome of this adventure we had in Cleveland. Do we feel frustrated that we sat there for five weeks without it resulting in any treatment for Tina’s seizures, and only the hope to go do it again at some point in the future? I would be lying if I said that there wasn’t part of us that is disappointed. We went there for the purpose of treating Tina’s seizures not to take up fulltime residence, so not getting that treatment is disappointing. However, from the very first post I put on this blog we knew that it was a real possibility that we might not find treatment… or worse. I referred to the fact that we were on a journey and it was our desire to follow the path that God had planned out for us as we went on that journey. I also referred to the fact that God had revealed through His word that His paths are beyond tracing out.

Apparently this untraceable path included spending five weeks in Cleveland without finding a treatment for Tina’s seizures. Rest assured that if I were God this is not how it would have turned out. If I were planning my path things would have gone much different – it likely would have gone a direction that each and everyone one of us would have been able to trace out ahead of time. What one of us, if we were designing our own path, wouldn’t have planned for the electrodes to be put in the right location the first time, for Tina to have a bunch of seizures the first day there, have surgery the second day, and be out of the hospital by the third; seizure free, and no adverse affects from the surgery? I would have – but let me just say that, for all of our sakes, it’s a good thing that I’m not God. Why?

Because I have learned that sometimes the “traceable” path is not always the best path. Robert Frost’s “The Road Not Taken” is my favorite poems because it reminds me that sometime the path that is unknown and unsearched often times turns out to the best, although we couldn’t see it at the time.

“The Road Not Taken” by Robert Frost

Two roads diverged in a yellow wood,

And sorry I could not travel both

And be one traveler, long I stood

And looked down one as far as I could

To where it bent in the undergrowth.

Then took the other, as just as fair,

And having perhaps the better claim,

Because it was grassy and wanted wear;

Though as for that the passing there

Had worn them really about the same.

And both that morning equally lay

In leaves no step had trodden black.

Oh, I kept the first for another day!

Yet knowing how way leads on to way,

I doubted if I should ever come back.

I shall be telling this with a sigh

Somewhere ages and ages hence:

Two roads diverged in a wood, and I--

I took the one less traveled by,

And that has made all the difference.

I cannot see from where I am right now how this untraceable path will turn out to be the best, but I am confident that God’s untraceable paths are, and will lead to, an end that is far better than anything I can possibly imagine. So are we disappointed that our trip to Cleveland didn’t turn out differently? Absolutely. Would I change it if I could? Absolutely not. I believe with all my heart, that someday I will be able to say with Robert Frost that by taking the untraceable path “[it] has made all the difference.”

Going Home

Tina took it very easy yesterday - lots of naps. We were surprised last night when the neurosurgeon informed us that we were clear to go home anytime. He even said if we wanted to go home last night we could, but given the fact that she still had a PIC line in her arm and it was 6:00pm and we wouldn't get home until well after mid-night, we decided to take it slow and wait until today to go home.

We're taking it very slow again this morning. Tina had her PIC line taken out earlier this morning, and she also needed a haircut. When she went into her last surgery her hair had grown so much that they needed to shave her head again, but rather than shaving her head they simply shaved around where her incision was. The part of her hair that wasn't shaved was about an inch long so, as you can imagine, it made for a pretty rough look. I told the neurosurgeon to stick to surgery because barbering was not his cup of tea. To which he said, "well if after four brain surgeries the worst thing that comes out of it is a bad hair cut, I'd say you're doing pretty good." I guess I'll give him that one. At any rate we just ended up shaved the rest of her hair off this morning.

The neurosurgeon's nurse came in this morning and gave us Tina's discharge orders and the epileptologist also stopped in to say good bye. The good news is that we're going to be able to do Tina's surgical followup with a neurosurgeon in Grand Rapids, and the epileptologist has also agreed to do Tina's neurology followup himself when he makes his visits to St. Mary's in Grand Rapids. Interestingly enough the neurosurgeon that will do Tina's followup in GR is the epileptologist's son who studied with Dr. Miller (the neurosurgeon who did all of Tina's surgeries) and Dr. Miller feels very comfortable turning Tina over to him.

