Saturday, January 30, 2010

Operation Haircut

I would have done this earlier, but it was a long day, plus I am still recovering. So this post will be more pictures than reading, the pictures tell a better story than I can.

My hair was an easy 13-14 inches long, I know it doesn't look like it, but it is super curly. And I know I do not look happy, but this picture was taken early this morning as I rushed to shower, get all the kids ready and help Sarah out the door to pick up another kids for pre-school.
This is Andre, he is our barber, the best one in the Big "O". He owns Red Hot Barber Shop; and had a balloon with "Get well soon Xander" ready for him, along with a card, when we came in. He later told us he was in shock when he heard what was going on, and told us he would be praying for him. He spoiled X the entire time, offering him Ho-Ho's, cupcakes, and candy.

Andre uses an acual "Old School" straight razor to line us up, X was cool with it, but did tell me he was a little nervous. I took a picture of his coolness, then asked him to show me his nervous look.

Andre finished him up, and X, like always just stared at himself with a grin on his face; he loves getting haircuts. We then took a quick "tough guy" photo. By the way Thanks J for hanging with us, and taking photos.

It was now my turn, and I was NERVOUS! I know it's dumb, but over 2 1/2 years went into making this hair. There was a lot of talk at the shop about me actually doing this. I think they all would have talked me out of it, if I hadn't told them why I was cutting it.

Andre made sure that X helped him cut my hair, X was ear to ear smiles as he helped. He giggled and said "I got my dads hair", as he held up the first of 6 braids.

I could literally feel my head becoming lighter, the first picture shows me after all the braids had just been cut off. The second is just before my straight razor line-up.

The boys all cleaned up, looking fresh. Andre and X. Andre thanks a lot, you made it an even more special day.

Me and my baby boy are now ready for the Mayo Clinic. I am very proud of him because he always takes on challenges head on. I am donating my bag of hair to Wigs for Kids, I hope a kid out there will benefit from our adventure.

It is crunch time for us here, so keep up the praying. We have become very good at handling stress, that is the upside to all of this craziness in our lives. I hope you enjoyed our adventure, the next post will be about the party at pre-school.

Wednesday, January 27, 2010

Mayo the 3rd time

Most of our family and friends already know a lot about this trip, because of our facebook page, emails and multi-texts. If you are new to this site, and want more info. feel free to contact us, and we are more than willing to share our experience with you. Since Xander's surgery is less than 2 weeks away, you will have to excuse this post because for the most part I am going to stick to the facts.

Monday, Dec. 16th to Friday, Dec 20st we had our week of monitoring. X was given an EEG cap and was monitored 24 hours a day, this included audio and visual recordings as well. We were actually warned by the nurses several times not to do anything we didn't want the world to see. I must have given the nurse a confusing look, because she explained that everything in the room was being monitored and they have had numerous teenage boys disregarding the warning. I laughed out loud at that, my innocent wife gasped.

The monitoring continued until Thurs., as well as blood draws, medicine changing (with doses), and vital checking. Wednesday came and X started getting really annoyed about things, rightfully so. He had been taken into different rooms for more testing, put under twice, and confined to a bed. Now I was confined to a hospital bed for two days due to a staph infection, and had to stay in the room for 3 days, I went nuts. A 5 year old, with about 168% more energy than me, only allowed to leave for more cruddy test, that was awful for all involved. We tried to keep him entertained by making everything into a game, but he soon became hip to what was going on.

It was during this time that I confronted a 3rd year resident about his medicine, and what was happening. Of all the doctors (and medical personnel in general) we had contact with; she was the only one who we had a problem with. She was smart, but her bedside was not at the level we had come to appreciate. Sarah and I do not think she will make it there as a doctor, she is not of the same mold as the doctors we had, even nurses talked about it. Anyway, after I confronted her, she avoided me like the plague. I ended up trying to talk out our differences; it didn't feel like she got it.

Thursday was the best for X, he was allowed to take off his wrapping, and they removed his EEG electrodes. They do it with an acetone mix, so the smell is horrific, and since X has super sensitive skin, and they were rubbing so hard, he had a bunch of scabs a few hours later. Later on that night there was a Christmas party where X won a huge TAZ stuffed animal (He named it I.V.). Santa came too, called X up as the first to receive his gift; unfortunately X had a seizure and fell right on his head. We had to go back to the room and be checked over; X was bummed he didn't get to talk to Santa. About an hour later X heard a knock and a "Ho, Ho, Ho", Santa had made a special trip to talk to X and take a picture. All I could do was thank everyone for being so thoughtful, and take a picture; X was ear to ear smiles.

We were able to go home that next night after a long discussion with two neurologists. The ride home was fun, minus X starting to complain of abdominal pain. We would later talk about this and realize he was pooping a minimal amount, this would cost us two ER visits, and much frustration.

This post is not as detailed as it could be, and if you want more info. on the week of testing let me know. We just have a lot to do before we leave this next week, and I really am not in the mood to go into all the details today.

Upcoming Events

The first item on the agenda is my friend Erica (AKA: NOT the boss of me) is coming to visit this weekend. Great news for all of us since we get to see her sweet baby Ella, and in case you didn't know, my boys LOVE baby girls. The twins are like old faithful dogs; they will retrieve toys of their own and literally place them at the feet of baby girls. Xander will coo at the baby, and direct the Twinkies on baby boundaries, all the while smothering the baby. I am going to admit that I am pretty excited to Ella too; I hear she has a knack for making animal noises, sticking fingers and metal objects in sockets, and attacking helpless dogs. I think she will fit in here just fine, I am glad to have Erica here too, as long as she doesn't try to boss me.

The second item is haircuts; yup I said it, haircuts. I have not cut my hair in over 2 1/2 years, and on Friday the 29th of Jan. 2010 I am making the move. I think the last time scissors touched my hair was Aug. 2nd 2007; my hair is now down to my mid-back, and I love it. However, since X is going to have to shave his head for surgery I made him an offer. I told him if you cut your hair, I will shave all my hair off. His smile was ear to ear and he agreed. For the last year or so he has been talking about the need to cut my "Girl Hair", and I always tell him "No way!". He is totally excited to be in charge of that decision, and I am going to make sure our barber allows him to make the first few cuts.

I will make sure that I take pictures (Before and After) and I will post them on Fri or Sat. To be very honest I am a bit nervous about this, I know it's only hair, but I may never get another chance to grow it out again. The fact that X is so excited about this, and I have an opportunity to show him that I am willing to help comfort him at all cost, wipes those nerves away. I have decided to donate my hair to wigs for kids ( ) since they allow kids to receive free wigs instead of charging people like Locks of Love (My original choice). There were a few other free places as well, but mostly for cancer patients; I have no problem with cancer patients, I just figured that since my son has to deal with this I might as well donate to a child centered organization.

Stay tuned for the hair cutting post. Also just a side note, the time between posts may more like a day or two as the time to go to the Mayo draws near. We just have a lot of stuff to finish up before we go.

Tuesday, January 26, 2010

Living in Mayberry

When someone asks me "Where do you live?" I reply Dundee. That is often followed by "Oh my gosh, how do you like living there?" I then explain that living there is a lot like living in Mayberry. Now some of you may have never watched the re-runs, or know what I am talking about but there once was a show called "The Andy Griffith Show" (There may even be some of you who watched it when it first came out). For those of you who have never seen this show, I will explain it to you. The show had Andy Griffith as Sheriff Andy, Don Knots as his side-kick deputy Barnie Fife, Aunt Bee, and his son Opie (Played by Ron Howard). The show was mostly based on The Sheriff solving the cities problems, or the city rallying behind a good cause and showing teamwork can prevail over anything.

That being said, it is Official, I LIVE IN MAYBERRY. Here's the scoop; our block throws parties all the time, sometimes for good reasons, other times because it's been snowing too long so lets party. So it was no big deal that there were two parties scheduled for January. The second party was scheduled for Sunday the 25th., and I was just getting over my Flu. Sarah left us all sleeping and went to help our neighbor/friend Andrea prepare for the party. I fall asleep as she is walking out the door only to wake up to her almost in tears explaining to me what is really happening. Here's how our conversation went S: Oh my gosh Dan, do you know what's going on? D:No S:They are not really having an open house party, they are having a fundraiser for us. They are having a block fundraiser for us! D: Really? That's awesome (Still trying to wake up) Should I get up and go? S: Ahh No, but isn't that incredible, I can't believe it, that is totally what we need right now. D: Yeah, that is, I should go. S: No, your ok, go back to bed.

