And the Beat Goes On....

Tonight was Liverpool Marching Band's home show.  It was awesome!  JB, Nathan, and Aiden are all in band this year.  This is so important for so many reasons.  Our family literally had the summer from hell.  We are still, and will be for a while, working through some of the damage caused.  I don't want to give any details, those of you who know, understand, and if you don't know, take my word for it!  Slowly, things are getting back to normal.  I wasn't even sure we would get to that point, and yet, slowly, in moments, normal has returned.  I still get aggravated when the boys leave their stuff laying around, but now, its comforting.  (I still make them clean it up)  Its comforting because that means they are home.  All of them.  And it feels good.  Having three of them in marching band is expensive, so we worked the home show today, (all day) to earn money for their accounts.  We have been running all week.  Instead of it being a burden, its reassuring.  My family is whole, and together again.  When JB straps on his drum, and Nathan warms up on the mallets, it hits me- the beat goes on.

These little moments of normal are burned into my memory, like a picture is etched into a camera.  Like waking up this morning to JB cooking breakfast for everyone, and Nathan and Aiden cleaning the kitchen.  Like running them to band, and hearing Emma say this is awesome.  Or seeing their faces on the field as they are playing their hearts out.  At one point, the music swells, the cymbals crash, and the full emotion of the moment hits me.  I'm on the sidelines of the field, choking back tears!  At this moment, I have a clear view of all of my boys performing in front of hundreds of people.  Together.  I wonder if they know the words at this point in the song?  It's Roberta Flack's "The First Time Ever I Saw Your Face".  At this moment, when the emotions show as tears, and I can see all three of my boys, these are the words:

"The first time, ever I saw your face.  

I thought the sun rose in your eyes.

And the moon and the stars were the gifts you gave, 

to the dark and endless sky my love"

I suppose it could be that music just moves me.  But I think its more than that.  I am filled with this sense of pride in my boys.  Grief for the little babies they were, but are no more.  Excitement for the young men they are, and the men they will turn out to be.  Sadness that my father, who loved them more than anything, isn't here to see his grandsons shine.  Frustration that my family that is here, is missing this.  Relief, that JB is home, and my family is whole, and together.  And then just like that, the music changes, and the beat goes on.  Only Emily and I, out of the hundreds and hundreds of people that witness this moment every week understand its significance.  JB started school and marching band three weeks behind everyone else.  He worked so hard to get caught up, and he did.  It amazed everybody.  Nathan, until recently, was cripplingly shy.  For him to perform on the front line in front of hundreds of people every week is a miracle in itself.  Now, its normal.  Aiden has always been the younger brother, and we know how the younger brother gets left out.  For him, its a chance to do something, be a part of something, with two of his biggest influences- his brothers.  I wonder if he even realizes the gift that is.  We do.  And after each performance, after they've left it all on the field, they find me.  They look at my face, and I theirs, and I nod and smile.  They know how proud I am of them.  Its funny, each one of them does that, looks for my face.  Maybe to see my reaction, maybe to seek my approval, or maybe just to have that moment.  JB usually says something like "Hey Baldy" and pats me on the back.  Now his friends do it too.  It's normal. 

When the crowds left tonight, and the boys changed, the show cleaned up, we were walking back to my truck.  The boys were picking on each other, in that joking brotherly way.  They were laughing.  I was smiling, and I was happy.  It was normal.  As we continued walking back to my truck, a cars started coming down the road, and JB, with hands full, grabbed Emma's hand, and put himself on the outside, and Nathan and Aiden followed.  They protected her.  Not against danger, but against the potential of danger.  They did this before I even had a chance.  They are all such good brothers.  That's hen it struck me- they are good young men too.  We got to the truck, and Emma got hurt.  JB got right down to her level, comforted her, hugged her, and she snuggled in his arms.  (I had to turn away cause the tears came again)  He's gonna be a good dad.  Reminds me so much of my father.  So much of me.  I realized tonight he's gonna be ok.

So I just told you about a few small moments today, that probably mean nothing to others, but to me?  They mean the world.  We'll look back on this summer, and someday, understand how it all changed us, and yet, normal has found us again.  Its a new normal, with some of the familiar comforts of the old normal.  But, still we are changed.  

For those of you who prayed for us, for my son, for my family, thank you.  Your prayers, encouragement, support, and kindness got us through.  For those of you who had to assign blame, pick sides and criticize, I am sorry that was your first reaction, but now that everything is said and done, we're fine.  God has gotten us through.  I'm going to sleep tonight in a full house, where a whole family lives.  Tomorrow, we'll clean up the house, make some chili, and just hang out around the house.  Like normal.  Still, when I close my eyes and drift to sleep, I will be happy and content, with joy and peace in my heart, that things are back to normal.  Drifting off to sleep, hearing my heart beat, I'll dream of my father again, and in my dream I will tell him how awesome his grandkids are, and he will say I know, I see it.  And the beat goes on.....

So This is Christmas....

Let me start by saying Merry Christmas!!!  Lots going on in the Howe household (as usual).  Just some quick updates, I am 5 moths post surgery, and doing fantastic!!!  Minor, very minor symptoms, that the surgeon is almost certain will continue to get better.  He is very pleased with the results, and even commented that I may just be his best work!  I also started a new job.  Still with the dialysis clinic, but now I work in the home dialysis program.  I LOVE it.  No more weekends, a normal schedule, and best of all, I love what I do.  Home dialysis has a special place in my heart because it gave my father so much freedom and control over his life.  I think about him often, and hope he is proud of my work.  I also enrolled in college.  I am completing my Bachelor's in Ministry at Antioch School.  Super excited, very challenged, and looking forward to accomplishing this.  Kids are all great, and on my other blog, I am working on a "best of" post, which will be some of the best, funniest, and most poignant situations with my kids.  They are fantastic!

I could finish up this post talking about the tragedy that happened on December 14th, in Newton, CT, but that's for another time.  It has effected all of us so deeply, so we are just leaning on God for understanding.  I am confident that on December 22nd, we will wake up, as usual, so I don't see the need for an end of the world post.  Instead, I figured I would write about this Christmas.  I have to admit, I was truly looking forward to this holiday season.  Financially, we are in good shape, physically I feel the best I have in 4 years, and spiritually, our faith as a family, and as individuals in in a really good place.  With that said, now here's a surprise-I developed a very bad attitude about this Christmas.  Worry about how long Chiari will let me feel good is always there.  Normal, everyday struggles with the kids about attitude, cooperation, not being so selfish, and picking up after themselves has worn my wife and I down.  The hustle and bustle of this time of year has got us exhausted.  The shootings recently, my son's first love and first heartbreak, and the huge emptiness left by not having my dad around, really has me thinking so, this is Christmas?  Where's the joy, the magic, the heartfelt warmth?  All the decorations we put up isn't helping.  All the Christmas movies and music we've been barraged with didn't do the trick either.  As a matter of fact, it just reinforced the funk I was in!  Nostalgia had me feeling like the best Christmases were ghosts of Christmas passed.  So, this is Christmas??

Then I realized, rather suddenly, that I fell into a trap that so many of us fall into this time of year.  I had trivialized Christmas!  Somewhere in all of the things I mentioned above, I lost Christmas.  See, for me, because of my faith, I understand that Christmas marks the birth of Jesus, but it is also about God's love for us.  What we do with that love is where the magic is.  That's where we find the joy, contentment, and heartfelt warmth.  To help focus on that, we've been working on a few things.  First, I am heading up an effort at church to take care of two families this Christmas, and it is going amazingly well.  We all drew names this year at home, and we are hand making gifts for the person we drew.  The kids grabbed onto this, and their gifts for each other are amazing!  I am more excited to see that than anything else on Christmas morning.  I am also speaking with my friend Benjamin Tubbs at our Christmas Eve service.  Last night, a group of people from our church hosted a holiday party for residents at a local senior living place, and it was touching.  We sang carols, played games, had coffee and desert.  I looked out and saw teenagers and kids sitting with elderly people talking, laughing, getting to know each other.  I saw one lady in our church spend the entire evening holding hands and consoling a resident who started the evening out crying.  I don't know what about, and I don't need to know.  What I do know, is that we were there to spread some light and love, and we did.  God showed up, and with him came the joy, heartfelt warmth, and the magic of the season.  All these ways we are serving others helped us get out of ourselves for a time. 

I took the kids shopping for Emily tonight, and had a great time.  Afterwards, we spent some time hanging out and learning a cool rhythm game using cups, of all things!  Tomorrow is our ugly Christmas sweater day at work, and it should be great.  Saturday, Emily and I are gonna finish some shopping.  Sunday is Christmas with Emily's family, and the day we will drop off the gifts we collected for the families we are blessing.  Monday, we will spend some time talking about God's purpose for Christmas, then have our Christmas Eve candlelight service.  Then, on Christmas morning, the kids will wake up, and we'll spend time together, laughing, sitting with each other in the light of the tree, and thank God for the day.  We'll cap it off with my family, and when we're home, in our jammies on Christmas night, we'll thank God for what we have, enjoy the feeling that comes along with helping others, and I think then, we will be able to say "so, THIS is Christmas!"