As of right now we're clear to leave any time, but as much as we would love to bust out of hear right now we've decided to take it slow. Tina is feeling very tired this morning and so she's going to take a good long nap and eat lunch here at the hospital then we'll probably hit the road mid-afternoon.

Please continue to pray for Tina as she is very tired. After four surgeries, which means four times under general anesthetic in four weeks, Tina is pretty wiped out. Sitting in bed for four weeks with very little movement has also made her quite weak. Walking into the bathroom this morning, Tina got very dizzy and needed to get back into bed. Please also pray for her continued healing as there is still risk of infection and other complications over the next month or so. It's going to take a while for Tina to get back to a normal activity level which might be difficult for our kids to understand. Tina's mom is going to come and stay with us next week since I need to get back to work while I still have a job, so hopefully she can help out with the kids so Tina can continue to rest and heal.

It's hard to believe that we are near the end of this phase of our journey. Although we are going home without the solution that we were hoping for we don't feel like it has been a waste. God has used this time to deepen our marriage, deepen our relationship with him, and to shine truth to those that have cared for us here. Although we may never fully understand this untraceable path that we are on, we can see some of the amazing ways that God has done some very positive things.

As we head home we recognize that our journey is not over. As much as ever we remain on that untraceable path. We would not have chosen this path, we don't understand all of God's purposes in it, nor do we know why he wouldn't allow for Tina to have a surgery that would treat her seizures, yet we do know that God has proven that he is good, that he is loving, and that he is sufficient for us. His paths may be untraceable but we know that wherever it leads it is exactly where we need to be.

Oh, the depth of the riches of the wisdom and knowledge of God!

How unsearchable his judgments, and his paths beyond tracing out!

Who has known the mind of the Lord? Or who has been his counselor?

Who has ever given to God, that God should repay him?

For from him and through him and to him are all things.

To him be the glory forever! Amen.

- Romans 11:33-36

It is our great desire that through this experience we have brought glory to God. My hope is that you have seen God's glory through this blog and that your focus has been turned toward him, not Matt and Tina.

I will likely continue to post updates to this blog that may or may not pertain specifically to Tina and her health, but I did want to thank everyone who has followed our journey over the past month and offered their thoughts, prayers, encouragement, and wisdom - it has helped us immensely while we have been isolated here in Cleveland. Words cannot express our gratitude for you.

Home Away From Home: The EMU

Three hours after Tina went into recovery I still hadn't heard anything else so I asked to be allowed to go back and see Tina which they did. Tina was tired but she looked good and was awake and alert. I asked the nurse why she was being held in recovery so long and he said it was because they were waiting for her room to open up. I asked him where they were moving her to and he said the Neuro Step-down Unit. When I asked about the EMU he said that normally they don't put patients back in the EMU after they remove their implants. I told him that normally patients don't spend 4 weeks in the EMU to begin with and that the EMU was expecting her back and that the neurosurgeon had told me that he had requested that Tina be put back in the EMU. The nurse said that this wasn't what the surgeon had ordered on paper. Ultimately I convinced him to call the surgeon which he did and in the end Tina was taken back to the EMU.

We were so happy to be able to come back to the EMU and they were happy to have us back. They had done nothing to her room from the time Tina left for surgery. They simply shut the door and put a "caution wet floor" sign in front of it, so there was no way someone else could move into it. However, that meant when Tina showed back up after surgery her bed hadn't been made up. So everyone pitched in. Even the EEG tech came in and helped make her bed and transfer her into bed and all the rest (totally out of the EEG tech's job description). I told her that she would make a great nurse but she said that she wouldn't do "nurse" work for just anyone.

Tina slept well last night and yesterday is one big blur for her. Today she's doing very well, tired, but good. She loves not having wires coming out of her head and being able to move around unhindered. The swelling is down considerably and we're hopeful that the doctor will let her go home soon.

Pray for our kids as they are struggling with wanting to go to our annual family camp without us. They keep trying to pin us down to an exact day that we're going to be home because they want to be there when we get home. They love our family camp and it would be a shame for them to miss it (which really isn't an option).