At that point I get X up, because he is not sleeping anyway, dress him and send him over. I sleep for about an hour more, sweat my flu out, and Sarah comes over again this time with a box of checks. I get up feeling 100 times better and get ready as I walk out my door and over to the party. I say my thanks, and am completely overwhelmed by the support.

Here's what I have to say about my neighborhood. They didn't have to do this, and yet they did. Andrea thought of the idea, gathered all the neighbors and the ball started rolling. Due to their love and support another street became involved as well. The block turned to two blocks which then began including families, and extended friends. All of this for our Xander, and by our I mean Dundee's Xander. It brings an entire new meaning to the African Proverb "It takes a Village to raise a child". I have never really seen that in a literal translation, but on Jan. 25th 2010 I was blessed enough to do so. It wasn't so much the money donated that was heart wrenching but it was the genuine, unadulterated love that was in the air. I looked around the room as I gave my thanks and started to get choked up, I could see people were really concerned. Eyes don't lie, these people, our neighbors and friends all showed they were concerned not only with their actions but also with their eyes.

Guys, they had a raffle, silent auction, food, drinks, beer, everything. They had good things up for auction too, like a Wii, and a year membership to a gym. The thing that gets me is how everyone came together, they acted more like Christ, then most Christians do. And I say that not with ill will or bitterness towards the church, but to wake the church up. These men and women are loving people the way every Christian in the world should be. I will step off my box, and continue with the fundraiser.

I think I will forever be a slave to my snow blower, and any other back breaking labor I can offer to all of those at that fundraiser. I can usually talk up a storm, but all I could say was thanks. I hope I didn't have any residual flu illness on me and infected anyone, but I had to see for myself who was there. I hope no one took my silence as rudeness, but I was honestly in a state of shock. When I walked in and saw everyone there, I knew I couldn't talk, if I would have I would have started crying. Besides that I have a reputation to uphold in this neighborhood, and crying would have only made me look weaker and Fred that much tougher. (Just kidding Fred, your tough).

To sum this all up, if your looking for an incredible historic neighborhood, with neighbors that actually care, move here. It may say Dundee on the for sale sign, but when you move in, it feels like Mayberry.

PS if anyone has any pictures from that party e-mail me them, and I will post them on this.

Saturday, January 23, 2010

Preparing and waiting, I am too impatient for that

As of now we are still trying to figure out the details of our next trip. Who, if anyone can watch the twins (I am super picky on who watches them) until my parents can bring them up to us. If my parents can bring them up to us. We want to be able to totally focus on X, but we realize that we may have to take them up too. We are trying to get all of our bills in order so that none of them are late. Looking for someone to stop by the house daily to make sure it hasn’t been broken into, and makes it look like someone is home. Working things out with insurance, as well as work, and the days off I am going to need. Getting our taxes completed, and figuring out why I am getting these crazy letters from the State. And now most recently, getting over this flu bug we all have. All of this preparing and still waiting does not mix well with me. I am way too impatient.

Our life seems as if it were on fast forward, as of a week ago it was creeping by, now I am looking for the pause button. My sweet wife, who is always a rock we can lean on, is having a really hard time. I am praying for her that she works through this, but I can only imagine what it is like to be a mother.

If you were blessed, like me, to have an incredible Mother, the very word will invoke deep emotions. I associate a mother as someone who is always there, no matter what; someone that will make your pain go away with sweet kisses, or a bowl of ice cream. Someone who will "feel" it with you, and hold you, not saying a word but allow you to feel secure in her arms.

That being said I can only imagine how her heart aches. We talk all the time, and have better communication then we ever have had, but I cannot know how her heart feels. God is the only one who knows. Other mothers who have gone through a similar event can relate, as I am sure every mother "feels" differently, but only God can know. Please pray for Sarah this week that she works through this tough time.

The last thing for tonight was brought to my attention from a good long time friend. He stated that he had realized that he was keeping updated on this site, but had failed to contact us. He shed some light on something that Sarah and I have been talking about, the feeling of loneliness. We get e-mails like crazy, but recently our phones have quieted, and our visitors have all but become extinct. My friend said this may be due in part to the same reason as him, keeping up, and forgetting to call. He knew what was going on and was praying for us, but calling simply slipped his mind. If that is the case with anyone else, feel free to call.

Let me make this very clear, at first we needed our space, now we need our family and friends. This is not a small operation, or even a small event. Now we, having faith in Christ, believe that it will all work out well, but it is very comforting knowing that there is a familiar voice on the other end telling you the same thing. Or as my friend put it, not even talking about Xander and just talking about other things. I am going to tell you we need it, and welcome it. We may not always be able to talk, but I am sure there will be a return call, or another day you can stop by.

We love you all and still feel the prayers of all of you. I will tell you again we can feel when we are being prayed for, and when we are not. I truly believe that you all have created a prayer covering over us that are powerful, healing, and peaceful and helping us keep our sanity. Thank-you -----------The TORRES Family

Xander and his buddy Lil Johnny

Zane, Grandpa, Sarah, Grandma, Nana Judy, Grandpa George and Israel

Thursday, January 21, 2010

Meeting with the NeuroSurgeon

If this post doesn't make sense it's because I worked 12 hours yesterday and I am going on 4 hours of sleep.

The day after the cognitive test were completed, we met with X's Neuro-Surgeon Dr. Wetjen. Here's the crazy/funny part. We were told by the Neuro-psychologist that X and Dr. Wetjen looked very much like they could be brothers, we were like, sure they do. After waiting in the room for about 5 minutes the Dr. came in and we were in a state of shock, they look like they could be father and son. They look so much alike that Sarah couldn't help herself and even told him what we had heard. He laughed it off and began the appointment; I couldn't help but continue to stare at the both of them, it was so uncanny.

The Dr. explained so much about what was going to happen, and the precautions that would be taken. He said the main thing was we were making the right decision, those words meant a lot to us. A lot of the information that he gave us is in the post prior to this, but I will give you a bit more.

He said that the grid was going to cover the left side of his brain. He stated that this was going to be about a 4 hour operation, and that the part of the skull that was cut through was not going to be reattached until after the 2nd operation. Once the grid is in place it would immediately begin to record seizures. One of many interesting facts he told us was sometimes after the brain is exposed it does not have seizure, the reason is still unknown. Some kids have gone as long as weeks without having a seizure.

Once the grid is in place and they have located the spot causing the seizures they would send signals to the electrodes to see if that part of the brain is responsible for a major function (ex. arm, leg, hand movement, speech, sight, ECT.) This way X does not lose one ability for another, it's a bit overwhelming. The Dr. was very kind, and sympathetic during this time, he advised us that X would lead a better life with this surgery, than if we ignored it. He said that we were choosing the lesser of the two evils in surgery, and that his inability to use his right hand/arm was not going to be worsened by the surgery since his brain was already abnormal in that area. He told us all about how resilient children are, and how X would learn to adapt to all of this. It all sounds good, but honestly it doesn't feel good.

A quick side note, a few months ago I told Sarah that I was never going to choose brain surgery because it was not a choice I wanted to make. I didn't want my son being upset that I was responsible for his pain and suffering due to the choice I made. I didn't want him to go to school and listen to the mean kids that may make fun of him, tease, or make him feel insecure. I didn't want girls to not think he was cute as he grew older. I told her that no matter what I would wait until he was old enough to make that decision for himself because it was not my brain. I now eat my words, I am forced to make this decision for him; I am fervently praying that I am making the right decision for my son.

