Friday, August 27, 2010

I was right

So, as mentioned in my previous post, I announce he is doing well and he has a seizure. Well, I was right, last night he had 2 seizures and this moring one more before school. Maybe that means I should just keep it all to myself.

Thursday, August 26, 2010

Update and picture update

We have almost 2 weeks of school under our belt and so far so good. It seems as if X really likes it, from our conversations with him it all seems positive. Bedtime is still an issue for us since all three are still in one room, I was not as big of a fan as Sarah was about this whole thing, so we will see how long this last. It seems like when X is sleepy the Twinkies are not and vise versa, sooner then later we will have to start remodeling the basement.

Time seems to be ever eluding us, if it's not a busy week at work with overtime (aka Festivals), I am helping out with a fundraiser or Sarah has plans that were made in advance that we are tied to. Speaking of Sarah, she is going to compete in a mini triathlon this Saturday. It's scaled down, but nonetheless still a triathlon, I think she should do well considering she has been working out pretty consistently since June.

Xander has not had any episodes as of late, a blessing that I am a bit nervous to announce. It seems as if every time I start to explain to people how well he is doing, we take a step back and he has a seizure. Thanks to X being so sharp we found out his school nurse was only giving him half the amount of medicine that he needed in the afternoon. Sarah was able to call and correct that, an easy mistake for her to make, as I am sure she has a numerous amount of students to tend to. We are blessed to have this public school only a few blocks away, they really are one of the best. I am still torn at wanting to place our kids in a private school, but with the economy the way it is, and Sarah not working (Our choice) it is not feasible.

Here are some more recent pictures of the boys that I said I was going to post. More are sure to come, but as always time keeps on slipping into the future.

Sarah drew a heart on his hand so he could squeeze it if he missed us
First day of School and this picture says it all

It was a family event, the twins asked for him all day

One last Picture before we say goodbye

I needed one too

We showed up an 75 minutes early so the twins played on the playground

This is when he first see we are waiting for him

Mommy gets the first kisses

But I walk away with the prize

Sarah's birthday landed on his first day of school, we went to eat after we picked him up. He is so handsome and you can't see his scar unless you look for it.

This was her cake the Twinkies picked for her since it looked like a rainbow. She turned 21.......again.

Monday, August 23, 2010

Keep on Keeping on

As of late, we have been receiving an increase of tele-marking calls; today I turned my frustration into laughter. I am not a professional crank caller nor have I ever done stand up comedy, I do think I am a little funny, and today I practiced. Tele-Marketers beware, calling my house is more fun for me, although I do think that you enjoy it as well. It is posted on my facebook site and hopefully I can have it play on this site as soon as I figure it out.

X starts his 2nd week of school tomorrow, it should be interesting since we had a meltdown on Thursday. The day started out with complaining, the walk to school was filled with much more complaining, and when we finally arrived to school he tried to run away. I had to walk him into school and when I left he proceeded to yell loud enough that I could hear him outside. About 40 minutes later we received a call from the school saying he was still crying, I had to calm him down via phone. The rest of the day was okay, we were reassured from the teachers that a lot of kids break down on Thursday and Friday since the thrill of school is gone and they are mentally worn.

The twins are doing great, crazy as ever and seem to enjoy the 7 hours a day they get alone with us. Earlier this week Sarah watched a program about the Rangers called "Making the Cut", they watched it with her with ever growing interest. Once it was over they were helping boost each other over the couch and telling each other "You can do it!", we definitely have our hands full.

The reason I have not posted in a few days is because I worked OT all weekend, on my days off we worked as well and since it was in the sun all day (94 degrees with what felt like 100% humidity) it drained me. Hopefully within a year I will be working days somewhere. Not seeing the boys all weekend sucked, I miss them and even though I try to explain to them why I am not home, they don't get it, not fully.

Xander has been doing well, no seizures or twitches since we moved his doses around, thank God for that. To be totally honest, every time he has twitches or a seizure I feel like I have failed him. I know it is unrealistic, but it is my perception; one that I try to change, but still nags at me. I don't show or tell him that, I stay strong for him, but it is a struggle, one that I am finding easier, with time, to win. He on the other hand is a rock, refusing to allow anything to bring him down, I love that he can be so strong. We talk about his seizures and try to have as much communication on that topic as possible, we do not want him thinking he is alone in this or that he cannot talk about it.

Things are good now, hopefully one day, by the grace of God, this will all be behind us; if not we will all keep keeping on as a family.