We are so excited to be headed home and can't wait to do simple things like mow the lawn, eat at our own table, and sleep in our own bed. After sleeping in a separate bed for more than four weeks, it will be so good to sleep next to my beautiful wife again. however, we will need to take things easy. After four weeks of laying in bed, it's going to take Tina some time to regain her strength so it may be a while before she's able to do everything she wants to do. The other difficulty will be that since she had a generalized (grand mal) seizures while here, she will not be able to drive for at least six months. We've been here before and with the help of friends and family we're able to manage through, but it does add some additional complications to life.

Many of you have asked about bringing us a meal when we get home. If you're interested in doing something like that you can get a hold of Katrina De Man at: 616-874-7124 or katfood16"at"yahoo.com and you can coordinate with her. Thanks you in advance for helping out in this way.

She's Out: Take Four

Dr. Miller just came out and said that Tina is all done and everything went very well. She's got all the hardware out and the bone is back in. Please pray that they would be able to work it out so that Tina can go back up to the EMU for recovery. Normally they would send her to the Neuro Surgical Unit (NSU) and then to a step down unit after her surgery, but given the fact that she has been given her own PO box in the EMU, everyone is pulling for her to go there for her recovery and then be discharged directly from there. It all depends on bed availability in the EMU but the neurologists, the surgeon, the nurses, and the EEG techs are all trying pull the strings to get her back there.

One of the head nurses told me last week that the best thing to do was to leave all our stuff all over the room when we left for surgery and not come back until Tina was done with surgery. If our stuff is still in the room they can't clean it and if they can't clean it they can't move another patient in, so that's what we did - it's a way to work the system.

As of right now Tina will be in recovery for a couple more hours and then will be moved either to the EMU or the NSU and as soon as she's strong enough and feeling well enough we'll be out of here. For now I'm not speculating on when that might be but we're hopeful that it will be sooner than later.

Thanks for your prayers, and we would ask that you continue to do so in the days and weeks to come as Tina recovers and as we come to grips with the results of this untraceable path we've been walking for the past month.

She's In: Take Four

Four weeks ago today Tina and I came to University Hospitals, Tina had her first surgery, and we started this whole journey of trying to find a treatment for her epilepsy. It seemed somewhat surreal this morning that this is the fourth time we've done this and that Tina and I haven't left this building in a month. It was almost funny that I was greeted my name as I approached the desk at the surgical waiting area this morning.

Tina stayed up until about 3:35am this morning and no, she didn't have any seizures. Truthfully, as the clock ticked by, and even when they started to administer anti-seizure meds in preparation for surgery, Tina felt more a sense of relief than disappointment. The realization that we are finally going to be done with this and going home was very encouraging to her. Unfortunately the nurse came in at 5:15 and said that surgery had called and were on the way. I'm not sure Tina actually fell asleep before she had to wake back up and have all the surface electrodes taken off.

Tina was finally taken into surgery at about 8:30 this morning and they will be pulling all of her electrodes out and putting her skull back in place. They expect the surgery to last about 2 hours at the most. Please pray for her safety and for skill for Dr. Miller.

Early Surgery

As of 9:00pm (Tuesday) there have not been any seizures. Tina is doing her best to exhaust herself and try to trigger something. We got up Sunday morning about 8:00am, stayed up all Sunday night and Monday morning, and then after Tina took a 1 hour nap on Tuesday morning she stayed up the rest of Tuesday and dozed a couple of hours in front of the TV last night. She took about a 1 hour nap this morning and is still going. She is now under doctors orders to stay up until 3:00am tomorrow morning.

Tomorrow they're going to get her up at 4:30am to scrub down for surgery and then will give her anti-seizure meds at 5:00am in preparation for her surgery at 8:00am. The nuro-surgeon came through this afternoon and feels very strongly that Tina needs to get the electrodes out very soon because at this point the risk of bone infection goes up exponentially.

Right now the surgery she is scheduled for is to remove the electrodes from her brain and replace the skull. If she has a seizure before surgery they may postpone it and actually do the surgery were they remove (resect) part of her brain to treat her seizures, but it all depends on her having a seizure yet tonight.