So after he tells us all of this, and gives us the percentages (listed in the previous post) Sarah gets up and leaves. Now I knew she was feeling sick to her stomach all morning, but that was the extent of it to this point. I continue to talk to the Dr. and he said that he wanted to do surgery as soon as possible, then after looking at his appointment books, he said I have Feb. 3rd available. I said OK. He told me that the 2nd surgery would go off a few days later as long as everything went accordingly. I had a few more questions, and he answered them all. One question was how common is it to misplace the grid, having to reapply it later; we have heard of this happening a few times and were concerned with it since it could lead to more complications. He then very confidently explained that he does this type of surgery a lot, and that the Mayo does this surgery a lot. It was not an uncommon surgery for him to perform, and "I will not have to realign the electrodes, I will get them right the first time". His confidence was reassuring, and I knew that he was not just saying this, but knew it. Our conversation wrapped up and X and I waited in the waiting room for Sarah.

We waited, waited, waited and waited, finally she came out but it was not good. She was caring a plastic bag with her jacket in it, and had this poor puppy dog look on her face. She explained that she had been running to the bathroom, only to throw up in her mouth feet from the bathroom door. The vomit continued and erupted from her mouth all over the floor. She courageously attempted to clean it before anyone noticed, but was unable to. Our Dr.'s nurse saw her and helped her out, calling maintenance saying "Someone vomited on the floor". She was so embarrassed, and we left quickly.

We met with X's neurologist a few hours later, and it was more stats, and a repeat explanation of what was going to happen. It was at this point that she asked us if we had let X know what was going to happen; we told her "How do you tell a 5 year old that he is going to have brain surgery?" That is a question we had asked every doctor, every doctor said to be honest, but not to mention cutting into his brain. We still were asking for help, and our Neurologist of all people helped us.

She had X sit on Sarah's lap and explained to him about the meds. not working and that everyone wants to help him get better. She explained to him that he was going to have an operation, and how he was going to feel. This lasted about 10 minutes, he even asked a few questions; his main concern, besides getting "Pokey Shots", was "Is this going to hurt?” That question struck a deep, deep cord in my heart, the fact that my baby X had to ask that hurt.

For about 7 years I have been studying body language, and am able to read it. I have to do it for my job and in life just by habit, and I can tell things by reading body language that most people don't pick up. While we were in that room I was doing just that. I watched as my son started breathing heavier, took long swallows, and avoided eye contact at times. I noticed he looked up when talking about the possibilities of pain, in essence disassociating himself from it. I watched him swallow hard and roll his eyes at the mention of having a headache upon waking up. I could also just sense he was not happy about the whole thing, I started getting teary eyed again (I know big shocker huh), took a few deep breaths and kissed him on his neck, whispering that I loved him.

We left the appointment a bit overwhelmed, we left the Mayo overwhelmed. When this whole surgery thing came to a head we were under the impression that we would have a month or more to prepare. We talked about wanting it sooner than later, but just thought it would be later. Now we only have 15 days to get everything in order before we have one of the biggest weeks of our lives, so far. We are on the verge of one of the biggest decisions that we have ever had to make, and have less than a month to get our house in order. If you are reading this and it is not the 3rd of Feb. 2010, please, please pray that the stress would be minimal, that we would have clear heads, and that we would be able to get our home in order prior to the surgery. We do not want to neglect our twins, and understand that we have to go through this as a family. Just because they are little, does not mean they are clueless, they know something is up. They miss their Xander when he's gone, and vice versa. Please pray. I will keep you all updated, and thanks for your prayer, God is listening.

Wednesday, January 20, 2010

To all my Prayer Warriors out there

So after talking to the surgeon we need a few things to fall into place in order for these to be successful surgeries. I will list them in order.

1) They are going to place the Grid on his entire left side of his brain, during this they will be trying to locate exactly where the seizures are originating. The problem lies in the fact that sometimes kids stop having seizures for a period of time due to the brain being exposed. They have no answers as to why, but they said they have waited as long as a few weeks, before seizures began. That being said we WANT him to have seizures during this time so they can locate them.

2) One they locate the area it needs to show one localized area instead of numerous, one is better than a ton. One they can operate, a ton usually means they can't, so X will have a huge scar for no reason.

3) After the seizure is located they are going to test that area to make sure it will not have any permanent damage (ex. inability to use arm, leg, eye, speech). So that is another thing to pray for. No one wants X to lose one thing only to gain another.

4) After that we are left with the final surgery, and we just ask that you would pray that the Lord would guide the surgeons (Dr. Wetjen) hands, and for a fast/amazing recovery.

The stats are 86% are affected in some way by the surgery. 14% are not affected one bit. Out of that 86%, about 65% never suffer from another seizure, and the other 35% have fewer seizures. There is a less than 5% risk in this first surgery, and the main concerns afterward will be bleeding, and clots. The blood clots can cause subdermal hematomas, and strokes. Very serious things, but we are confident that God has already paved the way.

I know some are still asking about the weakness in his right hand. They are not sure if it will ever recover, I am depending on my faith that it will. If you want more on that let me know, I can write another note/post.

Tuesday, January 19, 2010

Xander's Cognitive test results

This is Xander doing his best thinking man impersonation

Yesterday Xander had his cognitive test completed. Good news and bad news. The test were basically broken down into three categories and are testing his cognitive ability (here's a link if you want to know more ). He emphasized to us that X was too young for an IQ test, and the earliest you can do an IQ test is at 6 1/2. This is a breakdown of the tests; 1)Verbal - Above average 2)Nonverbal - Average 3)SPATIAL - Below Average. The Dr. said that the kicker was when X was firing on all cylinders he was at a 91% percentile with Spatial, it was the fact that he was having "glitches" in his thinking that brought him below average. The test are timed, and if you take too long you score low. The Dr. said that the fact Xander was still average on one and above average on the other was a very good sign, considering all the seizures he has. He also said that he cannot say for sure that X scored below average due to his seizures messing with his thinking, or if it was the medication.

Something that made us feel good was when the Dr. said "The fact that we were able to perform all the test that we did on Xander was remarkable" He went on to tell us X finished more test than almost all 5 year olds, and some 10 year olds. He said that when X is on cruise control he can fly through the test, it was just these glitches that are hindering him. He also said that X's memory was spot on, and that was impressive due to the amount of seizures he has. Simply put, your brain is a very complex organ with complex wiring and electrical exchanges, the seizures are like huge electrical storms, you mix the two and there are going to be some real issues. X has been blessed to stay above the average on many things, we are just praying that he stays that way. He's always been sharp, and like every good parent we want him to stay that way.

Now while X was taking his test earlier in the day we met with the DR. and had to answer a lot of questions, some personal, other "normal". We thought nothing of this until our second appointment with him. He said something that again proves that God works all things for the good of those who love him, and that has prepared us for this. He said "I just want to let you know that it is proven that the better a home life a child has, the better and quicker the recovery. It's even better when both parents live together, and have a good relationship, Xander has that advantage, and he should do fine.". I was a bit shocked that a medical doctor would even put that out there, but it made me feel loved.

The fact that we listened to God, years ago, and have been working diligently to have a healthy marriage, proves to me, and hopefully others out there, that Gods ways and thoughts are perfect. He knew it back then, he knew it was essential for X's health and well being that Sarah and I walk the difficult path of repairing our marriage. He knew that little X needed us to be healthy, our marriage would not be whole or even alive if it were not for us listening to God. The crazy part is, we thought it was for us, and our family, 3 years ago we had no idea it would or could affect X so much.

We are about to meet with his Neurologist as I type, I will post again about todays appointments.

Monday, January 18, 2010

The guy with the red afro

Seriously I never knew that staying at a clowns house would be so awesome. We totally love it. Everything about the place is great, and everyone here, staff and residents are all so nice. We were told that some families have stayed here for more than a year. They have these journals in your room that you can write your story in to share with the next resident, I read some and they really open your eyes to life. There is a boy around 12 years of age who had his leg amputated just before Christmas due to Cancer. When we came here last I remembered seeing him. I wanted to hug him, and say something inspiring to him (What I have no idea, I just wanted to), but I was afraid if I did that I may end up being kicked out and eating cinnemon rolls for breakfast asking the guards for another orange juice.

I'll give you a quick tour before I call it a night.