Wednesday, August 18, 2010

I tried, but I couldn't

As I drove home from work tonight I heard a song on the radio that reminded me of our 2 months at the Mayo Clinic/St. Mary;s hospital. It was the Casting Crowns song, "Praise you in this Storm", I sat in front of my house and listened to most of it before I went inside. Lots of memories are associated with that song, most of them are in one way or another filled with hope, causing me to want to look at some of the old post.

I tried, but I couldn't, not yet. I started to read some of your encouragement, desperately needed encouragement and it was refreshing. I then saw a photo of Sarah lying (I had to look that up to make sure I was using it in the right tense) next to X after his surgery, his scar looked fresh and his head grossly swollen. I had to stop there, I am not sure I am ready to relive any part of that yet. As a matter of fact, I know I am not, talking about it is one thing, seeing it is another. Sorry, I had to get that out, it's like therapy for me, letting it out.

Xander is loving school, I know it's only day two but at least he doesn't hate it. It wears him out, Sarah told me that at the end of the day, he was really tired and grouchy. She was too, cause she was asleep by 8:15 and not in the mood to talk. The twins were crazy monkeys and wanted to wrestle all afternoon, I had to make them lunch so I could get a break, they are nonstop and feed off each others energy. I think it's funny when one of them is scared and the other will conquer that fear for him by experiencing it and telling him "See, I'm brave. It's not scary". Here's how that played out this afternoon.

I was the bad guy and I was chasing them around the house. We got into our (Sarah's and mine) bedroom and they jumped on the bed to attack me. I attacked them and grabbed Israel's toes saying "I'm gonna eat your toes!!!!!!!!!!" Iz freaked out and yelled "No Daddy, don't eat my toes!!! I'm scared Daddy NOOO!!" Zane did not skip a beat and pushed me away, laid down where Iz was, pointed his feet in the air and said "Look, Look at me" (Talking to Iz who was crying). Iz watched him as he instructed me to "Eat my toes daddy". I pretended to eat them and he proceeded to tell Iz "See, it's not scary, I'm a brave boy, It's not scary, it's funny." Being reassured by his brother he fell into place and I had 20 toes on my face.

I loved it, and I was fascinated at how much they not only loved each other, but trusted each other too. That does not always go the way I want it to, as evident by their willingness to help each other up to otherwise inaccessible locations, like the basement wall or over fences. But when they work together to conquer fears it is fun to watch.

Tuesday, August 17, 2010

The Official Day of Letting Go

     I can remember when X was a only about a month old, I would carry him around with me everywhere I went, those days are pretty much over. It seems unfair that after 5 plus years of me being able to hang out with him all day, I now am unable to. I know that I still have weekends, vacations and summer, but it is not the same, similar, but not the same. I also know that I just need to take advantage of every moment that I do have with him, I know all these things, it still sucks.

The night before his first day of school I told Sarah some feelings I had that have been eating at me. Feelings like, Did I do enough, I could have done more, I didn't take advantage of every opportunity, I shouldn't have yelled/scolded him so much, was I too hard on him, I could go on forever. My biggest issue is that I work an afternoon shift, so I was able to play/hang-out with him for 4-8 hours a day, depending on what was going on that day. Now I am reduced to my days off, and weekends. I have had lots of time to think about this, for example on average I would spend 53hrs. a week with him, again depending on the situation it could go up as much as 80 plus (Vacations) or as little as 30 (Crazy summer weeks with lots of OT and no days off work, rare but it did happen). Now on average I will see him an average of 35 hours a week, I am not one bit pleased with that. especially when you consider it may be less.

His teacher will see him about 35 hours a week guaranteed, Sarah will see him about 44 hours a week; again her hours are dependent on the situation. I told Sarah all of this and jokingly said "That means no slumber parties at friends houses and no hanging out with anyone but us, he has to stay at home until he has graduated. Part of me wishes I could actually do that.

What I didn't realize is that with him officially starting school, it also marks the official day we have to start letting go, or releasing the grip we have on him. I know it is good for him so he can see we trust him, and so that he is able to become the person he is suppose to be, his "own Man" for lack of a better term. This time has made me realize even more, how every second counts. It has also made me understand why so many people are hurting in this world.

What I am referring to is the Missing Father Role. Too many men not in the lives of their children for various reasons, too many to list, and quite frankly 99% of them no good. I say 99% due to circumstances that cannot be prevented or helped, such as death, military service or unwanted separation to name a few. Most of the excuses I have at one time or another used myself, I don't want you to think I am pointing a finger. Please keep in mind that this Blog is filled with my personal thoughts and is not aimed to be a soapbox to rip into people. It is not my intention to preach to people, or tell people they are dysfunctional in one way or another, I am only thinking outside of my head.