Wishing you all a Merry Christmas, and amazing new year!

Ok, I Got This...

Well, here I am.  5 weeks post op from my brain surgery.  Incision has healed nicely, although my perfectly shaped bald head is a bit misshapen in the back now.  (Easily hidden with hats). 

My emotions aren't so out of control anymore, and I actually had a pretty good week this past week.  Tried to pick up some of my normal schedule-coffee with friends, my walks are up to about 4 blocks, church meeting, bible study.  Handled it pretty well, until it hit me on Saturday.  (Well, Friday really).  I'm still very easily fatigued, and still a little unsteady on my feet, but getting better.  Cognitively, that's another story.  It still takes me a while to get out my thoughts.  Still slurring my words, especially when I'm tired.  Still feeling a little pent up anger, but getting better at dealing with this.

I did come to a realization though: I got this.  It doesn't seem so overwhelming to try to get back to normal.  Well, a new normal anyway.  Somewhere, somehow, last week, bits of me were coming through.  I found my smile again, found my laugh again.  Three weeks ago, that seemed impossible.  I find that I enjoy being around people again.  Three months ago, I hated the prospect of being around people.  I got this.

I have found that I have some amazing people in my life, and I don't know why I have never noticed that before.  I have also figured out that there are people in my life who are totally draining me.  That part has to change.  I'm not chasing anymore.  I got this.

I think the biggest thing I have realized, is that I will get better.  I will go back to work, and a year from now, this will all be long gone.  I don't know what my normal will be, but I know I am changed.  and for the first time in all this, I realized I got this.  I am actually looking forward to what's ahead.  So many people with illness, diseases, don't have that security, that optimism.  And the old standby rings true-there is ALWAYS someone worse off.  Also, I feel I should mention, I haven't had this alone.  I got this-but not alone.  God has been with me every step of the way.  We got this.

What do I do with the leftovers???

Odd title for a post, huh? 

Let me start by saying that I am now 13 days post surgery, and it hasn't gotten any easier.  I was great for the first 3 or 4 days, which I understand is quite normal due to the medications and anesthetic.  I find that the pain is becoming a bit more manageable now, but still have days where it is severe.  I am walking about a block a day, when I am up for it, but haven't had much energy for anything else.  All in all, surgery was a necessary evil, and now that it is over, I am feeling very overwhelmed with the leftovers.  No, not food in this case.  Emotions.  Things that I should have resolved a long time ago.  Also left is the damage that the last 6 months or so has caused in my life. 

Lets start with the emotions.  One of the ones that is still catching me off guard is anger.  I am usually not an angry person, but I don't even know how to begin to sort through the things I am angry about.  Things like all of the people who doubted what I was really going through.  All of the people who didn't know, because they weren't interested in maintaining family connections.  Co-workers who did nothing but talk trash, and create more drama and aggravation, to the point where I don't even know if I want to go back.  Anger with the doctors that missed this, or dismissed this, or treated me like I was drug seeking.  I find that most days, that is what I struggle with the most.  I am also feeling very saddened at times.  Sad for lost relationships.  Overwhelmingly sad again about the loss of my father.  Sad for the fact that even though I am surrounded by people, I feel insanely lonely.  I also feel so blessed!  So many people have supported us with prayers, visits, calls, emails, meals, (i don't think we've had to cook for two weeks!), and even money.  As we speak now, friends are planning a benefit to help us financially over the next few months.  We are truly loved, and although I will never be able to repay this, I will make it my life's mission to serve other people.  I have decided after my recovery, I will pursue full time ministry, which I truly feel is what God has called me to do. 

Another leftover I am having a hard time processing is the damage that this whole ordeal has caused in our lives.  The emotional toll on myself, my wife, and my kids break my heart.  To hear them all express their fears about me dying, or not being the same after surgery, are wounds that are deep, and will take time to heal.  We've also lost everything.  Our second vehicle, our checking, our savings.  Gone.  Even the money saved so far for our 15th anniversary trip-gone.  Luckily we have disability, and Emily is still working, but it's still going to be a long road to get back to financial stability.  It is very humble knowing that there are people who care enough, and care so much, that they are pulling together a benefit, and special offerings at church.  It's amazing, and this is truly how God works.  Aside from the financial losses though, there are damaged relationships, lost time, missed opportunities.  It's hard to try to put a list together of steps to begin to repair that.  I've also lost touch with so much that made me who I was.  How do I get that back?  And will I ever be that person again?  It's going to be a long road to get back to normal, and even when I reach that point, it will be my goal to get healthier physically that I was before. 

Now here are some leftovers that I can't get enough of!  I am so overwhelmingly proud of my wife and my kids.  The way they have rallied together, the way they have taken care of me, the way that they have even cared for each other has been amazing.  I have and AMAZING family!  I'm also loving the leftovers of care, concern, prayer, and encouragement I am feeling from so many people.  That is what makes all the negatives so bearable.  I have a huge amount of time leftover too!  I fill it with rest, which my body needs for healing.  I fill it with playing games with the kids, having great conversations with them,  cuddling with my Emma.  I watch them all too.  It's like I have a front row seat to watch how they are all growing, changing, becoming fantastic, exceptional people.  I don't think many people get that opportunity or perspective.

This isn't a pity party.  (okay, maybe a small one, but I'm entitled to that once in a while)  Alot of my readers are people who have illnesses that are "unseen", and alot of people with chiari have begun following my blog.  I want people to understand that everything I am going through, and no doubt thousands of others go through, is normal.  It sucks.  It hurts.  But we will come out the other side, stronger, better, and changed.  And that is normal too.  Too bad there aren't any Tupperware containers for life's leftovers.  But then again, some of them aren't worth saving.

Ball of Confusion

So here I am, two days before the surgery that I have been waiting a year for, and I am full of second thoughts.  This blog is mostly going to be about the Chiari, and the impending surgery, but I'm also going to share where I have found inspiration, encouragement, and peace throughout it all.

Last weekend really kind of started the emotions rolling.  On Friday, when I got the news that the surgery was in one week, I almost panicked.  My heart started racing, I got all sweaty, it was crazy.  You know what helped instantly? Talking to my mom.  Its funny, you are never too old to need your mommy.  My mother, brother, sister and aunt, and all my nieces came over that night for swimming and a cookout.  It was a fantastic time, and it so helped to have their support and their love.  It was something I missed.  Then on Saturday, it was my uncle's wedding.  It was a very happy occasion, he married his long time partner of 12 years, and if anyone deserves to be happy, he does.  And I cried.  And cried some more.  I think that was the trigger that opened up the flood gates.  I cried because I was happy for them, because I missed my father horribly, because I was heartbroken for my mother, because I was overwhelmed with everything that had been happening in my life.  It was a good cry though, very cathartic.  The Sunday at church, my friend Benjamin Tubbs sang one of my favorite songs, "Healer", and my friend Ken encouraged us, loved us, let us know our church was there for us, and then the whole church gathered around us, and prayed.  There were hugs, tears, words of encouragement.  It was amazing.

Monday morning was rough.  It was pre-testing day.  I was feeling overwhelmingly angry.  Angry with all the doctors that missed this and then dragged their feet for so long.  Angry that my supplemental insurance is fighting the claim.  Angry with all the people who criticized me, doubted me, and told me to get over it.  I posted something to that effect on Facebook, and got some nice comments back, but one stood out.  It was a post that one of my oldest friends from high school and the old neighborhood wrote.  Her name is Michelle Whitehead Hastings.  She lives in Arizona now, with her husband, and children.  Michelle is a beautiful person.  Fun, loving, devoted, inspiring.  She always has been.  Michelle is also fighting her second bout of colon cancer in three years.                                                                                                                     (you can read more about her and her story here:  michellewillwin.blogspot.com) 
I was perfectly happy in my pitty party.  Grabbing on to anger with all I had.  Until I read her post.  Here's what she wrote: "Send letters. When I'm actively advocating, I hear about ppl all the time that are blown off, only to be diagnosed at a later date. I encourage them to put words to paper, and let the drs know what happened. They are ppl too, and need to know that a mistake happened. By doing this, you might help.someone else from going thru the same thinh you're going thru. Just my two cents...."
Uuggh.  A punch in the gut.  Here was me, looking at, well, me.  Instead of realizing I was one of the lucky ones, who only struggled with this for a few years, compared to other people who have struggled with this for decades, I was basically whining.  Michelle, thank you for that eye opener.  And for those of you who don't know her, that is very much a piece of who she is.  She hasn't let her cancer beat her, and she has served more people, encouraged more people, and inspired more people, not only with her words, but her character, and journey as well.  So, that is my new goal.  Not sure how, or even where to start, but after my recovery, I will bring more awareness to Chiari Malformation.  


As of today, all preparations that can be made, are done.  I am feeling anxious, scared, (who am I kidding, terrified), yet blessed, loved, and ready for whatever may come.  