This is our room, we have a queen size, sleep by numbers bed (We were told not to be excited about it since it's the cheapest one possible) and a trundle bed. We have our own bathroom, closet, dresser, TV, DVD player, and cleaning supplies.

This is our Kitchen, we share it with everyone on the second floor. There are 6 huge Fridges, and numerous kitchen appliances. At one point I walked in as 5 different families were cooking, and there was still plenty of room. There are at least three of these kitchens, that I am aware of. The nice thing about this is you can buy your own food, cook and eat it. All they ask is to clean up after yourself. I noticed that the Amish staying here clean extra, I have caught them numerous times cleaning different areas. I am not sure if they just like really clean places, think everyone else is filthy, or feel compelled to help more and show it by cleaning. There is also open food for anyone to eat, and a huge Ice Cream bin.

This is one of the 6 play areas that I have found. This is actually a game room, and it is so much fun. I actually sat and played pinball with X for about 20 minutes non-stop. We then jumped on an arcade game, then the playstation 2. There are 3 playstations and a Wii just in this room. Not to mention all the craft stuff you can do, Sarah and the twins made a snowman, and a penguin.

Even the ceiling are cool, the twins kept looking up and finding things like this

Dinner was fun since we all were able to pick our own desserts, and they were free! Dippin Dots for FREE!!! Whenever we visit a new city I am going to try to stay at a RMH just for the free Dippin Dots. This is all of us enjoying dessert, Israel chose to go with a Icee instead.

I had to get a decent post like this in because Sarah was telling me that our site was boring and I needed more pictures. I am sure if she reads this, and looks at the photos she'll tell me to erase it, lets see how long that takes.

Life after Mayo the 2nd time to Mayo the 3rd time

Life after Mayo the 2nd time to Mayo the 3rd time was interesting to say the least. At the time we had Xander in soccer and baseball, he actually did well in both but a bit better in baseball. He was going to pre-school 5 days a week, and totally soaking it up. The seizures had not changed, but we thought that in no time soon would we have this figured out.

Well then the seizures started becoming stronger, more frequent, and occurring at odd times. Xander still had is "Aura" that would let him know before he had one, and usually give him enough time to advise one of us, but the time was a bit shorter. He wasn't recovering as fast from the seizures, and his right hand started to spiral downward fast.

For example, he would usually not have them during the day, and now it was becoming more commonplace to see that happen. The poor boy even had one during one of his soccer games. He was in the pre-game running around with everyone, when all of the sudden he sprinted to us, from about 30 ft. away, and had a pretty bad seizure. Sarah managed to break his fall, as he didn't reach us; it lasted about 30 seconds and it was heartbreaking. Everyone was staring, and I don't blame them, I would have too and I have a wife who stares all the time, but it's hard to take when it's your kid. Being the trooper he is, he shook it off, and went back to playing. Parents came up to us concerned, and I am sure there was one or two just being nosy, but oh well.

It was during Sep.-Dec. that he started falling and hitting his head a lot more. That really didn't get any worse until we called about how bad his seizures were getting, and they put him on Depakote. Once again we had to deal with his mood swings, and his attempts to adjust to the affects the medication had on his little body. It was hard for us, and I know it must have been even harder for our X, after all it was he who had to actually go through it. Depakote had the same results as all the other drugs, it worked well for about a week, and then it was back to craziness. The worst part about Depakote was the fact that it stole his "Aura". The next thing we knew he was falling all the time and cracking his melon, leaving hematomas the size of tangelos.

Now Xander knew about Hematomas, and would talk about them, but now our twins, who could better understand things were talking about hematomas. You know your son is falling and hitting his head way too much when 2 1/2 year olds are saying "My Tomie hurts" everytime they bump their heads. It was because of this, and the fact that Xanders head was starting to look like a golf course, that we finally got him a seizure helmet. It's not really a certified seizure helmet, Sarah made it much more fun for him by getting him a Boxing (sparring) helmet. He loves it, and has even worn it to preschool.

We had X on very high levels of Depakote, tegratol, and carbomezipine, all at the same time, and none with any visible results. He was falling all the time, very emotional, and just not himself. He looked like he was high all the time, we were not the only one to notice this as friends family and pre-school teachers all mentioned this. We could no longer stand it and called the Mayo again. After playing phone tag for the better part of a week we finally made contact. We were told that they would look over all of his files again, and give us another call.

The next phone conversation we had was intense, and yet had Gods hand all over it. Dec. 9th 2009, I was working and so happened to stop by the house to pick something up I had forgotten. I used the restroom, and the phone rang, Sarah answered and I could tell be the tone in her voice that it was serious. I finished and walked up to her, she put it on speaker and I could hear Dr. Patterson explaining that there was concern over his condition worsening. He also explained all the possible different things he could have, to his credit his tone was perfect and somewhat comforting, even though his news was not. He then told us that we could guess all day long but it was time that X was monitored for a period of time. He explained how serious the diagnosis could be and the possibility of Rasmussen syndrome. He then explained what Rasmussen syndrome was. We agreed to the monitoring and he advised that he would call and schedule the appointment, he also stated that due to the seriousness of his condition X would now be seen by different doctors.

Here is a good link to what Rasmussen syndrome is--

We hung up, and Sarah cried while I forced tears back. I still had to go back to work and let them know I was going to need the rest of the day off, I couldn't go in there all swollen eyed, and stuffy. I let my co-workers know I was taking the rest of the day off, got in my truck and cried like a baby. I begged and pleaded with God not to let this happen to my baby. In the middle of all of this I felt as if God said "Call Edwin (My cousin)" I was like WHAT? I did, and that was what I needed. He prayed with me, and I felt the peace of God on me as I walked into my house.

The next day Mayo called and we would have our appoint for that next Mon, the 16th. The next few days were tough on us as we tried to process the different things X might be diagnosed with. We also had to pack and make plans to go. Lucky for us, my parents and sister live close by and offered to watch our boys, along with other friends like Mindi and Donnie who stopped by to check on them. We were able to go up to the Mayo without the twins, making it easier for us to totally focus on X, and all the information that would be thrown at us.

I will have only one more historical post, and that one will entail the week of monitoring. I will finish this last trips appointments as well, then I will finally be caught up. If you have a child with Epilepsy and would like to contact us feel free to do so. There is so much more detail we could go into, but i am just trying to cover the basics and cover the history, as many know as far as detail, I could talk/type for hours, but it would get boring for other readers.

Random thoughts while waiting for X

Honestly, the Mayo Clinic is simply put, Amazing. I try to be aware of the spiritual realm of things and I feel like the air is filled with healing. I dunno, maybe I am crazy or maybe the lack of sleep has affected my sanity. I started thinking that while I was sitting in the cafe, watching all the people. I watched two Doctors, or Med. students reviewing books, and talking about something medical, waaayy beyond my comprehension. I watched as countless people passed by, some smiling, some with very sad eyes, and others with more of a blank stare. You still had your people who went on their way trying not to make eye contact with people, and those who went out of their way to say hi to everyone.

While I am people watching I still have that feeling of healing, and of hope; maybe I am feeling that way because that is what I need right now, and God is providing, or maybe I am right and that "healing" is in the air. Either way, I think that it is interesting. I have read books, and heard of stories where Angels are posted up in the corners of the room watching people intently as they go about their day. How they are doing Gods will and keeping us safe from evilI can't help wonder if that is happening here, assuming that is fact, not fiction. I actually looked up at the corners trying to imagine them there, I am sure they are laughing at me as I try to "see" them.

Xander is in his test right now, and we met with the Neuro-Psychologist earlier this morning. They asked a lot of questions pertaining to how he does with things, like learning, numbers communication, ect. We did feel some comfort in our decision to opt for surgery, as the Neuro-Psychologist told us that Dr. Wejten has international respect in the Neuro field, and that if his child was ever in need of surgery due to seizures, he would want him to perform the surgery.

We left our twinkies with Travis' mom early this morning, as we left the house X said "I like this house dad, does she have a husband?" I said yeah she does, and everyone who comes here likes this house. We are really lucky to have the Eckersons here, once again I feel like that is just another way that God was preparing us for this time in our lives.