We are feeling very at ease tonight. We are praying for a seizure but feel at peace with the possibility that it may not happen. Please continue to pray for Tina - both that she might still have a seizure tonight but also that her fourth surgery in as many weeks would go smoothly and that she would have a speedy recovery so we can get out of here and get home.

Thanks so much for waking through this process with us by reading this blog and offering your insights, encouragement and your prayers.

Faith?

Sorry that I missed posting anything yesterday. For the most part it was a very uneventful day. Tina's brother and sister-in-law came by the hospital in the morning for a few hours and headed out shortly after noon. Then Tina decided to pull another all-nighter to see if a last ditch sleep deprivation might get some seizures going. I have to admit that last night's sleep deprivation has been the hardest for me of any of the others, but Tina pushed through and is still going strong at 3:30pm (Monday).

This morning we were hit with some tough news that we're still trying to figure out how to deal with. The epileptologist came in this morning and expressed that he's becoming increasingly concerned with how long Tina's electrodes have been in her brain. His concern isn't because of any symptoms Tina is showing or anything like that, but just because of the length of time that she has had foreign objects in/on her brain. So it is his recommendation that they schedule her for surgery on Wednesday (11th) to take the electrodes out, but we won't know for sure until he can consult with the neurosurgeon tomorrow.

The obvious question we had for the epileptologist was what the nature of the surgery would be. He said that unless Tina has some seizures before now and Wednesday, they will simply remove all the electrodes, put her skull back in place, and send her home. As you can imagine this is difficult news. Essentially, unless Tina has a seizure within the next 48 hours, she will go home in the same state that she came to Cleveland in a month ago.

Although we are still praying for a seizure(s) before Wednesday, we had hoped that perhaps they had gotten enough information from all the seizures she had back with the first electrode and could proceed with some kind of resection (cutting out part of her brain) based on that. Apparently, without additional seizures, the risk is just too high to proceed. We are fighting disappointed but Tina continues to amaze me with her ability to holding onto the truth that God is good and is in control in the midst of her disappointment.

We have not given up hope. It is certainly within God's ability to allow for Tina to have seizures that would lead to a resective surgery, and we are praying for that, but I feel a sense of desperation knowing that we're down to the wire.

As I stood in the shower this morning, trying to let the fatigue and disappointment wash down the drain with the water, several thoughts came to mind. I have always struggled with certain passages of scripture that talk about having faith that moves mountains (Matt. 17:20; 21:21), and stories about people who simply have enough faith that God is going to do something and so it happens. I remember a scene from one of those movies that that one church down south made (I think it might have been Facing the Giants), where one of the "spiritual" characters says something like, "who has the greater faith; the farmer who prays for rain and waits, or the farmer who prays for rain and then goes out prepares his field."

I have to admit that I struggle with concepts like this. To me it almost feels as though God moving in my circumstances is contingent upon the amount of my faith that he will. In other words, if God answer my prayers it's because I had enough faith. If only I could somehow believed - really believed - enough, then the "mountain would move." The flip side of that thinking is that if my "mountain" (seizures) doesn't move it's because my faith has failed - I didn't believe enough. This is a concept that I have never been able to get my head around. I just can't make it fit with my theology.

I can't spend the next 48 hours trying to work my mind and heart into a place where if I just believe enough and have enough faith, that God will give Tina a seizure - like somehow my faith that God will do something obligates him to do it. So as I stood there in the shower, trying to wrap my head around all of this, the thought came to mind that perhaps it isn't about how much faith and belief I have in God doing something that I really think he should, but rather it's about how much faith and belief I have in God. Period.

If I believe with every fiber of my being that God is going to give Tina a seizure in the next 48 hours, does that mean that she will have one? I don't think so. It occurred to me that if God gives Tina a seizure based on my faith that he will do it, then the focus become primarily on the circumstances, the event, the seizure, not on where it should be - God. Perhaps faith that moves mountains is faith that is focused not on the mountain but on the one who actually has the power to move it regardless of whether or not he chooses to. If that is the case, then my faith will not falter even if the mountain doesn't move.