Emily will be updating Facebook often, and once I am better, I will write about the whole process.  With that said, thank you all for your love, prayers, and continued support.  See you on the flip side!!!

Don't Let Others Cheapen Your Growth or Minimize Your Victories

Let me start out by saying I have intentionally left out names and relationships as not to offend anyone.  Plus, the drama surrounding this situation is not important to the lessons learned.

This past Sunday, my son and I got to share our story.  Our struggles, our challenges, and how we ultimately overcame all of them to become close, and have a great relationship.  It was brutally honest, emotional, and felt very vulnerable for both of us to share our journey, but we did, and people were blessed by it.  I was blessed by it.  It's not everyday you get to share your struggles and help other people feel like they are not alone, and there is hope for any situation.  I felt hopeful, encouraged, victorious.  Until afterwards.  Two things weighed heavy on me.  First, some people who had witnessed how dysfunctional things were, who should have been there, weren't.  We didn't even invite people.  We couldn't.  Whether they don't agree with our faith, which was a huge part of our transformation, or there are strained relationships, or even people who refuse to see positive changes.  Although surrounded by a loving, accepting, and encouraging church family, it was lonely.  One of the things it caused me to do was to question or minimize our journey.

The second thing that weighed heavy on me, was that instead of celebrating the place my son and I were in, we had people close to us turn the message into a personal crusade for them, and in response to that, another person insinuated that I was filling my son's head with garbage, and that our relationship came at the expense of others.  To put finishing touches on it, I was informed that I have been the cause of heartache, disappointment, and uncertainty.  The kicker is, the person who spouted all of this, was coming from a place of anger, and only knew one side of the situation.  Not the whole picture.  Not even a sliver of what my family faces day in and day out, and have had to deal with-pretty much alone.  All this made me second guess everything.  I felt like it cheapened the growth my son and I have experienced.  I also felt like our victories were small, and very misunderstood.  This weighed on me for a few days.  Before it got to the point where I dismissed all the growth, and all the positive changes we have made, I had to really look at the situation for what it was.  I was letting other people's opinions and reactions tarnish the truth.  I didn't spend alot of time trying to figure out the motives of certain people, to be honest, I wasn't interested.  So once I licked my wounds, calmed down a little bit, I was able to put it all in perspective.

The fact of the matter is, your growth, and your victories are important.  They do matter, and they should be celebrated.  Even if it is only by you.  I have had to learn that I can't let other people take away from the good things going on in my life.  I have also had to learn that I can't expect everyone to support us, encourage us, and help us through the bad times.  Two very valuable, and life changing lessons.  So whether it is big or small, a step or a leap, or a small hurdle overcome, or a large wall overcome, do not let others take away from that.  For my part, I am going to make sure that I never cause anyone to feel the way I did for a day or two after Sunday.  Any step forward is progress.  Don't let others take away from that, or stand in the way of that.  Be victorious!!!

I'm Not Alone! I Finally Got to Speak With Someone Who Knows Chiari First Hand!

Let me just start by saying this is totally a God thing.  Some of you will blame it all on chance, and that's fine.  As I have said before, going through this journey with Chiari has been discouraging, lonely, frustrating, and just plain tiring.  Unless you have been through it first hand, it is a hard disorder to comprehend.  I finally got to speak with someone who does know first hand.  It was a young woman, my age, named Becky.  She was working as a full time missionary in Africa, and had to return back to the US early due to ever increasing symptoms, and much like me, a very quick deterioration.  We'll get to her story, and our discussion, a bit later, but for now, let me unpack how this whole thing unfolded.

Friday was the worst day in a particularly bad week for me.  It was agreed upon by myself and my neurologist that I shouldn't be driving anymore, and that I am unable to work for a while until we get some of the symptoms under control.  So as a man, and a father, that is a hard place to be.  I went from working two jobs, 70 hours a week, to not even being able to work a full work week.  Add to that the fact that I am not the same person anymore, and my wife and kids have all commented on this.  It kind of all boiled over on Friday.  I can honestly say, it was the worst place I have been in in some time.  My only prayer to God all week was that I really just needed to see Him in all this.  In any way, big or small.  I just needed to feel that He's got this. 

We have a great set of neighbors, who have lived next to us for 8 or 9 years now.  We almost never get their mail.  Well Friday, UPS showed up, handed me a package, and left.  I looked at it and realized it was my neighbor's package.  (Incidentally, He is a Pastor, and she works side by side with him in his ministry.)  Emily said she'd bring it over, and was talking to our neighbor, Suzanne for a little while.  Emily updated her on where I am in this whole process, and told her specifically the name of the disease I have, Chiari Malformation.  They have been in constant prayer for us.  My neighbor proceeds to tell Emily about a young woman whose mother, as well as herself, have know them for a while.  The daughter, Becky, has had a lot of the same symptoms as I have had, and just had a surgery to correct it.  Suzanne wondered if it was the same thing, and told Emily she would ask her next time she sees her.  (Which was not expected to be this day.) 

Fast forward to Friday night.  Suzanne's husband, James, (the Pastor), comes to see me at 8:30, and says hey, c'mon over to my house, I want you to meet someone who has had a similar struggle.  Sure enough, it was Becky, and her mom, Grace, who just happened to show up at their bible study that night.  (They do not regularly attend this bible study.)  As Becky and I begin to talk, it is indeed Chiari that she has suffered from.  Not only that, but we have seen two of the same doctors in two of the same practices.  We have both been told that one of the diagnostic tests they use, a CINE MRI Flow Study, were in normal ranges.  We were both put in this waiting cycle, ruling everything else out, and basically, waiting for the neurosurgeons to decide our lives were impacted way too much before they would do the surgery.  Then she went to see a third surgeon, Dr. Krishnamurthy.  (She passed over him once before because he was in the same practice as her first consult.  I passed him over as well for the same reason.)  He was also recommended to me before by a former co-worker.  She went and saw him, and within a week, she was in the hospital, having her surgery.  Aside from that he was an EXPERT in this disease.  He even studied in Germany for a while to learn the best ways and procedures to treat this.  Needless to say, I will be speaking with his office Monday.

Becky is two months post op, and although the recovery has been long, painful, frightening, and worse than she could have imagined, her Chiari symptoms are gone.  She feels great appreciation for this surgeon, who was kind, compassionate, and understanding, especially after two previous surgeons were dismissive and cold.  She is well on the road to recovery.

Being able to speak to a real, live person, comparing symptoms, emotional changes, and discouragements, was amazing.  I realized I am not alone.  I wasn't crazy.  There was indeed someone else who knows exactly what I have been going through.  I was encouraged, re-energized.  Ready to face this head on again. 

Now to put this in perspective, 1 in 10,000 people are affected with this.  In Central New York, there are roughly 25 neurosurgeons, and we saw the same ones.  Some of the comments they made, were made to both of us.  We both had a false negative on one of the tests, and the surgeon that did her surgery, doesn't even use that test.  We have been living next store to our neighbors for 8 years.  That's 2500 mail delivery days, and we've only gotten their mail a handful of times.  Yet this day, we got their mail.  It was Suzanne who put the pieces together, and then this young lady shows up at their bible study, right next store, on the same day that I am at my lowest point.  Divine appointment?  I think so.

Becky an I prayed for each other, exchanged numbers, and agreed to keep in touch.  (They even want to make sure they know when my surgery is, so they can visit, and support me and my family.) 

I have a new sense of strength, and maybe that's because there truly is strength in numbers.  And I am truly not alone.  I met a person who fully understood the journey that I am on.  It was amazing.  I will keep you posted

Save the Trees!!!

It never ceases to amaze me.  The amount of paperwork needed for what to me are simple tasks.  I mean think about it.  Whether its all the paperwork required for a new job, medical issues, insurance, DMV, right down to monthly bank statements or cell phone bills!!!  Does it really require 8 pages to tell me that my son texts a lot, and I have to pay you $170?  I think not.

Aside from the sheer amount of paperwork needed, there are the "important" documents we are supposed to save.  Tax forms from previous years, pay stubs, bank statements, blah blah blah.  Oh, I almost forgot! We also have to save every picture, poem, story, art project and report card from kindergarten on.  (And don't even try to secretly store them in the circular Rubbermaid file-I assure you, your children will find out, and be devastated because the crayola masterpiece you threw away was a milestone in their young lives.)

Now don't get me wrong, many of these typed up, colored on, signed, dated, and notarized dead tree parts should be saved, or at least the information on them.  In my own experience, in my own home, I feel like we are being over-run by papers.  Papers that are never where they should be when you need them.  Drawers, files, refrigerator, my desk.  And don't forget paper towels and toilet paper.  It's everywhere, and no matter how organized we are, with the constant supply of endless medical and insurance documents, all the papers that come with 4 children, and the junk mail we still get in this age of e-everything, I truly feel that one day, we will have to vacate the premises, due to a fire hazard.  Incidentally, is a paperwork fire considered a forest fire?  Papers are, after all, remnants and remains of many a happy little tree Bob Ross imagined and painted in some meadow.