I mean God, being all knowing, knew that it would help us having someone we know here in Rochester, and so he arranged a meeting with the Eckersons and us. That was over 10 years ago and now we are realizing how his will is perfect. OK, I could go on and on, I have a million thoughts in this ginormous head of mine, but I will post more tonight.

Sunday, January 17, 2010

There's a race in my mind

There's a race going on in my mind right now as I type, and my sleep is losing. Interestingly enough I am wide awake right now; I was able to get about a 20 minute nap in before Sarah came in and woke me up (unintentionally of course). I have been up ever since. I tried going to sleep, even tried the sheep counting thing. My head is racing with thoughts, so much so that I finally gave up and started thinking. I figured that's what it wants to do anyway, so why fight it.

I ended up switching spots with Sarah and laying with X for about 20 minutes, before I tried turning on the TV to drown out my thoughts. The only thing I ended up doing was waking up the twins, and they let me know they were not happy about it. So I laid there for about 5 minutes more and decided to let you in on my thoughts.

To be honest I have yet to worry about this surgery, that is until tonight. I am not sure it is so much worry, as it is that I am "feeling it" (A Mike Donahue phrase). And boy am I ever feeling it tonight, I laid next to X and whispered to him "I wish you'd get better", and "I am sorry and I love you" tears rolling down my cheek, and a lump the size of Volkswagen in my throat.

*Mike Donahue was once a youth pastor at the church I attended for about 6 years. I really didn't care for him much, and told him so. I ended up asking his cousin (Sarah) to marry me, so then I had to like him. He has been there in my darkest of times, and proved to be an incredible friend*

For some reason while I was laying there next to my sleeping son I could hear Mike telling me "Ya gotta feel it before you can fix it". Now don't get me wrong I don't worship Mike, I know it was the Holy Spirit talking to me, but he was using words Mike had told me numerous times. I am not much of a tears kinda guy, as a matter of fact I told X about 8 months ago it was OK to cry, and that Daddy cries sometimes. He looked at me like I had 8 eyes, and an elephant nose. I said "You've seen me cry right?" With a bit of confusion and awkwardness he replied "No". I looked at Sarah and she said "I don't think you've ever cried in front of him" I was astonished, and ashamed.

I partly blame my job on that, and me trying to be "The MAN of the House". Somewhere for some reason I don't think I ever cried in front of my boys. I think the only person I cried in front more than once in a year was my marriage counselor. It was on that day I asked God to help me with that. I can remember the handful of times my Dad cried in front of me, and it was shocking for me to see the man I looked up to crying. I knew it was OK to cry, and yet failed to SHOW my boys that.

Well God listened and was more than faithful, it was like two days later when I bawled my eyes out because of his seizures. I cried harder than I had in years, so much so I becam all swollen eyed, and I needed to drink water for fear of dehydrating. I have cried more these 6 months, than I have in the last 10 years, seriously. It helps to feel it before I attempt to fix it; it helps just to feel it. So tonight I am feeling it. I am feeling it deep into the core of my father heart. I always say that a mothers love for her child is incomparable, I hold to that, but a fathers heart to keep his child safe is the same way. If I could take my sons place I would do it with no hesitation, I would do it even if it meant that I would have to take it and multiply it by infinity. The way I see it, I have lived 30 great years, he has only lived 4 really, since that is when it started. He could spend the next 80+ in peace, and I would finish my life fulfilled. Knowing that he could didn't have to go through the pain that he is about to go through, and watching him live life to the fullest.

Please do not think for one moment that I do not think he will have a "normal" life, on the contrary, I KNOW he will. I will never treat him like he is disabled, or else he will be. I just want to keep him safe. Sometimes after Sarah shows me a picture of him when he was like 2, after I am alone, I cry. This may sound petty, but I look at how perfect his head is, and his sweet innocent face, and his intoxicating smile, and I wish it was still like that. I say it sounds petty because I am talking about the physical, I know his spirit will always be a joyful one, that's who God made him.

Man, I can tell I am tired cause I can barely get through this due to my own tears, but I just wish this would all go away, that God would just touch him. What I would give for that. I hold onto that, a miracle, but I am also aware that no matter what happens "I CAN do ALL things through Christ who strengthens me", and so can my family for the same reason.

I told Sarah to write a quick post on what happened a few days ago. X has been praying for sick people, kids in particular. Every time we drive by a hospital, cruiser, fire truck, or ambulance he starts to pray. It really is a cool story, if she doesn't post it soon, I will get the details and do it myself.

Saturday, January 16, 2010

No Sleep, 3 boys, a Van, and 6 hrs........NOT a good combination

I got about 3 hours of sleep, Sarah got less, the boys ended up with about 9. The ride to the Mayo Clinic started at 5, plans changed to 5:30. The Fog was thick enough you could only see about 20-30 feet in front of you for about 2 hours, no Joke or exaggeration. When the boys finally woke up around 8, they were not happy, they like to cuddle Mommy or Daddy when they wake up.

Everyone had a short fuse, even with everyone trying really hard not to. We did well for the most part, only a few quick snips at each other. But as everyone knows, during times of stress those few times are too many. They never went long, I think because we all knew everyone was at their breaking point, but I cannot wait for tomorrow.

We all do better with sleep, and tomorrow we need to be on our A-game to talk to the doctors. Our first appointment is at 7:45am. Before that happens we need to get ready to go, eat breakfast, and drop the boys off at the Eckersons (Who have offered their child-care services to us).

That being said, 6am is right around the corner, I'll fill you in tomorrow. By the way The Ronald McDonald house is AMAZING. More on that too.

By the way this may have yesterdays date on it, that's because I started typing another one, and ended up erasing it and typing this one. I know someone is going to look at that and think I can predict the future. I am not able to predict the future....yet.

Mayo here we come, again

So after our first and successful trip to Mayo, we started feeling better about everything. The medicine at first seemed to work, the frequency lessened, and then about a week later it seemed as if the floodgates had opened. Xander used to tell us that he "felt" the "shakes/wiggles", but they never affected him that we could see, after about a week on meds. we could see.

We called the Mayo and they recommended upping the dosage since it was very low. So this is how it went..... X started taking Teg. on the 2nd of April, 1/2 a pill 2 times a day. By June he was taking 1 1/2 Teg. 2 times a day. The seizures seemed to only be affected for a day to 5 days, then the seizures would come back. Sometimes stronger, other times weaker, it was so inconsistent; and we were so frustrated.

It was around July 7th that X's eye began twitching as well, or at least that was when we took notice of it because it was so consistent. I think July was when it really started becoming serious. We had been making sure he was getting good sleep, taking his meds, eating better, getting a nap, watching less TV. All the little things the Mayo told us to do and more, the result was disappointing, more seizures. At this point there was an urgency to find some sort of relief for him, we called the Mayo and they scheduled another appointment. This time more test would be done, and only Sarah would go with him. I watched the twins during the day and my parents watched the twinkies while I worked. It was hard only for the reason that I wished I was up there to hear everything, and to ask questions, and to be with them. I had to trust and rely on Sarah.

It was sometime in July that we had his next appointments, it all worked out, and the Mayo reevaluated Xanders condition. He had a physical, and some more blood work done; it was also around this time we started to notice that he began favoring his left hand, but only slightly. This was mentioned to the Doctors and they asked us to keep an eye on it. Sarah informed the Dr.'s that he was averaging about 5 seizures a day, and they were more aggressive than before, and now they were including his eye. They found all of this interesting, and mentioned stacking his meds. Sarah said she would have to talk it over with me. Sarah told me the Neurologist suggested X go on Keppra, I was not thrilled about this, but I knew that there were times when more than 1 medicine had to be taken in order to control the seizures. .

Keppra was a disaster to say the least; it worked for about 3 days. He was so emotional, and would do the oddest things. He would walk up to us or his brothers and just start punching, he even did this to friends or visitors. The breaking point for me came the day Sarah and I were talking about his behavior in the kitchen. I will never forget it; he came in, sat on the kitchen floor and told us how much he disliked how he felt. He told us "I just want all of this to stop, I feel weird". I was so upset at that statement at the time, and can vividly recall how my heart dropped when he told us that. The kid was 4 years old, on top of that he was telling us how the medicine was messing with him. That was all I needed to hear, Sarah and I knew our perceptions were correct, and she called the Mayo that same day. We had to wean him off the Keppra, but it was worth it, we got our sweet Xander back.