But it makes more sense to me as to why children, teenagers, young adults, adults, and seniors are so hurt. The role of a father, and to be brutally honest the role of a parent, has been reduced and we as a society have allowed other people to take its place. It is no wonder why our society is the way it is, we are all hurt. I love my father, he is an incredible man, but he will be the first to tell you that there were times when we were growing up, that his role was drastically reduced. That is one thing he reminds me of a lot, I can hear him "Daniel, don't get stuck being a work-a-holic, I was and I can see you going down that path". I tease him a lot because he lets the kids get away with things we would have never been allowed to get away with.

As much as I hate to admit it, with age comes wisdom, and I think he has realized that not many things are worth getting worked up about. He is always telling me, "They're kids, let them be", 80% of the time he is right. I need to let my kids be kids and enjoy them for what they are, a gift and a reminder of what is really important.

If you have kids watch them, if you don't, watch someone else's, just don't be creepy about it or the Police may be called. The one common thing about children is their desire to be loved and accepted by the ones they look up to and love the most, their Mommy and Daddy. Too often I only give a few minutes to that request and continue doing what I was doing. I pray that I would stop and love on them, play with them and actually be there for them. The dishes, work, yard work, friends, alone time, can all be done later, they will still be there 30 years from now. Your kids will be gone, off to college, busy with life, or married before you know it, so enjoy every minute, because no amount of work, or best friend can give you the same kind of devoted love as a child.

I'm off to play with the Twins

I'm glad I know Christ

It's been forever since my last Blog, sorry. What started as me taking a break so I could enjoy my family outside of the confines of a hospital turned into me not wanting to allow strangers, or even friends into the realness of our lives. I know, very unfair, but after living one way for 30 years, one does not change overnight. That is what the apology is for.

A lot has happened since the last post, too much for me to put into a few "Historical Blogs" as I like to call them. So hopefully I can sum them up in a few paragraphs and if you have any questions, you can ask. Although, I have a feeling that not many people read this anymore, which is okay by me. Who knows, maybe someone will run across this blog one day and it will be what they needed.

To date Xander has had 5 seizures, 5 too many when I look at it being a protective parent. When I look at it from the outside I say "Holy Crap, 5! That is awesome! Praise God!" and yes even as I look at it from my protective prospective I still praise God. I, like many parents, only want the best for my child.

The Twinkies have turned 3 and will be starting Pre-School, X had his first day of school on Monday (16th). It was a day of tears, even leading up to it, I would be remiss if I did not admit that I was teary eyed the night before he started school. Okay, truth be told I snuck up to his bed and slept by him till I woke up at 6am and started to get his clothes and breakfast ready.

Sarah and I are doing well, with the normal ups and downs of marriage. We try to constantly thank God for his grace and mercy in our lives and his faithfulness with Xander. We have had 3 birthdays, 4 really since one of them was the twins. The fundraiser was incredible, I wish I could get more into that, but for times sake that will have to do. I think I have a post saved on this Blogging thingy my Buddy Matt sent me. I may have to fire that bad boy up again and locate it.

One more thing that happened this summer was I had an artillery shell go off in my hand causing mostly 2nd degree burns and 2 very small areas of 3rd degree burns. I have lost some mobility, not much maybe 10%, and some feeling, which I was told would eventually come back in about a year or so. And no I was not holding it so I could throw it, a spark from lit firework lit it right where the fuse enters the firework. And yes, it was the worst physical pain I have felt to date.
My Dad had a TIA, it's kind of like a Mini-Stroke, about 2 months ago. I really think that had we not gone through our event with Xander, I would have been clueless as what to do. Because of our experience I was able to make the right decisions. Talk about scary, that man (my dad) has no idea what happened for a time span of about 12 hours. I was with him for about 7 of those, and I will NEVER forget. He is doing much better and now has my mom and me nagging him to live better and take his meds.

I have so much to write about, in regards to the last few months, but I am going to resist the urge and just go from today on after this post. One thing I will say about the last few months is, I am glad I know Christ.

Some may take that last statement as a "Crutch" statement, others may say "Amen Brother". Whatever your response is, that's what it is. For me, my communication with God was my anchor, my only connection with reality in time of calamity. He allowed me to keep calm when I should have panicked, led me to shelter in a storm, showed me what real love and friendship is in the place I would have never looked (OPD), and allowed me to watch my son walk to his first day of school. The list could go on and on, but I think you catch my drift.

More to come as the days go on.