OK, so I am being dramatic and sarcastic.  But here's my point.  In an age where we learn about our friends and family's comings and goings on facebook, and communication is largely in the form of texts and tweets, isn't there a better way???  Now I could go into a long, drawn out dissertation about how our mass consumption of paper products is leading to the melting of the polar ice caps, but I won't.  And I could launch into a rant about how we are destroying our beautiful, natural landscapes, (which, by the way I agree with.  Nature is a horrible thing to destroy,) I won't go there either.  No, instead, I will cry out to the powers that be, to save humanity from the see of paperwork threatening to overcome us.  Many people think an asteroid strike or even a zombie apocalypse will be our downfall.  Me?  I think we will be overrun with paper.  For the love of all things good people, save some trees!!!

No if you'll excuse me, I'm gonna go read the newspaper.

Great Expectations (or Something Like That)

Let me just start by saying that yesterday was one of those days where I should have just stayed in bed.  I felt like garbage right from the start, I have drastically cut back on my coffee intake, (those of you that know me, know that I should have been committed for that alone), and the stress of my illness and the limitations it causes, all came to a head-yesterday.

(Stick with me, it will seem like I am just venting, and in some aspects I am, but I also learned a very valuable lesson that could potentially change humanity as we know it!!!)

Let me skip all the details, and just say that I ended up arguing with just about everyone yesterday.  All of that led me to a very startling conclusion:  I expect way too much from the people in my life-people I love dearly, and people I care about very deeply.  For those of you that know me, this comes as no surprise, but I love hard.  I feel hard.  And when I'm hurt, I'm wounded hard.  I'm pretty much an open book.  What you see is what you get.  ( I definitely got that from my father.)  Some of that is reasonable, and I would never change that part about me.  I am very passionate, and that usually serves me well.  Where it doesn't serve me well, is that I say what I feel, and I don't sugar coat it.  I'm not one for fluff.  If I complement you, I mean it.  If I am upset with you, you know it.  Not everyone operates that way.  So there is lesson number one.  I can't have the expectation that everyone will respond well to my form of transparency. 

So in the course of the chaos yesterday, I realized another thing.  I put expectations on people that either I have never even shared with them, or for whatever reason, they can't or don't want to live up to them.  How many of you do the same thing?  Its like someone heading to Vegas and blowing a ton of money, then being upset cause they didn't break even.  What did they expect????  Well, in some ways, I have done the same.  I expect those in my life to be encouraging, supportive, and even if they don't see my vision, to just get behind it.  I expect that if I see how something can be improved, everyone else should too.  I expect that just because I value something, everyone around me should as well.  (keep in mind I'm talking about people who are closely involved in my life.)  Now, some of these expectations are reasonable, and logical, but not always fair.  For instance, I have a tendency to be goal focused, and I just keep working towards that goal like a freight train.  I never take a look at what others are going through, and whether or not they are even capable of meeting my expectations.  There in lies the problem.  I expect too much, or don't communicate my expectations well, and I get hurt, frustrated, annoyed, disappointed when they aren't met.  So whose problem is it that my great expectations aren't met??? Mine.  (here's the part that could change humanity.)

What if, just a thought here, we learn to not expect so much.  What if we take our great expectations, and bring them down to attainable expectations?  That's the journey I am on.  Learning to expect less.  People are humans, humans are fallible, myself included.  I think I will be saving myself alot of headache, turmoil, and strife in my life.  (Let it sink in- it really is revolutionary!)

On a side note, I don't think we should lower our expectations of God.  (That's a whole other topic for another day!)

Oh, and in times of high stress, I wouldn't recommend cutting back on coffee.  I would imagine I looked and acted like some sort of gremlin, and not the cute ones!!!

My Brain is Falling, My Brain is Falling!!!

As some of you may know, I was diagnosed in October of 2011 with Chiari Malformation Type I.  I figured I would blog a little about what it is, how it has affected us, and what the ultimate treatment will be.

For starters, Chiari Malformation is most often a birth defect, but can also be due to a trauma or sever case of whiplash.  Most often it shows up in the ages of 20-50, and 90% of the time, it is found quite by accident.  Chiari sufferers usually go years and years without a proper diagnoses, and that is due to how little is actually known about the disease.  Roughly 1 in 10,000 people are estimated to suffer from this disorder, and although it hasn't been officially labeled as hereditary, it does usually run along family lines.  My father was diagnosed in his early 40's, had the surgery to fix it, and did very well afterwards.

So what is it?  Basically, there is a deformation in the back of the skull, called the foramen magnum, and this causes overcrowding of the cerebellum, cause that part of the brain to be pushed down out of the skull, compressing the spinal chord.  Symptoms range from sever headaches, neck pain, sever dizziness, numbness and tingling in the extremities, problems with balance, swallowing problems, ringing in the ears, and even fainting spells.  The surgery to correct this problem involves removing a small portion of the skull and the dura, and possibly removing the arch of the first two vertebrae.  This makes more room for the brain, and restores normal fluid flow around the brain.  This is caused a decompression surgery.  The surgery is about 4 hours long, and requires about a 5 day hospital stay, but often times require a 4 to 6 month recovery period.  ( My father did extremely well with his surgery, and went back to work 3 months to the day of his surgery.)

Where am I at in all this?  Waiting.  The neurosurgeons I have seen wanted to rule out any other possible causes for the symptoms I am having, which are severe, crippling headaches, chronic vertigo, constant ringing in my ears, and I have had several blackouts.  Most everything else is ruled out, and I have had more MRI's, CT scans, and other tests than I can count.  My neurologist is fantastic, and is working very hard to help me manage the symptoms, and now we wait for the neurosurgeons to ok the surgery.  (Hopefully soon, my work schedule has been severely effected, and so has our financial situation.)  This has taken a toll on my wife and my kids in an awful way.  Between managing my symptoms, doctors appointments, and now I can't drive, this has forced them all to pick up the slack in various ways.  Emotionally, I am not the same person I was, and both my wife and my kids have commented on that.  Sometimes we laugh and make jokes about it, sometimes we cry about it.  Most times, we take it for what it is.  We have found support in many places, our amazing church family, my grandmother Barb, who is always worrying about me, (stop worrying, we're getting through!!!), my in-laws who have taken the kids whenever we've needed, and even some of my co-workers have donated some time, covered some shifts, and have been overall patient with the limitations this has caused. 

Learning things about myself? Absolutely.  Learning things about my wife and kids? most definitely.  Frustrated and at times, ready to give up? Yes.  But we're dealing with it. 

Hopefully this brings some understanding to some, and some tolerance and support for others.  Since I don't often look sick, it is hard for many people to understand.  I have been dealing with this for four years and counting now, and have been told its was everything from depression, migraines, a pinched nerve, stress, grief, even a testosterone deficiency!!!

The best way to explain it is from another blog I read, (http://chiari-life.blogspot.com/), and goes like this:

"The first thing that comes to my mind is "But you don't look sick!?" Yeah, we get that alot. Chiari Malformation is considered an invisible illness because you don't usually see the symptoms on the outside.
Of course I look normal.
You can't see the pressure in my head.
You can't see that it feels like my head could explode at any minute.
You can't see that my hands and feet are numb and tingling.
I may stumble or walk into something, but I just look clumsy to you...You don't see my balance and depth perception problems.
You don't hear the ringing in my ears.
You hear my speech slurr or I trip over my words. You laugh, I laugh. But do you know why it happens? Does that come to mind when you hear it?
You don't see me almost black out from getting dizzy and lightheaded if I drive too fast over a hill.
(I know why I can't ride rollercoasters.)
I could continue to go on and on with the list.
I have tried looking at things from the opposite point of view. The other person can never fully understand what you are going through. They may try to relate by sympathizing with you over something they have gone through. "I've had surgery once. I went in to get my tonsils taken out"
Oh ok...not quite on the same plane as brain surgery. "So you're cured now that you've had surgery right?" No surgery is not a cure, just a form of treatment. "Oh."
People do not understand why surgery if its not a cure. What is the point of surgery?

 When I first had major problems I went back to my family doctor a few times for "migraines". Each time I was given a different medicine or something to try. Finally he ordered an MRI after I went in and couldn't turn my head at all. I was lucky enough to be referred to a NS who knew of Chiari and wasn't afraid to work with it. He has followed up ever since. I was diagnosed in 2003.
A lot of people go through several doctors, neurosurgeons, neurologists, and other specialists before they are diagnosed.
After diagnosis its a mixed feeling. You're relieved because you finally have an answer for what you're going through. But on the other hand....what do you do with it?

You barely understand it, how will anyone else? So you begin to tell your family and then your closest friends. Again...they don't really experience what you're going through. They know what you're saying. They don't feel the pain. It's hard to sympathize with the unknown."

I'm Back- and LIfe Goes On.....