August was no better for us, we would have a day or two with as little as 2 or three seizures, but most days it was 5-7. We decided to start him in sports since he loved them so much, it was baseball and soccer for our X, and boy did he love it. Our only concern was him having a seizure in front of everyone, or his little friends. We also decided to keep him home one more year, we felt like school would have to wait until we could get a hold of these seizures better. A decision that I feel was one of the best that Sarah and I have made.

Since Sarah kept in constant contact with his Dr.'s, they asked us to have a local hospital perform an MRI with contrast. September 7th was the day, and it went off without a hitch. Same rules as always no food, or drinks after midnight, and the test would be done mid morning.

The results were in before we knew it, and it showed everything normal. We were hopeful that X would be able to grow out of these seizures, that they would not plague him his entire life, and that he would never know a lifetime of seizures. I distinctly remember thinking that it was good news, everything is normal.

The next few months would prove to be very confusing, and at times depressing. We would not "feel" ready for the news that we would receive. Thinking back to the early part of 2009 seems like a lifetime away; if you would have told me then that our family had some very trying times ahead, I would have never imagined this.

A different perspective

Well, yesterday I had intended to write some more historical stuff, but was forced to change my plans due to unplanned events that took place. Mainly another trip to the ER, this time, I was able to take it all in stride, not missing a beat. Here's how it went.

Sarah took Zane to an appointment early morning and X was at preschool, leaving me and Israel free reign of the house. As soon as the coast was clear, the wrestling began. Iz wasn't very crazy at first and eventually left me to go play in his room, I then decided to try to get a nap in. I woke up to a flurry of fist pounding my back, and the words "getchu, getchu, getchu", it was on after that. I got up and proceeded to play the role of the "bad guy" and the "play by play announcer". It was a long match that at one point had me on the bottom with Iz in my arms above me. I let him fall to my chest, and started tickling him, he then pulled an ultra-ninja move and rolled off me. That is when the screaming began, then "Daddy, huuts weally baad". He was holding his left arm and in obvious pain, I thought "What the heck just happened". I thought that he may have sprained his wrist, or just tweaked it, but he was not getting any better, and I could do nothing to console him.

I called Sarah and let her know what was going on, and that she was going to have to pick up X from preschool, she sighed, as if saying here we go again, and said OK. We got in the truck and headed to the ER. I was upset, but only because I didn't like seeing him in pain. This was different than even a week ago, where I would have been more inclined to say "One more thing to add to the list of things gone wrong".

On the way there I noticed my check engine light turned off (And has stayed off since) just like the mechanic said it should if it was just the cold. I called Sarah again and told her "I wish you were taking him, they are gonna think I did this to him". She played that thought down, and said she was going to be late picking X up. I said that because I am always getting dirty looks for the way I look, even having security follow me in stores and once question me. I get that, and know it comes with the territory, but hospitals are a whole different thing, especially with hurt kids. They could easily call the child victim unit and next thing you know I have co-workers in my room.

Everything went well in the ER and Iz was in enough pain that the nurses wanted to give him more pain reliever. Then a guy came in and started asking a bunch of questions. Everything was normal until I heard "Is there a history of violence, or domestic violence in the home", I said "Huh.....uh NO." Then there was "Has there been a tendency toward violence in the home" I replied "(humph), NO" He gave me a cross eyed look and then left. Now I have been in the ER numerous times in the last two months, and I have never been asked those questions. I am not gonna lie, I initially thought "That a-hole really thinks I hurt my boy", I then regain my composure and thought "He's just doing his job, if it wasn't for them child abuse cases may go unnoticed" Then I thought my first thought again, and then tried remembering not to take it personal. I called a friend who is in the Child Victim, Sexual Assault unit and told him about the questions. He laughed and said "You look like a piece of s*#&, what do you expect, I'd call on you too if I didn't know you. Just let them know your a cop, and if they call they call, but they probably won't unless they are really concerned" He laughed some more making fun of me, and telling me he had just received a call to go in and interview a "Long haired child abuser". I laughed called him a jerk, and said thanks.

I let the nurse and question guy know who I was, and that I was a Police Officer. They both maintained their professionalism, stated that they were not judging me (Lying through their teeth) and explained that they always ask those questions. I told them I had never heard those questions in the 4 times I had been to the ER in last 2 months (Realizing that last statement was not in my favor as I said it) and explained I wanted them to do their jobs, just not judge me for how I looked. They said that they would never do anything like that, although they treated me better after that (Or at least I thought they did).

When the Doc came in Iz was in no more pain and playing with the railings. She examined him and said he probably dislocated his elbow, and it popped back into place while he was here. She said it was very common for parents to go the the ER and then while waiting their child goes back to normal and the parents are left dumbfounded. The nurses were even laughing at this since they too thought he had a broken arm. We said our good-byes, and Iz was given a car for being a brave boy.

I looked at him and couldn't help wondering if he planned this while thing. Fake an injury, spend more time with Daddy, go the the hospital, get a toy (Both X and Zane had received toys after going to the ER and Iz was left toyless), and then go home better off then when he came in. I think he may have pulled the ultimate scam, and I fell for it.

I do think it is a testament to God's peace he places on us, that I didn't feel overwhelmed or stresses. Once again I attribute that to all our friends and family praying for us. There is no way we could do this without God, and the support from all our loved ones.

We leave for the Mayo tomorrow to try to get a room at the Ronald McDonald house, then two days of tests, questions and explanations. I'll keep everyone updated, Monday at the latest; hopefully I have enough free time at night to catch up on the history of all of this.

Tuesday, January 12, 2010

Keeping up

Needless to say, I have been super busy with work, part-times, family, and circumstances. Not to mention shoveling the snow and melting the ice that has built up on our roof from the two massive blizzards in Dec. And yes, I am shoveling snow off my roof, twice it was as high as mid-thigh. If I am not able to complete another historical post soon, I should be able to finish one or two while we are at the Mayo Clinic this next week.

Keep our X in prayer, on Monday he meets with a Pediatric Neuro-Psychologist, Dr. Zaccariello to do a cognitive function test to assess where he is cognitively, so basically they will have him draw, color, ask him age appropriate school type questions & just overall watch him be a five year old. This is one step they take to make sure he is a good candidate for surgery. Some of the tests that they do with him during this time they will also do after they put the grid on his brain (before the actual resection). They will do this to test that area of his brain to check & see if when/if it is removed he will still be able to answer the questions the way he did before surgery. Does that kinda make sense? We don't have a super clear understanding of it but that leads us to appointment number 2 on Tuesday with the Neuro-Surgeon Dr. Wetjen. At this appointment we will learn all of the nitty gritty of all of the surgeries. Then on to appointment number 3 with the epileptoligist Dr. Wirrell & I am not sure what that one is for exactly.

We are anxious as the days approach, ready to move on from this time and into the next "adventure". We are taking our twins up with us this time, the last time we went and did not take them it was sad. X asked for his "Brudders" and my mom told me that the twins would go into X's room and ask for him. When we finally made it back home they shrieked with joy, and wouldn't stop hugging all of us. I hope they do well since they will be staying with Travis' mom, who is such a sweet woman, and has her own daycare.

One last thing, my wife finally was able to contact the Turners of AZ. The Christian family who helped us not "feel" all alone in this and inspired me to start this after finding their website. I would ask that all our friends and family pray for their sweet Hannah. I know we have people all over the world praying for X, so would you pray for her too. She told Sarah that they have people praying for Hannah worldwide as well, and would put X on that prayer-chain. I want to do the same for them. Thanks in advance, and you guys are the greatest.

Monday, January 11, 2010

Words of Encouragement

I listen to talk radio, and sometimes it drives my wife nuts. When I first started listening to it with her she really hated it, she would say "Why are you listening to this, old people listen to this". I get it from my parents, they listened to it when I was growing up. The funny thing is I hated it at first, then it started growing on me. I remember being like 11 years old, sitting in the back of our station wagon listening to Paul Harvey's "The Rest Of The Story". My wife, and some of my friends wonder where I come up with my obscure facts, it's talk radio, and the occasional weird science TV show.