There are two farmers who pray for rain. One waits for the rain and the other goes out and prepares his field. Which one has more faith? Clearly the one who prepared his field, right? But what happens when the entire planting season goes by and no rain comes at all and the second farmer goes bankrupt because he invested his money into a field that never produced a crop? Then what? Is his faith shaken? If his faith is based on God giving rain (circumstances) then it will, but if his faith is based on God, period, then even if rain does not come his faith will remain.

The apostle Paul said in Corinthians 13 that "if I have a faith that can move mountains, but have not love, I am nothing." What I take this to mean, relative to my circumstances, is that what is of priority is not whether or not I have enough faith to move the mountain, or bring the rain, or produce seizures, but whether or not my love for God, or my belief in God's love for me, changes if the mountain doesn't move, if the rain doesn't come, or we go home from the hospital no further ahead then when we started this whole thing.

Please, please pray. Pray that Tina will have a seizure. Pray that the surgeon will be able to do a resection. Pray that Tina and I will remain confident in God's love and our (and your) faith would not waiver even if the mountain doesn't move.

"Understanding Will Never Bring You Peace"

Not only is sleep overrated (title of previous post) but so is sleep deprivation. We decided that perhaps "regular" sleep deprivation wasn't quite tough enough so we decided to step it up a notch. We staying up until about 4:30am (Saturday morning) and then went to bed only to have the nurse wake us up at 6:00am (Saturday morning). The thought was that maybe when we just stay awake straight through, our bodies hit a second wind and Tina's not that effected. So we thought that if we stayed up most the night then go to bed just long enough to let our bodies get good and asleep then wake back up, maybe it would get something going. In the end... we just ended up tired.

It was great to have the kids down. My folks brought them by for a few hours on Friday night before heading back to the hotel. Then after our sleep deprivation experiment on Saturday, they came back and we hung out in Tina's room for about 8 hours. We watched movies, played games, and just hung out. For the most part it was a good time, but we could tell that the time away is wearing on the kids. It was pretty difficult for them when it was time to say good bye.

Weekends are very quiet here, and even though our environment doesn't change, there is a subtle shift that just makes Saturdays and Sundays different from the rest of the week. We also decided that one way to know that you've been in the hospital too long is when you start noticing when the nurses get haircuts, when staff go on vacation and when they come back you're still here, and when your physician travels to two different continents in the same time period that you occupied the same 10 square feet. At any rate, after we got up this morning we settled in for another quiet day of reading, writing, TV, movies, and games when in walked Tina's brother and sister-in-law. We had no idea that they were coming down and it was a welcome surprise.

They hung out for a few hours and then went back to their hotel. They plan on stopping back in for a few hours tomorrow morning before heading back home to Grayling (7 hour trip). After they left, we plugged in a movie that they brought with them - it was the first TV we had watched all day, which was a great change.

This morning Tina and I were reading a devotional together that we were given by our good friends and I wanted to share some of what we read. It's a devotional that is written from the perspective of God talking, so when you read the pronoun "I" it's speaking of God.

"Understanding will never bring you peace. That's why I have instructed you to trust Me, not in your understanding. Human beings have a voracious appetite for trying to figure things out, in order to gain a sense of mastery over their lives. But the world presents you with an endless series of problems. As soon as you master one set, another pops up to challenge you. The relief you have anticipated is short-lived. Soon your mind is gearing up again: searching for understanding (mastery), instead of seeking Me (your Master)." - Sarah Young

As Tina and I contemplated this very appropriate devotional this morning, the concept that kept coming out to me was this idea that often I do think that understanding will bring peace, because it's in understanding that I think I can then exercise mastery over my life. If I could just understand why Tina has seizures, or understand why she's not having seizures when she's supposed to, then, armed with this understanding, I could master my life and finally have peace.

But the first line of this devotional just kind of comes up and grabs you by the throat; "Understanding will never bring you peace." Even if I could understand all the whys associated with Tina's seizures, in the end, it would not bring peace. Oh, maybe for a little while there would be a sense of peace, but as Sarah Young said in this devotional, this peace would be very short lived, because this world has no shortage of circumstances that we can't understand (untraceable paths).