     Wow, I actually lost track of how long it has been since my last blog!  Not that things have been uneventful, just lost track I guess.  So, here is a quick snapshot of my life over the last year or so:  The kids are great.  JB is a freshman in high school, and has become quite the musician.  He is in the marching band, and last year they came in third in the nation.  He and I have been jamming together, and its been great.  He has helped out with worship a few times at church, and that has given me some of the proudest moments.  He is making great choices, and really seeking out his purpose in ths life.  Nathan is in 6th grade, last year in the elementary school.  I can't believe it.  He has an old soul.  Quiet, gentle, kind.  He loves wrestling and he plays the viola.  He even got a medal for being selected to play in the all district orchestra.  Aiden is the life of the party! He is charming, funny, (very much like my father was) and sometimes- I wanna strangle him! (I'm joking!!!)  He has also taken up percussion, and is quite a natural.  He is excelling at school, and is still is the elementary school.  Emma is just a joy.  She seems to be the heart of our family.  JB has an amazing realationship with her, he's a natural.  He will be an amazing father someday.  Nathan spends alot of time with her, playing, laughing, and he's usually the first one she goes to for help.  She sings, dances, makes us laugh- she's so smart and beautiful.  Emily and I were just saying how much she is a part of all of us, and how our lives would all be so different without her.  My kids are amazing, and while God blessed us with them, Emily and I have worked very hard at given them a good foundation, and though many people have criticized us, and voiced opposition to how we raise our kids, they are living proof that we did something right!!! 
     What else...I'm still working at the dialysis clinic, and it is what it is.  I was diagnosed with Chiari Malformation in October of 2011, and much of my life has been doctor appointments, tests, and managing symptoms.  Surgery is inevitable, the doctors just need to stop draggin their feet.  More to come on that maybe my next post. 
     Family wise, things are wierd.  We all seemed to have grown apart after my dad died, which I truly didn't expect.  We all have our own lives, and busy schedules, and at first it hurt me.  So much so that I blew the holidays out of anger and hurt.  They are ok with how things are, so I just have to deal I guess.  Its funny, I do everything right, play by all the rules, and am a pretty stand up guy, yet with my own family, I'm the black sheep.  I'm settling into it now.  I just don't have the time or the energy to chase after people, and facilitate relationships that are one sided, especially now that I am sick.  I love them all dearly, and wish them all the best.  We still get together for birthdays, and some holidays, so I will have to be ok with that. 
     Emily and I are celebrating our 15th wedding anniversary this year, and I am planning a trip for us, as a surprise, and she knows none of it.  The suspense is killing her, but it will be amazing.  She truly deserves it.  She has put her life, her dreams, all on hold to be a mom and wife.  She is amazing.  She's a throwback to mothers from a time when life was simpler, and family was everything, not career.  She single handedly keeps this house and family running.  We've been through some awful times, but have always come out the other side.  Our faith has gotten us through. 

     So, while this was largely and update of the last year or so, there is a point to all this rambling.  Life goes on.  Kids grow and change, relationships come and go.  Life deals you ups and downs, yet through it all, life goes on.  And somewhere in the ups and downs, crazy schedules, changes, hurts, happy times, there is this place.  Its really kind of an inexplicable place- where just for a moment, you can feel this quiet peace.  Its a deep peace, in the soul, almost a satisfaction.  Sometimes it is in the form of an amazing kids concert.  Sometimes its in an outburst of laughter with all the kids.  Sometimes its just sitting on a swing in the backyard, watching, listening.  Other times its that moment before you fall alseep, and recap the day, or let your mind wander to a time when everything was perfect.  It is usually in the before sleep time, I think about my father.  Wishing that all the time we wasted at odds could somehow be reclaimed.  Telling him about how amazing his grankids are.  I still feel like in someways, I still get to spend time with him.  Then I fall asleep, wake up the next day, and wait for those short lived, little moments of peace.  In the midst of all this, life goes on...

Mind Control

This entry is definitely one of the more deep entries I have worked on. For a couple reasons. One, because it hits very close to home for me, and two, because it is something that I am trying so hard to impart to my children, especially my oldest son. What I'm writing about is controlling your mind. Actually, what is it that is controlling your mind???

When I became a christian, I quickly found out that there were things in my life I had to deal with. Behaviors I had to curb, a certain way to act. While I think all of it ultimately helped me, the motivation and means in the beginning were harmful. See, many times, with many christians, they never truly change things, yet preach and tell others what they need to change. This is why many people who are not christians question, mock, and view christianity negatively. People tend to think that christianity is a crutch, a weakness. I would offer the opinion that to me, it has been harder to live out my faith, keep my mind pure, and truly live for God, than it is to not live that way. It takes a certain kind of strong to not give into temptations, conform with the way society acts, and love those who either don't love you, or who are different than you. The thing is, society doesn't just react to christian living that way, society reacts to anything outside of the norm that way. My brother is a very committed straight edge. This means he abstains from alcohol, tobacco and drugs. After speaking with him about it, he communicated the same thing. More people question his decision, than support it. Why? Is it because he chooses to not be controlled by a substance? Is it because his convictions highlight others' weaknesses??? I think it is an issue of mind control.

Our society is big on conformity. Act this way, speak like this, look like this, believe like this. Anything outside of society's norm causes fear. What is, now think about this, what if our media, our advertisers, our government, our public schools are setting and influencing this "norm" as a way to control it's people??? I'm not talking about some great conspiracy. Why do movies and tv shows, especially on networks like MTV, have such an appeal to young people? Why not middle aged people??? Why is tobacco, and alcohol advertised in such a way that it is appealing to younger people? Why is music marketed the way it is, with concerts, flashy videos, bad language? It attracts young people. To me, like I said, it is all an issue of mind control. Young people are still formulating their beliefs, morals, and values. IKt makes them easy targets to corrupt.

I commend my brother for his decision, especially since addiction is very prevalent in our family. I'm glad he has decided to not be controlled by a substance. For me, and for my children, I am taking it a step further. We are working together to learn how to control our mind, control what influences us. If we fill our minds with junk, we will put out junk. If we conform to how society tells us how to think, we will miss out on bigger things at work. Many people think that religion in a form of mind control, and surprisingly, I would agree. Religion, church (in the negative sense of the word), are all forms of mind control. What I would argue is that living as Jesus did, following the guidelines the bible lays out, isn't about mind control. Its about living a life that is based on acting out your faith and beliefs, not just preaching it. It is about following a set of standards for your life that will bring you protection, blessings, and fulfillment.

When I choose to not watch a certain movie because of it's content, its because I don't want to fill my mind with things that will tempt me, make me feel certain things, or desensitize me to some of the horrible things that should shock all of us. When I screen the music my kids listen too, or the content they are finding on the internet, it's because I want their minds to be clean, pure, not tainted by what society dictates is normal, or right. The last thing I'll say is this: The bible says in Romans 12:2 do not be conformed to this world, but transformed by the renewing of your mind. Renewing of your mind-think about that. What does renewing your mind mean to you? It goes on to say that this is how we prove that the will of God is good. God is encouraging you to think! Renew your mind from outside influences, and what others think. Think for yourself! Discover for yourself, not through others, what and who God is. How do I keep my mind form going places it shouldn't?? ( I try to do this, not always successfully.) Philippians 4:8 tells us what to focus on. Whatever is true, right, noble, pure and lovely. Things that are excellent and praiseworthy, think of these things. I think society might be a bit better if we all follow these guidelines. I know for me, and for my family, we are really going to work at controlling out minds.

Who's teaching who????

I haven't written about my children for a while, so I figured I'd mention some things I learned from them lately. It's funny, we are so busy trying to teach them, and impart life lessons to them, that I think we forget that they teach us alot too.

Some changes that have happened at our house have brought about alot of change, and that is where I've seen some cool things happen. My wife went to work part time nights, and that means daddy has to be mr. mom for a while. (this has resulted in the frequent use of paper plates- I hate doing dishes!) Perhaps the first thing I have learned is that my wife definatly has the hardest, most tiring, most underappreciated job ever- being a stay at home mom!!! Anyway, this really kind of forced me to step it up, and help out at home more. It was actually very needed, because we were having some behavior problems with the boys. Nothing major, just stuff like not helping out, or taking responsibility for their things, alot of attitude with each other and with my wife, and typical boy stuff like that. This brings me to lesson number one. I think as fathers, we get so focused on rules, working, correcting, etc... that we forget to just be with our kids. Just spend time with them. After about two weeks, the boys had become so helpful. It got to the point where I didn't even have to ask them to help, they just did. Their attitude and respect towards each other had changed tremendously, and all of this started to carry over to when I wasn't home. They were being better for their mother too. It was an eye opening look into how much my presence, interest, and involvment in their lives, affected every aspect of our home lives. They needed to see me being more helpful around the house. Things have been fantastic!