Why am I writing about this? Well, it's because I wanted to share something real quick (OK, you and I both know I am long winded, and type-ed) with you. I have received 2 e-mails of encouragement that reminded me of something I heard on talk radio. It was about 6 months ago that I was driving home and heard a pastor and an Evangelist/missionary in an interview. Usually I would change it because 80% of the time I think the interviews are really cheesy, this time I just listened. About 5 minutes into the interview I was able to derive that this evangelist/missionary being interviewed was sick with some sort of serious illness, but you could hear life in his voice. A few minutes later I pulled up to my house and parked my truck and listened.

The pastor asked the evangelist so many good questions, and the evangelist replied with such honesty it blew me away, I remember thinking I have never heard anyone so honest on the radio. He was revealing very personal feelings on real issues in his life. I could tell that the pastor was a bit taken back by his honesty as well, then I heard something so profound. This evangelist was asked "When people come up to you and ask you 'If God is real why hasn't he healed you?' What do you say?" His reply was enough to make me choke back tears, I will give you not exact quotes, but a summery of what he said.

His reply was I tell them before I had this illness I thought I was a caring and compassionate man, I thought that I was sensitive toward other people and what they were going through. I thought I knew how to be open, caring, and loving; but I was wrong. One thing I know for sure was that my family didn't always think I was very compassionate. I tell them that it was because of this that I think God allowed this sickness to become a part of me. I think that he looked down from heaven and said (The evangelist name) is not whole, I want him to be whole, he prays that my will be done, and I want him to be more compassionate, sensitive, open, caring and loving. He does well but for some reason he is not allowing himself to operate in the fullness that I have for him. This test will allow him to live his life in the fullness that I desire for him. He went on to say I tell them that the reason why everyone who knows me says I am a good man is because of this sickness. It has allowed me to walk in the fullness that God desires for me, and it is the only way I would have ever listened. I tell them if it were not for this sickness, I would not be where I am today with God, and this ministry. I tell them that I would rather be sick and whole than healthy and in pieces.

The pastors words after that were, "That is incredible, I have never heard anyone explain something like this the way you have". Nor had I. The disease was Systemic lupus erythematosus. The miracle was that he was one of the only people in the world to have gone through symptoms, but the symptoms went from bad to tolerable, and he is able to continue his ministry. So that brings me to today.

I have received 2 e-mails of encouragement, and both had the same theme. Both meant a great deal, and both made me think of the interview above. My desire is to be like that man, to be able to look through my circumstances and to the goal, or the reward. That is why "All things work for the good of those who love him". It makes sense, although not always while you are going through it. It is good to have a support system that encourages you, and helps you see the truth without making you feel bad.

One thing I lost sight of was the fact that God knows what it is like to see his son suffer. Many times during this period in our lives I have thought "God, why are you letting this happen? FIX THIS!!!! A good father would never let this happen to their child". I was so wrong. God has a plan for all of this, and I must rely on him to see it through to completion. I think times like this make me understand James better when he says in James 1:2-8 2 Consider it pure joy, my brothers, whenever you face trials of many kinds, 3 because you know that the testing of your faith develops perseverance. 4 Perseverance must finish its work so that you may be mature and complete, not lacking anything. 5 If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. 6 But when he asks, he must believe and not doubt, because he who doubts is like a wave of the sea, blown and tossed by the wind. 7 That man should not think he will receive anything from the Lord; 8 he is a double-minded man, unstable in all he does.

God I believe that you have a plan and a purpose for all of this occurring in my sweet Xanders life. Please help me to be the type of Father/husband/man to help lead him to that understanding, whatever it may be or whatever it that may look like. I know that my life is being changed in ways I would never have imagined as a result of this, help me show him your goodness in all of this. Give me the proper words to say so that one day I may be able to explain all of this to him, and help me be the example he needs me to be. God help me lead my wife and three boys during these hard times, and in our victory may your name be praised.

Thursday, January 7, 2010

Honesty and Help

This is going to be very raw, if you don't want that, or like what I say here is your warning. It is 2:50am, I just got home from work. I am not happy. Our lives have been such a roller coaster, emotionally, with victories/good luck and failure/bad luck (For lack of a better term), with Xander, and our family life, and I am ready to be done with it.

Whoever is reading this, I have a plea, please pray. We are tired. I am not a quitter, I love a good fight, but I need a break. More than just a day. I am not over exaggerating, or making it seem worse than it is, real talk for every victory/blessing the next day there has been another obstacle. I will only give one example, someone paid for our truck to be repaired (Blessing), that very next morning during an oil change for the van we were told it needed new brakes asap. Not a big deal, we laughed it off, plus we knew we could do it since we had been blessed by the truck. The next day after that my truck which has run like a champ for the last 2 years starts acting funny. Enough said, I am done talking about bad crap. It has literally gotten to the point where friends/co-workers, some who I have never talked on a deeper, personnel level with before about God, are telling me "He's (referring to God) just testing you, it's gotta be over soon". The crazy part is, they don't even know the HALF of it!

I thought it was going to be over months ago, yet here we are. I have only focused on the good, that hasn't worked. I have prayed, I have cried, I have prayed with my wife, I have had a TON of help from family and friends (to which I will have to spend my entire life trying to repay), I have begged, pleaded, asked for forgiveness, sat still, tried to look for an answer, stopped looking for answers, put on a garment of praise, rejoiced, lamented, pressed on, kept on, fought, asked for protection, allowed myself to be weak so his strength would bring me through, talked to friends, not talked to anyone, yelled at the devil, yelled at God, listened, spoke life, looked forward, worried, not worried, I could go on and on. I feel like I have tried it all, and I am still here on the same roller coaster.

I drove home tonight at 20 mph, yelling and crying. I have nothing left to hide, so I will share with you what I said. The reason I am sharing this is so that maybe someone out there can be my voice to God, someone can give me a message from him. I need. That was not a typo, I need. I feel numb, I hate that, but I do, here's the jist of what I said, after yelling at the enemy.

"God, I really need your help right now, I am not a quitter, and I will not quit, but I feel like quitting. I need a brake, I am worn in every sense. I want you to meet me here, right now, and explain to me what is happening to me. Dan Torres loves Jesus, and needs to meet him now. Your word is the Truth, and I believe it. You love me more than my earthly father, so dad meet me here now. Meet me here now because I know that if I called my earthly father right now and told him I needed him here, he would show up. Tell me why I can't get off this roller coaster, why things cannot be normal for me, why I have to go through all of this. Why? Answer me Dad, I want to know. If my son asked me, I would tell him everything I could, so tell me. This is stupid, all of this is, so why?" I hears nothing, I felt like I heard "You don't have to know why" But I don't know if that was from him, or my flustered mind

That is not all of it, but the jist of it. If anyone can offer anything I am willing to listen. I had a great conversation with my Uncle Joe, and I shared it with my wife. His wisdom on stuff really lifted me up, now this. I hate this, I have never been so unstable in life before. Here's the crazy part, I know that God is my rock and my refuge, in whom I will trust; so why? I have no idea why this is happening. My good friend and work partner said "You just have to remember that there are people worse than you out there". My reply was "Pretty soon that remark won't hold true". I try to always remember that, and we have talked about it before, but I feel like it just keeps getting worse. Even with my precious son Xander, who has been having stronger seizures, and now recently twitches. Imagine sleeping and at the end of your breath, you are not allowed to breath for 20 to 30 seconds. That's what he has been going through for the last few weeks, and now the twitches, which no one has explained yet. He's on all these drugs that do not allow his true nature to come out. My sweet twins are at each others throats constantly, and they have been having really bad dreams lately. My incredible wife can't seem to feel rested ever. It all just sucks guys, it all sucks,they do not deserve this.

Mike Donahue, who is one of the most real, and Godly men I know once asked me a question when I was facing a very hard time in my life. He asked me "Does Dan Torres love Jesus?" I replied "Yes". He then told me "Hold onto that when it gets hard, cause he (God) will never leave you" I have held onto that, and I know it. I just am having a hard time with this time in my life, in our lives. All the things happening are all out of our hands, and some of the things happening are totally freaky things.