This is precisely why God said in Proverbs 3:5-6 "Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight." I may not be able to trace out the path we're on but God promises that if I don't try to take mastery of my life through understanding, but simply give control of my life over to Him, he will make my paths straight.

I think of it like this. When I seek to be the master of my own life I grab the wheel and start moving my life according to how I understand it. I turn left when I think I should. I turn right when I think it's appropriate. I veer to the side when I think something bad might happen to me. However, in the end God tells me that if I will simply give control to him, he will make the road straight so I don't need to turn or veer. I simply need to daily walk in his presence and acknowledge that He's my master, and he promises that as I walk forward every day, my path will never turn. I just walk and walk and walk and I will never end up in the ditch, I will never hit a pot hole, I will never whack a deer.

Now don't get me wrong, I don't take this to mean that nothing bad will ever happen, I simply take it to mean that there will never be anything in my path that I need to cease trusting God and take control in order to avoid. Oh, there may be times when, according to my own understanding, everything in me is screaming to grab that wheel and take over, but I have learned that in the end I am far better off leaving the driving to the one who has made the car, and made the path, and made me, then to think that I could possibly understand well enough to make it on my own.

No. Understanding will not bring peace. Seeking understanding equals a grasp at mastery. Far better to trust my life to the Master - the Prince of Peace.

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.

3 Weeks and Counting

As of yesterday we have now been in the hospital for 3 weeks and other than a couple of trips from the EMU to the OR, Tina has occupied the same 15 square feet of space. We continue to wait and pray for a seizure that will move her into the next phase of this crazy adventure we're on.

We are looking forward to our kids coming and visiting today. My parents are going to drive down to Cleveland and spend a couple of nights here so that the kids can come and hang out. We are so looking forward to them being here.

Seeing the Forest From The Trees

We made it about 36 hours total with no sleep - this time I didn't take a nap at all. We decided to thrown in the towel at 10:30 last night, although I think Tina probably could have kept going. As it was she had a hard time falling asleep and didn't sleep well after she did. As of 2:00pm today there is still no sign of seizures.

We did sleep quite late (11:00am) and then listened to Louie's sermon from last week as we ate breakfast. It is so nice to remain connected with the body of Christ in Rockford even while in Cleveland. Louie's sermon was a great reminder to us that our individual stories are simply a part of the much larger story that God is telling throughout all of human history. We are simply trees planted in a much larger forest, and it is the forest that is significant not any particular tree within it.

I have been so humbled by how many people are reading this blog and how God is using it in their lives, but I want to make sure that it is not my tree that is seen but rather the forest that my tree helps make up. It may sound strange that I find it encouraging and comforting to recognize that I am not what is significant, rather that it is what I am a part of that is significant. Far too often I fall into the trap of wanting be the focus of my own life. I want to be significant, but it isn't until I recognize that it is only in being part of God's plan for my life that I find peace and encouragement. Trust me this is not natural for me. I tend to think much too highly of myself and my own significance, but when I am able to see that I have a small role to play in a story that has been going on for thousands of years it encourages my heart.

It is my hope that as you read this blog you would see the forest not the trees.

Stay Awhile...

We're going on 27 hours with no sleep and so far no seizures. The techs thought that maybe her EEG was showing some stuff last night but so far nothing.

The epileptologist just came in and informed us that we're going to continue to wait for more seizures. At this point they feel that the risk is low enough to allow for us to be able to wait for a seizure. On one hand this is good, because it means that our time has not been for naught, but on the other hand it is quite a blow, especially to Tina, to think that we're going to sit here indefinitely waiting for something that she has no control over.

It has been a long and exhausting couple of days, and Tina's emotions are running a bit thin. It is easy to feel like God has left us alone here, and that somehow he's made a mistake, but we have reminded ourselves of the promises he has made to us.

Philippians 1:6 "being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus."

We know that God isn't in the business of starting things into motion and then going off on vacation, forgetting about what he has started. No, we are supremely confident that God has started something good in Tina's life and that he is presently in the process of carrying it on to completion.