I think another lesson I learned through all of this is that I don't give my oldest son enough credit. The kid is so talented and smart, it amazes me. I have made it a priority to talk with him, get to know him better, and reconnect with him. You know what I realized? He's got a good head on his shoulders. He's already thinking about college. He is starting to take school and music very seriously now. He has skills that will make him a great father, and alot of that came from the special bond he has with Emma. I was being so hard on him, that it was projecting behaviors and issues onto him that really weren't there. In lightening up, slowing down, and lisening to him, he's felt safe to come to me with some things he is struggling with. I never even realized he is still hurting from the babies we lost, or that he doesn't know how to connect with God, even though he desires too. He's also taught me that the examples I have set on dealing with grief, and loss, have set the tone for how they deal with it. We've had to work through some feelings of loss, sadness, and regret with the loss of my father. I showed them that I had to be strong, move forward, keep the family ok, but I never showed them that its ok to grieve too.

Another thing I learned from my kids is that we can't get stuck in places, feelings, or roles. My son Aiden was getting frustrated and lazy with some of his chores. It became so frustrating that he was getting punished for it. I finally asked him what is going on. He explained to me that just because he was the youngest doesn't mean I can't give him more important things to do. I was holding him back in essance, not letting him do certain things, or enjoy certain rewards for them, because I thought he was too young, or too lazy. I was expecting him to fail at things before I gave him a chance too!!!

And then comes Nathan. His heart is so beautiful. He hugs me everyday still, and even though he can talk your ear off, he needs that time, that attention. He's the one that has kind of forced me to slow down a bit. Funny story, after my father's death, my aunt gave me his chess set. It's a really nice one, and when I got it, I cleaned it, polished it, and then put it away, out of sight. One night Nathan asked me to play chess, and I said we can't, some of the pieces are missing from the boy's set. He said what about the one that was your dad's? I looked at him like he had suggested something outlandish, and said we can't play on that one, it was my fathers!!! He looked at me kind of confused, and said dad, why did you take it if you weren't gonna use it? He was so right! I was stuck in the emotions and grief that came with my father's death. It seems silly, but that chess set became a symbol. Something out of reach, inaccessable, kind of like my father. It was a very profound moment for me, and it really helped me put the grieving process in perspective.

And then there is my Emma. She makes me so happy. I have come to realize that despite my protest, she is growing up. She is speaking so much now, making decisions on her own, expressing herself more, and is even potty trained!!! It kind of grieves my heart because I so love our times together, and our dances, and our songs-and someday, those will all be memories. Perhaps the greatest lesson I have learned lately is that time is moving forward, whether I like it or not. These last few months reconnecting on a deeper level with my kids has been great, and when they are grown, with families of their own, I'll be glad I cherished every minute!

Family First

So in my last post, (i know, it's been a while), I said I'd talk about some of the things my father communicated to all of us on his deathbed. We were very blessed to have the time to say goodbye to my father the way we did, and he communicated some very clear things.

One thing my father said over and over again was family first. That's become our family's kind of motto since he passed. He reminded all of us how important that was, and that no matter what, it was always us-my family. He told me to be strong, and be there for everyone. (Tall order dad, but thanks for challenging me!!!) He begged me to fix my marriage, fix my relationship with my oldest boy. He said over and over again, he loved us, and we meant the world to him. And as if to pass the family first idea to the next generation, he begged us to never forget him, never let the kids forget him, and tell them everyday papa loves them.

His passing and the way it happened was amazing. Just proved that when it comes to my big, crazy family, we get it. Family first. My dad's sister Lisa had been living here for a few months now, helping us care for my dad. She made it her mission to be there for us. Whether it was to watch he kids for my sister and I, or take care of things at my parent's house, she was there. There were times she put aside opportunities to be with my dad, for us. She even stayed overnights with my dad in the hospital so we could rest. I mentioned in my dad's eulogy that she was sent here for such a time as this, and I meant it. She was such an important part of the whole ordeal. She had our back. Then there was my aunt Missy. She was there by my dad's side when we needed a break, or to eat, even grab a cup of coffee. She cried with us, hugged us, talked to us, and was there. Even after he died, she was there with us just for encouragement, memories, and support. My aunt Cathy was amazing too, truly a rock for all of us. She put aside her grief, her hurt, and held us up. She had a special relationship with my dad, so this was difficult for her. She stayed for a week after he died just to make sure my mom and us kids were ok. She helped us pick out flowers. We even had a very silly afternoon with her, my aunt Lisa, and my brother and I, picking out dress clothes, pictures for the funeral, and just laughing and being there with us. Even now, though hundreds of miles separate us, she still has our hearts. Through the miracle of the Internet and facebook, she keeps in regular contact with us, sending us love, thoughts, and bits of encouragement, all at the right time. I wonder of she'll ever know how much all of that meant. My in-laws handled so much planning for us for the reception after. We didn't have to worry for nothing- they took care of it. My mother in law, father in law, and sister in law and I spent a couple hours the morning of his funeral just talking. I so needed that. Even my grandma Barb gave me the chance to cry and grieve, making sure I felt her love and support through the whole thing, right down to helping us with the reception hall. Right down to family that has been separated by life, distance, and years. My dad's cousins all brought food too!!! It was amazing.

It's almost like my dad planned it, all of it, just to make us further understand his point about family. Not only did everyone come together to honor my father, but so many people held us up, supported us, and put us first. My family first. OUR family first. My mother, sister, brother and I were able to grieve, plan, cry, laugh, feel love, and at times do nothing, because everyone in my father's life understood family first. I am truly blessed to have the family, extended family, and friends I have. And to my aunts, thank you all so very much for the part you play in our family.

"A Cure Was Not to Be"

"God saw you were getting tired, and a cure was not to be, so he put his arms around you, and whispered "Come to Me". With tearful eyes we watched you, and saw you pass away. Although we loved you dearly, we could not make you stay. A golden heart stopped beating, hard working hands, at rest. God broke our hearts to prove to us, He only takes the best."

This is the poem we selected for the back of my father's memorial cards for his funeral. It was so fitting, perfectly describing him- someone with a heart of gold, full of joy, and always hard working and hard playing. The picture above is so symbolic of who my dad was as well. Full of life and vigor before he got sick, having fun, laughing. One of the things my father requested was that we remember him, and make sure his grand kids do too. So, the next couple of blog entries are for just that-remembering him.

In this post, I want to tell the story of his death. To many it may not seem a way to remember the good, the life, the spirit that was my father, but after reading the story of his death, you will know so much more about my father, just by the way he spent his last weeks. I will post some of the things he told us before he died in my next post, and some of the lessons he passed on to all of us in another post.

My father was admitted to the hospital on October 12th, for having blood in his dialysis fluid. This was after a year that included open heart surgery and valve replacements, surgical removal of cysts in his neck and groin, a bypass in his leg, and ultimately amputation of one leg. His health had deteriorated rapidly the past summer, and this hospital trip was after three days of not being able to get out of bed, and months of not eating. In hind sight, I think we knew he was not going to come home, and by some of his actions and comments, I think he did too. The doctors determined that he had a severe infection in his abdomen, (peritonitis), and the infection was in his spleen, his blood, and his heart valves. Even if he could beat the infection, the damage to his spleen and heart valves was so severe, that the doctors would not operate because his chances of survival were slim. For a couple days after the diagnosis and prognosis had been given, he was in and out of lucidity, so my mother was faced with the awful task of deciding what treatments to stop and when, and when to put him on comfort care.  Luckily by that Saturday, he was awake, and with it enough to see some family members and friends who had gathered at the hospital. (We had spent the previous days contacting friends and family to let them know my father wasn't coming home from this one.) He also got to see his oldest two grandchildren that day, JB, my son, and my niece, Kailee. He was laughing, joking, being a wise ass- just like usual. Everyone went home, and I stayed the night. My brother, sister, and aunt and I had been taking turns. I thought he was sleeping, and I leaned my arms and head down on the bed rail. He placed his hand on my head, and touched my face. I looked at him, grabbed his hand, kissed it, and said I love you. He said I love you too, and asked if my Aunt Cathy, his sister and law, had made it in from Virginia yet. I said no, she will be here tomorrow sometime. He then told me he was done. He was going to wait until she got here, and stop dialysis treatments. I held his hand as tight as I could, and said okay. I am not leaving your side. I'll be right here. He protested slightly, and said he didn't want me to lose my job. I let him know my work was being so great throughout all of this, and gave me all the time I needed. I held his hand until he faded back into sleep. I have to admit, I was somewhat relieved that HE decided it was time. It spared my mother from making an awful decision.

The next day, he spent the morning talking with us, laughing, fading in and out of sleep. We talked about good times, funny memories. He was surrounded by his family, and his best friend. My mother, brother, sister and I were right there by his side. When my aunt Cathy arrived, he broke down into tears, and said he couldn't do it anymore, to which my aunt, always a rock in our family, said with such bravery and composure, "Then don't. You don't have too" That began the process of my father choosing his path on his journey through death. He said some very important things to all of us, and requested some very important things of all of us. (I will talk about that later) That night, he stopped all dialysis treatments, as well as any extra measures aside from comfort and his medication to sustain his blood pressure. My brother and sister spent that night with him.