Please do not take this in anyway as me whining, I am honestly opening myself up to you in effort to gain insight. Maybe God will tell one of you something, and then you can tell me because I can't hear crap. I told my dad about three weeks ago that I felt like Daniel in the bible, the part where the angel takes 40 days to reply to his prayer. When Daniel asks him (Angel) about this he (Angel) says that he has been fighting with the "prince of the air". I told my dad "That's how I feel, like all my prayers are getting stuck out there, somewhere".

Please pray for us, I don't know how much longer Sarah and I can take this. I KNOW that we can do all things, and I will not stop fighting, but I am tired, we both are tired. I feel like chewing again. I have quit for over a year, and now more than ever I feel like chewing. Stupid things like that come to my head at times like this. I know somewhere out there someone is reading this and feels as if they have something for us. I am asking that you would comment it, or e-mail us if you are too embarrassed to share it on a comment ( Tendertigerx@gmail ). I will take everything with a grain of salt, and ask God about it, but I am now asking my brothers and sisters in Christ to please help us hear him. Sarah and I are beating our heads in trying to figure all this bad crap out, to no avail. Help us hear God, whether it be through prayer, a word, or whatever, help.

Maybe this is normal, and this is how people going through big "Storms" feel. I don't know, because no one has ever shared this with me. I am so frustrated, I don't want to be "that guy". The one that comes to work and only has bad news, or the guy that has only bad stuff happen to him, cause that's all he ever talks about. I have a ton of great stuff happen, blessings galore. I am just confused as to why I/we keep getting rained on. I am once again asking for help from my Christian family, I know that if I turn to anything else it is not worth the effort. Even a quick 20 second prayer, we will take it.

To be brutally honest, I just read this and told myself I was not going to post this. I am embarrassed about it, and I feel too vulnerable. It is for that very reason that I have posted this, and you are reading it. I will be an open book, naked, if you will, before you and God. I meant what I said, that we wanted to help people out, and maybe one day someone will read this and say "We are not the only ones".

Wednesday, January 6, 2010

Divine Preparation

Well here it finally is, as I promised. This post has been really hard to get to since I am still trying to get through the past events, and up to date. I had mentioned in an earlier post that God had been preparing us for this time, and I really believe that. I am going to take the next few paragraphs to explain a bit about us, so your not lost.

I am 30 years old, and have grown up in a "Christian" home. I am fortunate to have both parents in my life, and still together. I rebelled until I was out of high school, and then made a deal with God. I told him you do these three things, and I'll really start to follow you. Two days later it all happened, I had not told a soul about this either. I started to make the "right choices" in life, after numerous years of making foolish ones. I had good "christian" friends like Eddie Roach, Nick Delaney, and Craig Bunck all whom I am still friends with. Nick and Craig introduced me to BJ, the youth pastor, who in turn introduced me to Master's Commission ( that is the one that started them all) in Bellevue, NE.

The next year all three of us went, and I met some of the most Godly men I have ever met in that place. Pastors Hoyt, Whitlock, Tellez, Hooker (his real last name), Moen, and our fearless director Schneckloth. We had a great year, and Nick and I continued for a total of 3. I met Sarah there, and she fell in love with me at first glance. Who could blame her, right? OK, we both thought the other annoying in some sense, although she did think I was divine, lol. We did end up dating for about 2 years, then were married.

We have been through the gamut of marriage trials, and have still managed to stay together. All that I am knows that without God, Sarah and I would not be together. Not that we don't love each other, we do, but on both sides there has been enough damage to destroy 99% of marriages. We regularly saw a marriage counselor from March of 2006 until September of 2009, from Sep. 2009 to Nov. 2009 it was off and on. We have since stopped going, we have both been too busy but are strong enough, and wise enough to know we can go back anytime, and we are not weaker because of it.

So I know you have seen a reoccurring theme in my post, or I hope you have, and that is my mention of God. We are both believers in Jesus Christ, and try to live a life worthy of the calling with which we have received. What does that looks like, I believe looks different depending on what God has called us to, and what "season" we are going through. Now I can give you the Sunday morning answer and say that means "We are followers of the Most High, and that means we love Jesus, and spread his joy, love, and gospel where ever we are and go. People know we are Christians because we are proud of it and proclaim it in the streets". If that is you, I'm not knocking it, what I will say is that is not me. I know people like that, I have some good friends like that, again, it's not me.

There was a season that it was me, preaching on the corners, calling out for people to repent, wearing "Got Christ" T-shirts. That season has passed, for at least the time being, it may return, who knows. I have even been on the other end, keeping relatively quiet about my faith, I feel like I was not living to my fullest. So where am I now? I am where I need to be, I love Jesus, and I am down to earth. I have been forgiven of much, so I have learned compassion and forgiveness. I have learned so much through the last 10 years of my life that has help shape me into what I believe to be a well rounded person.

I am also blessed to have the "helpmate" that I have. She often wonders about being a stay at home mom, she struggles with wondering if she is doing any good. I try to tell her she is invaluable, and I would never want anyone else with our children as much as she is with them. She is what we need. I have the comfort of knowing that she will not steer our children wrong; besides teaching them the wrong way to make a machine gun sound (I hope there's still time to reteach our twins). She balances us out, and we need it. We need someone to tell us "It's cuddle time", and we need someone to teach us to be more sensitive. We absolutely need her in our lives in order for us to be whole. I would have said complete, however, I am reminded of Jerry McGuire and that is way too corney. The last thing we need her for is to make us a little girl/sister in the future. If you know us, don't ask, we are not, and may never be, but it is a thought.

Romans 8:28 says "And we know that all things work together for good to those who love God, to those who are the called according to His purpose". Sarah and I have talked about how much that pertains to our lives together, our family's life. We believe that all that crap we went through a few years ago, and learned from, has helped us be able to withstand the "Storm" we are going through. Because of those past struggles, we have learned and continue to do so, the value of communication, forgiveness, not taking it personal (Whatever "it" is), love, acceptance, and accepting failure. When I say that some may gasp, others may say "How can you accept failure, that is unacceptable". The later was me, and unfortunately I really believed that. I have since been knocked off my high horse and I have learned that it is a normal part of being human. Someone famous once said "To err is human, to forgive divine" I like that.

I have failed people in the past and present, and will do so in the future. The same goes for my family, friends and others, and it is OK. We are not perfect, and God doesn't expect us to be. David was a huge failure at times, and interestingly enough Acts 13:22 says After removing Saul, he made David their king. He testified concerning him: 'I have found David son of Jesse a man after my own heart; he will do everything I want him to do.' I think that verse is amazing.

As I type I feel like God is speaking something over our family, and I want to share it with you. So undeserving is the family of Strong Towers, and yet I (God) love them, bless them, and allow them to fall, never abandoning them. I (God) never leave them so the wolves may devour them, I (God) set them high on a hill for all to see. Maybe its a word for you too, maybe not, I just wanted to share it.

That is what we, the TORRES Family are all about. We love God, we know that he is more than able to heal our boy, whether by divine intervention, or through the hand of a man. A man he gave the knowledge and understanding to, a man he allowed to learn secrets that only a select few may know. A man he has allowed to learn secretes from the past that he may learn from them and continue to bless those who may not believe. That is how we feel. We are not the type of people who say "Don't say your sick" when you have a funny nose, and a temp. of 103. We know the power of the tongue, and respect that, but we also live in an imperfect world. If God wants X to be healed he will be, if not now then later. Our ways are not his, and we lean not on our own understanding.

One more thing, we would not be who we are today if it were not for our families, and our friends, both who have taught us so much. We are both blessed to have wonderful families, imperfect and wonderful. For us, our parents were the reason we even knew there was a God, what greater gift can you give your child? Thanks.

OK this is far more than I wanted to write, if you don't know us, and have questions feel free to ask, that's why we're here. One more thing if you know someone who was recently diagnosed with a seizure disorder let them know about us, I found it very helpful to read others experiences, and that is why we have this site.