So how should we respond? As I pondered this very question over the past hour or so, two things came to mind. First, was what Jesus said when he was asked by a bunch of confused and hurting people how they should respond. "Jesus replied: Love the Lord your God with all your heart and with all your soul and with all your mind. This is the first and greatest commandment. And the second is like it: Love your neighbor as yourself."

The second thing that came to mind was, if I am to respond to this situation with love to God and love to others, how should that look. The Apostle Paul tells me how to love in situations like this in Romans 12. "Love must...be joyful in hope, patient in affliction, faithful in prayer." Wow, that's a tall order.

So it is my desire that I would be joyful in the hope that because God began a good work here that he will be faithful to complete it; that I would be patient in the midst of this affliction trusting to God's perfect timing that he is allowing only the affliction that is necessary in my life to help conform me into his image; and that I would be faithful in prayer as I invite the power of the Holy Spirit into this place and continue to do so even when it doesn't seem to be doing any good.

Please pray with us to these ends.

Sleep Deprivation

No seizures again today, so we once again are going to try the self-induced sleep deprivation. We went to bed about mid-night last night and slept fairly late into the morning in preparation for keeping ourselves up most, if not all, the night and then as late into tomorrow as possible. Who knows if this will help but we're going to give it a shot.

Thanks for your continued prayers.

All's Quiet

After such a difficult day on Friday, yesterday was very quiet. In fact the only thing of any interest that happened yesterday was they ended up removing one of Tina's depth electrodes. Friday night, as Tina and I were staying up trying to see if we could get some seizures going, we decided to play a rousing game of Skip-bo. While we were playing, Tina noticed that one of her depth electrode anchors was loose. The anchor is supposed to be screwed into her skull so that the electrodes don't move. I have to say that it really gave me the heeby-jeebies to see Tina wiggle that thing around knowing that it was buried in her brain.

Neurosurgery came up on Friday morning and took the electrode out... in her room... Yup, they just came in, took her dressing off her head, and pulled the wire out of her brain while she sat in her bed. They gave her a small sedative to help with the stitch they had to put in her scalp. Tina said that the only thing she could feel was the needle stitching her up. This stuff is just plain weird.

We stayed up again until 2:30am last night but still as of 9:00pm Sunday no seizure activity. At this point we're being told that all the doctors are going to confab on Tuesday and decide on the next step if Tina still hasn't had any more seizures. As it stands it sounds like there's basically three things that they could decide. First, they could decide that the risk of leaving the electrodes in Tina's brain has a low enough risk that they will simply wait longer hoping for another seizure. Second, they could decide to proceed with removing part of her brain based on the data that they got with her previous seizure, or they could decide to remove the electrodes and send us home without removing any of her brain.

It has been difficult these past few days as we wait. It has been more than a week since Tina has had any "natural" seizures and so her most recent set of electrodes that were put inside her brain a week ago have yet to record any seizures. There have been those moments when we wonder what God is up to. It seems that we sit here for days without accomplishing anything. This can become discouraging.

This morning as I was reading True Spirituality by Francis Schaeffer I read this; "If we are not careful, even though we say we are biblical Christians and supernaturalists, nevertheless the naturalism of our generation tends to come in upon us...It is perfectly possible for a Christian to be so infiltrated by twentieth-century thinking that he lives most of his life as though the supernatural were not there. Indeed, I would suggest that all of us do this to some extent."

As I read this it reminded me that I don't live in a world that is primarily natural - it is fundamentally supernatural. What I can see and observe around me is not all there is to reality. So where I may not think anything is being accomplished by our sitting here in Cleveland I have to remember that not all that is being accomplished here can be observed. Perhaps what God is accomplishing may not be what we think it is. It is so easy to focus on the natural world in an environment like this, but I have to remember that even the natural world (blood pressure readings, EEGs, video monitoring, seizure meds, etc.) exist to support all that God is accomplishing in the supernatural world.

Please pray that we would continue to walk this path with perseverance and that God's glory would be put on display even in the midst of our disappointment.