The next two days were filled with much of the same- in and out of sleep. His nurses were fantastic, and that is for lack of a better word. When he was awake, he told us all how he loved us so much. He would make wise cracks, flirt with my mother a little. Then on Tuesday evening, the 20th, he decided to stop the blood pressure medication, be taken off all the monitors, and be moved into a palliative care room. I had gone home to get some rest, and came back up around 8. Within an hour, everyone else had gone home to rest. My dad was agitated, and not making alot of sense at this point, but he was not in pain. Throughout the night he remained in an agitated state. We increased his pain meds, gave him frequent breathing treatments. and anxiety medication. He talked through alot of statements, and conversations. Ones that didn't make sense to me. but it was him reliving situations and activities that were comfortable and familiar to him. After not recognizing me for most of the night, around 2:30, i was holding his hand. He looked right at me, and I at him, and I said Dad I love you. He said I love you too. At around 3:15, he changed. He wasn't fighting for breath, and his eyes were distant. I called the nurses into the room, and helped them clean him up a bit. They advised me to call my family so I did. After getting off the phone with my brother, the nurse said you should come back in the room now. I went in, and knew he was dying, right at that very moment. I grabbed his hand, kissed his forehead, and said "I love you daddy, you don't have to fight anymore". As I sat there, beside his bed, I watched his breathing slow, and then actually saw the pulse in his neck stop beating. Just like that, he was gone. No sounds. No gasps. No last breath. Just silence. Just me and my father, alone in silence. It brought me great comfort to be there, and hold his hand as he entered into eternity. And it was fitting. Many of you know my father and I had a strained relationship for a long time, so this was like coming full circle. I was honored, and felt it the utmost act of respect, to be there as he left us. My family arrived shortly after, and we all said our goodbyes.

There are so many amazing, blessed, Divine moments in all of this. My father chose, after fighting a long, courageous battle, to enter quietly into the next life. He made his peace with all of us, and us with him. He knew beyond certainty how we loved him, and we knew how he loved us. Not only was it felt, but it was spoken. SO many families never get the opportunity to say goodbye the way we did. He controlled the when and how. That was important to him. He didn't die alone. He spent his final days with those who loved him the most, loving, laughing. He even prayed with me. (He prayed, I fell apart). He awoke with enough sound mind to make decisions we would have been devastated to make. He made requests, and clear directives as to what he wanted to happen. The whole thing was amazing. Profoundly sad, yet profoundly amazing. He was such a big part of our family. Truly the rock, the center. Definitely the strongest man I have ever known, and as if to show us all just how strong he actually was, and how much fight he actually had, we found out a day before he died, that the infection was gone.

The next few days were full of planning, and remembering. I have never felt so close to my family as I did in those days. With respect, honor, love, alot of laughs, and great admiration, his services brought together family and friends. I saw my mother as such a stoic, yet broken woman, holding it together for everyone else. My little brother and sister seemed to be adults all at once in my eyes. (Even though they had been adults for many years at this point.) As I gave his eulogy, I looked out and saw my family. I saw everything my father hoped and dreamed, sitting in front of me in my children and nieces. I saw everything that was important to him, in all the people that were there. I saw literally his whole life, laid out before me, and somehow, even though a cure was not to be, he was healed. He was whole. In every single person who knew and loved my father, in the family that was his everything, and in his grand kids, who he adored, he will live on.

RIP James E. Howe

May 18, 1960 to October 20, 2010

Taking Life for Granted

As you may have read by my last post, this rash of kids killing themselves because of bullying has really affected me. Not just me, but my wife, and my oldest son, especially. The three of us have talked about it much lately. Also, many of you reading this may know we lost two babies before Emma. (Lillianna and Sarah). That was a devastating loss not just for me, my wife, and kids, but for our family and friends as well. My family has experienced loss. A few of my cousins died as children. All of my birth grandparents have died. (It's amazing, God saw fit to meet that need by blessing me with another grandmother- Grandma Barb) We face mortality everyday with my father's failing health. You'd think that would be enough to make me, or everyone in my family for that matter, understand the value of life. I hate this about myself, but sometimes, I still take it for granted.

It's quite easy to do-losing touch with people close to you, mistreating those close to you, disregarding or disrespecting people we come in contact with everyday, and the list goes on. All of these ways point to one thing- not respecting the sanctity of life. Not loving others, for no other reason than they are created, as you were, by God. I think of how many opportunities to spend time with my family I've missed. How many times I could have supported them a little more, or spent a little more time with them. Instead of watching TV, I could have played a game, or went for a walk with them. As my youngest son turns 8, and my baby turns 2, I am ever more aware of how time is flying by. When it comes to my father, I wonder, have I truly shown him I love him? Do the people who I value and love the most, know that? Does my wife know how much she has changed my life? Do my kids know how much of a blessing they are to me?

I guess I am thinking about this a lot today because of work. I work at a Dialysis clinic. I initiate, monitor, and complete life saving treatments for patients who would die if this were not available to them. Aside from the tasks, I talk with the patients, listen to their complaints, fears, stresses, and sometimes, they tend to take it out on us. It gets stressful at times. It can be emotionally draining, dealing with needy people day in and day out. Also, in a high stress environment, there is also drama, as is the case anywhere. It kind of caught up to me this week, and especially today. As I was discussing the stress and aggravation with my wife, I was overcome with such a feeling of guilt. As I thought about this throughout the evening, Two things occurred to me. One, I chose this line of work, and two, how dare I take for granted, the fact that I have these patients lives in my hands, every treatment. It was enough to almost bring me to tears. I have the privilege, the honor, the blessing, to help others preserve their life, the very thing I take for granted almost every day. Then I started thinking about the petty things at work that aggravate me. And that is what they are, petty. While I am stressed about stupid, petty issues, my patients are stressed about life. How are they going to afford their meds? What about their rent, or mortgage, since most of them can't work? As a matter of fact, my parents included, most of these patients have lost everything.

I have started to address some of this lately. If I am working on projects around the house, I get the kids involved. Not exactly fun, but at least we are spending time together. We have been just having fun, playing games more often. ( Last Friday, we had a three hour game of monopoly!) I've made an effort to re-connect with people. Last Saturday, I went on a date with my grandma Barb. We went to the Casino, had dinner. Had great conversations the ride there and back. It was wonderful. I spent the whole night with my dad last time he was in the hospital. Just being there. I need to get better at verbalizing these feelings to those closest to me, but hey, it's a work in progress!

And as for work, I am truly resolving to never again forget exactly what it is my job does. Not for greatness, not for recognition. It is actually pretty humbling sometimes, especially the patient care part. Before I get agitated about petty things, I am going to remember the huge things my patients deal with every day. An extra minute, some kind words, some encouragement-that is what I will focus on. I truly believe it is an honor to do this kind of work, now my attitude has to reflect that.

Life is precious. We all have experienced loss. We all have opportunities to show others that their life matters. For me, I believe my work, my family, the losses and struggles we have had in our lives, are for a purpose. I think God has used all of it to help me understand the value of life, and the role we all have in affirming that in others. It seems to me I was born for such a time as this.

Unspoken Crisis

Its funny how sometimes things in our own life, and struggles we are facing from day to day are really put in perspective when you think of some of the struggles and problems others are having.

My father is in the hospital again, more dead tissue to amputate, more problems with his arteries due to the vascular disease. Still severely malnourished. He's just not doing well. I have spent alot of time with him over the last few days, and the frailty of life has really been driven home for me. He remains in good spirits though, and still made us all laugh a few times. As you can imagine, this has consumed alot of my emotions, and thoughts. Until I read the news online today.

I read of a young man, gifted and kind by all accounts, who was videotaped while engaging in a very private activity. This video was the plastered on the internet, for all of his friends, fellow students, and even family members could see. He was homosexual, and of course this story polarized everyone. You have Christians commenting on how he was distraught over his sexuality, and you have the media saying the internet was responsible. Some blaming the people who secretly videotaped him, some blaming him, and yet others still blaming his parents, for not equipping him to deal with bullies. I was appalled, disgusted, and deeply sorrowed by not only the whole incident, but the level of intolerance and lack of respect for human life that came out of all of this. To me, there is even a deeper issue that no one is speaking of.

Pheobe Prince, 15, Asher Brown, 13, Megan Meier, 13, Jesse Logan 18, Carl Walker Hoover, 11, Jeheem Herrera, 11, Eric Mohat, 17, Jon Carmichael, 13, Ryan Halligan, 13......

These are all young people, kids really, who committed suicide due to out of control bullying daily. We live in a society where if you don't have the latest electronics, nicest house, nicest newest cars, you're not good enough. If you are overweight, you're not good enough. If your gay, straight, christian, muslim, rich, poor, there is always some where, or some group of people you won't fit in with. Some of you may disagree, but that is how the world is. That in itself is bad enough, that we can't love each other, tolerate each other, and respect the sanctity of life. I have very strong religious beliefs, but I could never imagine hurting someone, physically or emotionally, just because they are different from me. As Christians especially, we are called to be loving and serving others, not picketing at parades and funerals. We should be kind, and charitable to every person, not burning Korans, or turning our backs on those in need. Our churches should be safe, warm, inviting places for everyone, instead we have Pastors judging and condemning from the pulpit. What kind of role model are these kids that are bullying others seeing? When did it become socially or morally acceptable to torture someone who is different? Why can't christians love muslims, and be tolerant, and friends with each other. Whether you agree with homosexuality or not, what happened to loving and respecting the person, for the simple reason they are alive? A life given, and created by God? Why can't rich kids befriend poor kids, and speak love and charity into their lives? Our society is creating groups, divisions of people, almost like the cast system in India. We live in an age where information is available at a keystroke, yet there is still intolerance and ignorance everywhere. Gotta have this, gotta be this, gotta wear this. It's sickening, and then we wonder why our kids are killing themselves, or others.

My middle son Nathan is very kind, very caring, and very sensitive. He's all about family, and loving people. Always finding a way to show care to others. His dreams are simple- to stay close to home, get married, and have lots of kids. (he wants 5!lol). Now, here's the other things about Nathan. He doesn't get caught up in the must have clothes, or toys. Whether you are old, young, gay, straight, cool or not, good looking or ugly, he loves you and respects you for who you are. Why can a child do this, but not adults? In reading these stories of these suicides, I though of how gentle and kind he is, and how others may want to tease him for that. I got all choked up, and immediately started looking into ways to equip all of my kids to deal with these situations. The first step is communication. My wife and I will talk with all of them to find out what is going on in their lives. The next step is our kids need advocates. Any issues at school? Call the school, and don't stop calling until the issue is resolved. Demand action. Set a clear and concise message that bullying, on any level, in any form, is NOT okay. Find out if your kids are bullying, and teach them that is an unacceptable behavior. We need to hold our teachers and administrators accountable. They need to step up and deal with bullying head on, instead of dismissing it as part of the usual teenage experience. Honest, frank discussions about bullying need to happen in school and at home, instead of just sweeping it under the rug, or ignoring it. In New York state, there are now laws against bullying. A step in the right direction, but how will they be enforced?

While I can rest assured that my kids will be fine, and I will defend them and support them to the ends of the earth, my heart grieves for these kids who don't have anyone in their lives to fill that role, or the kids won't speak up for fear of retaliation. Who will protect these kids???

A Bright New Day

Before I begin, I want to thank everyone who sent me encouraging messages and texts in response to my post yesterday. Especially my Gramma Barb, My Auntie Lisa, and a friend from way back when, dare I say high school, Melanie. Your words were all kind, encouraging, and reassuring.

So, yesterday, as you could tell if you ready my post, was a pretty awful day. It's funny how God knows us. Every part of us, even our frustrations and hurts. He responds by providing little glimpses of hope and beauty. Sends events our way to help us get over the little bumps in the road, or even better, the words of great people, speaking into our lives. Today dawned a bright new day, in many ways. First of all, the sun was shining all day, with a nice breeze. I love days like this. Its almost like the warmth of the sun touches our souls, and the breeze is like God whispering to us. I love the outdoors, and days like today remind me why. Aside from that, things went fantastic today. I said in yesterday's post that it seems none of us, (me, my wife, my kids) have been working together as a team. Today I got a glimpse of how that really works. Between Emily helping me with getting the tiles cut for the floor project, and JB helping me last night, we got the tiles in, and it looks great. I really appreciated JB's help, especially because it was unsolicited. I didn't have to ask him, he just started helping. My father in law was coming over today to drop off a ladder for me to fix the gutters, and ended up staying for over an hour. He helped me adjust the garage door, which has been a thorn in my side since we put it in over the summer. We talked alot too, which was cool. We don't have many times like that. He asked about my father, and how he was dealing with all of this. It reminded me just how many people actually do care, and are pulling for him. I had a meeting with some great guys from church, ate dinner with the family, and watched some of the yankees game on tv. My wife gave me a kiss and said thank you for all I have been doing around the house. That meant alot to me. I took my practice test for my dialysis certification, and got an 84. All simple, run of the mill things, but that's what I needed today. Simple things to go right. Later in the evening, I went to sit outside and do some reading. I hear Emma at the front door yelling "Daddy, Daddy", so I went to see what she wanted, and she just wanted to come outside and sit with me. As we were sitting on the swing, her curling her little body up in my side, she noticed the moon in the sky. She said all excited " what's that", with her cute little gasp. I said the moon. She followed it up with "pretty moon". After a few seconds of silence, she said "I love you". We just sat on the swing for a little while, cuddling up, enjoying each other's company. It was a perfect ending to a great day.

The whole day reminded me that each day, we are given a clean slate. Each day is a brand new canvas, to paint on it what we want. Each day, regardless of how we mess up, or respond to struggles, God gives us new mercy, for a new day. It also helped me realize that once a day is done, its done. We can choose to carry all of our junk, stress, hurt, frustration, anger, etc... into the next day, but if we always do that, we may miss the chance to enjoy a bright new day.

UGGGH!!!

I wish I had something profound, inspiring, or even remotely positive to write today, but I'm fresh out. I think we're in one of those times when it seems nothing is right. We can't get ahead of the curve on anything, and the more we pray about troubles, more surface. My father's health is still failing. He was doing well for a while, but now it seems as though they are going to have to amputate his other leg. It's frustrating, tiring, and leaves us with an all consuming worry. My wife has been his main caregiver/helper, and has just recently begun to back off a little because things are strained at home. I can't help as much as I'd like with my father, so that's tough. He's been struggling with all of this too, although he doesn't talk about it much. So we worry, we stress. How are we going to handle the care he needs? What about things at home? How is he going to deal with losing his other leg? Will he even survive another surgery? All answers we don't know, and all things out of our control.

Then we have the usual issues at home. It seems like none of us are working together. We have the same issues over and over, and we hit the same wall over and over. The more we try to improve, the more little things get in the way. Its so frustrating. Exhausting too. Even today, as I was trying to work on installing a tile floor, it was one obstacle after another.

I know that sometimes my expectations are the cause. I expect support end encouragement from extended family, but I usually get stress and hurt feelings. Even on my birthday, we cooked dinner for everyone, and Emily and I ate with the kids, while everyone else ate inside. Barely talked to my mother or my father, and didn't get so much as a card. I expect that even though we are sacrificing financially to have Emily stay home, that maybe a nice house, and safe, comfortable times at home would be the norm, but that's not the case. Between dealing with the kid's issues, not being home enough to get stuff done, and the constant worries about my dad, and money being tight, even home isn't safe, comfortable. Then, I get frustrated, and angry, and the whole thing becomes a mess. Uggggh!

So what do we do. Well, the only thing we can do is keep going. We'll deal with each obstacle as it comes, deal with the cards dealt us, and go on. I gotta believe though, that some day, some how, it will be our turn to come out on top!

The Innocence of Youth is Lost

I was watching Prime News on Headline News tonight, and was mortified by some of the stories I saw. One of them was two thirteen year old girls fighting over shorts. Full on fist fight, tackle to the ground fist fighting. Were the parents around to stop it? A mom, grandfather, and several other adults were not only there, but they filmed it. In the video, when the girls broke it up, they were heard yelling "round two, get back in there", and things like that. Then, the video was posted on youtube. (The adults in the video were eventually charged.) The next story was about a 12 year old autistic boy who was attacked by three 13 and 14 year old boys. They boy stood there, because he couldn't process what was being done to him, and took punch after punch, kick after kick. All while other kids were video taping it, yes for youtube, and still other kids, laughing at him.

Although these were severe cases, they are a startling look at the fact that innocence is lost in today's youth. I see this everyday with my own 13 year old. My wife and I correct his behavior and his attitude, but we are fighting a losing battle. While we try to instill good, moral, behavior and decision making, it is being undone the minute he watches tv, gets online, or gets around other kids. His reason for not changing his bad attitude and behavior- because if he becomes a "goody goody" as he puts it, he'll have no friends. People will walk all over him, and he'll be a target. How sad is that. I have to tell you, after seeing some of the things today's youth does, and says, and watches, and how they act, I would be ok with him not having friends. This is all a really good argument for homeschooling. Today's youth seems to be all about themselves. Lacking kindness, generosity, and respect. Perhaps we created this with our need to have mentality, and our immediate gratification society. Where are the strong fathers, setting good examples and behaviors? Where are the strong role models? I don't mean to generalize, but where are the good kids??? Where are the kids longing to make a difference in the world? Where are the kids wanting to live above the crap and garbage our world is peddling? I don't mean to generalize, but are they out there??? Teen pregnancy is on the rise for the first time in decades. Drug use is on the rise. Teen drinking is on the rise. It is scary.

I love kids, and always have. I have always been an advocate. Most of my ministry has been to kids and youth. It absolutely breaks my heart to see our youth in such a state. I will continue to fight for my kids, teaching them to be good, moral people, no matter how different that makes them. I will continue to pray for all of today's youth, they need it. And to anyone with kids and teens in their lives, reward good and moral behavior. Show them that is what matters. Be examples of that kind of living to them. It is hard, but it pays off, and I know for me and my wife, we with four kids, we have a lot at risk.